80 degrees and sunny. I had not noticed either fact that day. At the moment I was shivering, yet covered in sweat as I sat naked under a paper gown getting poked and prodded by yet another doctor. I had just spent the last hour in the doctor’s office going over every detail of my medical history, personal history, family history, current symptoms, well being and state of mind. Now was the moment of truth…the exam!
She checked my pulse, took my temperature, ran her hands around my body, listened to my heartbeat, all in a very quick 5 minutes. She wrote some things down on her chart, took a beat, removed her stethoscope and gently put her hand on my slumped back. My body stiffened at her touch, yet melted from exhaustion. Was this it? Did she find it? A lump, a bump, a swollen something that would explain years of unanswered, unexplained illness. Was it cancer? Was I dying? And if so, how long did I have?
I didn’t even care about the facts at the moment. I was just so damn happy to finally have some answers. I actually managed to smile in the face of my pending doom as I looked up at her with hope. She smiled back sadly and said, “Jennifer, do you want to kill yourself?”
I stared at her blankly. I had no words. Tears just rolled off my cheeks. I couldn’t believe what I had just heard. Did she actually just ask that? I told her I was depressed, but that was because I was sick all the time. Wouldn’t that depress anyone? Killing myself though? Was that what was written on my face? My mind raced and my insides screamed.
Did I not just describe an hour’s worth of what have now become debilitating symptoms? Symptoms that I have carried with me through my life like a weight, which now felt like 100lbs. Sleeping close to 13 hours a night and waking up exhausted, constant stomach problems, raging panic attacks, joint pain, knees buckling, extreme weakness, yellowing of my skin, extreme sinus headaches, numbness, tingling, and hair and nails so weak they would just break off from a simple touch. Not to mention the huge lump that was now protruding from my neck, just under my ear.
In spite of all this though, I had managed to become a self made, hard working, award winning actress. Almost 15 years as a working actress in a god forsaken, takes no prisoners business that would make the strongest man crumble. Worked hard and managed to own my own home by the age of 25. And at this point of my life I was a friend, an aunt, a godmother, a sister and a self respecting 35-year-old women. I had traveled to foreign countries alone. I have had good relationships and bad. Cried, learned from mistakes, got back up. I’ve never fallen in to the evils of “Hollywood” – never had an eating disorder, I worked out to stay healthy, and never took a drug in my life. I learned to meditate and developed a strong spiritual center. I’ve been at my lowest and knew to count my blessings for what was, rather than for what was not.
At that moment though, it was too hard to count blessings when you’re too tired to even see. Did this sound like a person with a weak constitution? Someone who would kill themselves and take away everything I had worked so hard to attain? Are you suggesting my symptoms aren’t real, like so many others before? That somehow this is all due to stress or maybe some kind of imbalance?
My sister and I – always happy around the table.
I’ve been offered anti depressants, Valium, Ativan, Klonopin, enough to start a small drug ring. I had been tested for MS, Lupus, Lyme Disease, hepatitis, rheumatoid arthritis and a slew of others. All of which turned out to be negative. Not to mention the numerous colonoscopies, barium enemas, MRI’s, CT scans, x-rays, nerve tests and so much blood taken that I could have filled a river’s worth.
I’ve been told I had Epstein Bar, irritable bowl syndrome, chronic fatigue and treated for an fathom parasite that was never actually found. All of which I was given some sort of medication and a suggestion to see a therapist. That all this could be some sort of depression.
How is it when doctors can’t figure out your symptoms it somehow becomes your mind? I was so tired of explaining and begging people to help me. I felt so ignored! I’M NOT CRAZY! PLEASE DON’T SEND ME AWAY WITH A PRESCRIPTION FOR VALIUM AND A NUMBER OF YOUR FAVORITE THERAPIST!! I DON’T NEED ANTIDEPRESSANTS, I NEED HELP!!!!!!!!! Nothing, silence, a small sigh is all that came out of me, that and tears.
There is something that happens to you when you feel unheard for so long. You die a little. I was physically, mentally and spiritually done. I was ready to take the obligatory prescription, along with the diagnosis of crazy and go. I was done fighting for an answer and proving my sanity. Then out of nowhere I heard a small voice say, “I need help. I need your help, please.”
The voice I barely recognized as my own. It was a vulnerability that I didn’t even know existed. I was begging for my life with as much energy as I could muster and I was laying that responsibility at her feet. She put her hand on my shaking hand, looked me in the eyes and said, “I will help you. I will find out what’s wrong.”
Maybe she actually heard me. It’s amazing how the human spirit works. Even though I had heard this phrase before, I somehow believed her. She took what seemed like 10 vials of blood, I put on my clothes, picked up my 100lb weight and went home and waited.
It was two weeks later when the doctor called and said that I had something called celiac disease. She said it was the highest count she had ever seen. A rush of adrenaline spiked through my oh so tired body. “They found it, I knew it, something was and had been wrong”. The second wave of adrenaline as what the hell is celiac disease? The doctor told me it was a digestive disease that had to do with gluten and that I needed an endoscopy ASAP. She immediately got my gastroenterologist on the phone with us and explained her findings. His comment when he heard what she had to say was “What? Really? I never thought to test her for that.” I was a patient of his for 5 years.
My head was spinning so much at that moment I never got out what I would have liked to say to my gastroenternologist of the past 5 years. I wanted to say something like this, “WHY THE HELL HAVE I NEVER HEARD OF THIS FROM YOU BEFORE”.
I had to pose for this picture before diving into my birthday cake.
We ended the conversation with a number of a nutritionist, instructions to stop eating gluten, and a must for procedure called an endoscopy. I was astonished, scared, happy, and perplexed all at the same time. I searched for years to find an answer to all my unexplained ailments. I asked questions, good questions to the professionals.
I read everything I could about health and nutrition. I even started eating macrobiotic and vegan at one point. So I was aware of the importance of food and health being related. Why had I never even heard of this, celiac disease??? I immediately went on the internet and what I found kept me glued to the couch for hours. I read that I had an auto immune disease and what was happening to my body when I ate gluten. The entire day and the next I scoured the internet for “how to treat” and “what to do next”.
For what little I did find, it all said the same thing – eat gluten free. What the hell did that mean?!
I couldn’t comprehend in my brain that the left over pasta in my refrigerator at the moment was now done. Forever.
I got in touch with the nutritionist. She spelled it out a bit more and told me to print out a list of what I couldn’t have and stick it to my refrigerator. She also said I needed to cleanse my house from anything gluten or that has touched gluten. She recommended I get checked right away by this “awesome doc” in New York City who specializes in this. But it takes weeks, maybe months to get in. Luckily she knew him and said she would make a call. She recommended I get on some Vitamin D and suggested that I might have some slight detox from it.
Detox…really?
Immediately I ransacked my house. Pots, pans, toasters, the entire contents of my cabinets was now in the trash. My kitchen was empty except for the print outs of what contained gluten. These papers that were suppose to go on my refrigerator, covered not only the fridge but 3 cabinets along side.
All my products- soaps, lotions, shampoos, toothpaste, all seemed to have this gluten stuff in it.
What was left? Was there anything out there that didn’t contain this stuff? And my search started.
I will just say this, the next 4 months of my life were absolute hell. Trying to navigate through this new world was debilitating. Not to mention the “slight detox” the nutritionist said I might have? Horrendous. From tremors so severe my entire body would move. To brain fog, exhaustion, night sweats, extreme panic attacks, light sensitivity, joint pain, headaches and then neuropathy.
All of which lead to a phone call to yet another doctor. None of whom gave me answers. It was when I was taken to the hospital for what seemed like a severe allergy reaction to god knows what and the nurse asking me what was going on and I said I think I’m going through a detox from celiac disease. She said “well did you take your medication?”. I looked at her with my shaking body and quivering voice and said “there is no medication for celiac disease.” She replied “Oh yeah, right. Wait, what is celiac disease again?”
I was in a highly regarded hospital in Miami. WHAT? This is when I knew I was in trouble and I might be on my own here. It didn’t help when the Doc came in and said he would like to keep me over night to watch my blood pressure but couldn’t because he had nothing to feed me. THERE WAS NOTHING TO FEED ME IN A HOSPITAL THAT DID NOT CONTAIN GLUTEN?!?
As I laid there and sweat through my gown and the sheets I realized that if I ever make it through this, I would need to do something.
This site became an idea because if it will help one person feel understood, heard, justified or not alone, then it did what I wanted. You see, when I realized the serious lack of information out there and just the general disregard for this disease and the people that have it was great, I turned to you. I went and spoke to other Celiacs on forums like the one I hope we have here. They understood. I remember the first time I felt the neuropathy come on. I was lying on my couch and all of a sudden I couldn’t feel the entire right side of my scalp, then the right side of my face, then down my arms. Was I having a heart attack?
I was so tired of getting either ridiculous answers from Doctors or no answers at all, that I decided to calm myself down (although I was panicking) and google neuropathy myself. There it was, someone speaking about exactly that. It was another person dealing with celiac and she recounted the exact same symptoms I was having.
When I pressed on the link it opened to a gluten free celiac forum. My world changed. There were SO MANY feeling what I was, and suggesting what they did to feel better. That’s all we want. To feel better. To eat better. To have better options and to be heard.
I hear you and I am here to help!
It is my mission.
Ever Onward,
Jennifer Esposito
Thank God for Jennifer’s Way, can’t wait to visit her passion/BAKERY!!!!!
I have a 6 year old grand-daughter who was diagnosed with celiac disease and it makes me cry every time she asks me, “Can I eat that g POP-POP?” Of course I have to say no because it has wheat in it and then she drops her head and walks away from the other girls and crys. This horrible disease is distorting the personality of my little mommy. She has a beautiful voice but doesn’t sing much anymore because she tells me that she’s unhappy. How can I help her since she has so few diet choices since the majority of gluten-free food is terrible tasting. In closing, thanks for getting this celiac message out there. There must be so many people like us that can’t afford gluten-free food unless they do what we did. We as a family decided to cut out meals so my little grand-daughter can. Again thank you for letting the world know that there is hope for celiac patients. EDWARD SMITH
Hi Jennifer,..just saw you on the Daily Show,..Thank you for sharing this.
It is hard, especially the first year and I can’t even imagine being a child and not being able to eat “the normal foods”, but there are decent gluten free options becoming more and more available. Yes, they are more expensive, but there are good ones that don’t break your pocketbook. I’ve spent three years finding the good, the bad, and the ‘oh my, that is not even food’, so share what your granddaughter likes most and maybe some of us can help point you in the right direction for at least something that will make her smile and possible get that voice singing again!
My 21 year old son had celiac since he was two. We sent in a tupperware container to his school filled with gluten free snacks so he always had a special treat when others celebrated. When we went out to eat we always took gluten free crackers (costco has a yummy brand called crunchmasters) so he could enjoy the butter or olive oil served. We chose restaurants that catered to his special orders. Help his parents plan for outings so he always has something to eat. He now says he loves the current gluten-free “fad” because it is much easier to eat out as many people are aware of the issue. P.s., bake brownies with gluten free flour, they are delicious and freeze well- perfect to take along to birthday parties or picnics. My son’s friends would sometimes look wistfully at his gluten free snacks, but also understood that was the only dessert he could eat.
As i read your comment i cry a little inside. I have a 2 year old son who can not have a lot of what others in our house can. I found a way to change anything into something he can have, especially treats. If you would like to you may contact me at [email protected] and ask any questions. I may even be able to tell you how to change her favorite stuff so she can have it and taste good.
I watched you on Dr. Drew’s show. He acted more like a police detective than a TV show host, and he didn’t read up on celiac disease before the interview. I couldn’t believe that he suggested that maybe your symptoms were due to working too many hours instead of celiac disease. Then, he asked specifically what blood tests you took like he didn’t believe they confirmed anything. It’s uneducated doctors like him I’m used to dealing with. You’re lucky to have found doctors who know something about celiac disease. After Dr. Drew returned from a Caribbean vacation he felt like he contracted a tropical disease. It turned out he had prostate cancer. But, what if others blew off what he said and attributed it to him working too many hours.
Jennifer,
I have celiac disease, but I have never been tested for food intolerances. I looked more into the IGG allergy testing you had done and found that IgG is positive for all the foods we eat. This may explain why your test results was positive for everything you ate. Perhaps you don’t have leaky gut because other complications from celiac disease cause the symptoms you were having. My symptoms are similar to yours, but I don’t have leaky gut. I think this is something we need to look further into to get to the right problems. Maybe Dr. Drew questioned you about this test because he knew it wasn’t valid. It by no means your symptoms aren’t valid. I understand how we all want an answer to the cause of our symptoms.
They have gluten free versions of everything today. I’ve had Pop-Tarts and brownies and crackers etc…not all are good and it takes a lot of patience, but it’s amazing when you find these little treats or even make them at home!
Betty Crocker has a mix for Chocolate Chip Cookies and Brownies that are really tasty.
We’re out here Edward. Test…
Jennifer,
You said your celiac disease blood test levels were very high. So, are mine. I’ve been a gluten-free diet now for 9 months, but I still eat dairy. Since then, I’ve gained 7 pounds. However, my facial skin still peels and I still get migraines. How long did it take for your skin to stop peeling and for your hair to grow back? This question applied to all celiacs. Also, do you eat dairy and use regular toothpaste?
Hi gfreechic-
The first time I went gluten-free I had not yet been diagnosed with celiac disease, so after several months on a gf diet without any improvements in my health, I gave up. However, after I was diagnosed I stuck to the diet even when it seemed to be failing me, and eventually my symptoms went away. I think it can take a long time–months or a year– for your body to recover from chronic damage, and everyone’s body probably has a different recovery period. Even now when I accidentally eat contaminated food, I feel sick for weeks afterwards as my body tries to cope.
That being said, a lot of people with CD have other diet sensitivities or allergies, or other autoimmune diseases. For example, though most of my symptoms were relieved by eliminating gluten, I still had extreme fatigue that ended up being Hashimoto’s (hypo-thyroid). So if you stick with the diet for a year or so and still have problems that aren’t subsiding, it might be worth experimenting with cutting dairy or checking out other autoimmunes.
I hope this helps even though it’s not a direct answer!
Yes, dairy can be another culprit. If you go gluten free and see improvements but not full resolution of your symptoms, try also going dairy (casein, the protein in dairy that causes the inflammation) and see if more of your symptoms disappear. Worked for me.
*Meant to type: try also going dairy-FREE
Love your story! And I cannot wait for more and more bakeries and gf restaurants to open. We went through this exact ridiculousness. My son was diagnosed with celiac when he was 4. He was sick that long until we found it. Amazing how oblivious the medical community was and still is about this disease. He is 14 now and doing great but still gets embarrassed around his peers. We are strong though.
I am British and was diagnosed as coeliac aged 7 in 1979, shortly after my mother was diagnosed (after 7 miscarriages) and my aunt, aged 60! When I was diagnosed there was little knowledge – we were told to stick to plain meat, bananas – lots of bananas for some reason! – and this godawful bread which came in tins!! I spent my childhood yearning for nice foods. At age 11 I taught myself to cook and developed recipes, for milk cookies – which used milk powder in place of flour, fudge, and even my own version of Chinese food which used a reduced broth in place of soy sauce. At school for lunch I was given an apple and a piece of cheese each day!! I am now a keen cook, and have a coeliac daughter too, and my passion is to find a good gluten free alternative to everything my daughter feels she misses out on. I loved your book Jennifer! I would have loved to have that back 25 years!!
Wow…im speechless…I’m not crazy..is the only thing that comes out right now!!!
Me too. The neuropathy has been explained to me as atypical migraine. This is the first I have seen all of my issues listed. It makes me feel a little sane. Thank you.
Celiac a mg ew way to eat and live.
Celiac a new way to eat and live.
http://yougotpinkdrink.myplexusopportunity.com
Jennifer. I am a Staten Islander as well. We have some mutual friends. I actually worked on a film with you in Brooklyn and saw you in a restaurant in NJ. Are you on a probiotic for your stomach issues. Pink Slim, probiotic, bio cleanse and X factor has helped me immensely from joint pain. And digestion. They have many testimonials for weight loss to helping disbetes, acid reflux, joint pain, cholesterol, high blood pressure and many other issues. I try and stick with an Alkaline diet. There’s a great raw for restaurant in NYC called Pure Food and Wine. It’s delicious. Hope your doing well and everyone who is suffering. Health is the most important. Please check your PH levels. When I’m in pain my acid levels are so high. When I’m alkaline and feeling great it’s Green!! Good luck and all the best.
RE a healthy ph…please avoid alkaline water..accoding to dr mercola it can mess with stomache acids and further exacerbate absorption issues. Ph is an important concern but high alkaline water is not necessarily the way to get there.
Hi. I am intrested to know if u have a website I can review for probiotics. I have about 90% of jennifer’s symptoms minus weight loss. I am gaining like crazy and can not loose weight on 1000 cal food.
I have developed severe knee pain at age 47. I appreciate your help.
sandy – severe calorie restriction can cause more harm than good. It might even back fire on you. If you’re looking for a way to manage your weight with celiac disease, naturally balance your PH, and set your body up to house the probiotics when you introduce them, etc. – I suggest following Haylie Pomroy’s eating plan. Do not be discouraged by the title of her “diet” (the Fast Metabolism diet) – it’s been marketed to meet the masses who like that combination of words
– But it’s actually a fantastic guideline for re-balancing your ph levels, losing or maintaining a healthy weight, and managing celiacs disease and its symptoms – all at the same time. I hope this helps! …even though my response isn’t about probiotics. 
First of al, Jennifer thanks for articulating what I have been going through for more than a decade. I saw you on the Daily Show & even with a Ciliac’s dx most people just believe you have a “tummy” ache. So thank you for getting the word out to a bigger audience.
I too have all the same symptoms Sandy mentions, especially with weight lose on a low calorie diet. My knees are also shot and I am in too much pain and too exhausted to exercise like I once did, this is frustrating beyond words.
I have been GF for four years and have not found a ton of relief. Have most people given up dairy too? I also try and eat really clean foods and I do feel this is helping but my cycle of exhaustion & pain continue to prevent me from exercising and the scale doesn’t go down.
Any advice would be great.
Eileen: I was recently put on a FODMAP diet as I discovered that there are certain sugars in foods that I cannot digest. Look it up on the internet and see if it is something that may help you.
Sandy-
dr’s are not estimating that 35-40% of celiacs gain weight rather than lose it. I’m a gainer. It is impossible to lose and the less I eat, the more I gain. It’s very frustrating.
That has been my dilemma always gaining weight. I used to contribute my beer belly and horrible hangovers to my weekend binges. Now i can drink rum and coke with almost no hangover and no weight gain even though its mixed with Coke. I was bloated like a balloon when i ate Gluten. Before i knew i quit all alcohol for 5 months and still had bloating and pain in my tummy. When i quit gluten and beer together the magic happened.
Try the paleo diet. It goes beyond gluten free to eliminate other problem foods and additives.
How do you check your PH levels?
Jennifer – how long did it take for you to start to feel better once going gluten free? Did it take quite some time? (I’m just over 4 months on the diet and still struggling (yes, confirmed celiac w blood panel and biopsies from endoscopy))
Also being tested for MS, lupus, scleroderma, rheumatoid arthritis, so on and so forth. I’ve been so scared. I know I’m not getting any cross contamination – my entire home is gluten free. Can I ask you specifically about lupus? Were they just ruling it out or did you have specific symptoms that made them think lupus? Did you have lupus-type skin issues? (My cheeks have this rash that is light, under the skin and I am so sensitive to the sun. Seems like a trigger. Cold and loud noise seem to be triggers for me to – with other symptoms) I just keep praying it’s just celiac’s because…isn’t that enough?
Out of curiousity – because you have celiac’s does your doctor regularly screen for cancer or just the same way any individual would be checked? I keep forgetting to ask my doctor (brain fog!) but need to jot that down if that is something they do.
I know each case is unique and I’m not expecting you to answer but you know how difficult the limbo process is. I just wish I could feel good one day. That I could gain a few pounds. That I could be the person I want to be. My entire system is out of whack. Just not functioning the way I would like, the way my children deserve for me to.
Thank you for your site. Wishing you a beautiful day.
How long before you started getting better? Thank you so much . I can’t wait to buy your book
Jennifer, I just saw you on The Chew on June 5, 2014. I was sad to hear your story, but so Happy that you took the bull by the horns
I have been tested for Celliac Disease and they say I don’t have it, but I have loads of Stomach Issues & Meds, but I still don’t feel well.
I can’t wait to buy your book. omg you are an Inspiration!!!, Cant wait to visit your Bakery at some point.
Love Jacqueline——-Congrats on all your Accomplishments!!!
My husband is gluten intolerant, but does not have full-blown Celiac disease. In fact, he tested “negative” for Celiac. We “diagnosed” him by eliminating gluten from our diet and his symptoms went away. If he accidentally ingests gluten, he knows within a couple of hours. Bloating and gas, constipation. He also has psoriasis, another auto-immune disease, which they say is common.
this is in a way a general comment. i’m 69 yrs old and was dx with celiac disease in 2009. i’ve been symptomatic nearly all my life! my issue is that i can’t seem to find a doctor who gives #@@^ about all my continuing symptoms (i’ve been gluten free since 2009). all my doctors tell me is – keep gluten free. you’re feeling as good as you’re going to feel!!!!!!!!!!!!! i’m in central florida and the medical society here is very closed off. if you have a physician no one else will touch you. I’ve tried a couple of times to be seen at Johns hopkins in jacksonville with no success. i just need a fresh perspective – i hope what i’m hearing from my current doctors isn’t all i have to look forward to…
The doctor I’m seeing said there are foods that are gluten cross-reactors. These foods share part of the genetic make-up of gluten, therefore the body thinks you may be eating gluten when indeed you’re just eating rice, soy, dairy, white potatoes…etc. I’m still in the process of the detox and waiting to see if this new diet works. Cross-Reactors may be something you want to bring up to your doctor and/or may want to look into seeing a Chiropractor of Neurology. Call around and see if anyone is aware of the cross-reactor foods.
this is the first I’ve heard of foods that are “cross reactive”…Oh my, one more thing to look into and be concerned about. Do you have anymore information on cross reactive foods or know where I can get more info?
Karen
http://primaldocs.com/opinion/19-foods-that-cross-react-with-gluten/
This link is one I have read while trying to deal with celiac disease and all of its life challenges. .. I’m no pro but I have been researching obsessively as my 2 year old daughter and I have recently been diagnosed. (she may have saved my life by motivating me to get tested btw)… Thank you Jennifer for helping insure that by the by the time she is old enough to have to explain celiac desease to people, that they will understand that it is just that…. A disease and not a lifestyle choice
this is the first I’ve heard of foods that are “cross reactive”…Oh my, one more thing to look into and be concerned about. Do you have anymore information on cross reactive foods or know where I can get more info?
Find a holistic doctor that does Muscle Testing. This saved my life. They can figure out other sensitivities that could be the culprit.
Judy, in my case, I am also sensitive to sweet peppers, sweet potatoes and beans. They are supposed to be safe but not for me. I am new at this and went nuts cutting out everything. I’m going to try a glass of milk today to see if I react to dairy too. Almost afraid to eat anything. Anyway my point is, perhaps you are reacting to something else also.
Hi,
I have CD also that was diagnosed 4 years ago. I had similar symptoms that you talk about. It took me 2 years to get better. My doctor said she thought it was because they think I had CD since I was a child. I’m in my 50′s so it has done a lot of damage. If you are younger you may heal faster. It does get better, hang in there.
Julie, I was diagnosed with Lupus when I was about 25. Suffered with undiagnosed celiac until I was 58. I also have Diabetes and Schogren’s. It seems auto-immune diseases / disorders go hand-in-hand.
I have now been gluten-free for about 2 1/2 months, and the Lupus has gotten very bad (for me). Could this be part of the detoxing?
Jennifer – Thank’s for going on The Daily Show!
My daughter is coeliac and we have just done a Cyrex blood test which shows up 24 other foods that your body can read as gluten – ie, oats, potatoes, soy, corn, rice etc etc. She has come back with five more foods, other than wheat, that her body is reacting to. Amazing and should be better known.
Julie,
I had a similar experience. Gluten was not my only problem. Dairy, Soy, artificial preservatives and sweeteners and most processed foods made me nauseous, stomach hurt like a “fireball ” in my tummy. I had to limit consumption of food to small meals. Liquids were sipped. To took 2 years and suddenly I realized I wasn’t in pain. No more joint pain, muscle or stomach aches. Then, I limited my alcohol. The only vice I had left. I thought of everything I put in my body as a chemical.
Good luck in your search for health. Jennifer’s story is much like my own and your too. Be patient and love yourself. My family became my worst enemy because no one cared and they still make it hard. Be strong. You have a life threatening disease. Don’t take it lightly. It’s not just a gluten allergy lot food fad for you.
Take care.
Christy
We need your bakery in Boston.
We also miss you on Blue Bloods and good luck with your bakery.
I second that! We have a growing population of celiacs here in Boston and shockingly we don’t have a bakery like yours here, we desperately need one! Thinking about expanding the bakery…..please bring it to Boston! Thanks Jennifer.
The Twist in Millis is gluten free.
Your story is so similar to mine. I went through test after test, doctor after doctor with only vague answers, nothing firm. I was handed medication left and right and nothing helped. I felt labeled a hypochondriac that all the docs knew ahead of time. Blown off after months of trying to get answers. So I gave up. It wasn’t until I developed anemia and pushed my GP to send me to a hematologist I FINALLY found myself being taken seriously. It was the first time I had heard the word Celiac from a doctor before. As scared as I was, I was relieved to know it wasn’t in my head. Afterwards, I went through months of tests, but at least I was being treated as a serious patient.
It took 8 years to get here. 4 months gluten free and I feel better. Not 100%, but brain fog is mostly gone and I’m not nodding off at my desk every day. Maybe once a week.
Thanks for your bravery and sharing your story. It really made me feel better.
What kind of anemia did you have… b12 ot iron? May l ask how it was diagnosed? Can you list the tests that were done? My blood routinely is thick and the clotting if off…anyone elsewith symptoms likr this?
ALSO I STARTED B12 INJECTIONS..and instead of them giving me energy…they made me very, very sleepy and fatigued…has anyone else had this kind of reaction..it came from a compounding pharmacy…just now im wondering if it was contaminated withgluten?
MTHFR gene mutation is another abnormality that reacts like celiac. I have just been diagnosed along with my CD and now I have to go even further into the restrictions. MTHFR has a lot to do with clotting and anemia. No dairy, corn, etc. along with gluten free.
I also wanted to say with MTHFR you have to eliminate folate/folic acid from your diet. If I understand it correctly we celiac’s cannot digest metals or other similar chemicals from our body.
I have MTHFR and I need to take a folic acid supplement…per Drs orders.i am now getting checked for celiac
Jennifer we tweeted this morning, I’m in tears reading your story. Because I’m going through this and feel so so alone! Although diagnosed with Crohn’s , 6 feet of intestines removed, many stays in the hospital, so many ct scans, colonoscopy, endoscopy, viles and viles of blood taken for test after test. High doses of prednisone that now I have new things happening my beautiful skin is gone, constant itching, and that lump behind my ear and ears draining itching, told I have RA and another form of arthritis caused from Crohn’s ??? The lest goes on, but the worst is not 1 oz of energy! I’m now so depressed I’ve not left my home except for drs appointments to walgreens. What’s happened to me? I’ve never heard of your disease but I feel your despair because i feel it! So now after reading this my research begins! I pray for energy to help myself! Thank you for this and your tweet! I cried because someone heard me!
Hey Jenn, Ive been following you on FB and click to your web page. After reading this I think I read it with my mouth open. Good Lord! Its amazing what a person and their body can go through and Im especially in awe of the Universe and how it brought you to your place of being today. Its amazing the strength we have when we are almost at that point of no return and 2 words brought to back to Life. I do not have celiac but Im gluten sensitive and Im following people like you and others to look to for help in my Diet. I tip my hat off to you for your Life,Courage and The love to help others. Thats Angel Work.
Im following my purpose as well and thats to be a Health Coach attending IIN school in order to help others to get the health advise they so need when faced with some things you faced. Many,Many Doctors haven’t a clue, but then again I don’t need to tell you. With that said there are some Dr.s that are coming around and join us. There are some Dr.s that have Health Coaches in there offices to let us help people like you and SO many others who are faced with other conditions related to food issues.
Im a Native NYer and when Im visiting I will stop by to shake your hand and say Thank You for your Angel Work. May god bless you in your journey of Health,Happiness and for finding YOUR rainbow.
Namaste! Marie
My goodness I cant thank you enugh. You have no idea ( actually you do) how it feels to have professionals not know what is wron with your body and be made to feel like youre crazy. I have been through o many tests, so many Dr.s its sad. I went to the ER one morning and after a series of test and xrays the Dr comes into my room and asks me i I have anything going on in my life right now. He thought it was anxiety. Even made ME think it was anxiety and wrote me scripts for zanex!!! I took them for 2 days and stopped. I knew that just wasnt it.It got to the point where I had to change primary care Dr.s becaue mine was so tired of hearing from me she began to get snippy and rude. She said it was my gallbladder and sent me to a GI specialist. She said lots of people my age eat too much fried food and dont realize it and that its an easy procedure…. I am working per diem at a hopital right now as we speak. I just had a heart to heart with a very nice woman who explained her symptoms to me and my jaw dropped, because it was the same carbon copy thing I was going through. She came through the ER and said ” I KNOW OMETHING IS WRONG INSIDE OF MY BODY ANDIM NOT LEAVING UNTIL WE FIND IT.” I understood her frustration….. I just printed your article and eft it by her bed. Hopefully it helps her as much as you helped me. Ive been tested too much, paid wa too much in copays, just to be looked at as another depression/anxiety case. What about the people who are taking meds right now for depression….. do they need it???? Are they actually allergic to gluten? Monday I will ask for a test, but Im 99% sure I know the reults. God bless you for being beautiful inside and out. I may be even worse off than you guys because I am pescetarian…so thats THAT much les food I can eat : ) Let my new Journey begin.
P.S. I am in CT and I travel to NY and NYC all the time. I am also a plus size model and pageant winner so I travel all around to compete, judge, shoots etc. I think your Bakery is a wonderful and kind hearted idea. I WILL be stopping by ; ) Thank you again.
Somehow,i contracred Celiacs disease soon after i had emergency surgery to remove a 15 centimeter tumor in my intestines,and when i started chemotherapy for Non-Hodgkinson Lymphoma.I visited the oncologist at University Hospitals in Cleveland and he informed me of my two new afflictions.I’m in remission now,having a blood draw,ct scan and physical every six months to check on my folic acid,vitamin d,vitamin c,calcium,hemoglobin and iron levels to maintain a proper balance.While undergoing these check-ups,i was informed by my doctor,that i also had Lynch syndrome II,which is a hereditary cancer gene,it runs in the family,while some in the family have Lynch Syndrome I,i have II,the difference being the types of cancers in each Syndrome.Although i treat myself with a mostly gluten free diet,i have added an increase in bananas,leafy green vegetables and at least 1 cup of yogurt daily,sometimes two.This regimen has helped me with my digestion and evacuation regimen,to minimize any embarrassment,i still have to be cognizant of my condition and i have scheduled my eating habits to be able to control my bathroom visits.I take 1500 mgs of glucosamin and 1200 mgs of chondroitin for osteoporosis and folic acid 80 micrograms,500 mgs of vitamin c,and calcium citrate daily and 50,000MGS.,of Vitamin D-3 4 times a week plus some other supplements for other reasons and it basically controls my problems,i learned what my body did,what it needed and i try to stick with this to avoid problems.I eat Rice Chexs without Gluten with milk and banana daily to help me start my day and avoid problems,so far this has worked,not only am i maintaining my weight,i have added a few pounds to keep me an edge.
Daniel, the truth is, that the celiac disease you probably had for years is the reason you contracted non-Hodgkins lymphoma in the first place. The surgery didnt’ cause the celiac disease, but finding out that it was non-Hodgkins lymphoma probably made them think to test you for celiac disease since people with celiac disease are much much more likely to get it.
Ditto to what kathryn said celiac causes specific cancers and low vitamin d protects against many cancers…including colon,,, so an earlier dx of celiac..and vitamin d levels could have prevented your cancer…according to reseaech. For more info on v itamin d..l strongly recommend michael holick, phd, md book. He is the leading vitamin d resear cher…has lots to say about how to get enough d. First of all vitamin d functions as a hormone…so if we
are low in d what other hormones get out of whack? My primary was smart enoughto test for vitamin d…but when my s ore came back at 17..HE IGNORED IT! When l pushed the issue he offered 400 iu daily…in pill form ignoring my malabsorption issues. L went to another doctor and requested holicks protocol 50,000 iu weekly for 8 to 12 weeks depending on absorption issues. Some patients stay on the 50,000 for extended periods of time such as with colon resections or gastric bypass…these patients are literally unable to get vit d orally…he does recommend a lamp…read the book valuable info for every time of life…pregnancy, infancy, childhood, young adults, middle age, and elderly.best wishes to all on this journey!
I have never been advised to use gluten free hair products, etc. My blood levels have not been as they should be for a few years. I have struggled to discover what I could possibly do to make a difference. Do you believe that using gluten free hair products would help lower the blood levels?
I have removed all of the anti bacterial soaps from my home because I am sensitive to a lot of products. Changed to bar Ivory soap and baby shampoo. Made a difference.
I don’t think hair products would matter unless you get them in your mouth.
I do think lipstick or lip balm matters since we usually ingest some of it. If I use sunscreen or make up with gluten I wash my hands really well. It’s amazing how we handle makeup and then maybe tough our mouths especially handling food. I noticed symptoms and was sure I was eating gluten free- finally checked my lip balms and threw some out!
I don’t think ,using gluten free hair products would have any effect whatsoever,however,that is just my opinion and i’m a retired police officer,not a doctor of any kind
This might help,i have just completed on 3/31/2014, a 6 month check-up where they drew several vials of blood for testing,then a week later,based on those blood draws,they conduct a Ct scan with contrast,looking for any inter-actions,a week later,i have a slight physical with my doctor to discuss the levels in by body.He looks for Iron,Vitamin D,Vitamin C,Calcium,Folic Acid and Hemoglobin ,some of these because i have osteopina,similar osteoarthritis.
My body has a problem in that it does not retain,has a serious problem retaining Vitamin D ,My mother came from northern Italy and people in the area had a problem retaining Vitamin D,therefore my prescription calls for me taking 50,000 units of Vitamin D four times a week,it is a little capsule or gelcap but i ‘m not advising you to take it without seeing a doctor and seeing what your levels are before you do anything,that would be my only advise.Have your doctor draw blood to see what your levels are to bring them up to what you need.Vitamin D is coming to the forefront in so many maladies as a needed medicine.
I hope this has been helpful
Please see my message to u above about dr michaek holick the leading vitamin d reseacher internationally. FOR THOSE WHO HAVE DIFFICULTY ABSORBING THE GELCAP….HE SUGGESTS CUTTING THE GELCAP OPEN AND POURING THE CONTENTS INTI MILK OR OJ….both have vitamin d and aid in absorption.
Holick notes that you can die from low d…please read or watch youtube videos from holick on vitamin d. He also wonders if fibromyalgia is infact correlated to low vitamin d status….so the implication is increased vitamin d should reduce or stop fibromyalgic like pain.
If you are concerned about b12 watch or read Could it be b 12? B 12 deficien ies are also deadly…and often misdiagnosed or ignored. Also according to the author serum b 12 is NOT the best test to identify a low level.
Fyi both vitamin d abd b 12 are very inexpensive….4 (one per week) 50,000 capsules are$11…and b 12 from a compounding pharmacy was under $30…then u either self inject…but im chicken…so l paid $10 to go into my doctors to have them..hpe this is helpful..now after reading JENNIFERS WAY..l think l now know why l lost 50 pounds without trying…CELIAC DISEASE…thank YOU, thank YOU! thank YOU beautiful jennifer!.
Jennifer,
I am not a suffer of Celiac, though that was suspected. I was diagnosed with SIBO (and then kidney cancer-it was a fun 3 years). SIBO is another misunderstood digestive ailment that requires one be grain-free, sugar-free and on and on and on. My co-workers daughter has Celiac and she and I are constantly sharing recipes and commiserating with one another.
Like you, It took my doctors years to figure out what was wrong. Then once discovered, overnight, I was expected to be an expert in nutrition. I relate to your journey intimately. I only wish I lived in NY and could come by your bakery.
Dana C Thomas
Hi Jennifer,
Months back I saw the interview you did with Dr. Drew. To this day I still find I have a negative reaction to the way he spoke to you as you tried to explain your health situation.
(Seriously wish he had the professional courtesy to study up on the topic he was going to discuss with his guest/you that day.)
I am writing today to provide the following article. It is related to Autoimmune Illness in general, but mentions Leaky Gut Syndrome.
http://robbwolf.com/2012/05/18/paleo-autoimmune-illness/
Specifically this information at the end if the article:
“These are exciting times for those who struggle with AI, as current research attempts to explain what thousands of people have found to be anecdotally true. As Chris Kresser, L.Ac discussed in a recent podcast http://bit.ly/JhUrFg the issue of intestinal permeability or ‘leaky gut’ has been made fun of for years as pseudoscience. Not to worry, the research surrounding this issue is about to explode due to the fact that the first drug to treat intestinal permeability is being developed. Once “Big Pharma” gets involved, and there is suddenly money to be made from treating this issue, the research to justify it won’t be far behind!”
I have two doctors in my family that I have tried to educate about Leaky Gut Syndrome, now recognized by the AMA as Increased Intestinal Permeability. These family members feel that my vigilance over eliminating gluten and grains as well as other cross reactive foods is a mental disease characterized by food phobia. Lovely, huh.
Anyway, I don’t personally care that a medicine is being created, as I prefer food and lifestyle changes over a pill for the health and wellness of my body, though to each his own, What I do care about is the recognition of the illness by the AMA (though some high profile doctors already acknowledge it’s real.) To look at us, we look fine. It’s an invisible disease. But our insides tell another story.
Keep fighting the good fight.
Best of health to you and your readers.
Patricia in NYC
Thanks for the link to the article. I knew about leaky gut but he also talks about leaky brain. I had never heard of that but it makes sense based on symptoms that have never gone away despite everything I’ve tried. I would be willing to try the new medication for at least one dose. Is it called Larazotide? I’ve been on and off of special diets for 15 years. I’ve taken probably hundreds of different supplements and medications. If the new leaky gut med helped without any crazy side-effects, it would make the diet seem more worth it to me. I’m burned out with diets.
I have been biopsy tested for celiac, as well as barrets esoph. I also had thryoid issues, adrenal fatigue, PCOS, arthritis, fibro….this list is forever long! I have 5 children as well…and knew I needed something different!
I am finally seriously, healed. Not on any meds for anything, was on 8. ALSO biopsy shows no sign of celiac! I still eat GF but seriously now my absorption is better!
I’d be happy to share anything that can help anyone else!
Ciao Jennifer,
Here in Italy where I live, there are cases of celiac’s disease. Why don’t you open up a bakery here? If you did, I’d spread the word through my English classes (since I teach). We have the California Bakery here which is doing really well but I’m sure yours would do well too since there’s nothing like it here!
Sentiamoci!
Hi Jennifer,
I have celiac disease and was diagnosed about 4 years ago. After several visits to the E R my primary care doctor sent me to a gastrologist and after having a biopsy he made the diagnosis. I was very fortunate that the diagnosis was made after only suffering for a few months. We have a very good gluten free store located here locally. I saw your interview on Fox News this a.m. If I ever get back to N Y City I will visit your bakery. Thanks and Good Luck on your health.
Beverly in California
Thank you for bringing awareness to celiac disease. I have so many relatives everytime it is holiday time, when I decline rolls, stuffing and 80% of the other gluten filled treats, (mostly other than the meat or 2-3 things I prepare/bring, saying, “Oh yeah, Ruthie has a gluten allergy or intolerance”. I’m like, no, I have Celiac disease. I could rub bread all over my body and I won’t break out in hives like someone with a shellfish or strawberry allergy would. As a 34 year old wife and mom of 2, I was diagnosed in Feb. 2013 and have been GF ever since. I had tummy trouble, terrible numbular excema, contant headaches, hand swelling and joint paint (I couldn’t even lift the pan out of the oven my hands were in so much pain. I was vitamin deficient, anemiia, vitimin K, potassium, you name it. I had been to a rheumatologist, dermatologist, family doc and it was not until I went to a brilliant allergist that he started to suspect celiac disease. Everyone else just wanted to treat me for symptoms. Meds for tummy trouble, creams for swelling, creams for excema. I just wanted it to stop. Really grateful that folks like you are bringing such attn to this. I know there are others out there suffering like I was who, with a major dietary change, could be well. Thanks again.
4 years ago I sat in my Dr’s office and she asked if I wanted to kill myself and the only reason I said NO was because my husband was in the room. I would stare at the bottle of Ativan every day and think “this could all be over, I could be in no more pain”….Thankfully, I didn’t and they figured out what was wrong but what a mess and what a long, long time to get better…Your crusade will bring awareness to people that have given up hope! Can’t wait to get your book!!!
I can relate to so many things and symptoms. Thank you for sharing. 2yrs ago I had my gallbladder removed and thought my digestive issues were over. Last year I started to get violently ill and experienced similar symptoms that I had previously before gallbladder removal. I also started to have panic attacks,and i was extremely fatigued. The dr said IBS and wanted to prescribe about 8 medications including a anti depressant. I am not one to take medication, so I started to research. I have been gluten free for 6 months, but have never been officially tested for celiac. I don’t have issues when I like gluten free. My husband would like to have an official diagnosis, but I read the only accurate way to be tested is to currently still be on gluten. I am not willing to go back to feeling bad in order to get tested. Any suggestions or input.
Thank you,
April
Dear Jennifer,
What a fantastic website! I am on a completely grain free and gluten free diet for AI issues. I was wondering if you use GF makeup when on set? I want to make it easy for makeup artists without sacrificing my own health. What do you do?
Thanks so much again!
Hi Jennifer, just seen you on Katie, you look beautiful, glad you are feeling better! I was so surprised to hear you say you are from Bensonhurst, where I was born, so proud of a fellow Italian/American having success. I miss you on Bluebloods, shame on them !
Wishing you much continued success in your life, and you’re upcoming marraige ! I will always be a fan !
Hello Jennifer, I came across your website today and wanted to tell you GREAT JOB! I was diagnosed with Celiac about 11 years ago. I went undiagnosed for 45 years! I also knew something was wrong with me, went from doctor to doctor and NOT ONE OF THEM tested me for Celiac all those years. I am doing better now but as you know it’s a daily challenge to live gluten free. I have setbacks which really frustrates me. And I agree with Patricia from NY – from the outside we might look fine but because it’s an invisible disability, our inside tells another story. But as you said: Ever Forward! Thank you for sharing your story! Wishing you all the Best.
Jennifer, I cried when I read your story on your site because I identified with so many of your feelings and experiences. I am 59 years old and finally discovered 2 years ago that I am gluten sensitive, not Celiac. For years I have gone from doctor to doctor (labeled hypochondriac), referred to a psychiatrist, taken all the ADHD head meds, etc, etc. For those that are not Celiac, just gluten sensitive, going to a gastroenterologist (they only test for Celiac, not gluten sensitivity) will have you coming away being told that you do not have Celiac and are fine, as happened to my daughter. Entero Labs is a lab that tests for sensitivity and also does the genetic test. I was told that I inherited a gene from one parent that makes me gluten sensitive, but that it will never develop into Celiac.
Anyway, I would like people to be aware of gluten sensitivity and the connection to Hashimoto’s thyroiditis (the auto immune form of thyroid disease). For someone sensitive to gluten eating gluten raises your thyroid antibodies giving you all the symptoms of thyroid disease. Eliminating gluten from you diet brings your thyroid antibodies back to normal and eliminates the symptoms of thyroid disease. I am so thankful after all these years to have finally figured out what the problem has been (i read in a book about the gluten/ Hashimoto’s connection and got tested thru Entero Labs) and to finally be living a doctor free/medicine free (except for my natural desiccated thyroid medication) life. Doing the genetic test gives me hope that my kids and grandkids will be able to live the life they were intended instead of spending their lives trying to figure out why they feel terrible physically and mentally.
Fyi both vitamin d abd b 12 are very inexpensive….4 (one per week) 50,000 capsules are$11…and b 12 from a compounding pharmacy was under $30…then u either self inject…but im chicken…so l paid $10 to go into my doctors to have them..hpe this is helpful..now after reading JENNIFERS WAY..l think l now know why l lost 50 pounds without trying…CELIAC DISEASE…thank YOU, thank YOU! thank YOU beautiful jennifer!.
Janelle…or anyone….can you please provide all test names AND BILLING CODES THAT WOULD IDENYIFY CELIAC or gluten sensitivity…heres my understanding…if one is ONLY gluten sensitive now..you can later develop a full blown CELIAC DISEASE DUE TO REPEATED EXPOSURE in food, make up, lotions, shampoos, alcohol, and feeding your pets….JUST BECAUSE YOU DONT EXPERIENCE AN IMMEDIATE REACTION DOES NOT MEAN YOU ARE NOT HARMING YOUR BODY…think of it like ciggarette smoking….repeated exposure equals cancer and possibly death…so you REALLY want to limit any gluten exposure.
What bread can you eat..I tried store bought but I suffer from IBS constipation
Everything makes me constipated I’m over weight can’t lose any weight .I cant eat meat .I was told to not eat glutin but its hard not to. I’m also allergic to latex foods. Also when I eat rice it upsets my stomach..I get hungry so I end up eating glutin foods and feel like I have flu like symptoms… After…any suggestions
My aunt just sent me your information. I am a mother of a daughter with celiac. Diagnosed at age 14 and 1/2 she has been gluten free for about 20 months. For all of you that are beginning a GF life here are a few suggestions: You do not go,” Sort of ” GF. Throw out and start over. I live in Montana in my city we have, Albertsons, and Smith grocery store and one speciality health food store. Start with the information on line, get and App for your smart phone( yes, I bought her one because of the app). Go to your food store and see if they have a printed list of GF foods. In the past 12 months I have seen a huge change in the the labeling at Albertsons. I called all the major food companies I liked and asked them to send me a list of their GF foods. I made my daughter rank all the packaged food on a scale from 1-10. If the product ranked 5 or above we would try it again. I also did the same of different almond milk.
What I want her to learn is that she will have to grow up and be in control of her life; Celiac is apart of her life. Learn as much as you can. Also, things can change and new symptions can pop up. If you have read a lot of information you feel a little more empowered. Print out information from the National Celiac Society or other Groups and send them to your doctor. I followed the outline of what blood test to have done and the suggested time table. Do not be afraid to share information with the doctor and ask them to see if your problems might be due to Celiac. The last thing I wanted to share is what my daughter shares with me, “just because it is GF it does not mean it taste good and I feel like eating it!” She also wants others to know, “being Celiac is not fun! Being GF is not always easy and she is not part of the new FAD. Having Celiac now is much easier to deal with than even 4 years ago! Thanks to everyone who has made the general public more aware.
I know there are so many variables to Celiac but what she noticed right away was tummy pain was gone within 4-5 weeks. The exhaustion factor seemed better but was hard to really pin point because she was growing ,dancing 8-12 hours per week; the same can be said for joint pain. As a mother of a teenager living with Celiac I have witness the struggles she has gone through. Lesson #1 When pain has a name you can address it. This is your life story it might be a bummer but, get over it and learn to deal with it ( not always easy). I am not a mean mom!
Joan…can you please tell me the name of the app…im 56 hardly tech savy…but evidently time to do so…also will you please put celiac testing protocol and timing below…my gastro said my celiac test came back normal…however afterr extensive testing my oldest adult son was told to get off celiac by an immuologist….l was dx with intercystitial cystitis 3 years ago following a colon resection for diverticulitis and an abdominal abcess…nothing worked right again…now l assume my gut was severly compromised by oral and iv antibiotics…lve been bedridden for 2 of the past 3 years…gross fatigue…and bone and joint pain…felt like someone beat me with a baseball bat all night long, 50 pound weight loss, tooth broke, dry mouth, frequent urination and uti….now l strongly suspect celiac. Does anyone know why liver panel numbers come back elevated? I swear my pancreas has shrunk due to malabsorption/malnutrition issues or perhaps radation from over 15 cts of abdomen.
I think,you should have blood tested for Vitamin D levels,vitamin C,Folic Acid and Hemoglobin,see what your levels are i think you will find,they are way out of whack and you’ll probably need Vitamin D-3 ,check with your doctor,but Vitamin D is so important for everything,almost every function in the body.
Also Iron
Holy , there is a god. Iam so glad Jennifer that you brought Celiac Disease to Katie’s show. The pain the panic attacks are over the roof . Thank you for stepping up and speaking about this issue. Now to figure out how to get the book. My hands are shaking to much now so I’ll let this be sent. Your in my thoughts and prayers all that have CELIAC. It’s hell with no peep hole to look out of.
Moms Across America founder Zen Honeycutt would like to speak with you or your marketing director about supporting your cause and our Moms joining into 4th of July parades all across America.
Please contact me as soon as possible, we hav ea deadline for art work this week.
Zen Honeycutt
Hello Jennifer,
I think I’m in love…
Mario
Jennifer, thanx for bringing this to light. I have fibromyalgia – systems are the same. I’m going to follow up on that and have tried to find gluten-free foods, but can’t find bread locally. I’m in Key West & shopping is limited. Can you direct me to where to look for gluten-free breads. Thanx so much & and Be Well, all of us, Trish
Glutenfreemall.com
UDI bread, taste the best to me. BiaGlut noodles and pastas are my favorite and BiaGlut crackers.
Good to know Theresa, but where do you get them. Thanx, Trish
I have it delivered through the website. Glutenfreemall.com. I’ve also found the bread at Harris Teeter
What is Harris Teeter? Is it a web site as well? Will ck out Glutenfreemall.com. Thanx, Theresa, Trish
No it’s a supermarket. You might be able to request from the manager of your market to order some in. It’s typically in the freezer case where breakfast biscuits are.
Patricia from NYC here again. Reading through the comments.
I haven’t read Jennifer’s book yet, and so I don’t know if there is either a general healing protocol listed or her personal individual protocol. I wasn’t diagnosed as Celiac, but from symptoms and history I am definitely not well on wheat/gluten nor any grains whatsoever. Buy the time I was tested I had been gluten/all grain free for many many months (currently over 18 months now) so I never tested positive. My tests did however show a marker that there was some type inflammation suggestive of gluten intolerance in the intestines, (That marker detail plus other details/symptoms is one such way they come to that conclusion). This wasn’t overnight, fyi, but many many years of health issues in the making.
My advice to anyone suffering is the advice I got from so many practitioners – “Start by reducing inflammation so that that energy can be then used for healing. Don’t know the cause of the inflammation, then look to your diet. Eliminate the 7 or 8 main food allergens and see how you feel. Try an Elimination Diet. Use only real and whole foods. Nothing from a bag, can or box. Cook everything yourself or get from a trusted source.”
I read that if you have enough symptoms, don’t bother testing and go into heal yourself mode. The gut health is apoarently so very critical. I’m still in the healing process myself. Bless us all that suffer or have loved ones that suffer. Best of health to all.
Patricia
Jennifer… today is mothers day..and my 2 sons will be taking me to a gluten free restaurant because l found your book 2 days ago. THANK YOU FOR TELLING THE TRUTH. Your bravery and vulnerability not only bennefitted you but all of us. One doctor snidely said to me “your not one of those people on the internet all day long?” UM, yes l guess l am. Isnt it odd if the doctor listens to dr michael holick…he gets continuing education points…but if l do lm just a neurotic pain in the ass? Doesnt seem fair or more importantly accurate , does it?
Thank you for educating us on all those hidden places of exposure…feeding the cat this am…brought a new awareness.
One week ago l requested a case manager to assist me in the process of getting appropriate testing and treatment in a timely manner. I will keep you posted on my progress.
Are you aware of treatment from the Helen Foundation? I would be very interested in hearing your thoughts.
Congrats on your engagement….YOU deserve every good thing…..please, please get dr. Holicks book on vitamin d…and check out the parts on autoimmunity and pregnancy…if you anticipate the need….Im 56 and now that l look back l was probably vit d deficient as my mother was with me…..vitamin d insuffucuency can cause life long problems for baby and mother…l wish l had this info then. Blessings on you Jennifer
Hi Jennifer,
I have been a fan of yours since I saw you on Blue Bloods. I was disturbed by the way you were treated before you ended your career with them, and I saw you on Katie Couric”s show. Your book was eye opening. I found out I have Celiacs disease after I was diagnosed with Systemic lupus Erythematosus. I am now totally off of gluten and dairy. My daughter lives in NYC and is a producer for FOX news. She tried to order and have some treats from your bakery since I told her about it. She said you weren’t shipping things yet so she found another GF bakery who does and that was my treat for Mother’s Day. I have a question. A friend of mine who is also gluten free because of her eczema told me that blue cheese has gluten because of the way it is processed. I want to know if this is true since you have researched so much.
When I come to visit my daughter in New York, we want to come by and meet you. Thank you for all you do and have done for Celiac sufferers. My daughter is Ashley Taylor in case you ever get to meet. She may come by your bakery one day.
Hugs to you.
Trudy Holleman
My God above, I never realized there were so many people out there like me and BOTH my adult daughters. I have been SO sick for so many years and the last 15 years with allergies to corn, all antibiotics, chlorine in city water, smoke of any kind and every chemical that’s around. The last 5 years (i’m 61) I just figured I was just going to die and accepted it. The constant headaches, muscle spasms, muscle and joint pain, bloating, diareaha, nausea, rashes, hives, boils, lumps behind my ears, earaches, constant sinus problems, constant cramps in my intestines, constantly tired-extremely tired, sleep for 10 hours one night, cant sleep the next and finally ALL food making me sick, having ‘flu’ constantly and finally my family at least knew something was wrong other than depression or just all in my head. NO dr. at all to help. When my daughters started with this, my oldest one wondered about gluten. We all stopped eating it in December 2013 and as of this date I can Not believe how good I feel! Still got a long way to go-but its just amazing how we are all feeling better. My daughter just started reading your book honey, and tears welled up in my eyes when she started telling me about you and my heart just broke for you. And now I read all these comments and the tears are running down my face for all of you! And I will be throwing prayers up to God for you all tonite and whenever I think of you all. We are all walking down this road, so lets try to help others with what we’ve learned in our ‘walk.’ And dear Jennifer, what you have gone through and your wonderful book-those damn Hollywood people should make a film of your life story. Just think how THAT would get the help out to those who have no idea what’s wrong with them. God Bless you all. You are all now in my prayers and in my heart.
That was truly touching. I literally have all the same symptoms. Right now a rash that comes and goes in the same spot on my left arm, a new rash ( with in the past 3 months) that comes and goes now behind my left knee, abdominal cramping, EXTRMEME bloating , dizziness, muscle spasm especially chest, I will throw a temp for no reason, sometimes I cant get enough sleep, sometimes I sleep 3 hours in 2 days, sometimes there’s diarrhea, sometimes there’s constipation, and so much more….
I too have had health problems for years. I have been diagnosed with fibromyalgia. I always felt diet was key for me.
I have gone gluten free and lactose free. This helps me with less pain, inflammation, skin rashes, mood, energy, brain and brain fog. But it all seems to be a delicate balance still. Eating away from home and travelling can be difficult. Like many others here I have hone through I’ll health for at least 25 years. I too have low vitamin D issues and have had issues with low vitamin B levels. And like others have struggled for years to try and feel normal and try to have normal energy.
I had years of awful migraines. And the worst part of it like everyone here knows, is feeling alone and not being believed or had support.
I actually just stumbled upon your site this evening Jennifer. I am very happy to have found it and to have learned about your book.
It all sounds so familiar. I feel certain that it will be a good resource.
I have just started to go to a naturopath doctor and I hope that she too can help me find answers. I just want to feel normal.
Jennifer,
THANK YOU. I feel like you are telling my story as we’ll. I was 40 when I went gluten-free on my own after frustration at the prospect of surgery #7 to address a 2 page typed medical history. The diet changed my life. I heard an interesting term that applies to people like us called “medical trauma”, that there is a negative psychological impact to not being heard or healed all those years.
Hugs,
Hilary
P.S. The irony of my story is I am professionally trained in Pastry Arts and that was my personal dream I was living when I was sidelined with inflammatory arthritis in both knees. Ayuyuy.
Hello everyone. I am so glad to have a place where we can come and communicate in a loving and helpful manner. But, now I am truly desperate. I asked my Dr. for a Celiac test and after 1 month I finally got the results and they were negative…..Its not that I wish I had the disease…its that I was so excited and hopeful that I had finally found out what was going on with me, how to fix it, and most of all that it wasn’t all in my head. I don’t know what to do right now and I truly feel like crying. As we speak my body is having a weird episode and all I keep getting are pain pills and referrals to psych Dr.s. With a sprinkle of Zanex which I wont take. There is something wrong with my body and I don’t know what it is. Is it possible to take the test and it be negative because at the time I may not have been having a reaction????? I’m so uncomfortable. Advice, tips, and comments welcome.
You failed to mention any symptoms.
Its all actually under Sara Grosso’s story…..but here. I will copy and paste. I also have an initial comments from months back.
That was truly touching. I literally have all the same symptoms. Right now a rash that comes and goes in the same spot on my left arm, a new rash ( with in the past 3 months) that comes and goes now behind my left knee, abdominal cramping, EXTRMEME bloating , dizziness, muscle spasm especially chest, I will throw a temp for no reason, sometimes I cant get enough sleep, sometimes I sleep 3 hours in 2 days, sometimes there’s diarrhea, sometimes there’s constipation, and so much more….
Also, always cold w/low tolerance to cold and my iron no matter what the Dr. and I do is always extremely low. Perhaps I have a low tolerance to gluten….I will pray and continue to research my own body.
My spouse and I absolutely love your blog and find a lot of your post’s to be just what I’m looking for.
Does one offer guest writers to write content for yourself?
I wouldn’t mind creating a post or elaborating on many of the subjects you write concerning here.
Again, awesome web log!
I never thought having Celiac would stop me from advancing in my career and in my life. Sadly I might not get hired for a job in Law enforcement because they sated ” Symptoms and signs of organic upper digestive tract disease may be disqualifying.” so I’m stuck in a job I dislike because I have celiac and they think I can’t function. Guess I’m going to lie and act like I’m ok because I’m tired of being broke in a job I can’t bare to continue. How do you do it Jennifer.
I have not read all the comments but will go back and do so but I just wanted to Thank you.
As I read this, tears ran down my face. I have 2 kids that were diagnosed with the disease 2 years ago. My son’s bloodwork was also the highest they had seen in a child. As a parent, it was the most overwhelming thing for me. I had the emotions of my kids who had to give up foods they loved and I had to try and figure out our new lifestyle. To read your story just brought the emotions back. I felt so alone and many people knew nothing about it. When I did mention it, people would just act like it was no big deal because there “are so many gluten free items out now.” Yes, it made it easier but it also creates this “it’s easy” attitude. They didn’t realize that we can’t just go to any restaurant even if they say “Gluten free” menu for fear of cross contamination. They didn’t have to buy ALL new kitchen items. I didn’t realize until just this year that I was sooooo overwhelmed and underwater. I got out and my goal was to be a person that would get information out there. I was so driven to do something. I have to say, your story has reminded me that I lost that drive. I still want to help people/kids/families learn to deal with this and maybe you have inspired me again. Thank you!
I will add that I have been dealing with the same thing as you had but mine was recently found I was low thyroid. (I weigh 120 pounds and did not have the look so doctors just didn’t think I had it) I too had gone to numerous doctors to be given anti-depressants, numbers of counselors, and pats on the back saying I was okay. I was also tested for Lyme and told I was low in iron but to just take iron pills and everything should be okay. My Celiac panel came back okay BUT we know that doesn’t always mean I don’t have it. I will be looking into it further but was so excited they finally found my low thyroid issue. I wouldn’t doubt that I at least have the gene due to both kids having it.
Thank you again! I look forward to folowing you, purchasing your book, and getting to your bakery in New York.
que linda tu historia, asi que tienes un restorant de cosas ricas?? te admiro mucho y eres muy linda, saludos y un beso
I’m curious, because I am gluten free for almost two years….what did Jennifer do to resolve her issues and get back to such vibrant health…and I am still suffering… Any insight?
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Greetings Jennifer,
My father told me that he saw you on television. Thank you for being willing to go on TV to talk about celiac. He marveled that you were really sick with this problem! Thus far my extended family has expressed no deep concern over my having this disease. I really succumbed to it when I was 19. I had mono and the next 30 years I struggled with the heavy weight of brain fog and fatigue. I had 5 children, before I guess I became infertile. I am now 2 years gluten free and feeling much better! I still feel I am in transition of healing from this disease. I am dealing with intolerances to nearly all of the food I once ate, but the Creator provided us with many more foods, so I am eating those.
Hi there,
I have been on a gluten free diet for about 50 years. I was celiac as a young person. I forgot what it was like to go through the crazy time before being found out. I failed grade one because of celiac disease and the feeling dumb.
I remember going to the bathroom in my pants and wearing short and shoving under the teacher’s desk think that she would think it was hers. I remember getting the strap for doing that and all the kids teasing me and calling me stinky.
I remember that walking to school was exhausting and I had to rest to walk up a small hill to the school. I have never cut my finger nails and I think reading this has brought back a ton on memories of childhood. I was to my father a weakling and to world around me a stupid child who could not learn or play sports.
I had rotted teeth and an American dentist who had work in the Philippines said I had malnutrion, So my mom took me the doctor who sent me to a specialist who diagnosed me with celiac. Years later my mother told me that the doctor was flirting with her so he put on big show and sent me to a specialist.
As a child if I had know about suicide I would have killed myself. I very happy that people are now aware of celiac disease and children do not have to suffer. I am 61 years old and for 40 years I never met anyone who had celiac disease. That American dentist working in Canada save my life and they will never know it. I love dentists.
By the way quinoa cost 8 dollar for 40 pounds and you bought it at Buckerfields a feed store and a loaf of gluten free bread was made a Woodwords an it cost 59 cents and a regular loaf of bread was 49 cents. It was cheap to be a Celiac before Dr. OZ. Now a celiac diet has been turned into gluten free junk food. I am very healthy and I never tell anyone about my diet.
Note to parents, My mother would tell anyone who would listen about my special diet and it was extremely embarrassing to me as a young person to be singled out. So do not talk about it front the celiac child.
Ross Wilkinson
Ross, Of all the stories written here, yours has touched me the most. That Dentist was your salvation. Bless you for sharing your story.
Boy, is this ever enlightening. No, I know about suffering from CD and needing to be gluten-free. I’d like to return the favor to everyone here who has told their story and so happy to have found this forum. My chiropractor, who is also a very nutritionist, is supporting the books by Dr. Peter D’Adamo, mainly EAT RIGHT FOR YOUR TYPE and THE BLOOD TYPE DIET. Please, everyone, get your blood checked to find your type. If you are O like me, you must avoid most grains anyway. We are mostly meat eaters; we need beef, chicken, fish, green vegetables, some of us an eat eggs, no dairy except maybe mozarella cheese and goat cheese. The books explain our physiology throughout history, how us type Os were the hunters mainly being carnivores through necessity. It shows how we can’t tolerate wheat and other grains because we are not aclimated to them and so they become toxic to us. I know what many of you have gone through with medical doctors and most of them are poorly trained in nutrition. Anyway, Dr. D’Adamo is on the internet and his books are on Amazon and maybe in your local library.
I just wonder how ,many people realize that the giant food industry is INTENTIONALLY making people sick with genetically-modified pesticide laden hormone antibiotic chemical food – all for BiLLIONS in profit!
They care nothing about your health or well-being. mONEy is all that matters.
As long as you people keep supporting corporate profits, your enslaved sickened lives will continue to get more and more abyssmal while the 1% gets more and more obscenely rich.
WAKE UP AMERICA!,!
I have been going througb a very similar situation. I was diagnosed w/ severe bone deterioration. At 19 they said I had the bones of a 90 yr old woman. I am 43 now and have lived with chronic pain for 24 yrs. Now the Drs say my symptoms are because of age. Before they said they didn’t know. I’ve also been through a zillion tests. It’s so frustrating. I am going to see about being tested differently because I’ve had several blood tests. I am also going to take a look at this diet and your products and hopefully work on getting better w/o the help of doctors.
Thank you so much for being our voice!!
I have been gluten free for over two years and I’m still dealing with family members who think I’m crazy. My kids suffer from eating gluten too, although their tests came back negative. As a result, my wife, 3 kids and myself are all gluten free.
To be honest, my wife did all the research. She pushed me to get tested after I fell asleep at the wheel of my car on the way home from work (don’t worry, I woke up in the center lane going about 5mph). My blood test was off the charts.
Thanks again. Celiac Disease just hit the main stream with you being on The Daily Show.
Take care,
Ken Howard
I’ve just joined this email chain and was recently diagnosed with likely having celiac. I thought my doc, a chiropractor of Neurology, was very thorough with my blood work. My gluten antibody test came back positive and according to him, it wouldn’t matter what my intestinal biopsy said bc I’m obviously having an auto-immune reaction. Since this is still so new to so many people, thought I’d spread the word that there ARE cross-reactor foods. These are foods that share part of the same genetic make-up as gluten and your body mistakes it for gluten. Rice, white potatoes, soy and even tapioca and buckwheat were some of the few that I was sensitive too. Been about 7 weeks since trying to go gluten and dairy free and just felt the flu symptoms (body aches, heaviness) almost completely disappear. This was after a 3rd reactivation of the mono virus that was not getting better. Fortunately I’ve been going only 10 months with debilitating symptoms and now starting to have hope that the light is at the end of the tunnel. We’re still trying to rule out anything with my thyroid. The right side is still in pain and takes quite a bit of energy out of me. I’m only 29, but had significant muscle pain on the right side of my body that stopped me from playing competitive sports 11 years ago. Very curious if gluten-free helps with that. Also, other auto-immune disorders can develop from having celiac. Good luck everyone. Just make sure you’ve covered all of the foods and take the supplements that help you heal! Find cookbooks to make your own food. It’s very rewarding to eat for your health!
I just saw your episode on the John Stewart Show and I want to say thank you for sharing your story and in such a wonderful way. My daughter was diagnosed 4 years ago when she was 3 years old. We were fortunate that the first time I mentioned Celiac to her doctor that he believed me and we did the blood work that day. Being Celiac is very different from a having gluten intolerance or eating GF as a fad and I appreciate you making sure you made that point. While having Celiac can be difficult, it is always amazing to me that my daughter is growing and healthy thanks to a dietary change without having to take medicines. I am so happy for you that you were finally diagnosed correctly. I can’t wait to check out the bakery.
Thank you. Thank you. Thank you. I just watched your interview with John Stewart. I can’t even begin to tell you how grateful I am that you have shared your story. I had a very similar path to and through the frustrations of all of the symptoms and the oh-so-many Doctor’s mis-diagnosis and pill pushing. (4 years, to be exact) It made me want to scream. And I did scream…at times…loudly.
I can’t wait to read your book. Thank you for helping get the severity of this disease recognized and hopefully taken seriously.
Wow…Just Thank you
Be well,
Nicole in Napa.
Hello all,
I am not celiac, but have had allergic reactions to different foods especially wheat, in my life, but mainly I am severely hypoglycemic. I wholeheartedly empathize with everyone here, as I have suffered for 30 years with this condition and people never understood when I told them I had to have 6 protein meals a day. They couldn’t understand why I wasn’t a vegetarian, why I couldn’t do a juice fast/cleanse, why I felt ready to faint because I needed to eat and how desperate I became when my blood sugar dropped. I had one boyfriend who repeatedly put me in danger because he seemed to think I was joking (??!!) and didn’t really believe me when I would describe my symptoms and explain that I couldn’t wait for him to have lunch. I did, however, have good doctors, mostly holistic, who tried to help. But no one could really relieve my symptoms and they continued to worsen, to the point where I had to get up in the night to eat because my blood sugar dropped in my sleep.
In the last two years I have improved dramatically due to a simple protocol I am on. It is high doses of probiotics and bentonite clay. This ultimately heals the bowel and the gut, but one by one, all the organs heal. It’s not the most pleasant beverage to drink, but my symptoms have lessened and I am feeling so much better. The bentonite mops up the acids in your blood caused by acidic foods and beverages and your pH becomes alkaline from drinking the bentonite and removing the acids. The first thing that happened was that my DHEA levels normalized and I didn’t need to take it anymore. Then over two years my cholesterol dropped 43 points! My digestion has improved, I can tolerate wheat. I no longer have seasonal allergies. And best of all, my blood sugar is no longer as dire as it had become. In fact, it is so much better that there is no longer the desperation to eat. I still have a way to go to heal other things, but this protocol actually has an ending. When one finishes, your diet changes because you no longer desire the acidic foods. This will help anyone with food allergies and auto-immune disorders. There is a practitioner that I consult with once in a while, if anyone is interested, she is the expert. But for the most part I am doing this on my own. I highly recommend it.
… I went years with skin and stomach problems, depression, anxiety and had more horrendous tests done on me than I care to remember… no one ever mentioned celiac disease – ever … 4 years ago, I was finally diagnosed and have lived a gluten free life ever since. Luckily, I am retired and have a husband that can support us because NOTHING comes into our house that has gluten. I make pretty close to 100% of what we eat from basic ingredients. I read every label every time that I go to the grocery store – companies change ingredients – it may have been ok yesterday but I never take for granted that it is now not contaminated with gluten. I take no chances. Summer is a bit of a rest because there are all the fresh fruits and vegetables. I bought your book tonight after seeing you on The Daily Show with John Stewart. I live this way because I finally feel healthy and anyone that helps to get that across to the general public is worth supporting.
Diagnosed with coeliac disease 19 years ago. I get that it can be rather overwhelming when first diagnosed and you may feel as if you will never eat again, but spare a thought of those diagnosed 30 years ago. The only breakfast available was baby rice cereal. We now have so many options to use and the packaging and labeling is so much better than it was even 19 years ago. I was “lucky” as my father was diagnosed 10 years earlier so I at least had heard of it but in the grand scheme of things and the amount of nasty diseases and illness’ that we could have been diagnosed with, it is a diet change. That is it. No daily injections, no daily dialysis just read labels and worst case, buy no processed foods.
I saw you on the Daily Show and want to tell you what I was impressed with. In 2010 I was suffering with digestive issues that about kept me homebound. I won’t go into all the symptoms, but two you mentioned hit home. My hair was falling out by handfuls (the DR wanted to tell me it was a normal seasonal shedding; I knew better). The big one: I had a panic attack, out of the blue in the high speed lane on the expressway. BOOM! The doctor gave me pills for depression which I only took a few of.
This is the first time I’ve seen the panic attacks and hair shedding associated with a gluten problem. You made me feel more normal. I believe you when you say there are 300 symptoms because I have many. I finally figured out the problem on my own through endless hours on the internet and detoxed myself which took months. Many of my symptoms have subsided; I still struggle with occasional panic attacks and still cannot drive on the expressway.
Thank you for connecting these two items to gluten. I wrote them off as being an effect of endless digestive problems weakening my immune system. I was never diagnosed by a DR as a celiac or even gluten intolerant. They did no tests and said in general the tests are not conclusive so why bother. A lot of people are in my boat I hope they see your information.
First, I want to say thank you and congratulations for finally being heard and helped. I’ve been dealing with this all of my 50 years and now I’m adding pancreatitis to the menu, still with no actual remedy.
Along the way I’ve found this great website for GLUTEN FREE make-up. Their lipstick is not only GF but it is luxurious and last FOREVER! They have great eye shadow and liner. They have just developed a GF mascara that will be available very soon. http://www.redapplelipstick.com/ Red Apple Lipstick. You’ll love it!
Check it out, you wont be sorry.
Terrible episode with joint pains this week. A little bit of doing too much and getting tired and lack of nutrients. The ER wouldn’t help with much. They said, “our goal is to rule out life threatening issues, anything else you can follow up with at the doctors office.” So, before I went to the ER, I took some potassium and a GF vitamin. They said my levels were all on the low side, with potassium at 2.1, however they didn’t do anything about it! Do you all have any problems with potassium or anything? I hit the G2, potassium pills, more vitamins and am starting to be able to move a little.
On a separate note: http://www.redapplelipstick.com (no, I don’t sell it or get anything from it) launches GLUTEN FREE MASCARA on July 31st! They are a great company that is just out to help us. 6 month money back guarantee!
Hi Jennifer, I just saw your video from the Jon Stewart show and I totally feel like crying. Your story is exactly MY story and the tears are from knowing that I am not crazy ( they gave me Zoloft), that the knees buckling, and the panic attacks were symptoms. I am off to buy your book and check out your bakery. Thank you for sharing your story, it means so much to so many!
My husband saw you on John Stewart, he recorded it and made me watch. For the past 12 years I’ve been very sick. Well I’ve had some sort of symptoms my whole life, now looking back. I’m a mother to 4 boys, although they are so spaced out due to so many miscarriages (27, 20, 16 & 4). I want to be around, I want to play again. I’ve been diagnosed with lupus, but am now told that’s in remission, iron deffencency anemia (I now have a port a cath to receive transfusions & IV iron) I’m getting worse instead of better. They say I have fibromyalgia, Sjögren’s Syndrome, High blood pressure, Enlarged liver, Hashimoto’s thyroiditis, Antihospholipid syndrome, depression, anxiety, & last week osteoarthritis in my knee. I have a pill box that’s the size of a best seller book. I need a pill wrangler to keep up with refills and correct dosages. I’ve lost conscienceless many, many times, once on a plane to Seattle, no one can explain it. It’s the tests that come out normal that keeps the doctors guessing. I get a lot of “we just don’t know, if you test positive for this, you should have this” and I don’t. I’ve been tested by blood twice for celtics both negative. A sample was taken from my small intestines, that was negative, but the Gastro doc was so sure that he begin to ask me about my diet. At the time we were living on the jersey shore and we were following the Atkins program. Due to years of steroids, I’ve gained too much weight, although my cholesterol is always normal. That doc said Atkins had no gluten and since I’d been on it 4 months, I would need to go back to gluten for the test to be positive. For me gluten is a comfort food, I’m from the south and Mac & cheese, well just feels good to eat. And since I’m testing negative to celiac, I began eating whatever makes sense. But now I’m just lost. Your symptoms sound like my life. But to look at me, I appear healthy. But I know I’m not. I don’t function without medication, and with the meds I often don’t function in the way I should. I can’t get the words from my brain into my speech.. That is even if I can recall the thought. My brain feels like a tall file cabinet and it’s full of files containing all of my information and I can’t access it. This leads to insomnia. Ambien is my dream when it works, and my worst nightmare when it fails.
So I spend nights reading blogs and doing research, and of course making notes! I have to find a better way. Reading your story, started a little shift in my perception of myself, and how I see this pain. I’m owning it more. For the longest time I expected to wake up one day and be pain-free, but I now really, REALLY know that it’s not in the cards for me. I have a problem with chronic pain, and will likely have it for the rest of my life. It’s a disease; and my body is reacting to something, but I’m so confused as to what.. The medication is a blessed curse. Some work, some do not.. And the ones that do work stop working for no reason at all and that’s terrifying at times. But I know I’m not alone. I’m feeling like I need to go back down this rabbit hole now, since I’ve added gluten back to my diet and see if in fact I have celiac. I’d love to not have limitations. I’m 44 and should be a able to walk at the zoo with my young son.
Thank you for coming forward and giving me hope again to fix myself. I had long given up on any tangible cure.
Fondly, Lori
My daughter was diagnosed with Celiac Disease three years ago. She is also Lactose intolerant. As long as she eats gluten and lactose free she is free of the everyday stomach aches, etc. Lately though, she has started to loose a lot of her hair and her finger nails peel. Has anyone experienced this?
Thank you
It may have to do with vitamin intake or lack there of. I developed club fingers and toes and my nails split all the time. I would definetly discuss with physician for guidance.
Just an FYI for everyone doubting the need for using gluten free shampoos, lotions etc. It will affect you, your skin is the largest organ of the human body and what you put ON it enters your system, rapidly. There are gluten free product for beauty and hair care that are great, Organix, Younique; let me know if you are interested in more names.
Thank you….THANK YOU for sharing what NIGHTMARES most of us ( Celiacs) go through ~ prior to diagnosis and EVERYDAY.. THANK YOU .
Prior to being diagnosed I had seen so many physicians and specialists. So many tests were run that came up negative and I was being told “I wish I could help you” but with all the tests negative no one knew what to do. I was so short of breath, totally incontinent,” severe coughing, couldn’t eat and crying all the time. Depression was one doctors thought. I was at the end of my time. I decided to give up and let nature take its course. My internist referred me to a GI doctor. I walked in and let him know he was my last chance and could he please save me. He told me that day he believed he knew exactly what was going on but wanted to do the testing before discussing in full. I had the blood work that day and was back in another few days for the scope. I was told I was in celiac crisis when I came in and that diet control and proper nutrition was the way back. I’ve been feeling better but never 100%. I just learned I have another mutant gene labeled MTHFR which doesn’t allow me to process folic acid or folate. Now I have to start even more restrictions. Milks, multi vits, etc. I’m beginning to believe that if you have an auto immune disease that it’s the metals and folic acid type additive that are tearing us down. Thanks for listening. I’m learning so much from all of you.
Just saw you on the Daily Show and just read your story. Mine was very, very similar as I suppose many people’s are. It’s been 7 years and I’m still struggling with the long-term effects from being undiagnosed for over 20 years. But, I do feel better and know that I will live better, even if each day presents a hurdle. Great site – thank you!
Hi Jennifer,
Thank you for this! I too went through YEARS and YEARS of tests only to be given Valium and told it was all in my head. I was 65 when I was finally diagnosed! Life is better now, but the long term damage (fibromyalgia, arthritis, allergies etc.) is too extensive to ever be completely cured. I am just grateful that others are not having to wait as long as I have and therefore may not have as much long term damage!
Nancy
Thank you for putting your story out there. It has really helped me.
I have ordered from Glutenfreemall.com and they are pretty good – they send coupons often.
My favorite bread is Canyon Bakehouse. Not dry at all.
Thanks, I’ll give that a try.
Jennifer, what have you found to be the effect of probiotics on the intestines? Should we take certain kinds, larger doses? I eat yogurt everyday as well as large (80 mm) doses of probiotic. I do have more gaseous feelings & IBS when I do eat gluten products. Thanx for reply, Trish
You mentioned the “lump under your ear”. Do you have a picture showing that? In addition to so many of the symptoms and dignoses mentioned by you and your readers, I have a “lump” gradually enlarging beneath and slightly in front of my right ear – - my doctor says it’s just fat – maybe it is – I’m way overweight – - but I’m wondering what your “lump” looks like and if anyone else has dealt with that and the itching draining ears. (. . . as thought the other symptoms weren’t enough ~) [BTW there is pressure under my left ear similar to, though milder than, what I feel under my right ear.]
Hi Jennifer,
I do consulting work for the CSA Foundation (helpingceliacs.com) and marketing. They just hired a wonderful Executive Director who used to work for Proctor & Gamble as their marketing director for 10 years. We both are interested in collecting celiac stories to feature on our site during our September fundraising efforts (Samuel Gee’s birthday). Would you like to contribute your story in an effort to inspire others to donate to our foundation? Read about our current projects at http://helpingceliacs.com/projects/.
Thanks, Carla Spacher
P.S. Love you in Taxi Brooklyn!
Hi I seen you on the daily show. I just got diagnosed with CSA yesterday, but I have always had colon issues. I stopped eating red meat like 15 yrs. ago. I just don’t know where to start. I am a single mom with a 12 yr. old at home. Do I incorporate this in her diet? I am feeling loss and scared.
Please relax. I have been a Celiac since the 1950s. Now oat meal for breakfast add a banana, nuts, figs, anything to it when you cook it.Yes I mean cook the banana with the oatmeal. The bread is expensive do not give it to your daughter it is junk full of sugar salt and fat. You just cook normal. A celiac diet does not need to be expensive. Beans, chickpeas, vegetables are all good. Red meat is wonderful also but small portions.
Use your common sense and realise that this will cause panic attacks at first. But once you figure it out it is a fun and exciting diet. Do not tell other people that will make you different. And they will think you are nut.
It is too bad that quinoa is so expensive now it used to be cheap before Dr. Oz and it is not very high quality now. So forget about quinoa. The quinoa grown for export is rubbish.
Just relax and do not buy gluten free junk food like muffins they are only good for when you can not get access to anything else. Tuna and crackers are good for lunch or anything that is portable. Lunch when your working is a pain.
Relax and do not panic it will be fun and you will become a better cook. Indian food is easy with packaged products. Usually gluten free. It cheap to make at home an easy. not all of it is gluten free.
Please a gluten free diet is a little frustrating but it is healthy and you will lose weight and you are not crazy.
Gluten free products should be avoided. Always if you can but sometimes it necessary when travelling or at work. I hate them it is a marketing rip off. I blame Dr. Oz for ruining quinoa but he did it with the best of intentions.
Ross
The best advice I got was to go basic. Brown rice, quinoa, colourful veggies, and meat in moderation (personally find salmon and trout to be more gentle on my system), and natural sugars like maple. Treat yourself as you would treat a best friend- and concentrate on getting better. The only place to be ruthless is in the kitchen cleanup. You’ll have the best chance at feeling good it you’re able to be certain you’re not getting gluten anymore. My kitchen barely has anything I can eat right out of the box…it is full of ingredients though! Breakfast suggestion, boil a little quinoa until it’s very soft, add some berries – fresh or frozen, cinnamon and a little swirl of maple syrup or sprinkling of cane sugar with a tiny sprinkle of salt, and you’ll be energized until mid-morning. Suggest starting with smaller portions, as this breakfast it very dense
PS–keep up with your bloodwork. Thyroid, anemia, and vitamin deficiencies are often issues, but they’re straightforward ones to manage. Happy healing!
Thank you Jennifer. I had the same feeling as you did – frustrated, ignored, depressed, anxious, stomach pains, and the list goes on. My issue is hypothyroidism which can cause digestive problems. I’ve gone gluten free and am seeing a naturopath for treatment. All the MD’s were telling me to go to a psychiatrist and prescribing anti-depressants and anxiety medicine. My TSH was normal but I complained for about 5 yrs. about diarrhea that I was having daily. Nobody thought to check for bacterial overgrowth until I went to the natural doctor. My daughter lives in Brooklyn and on my next trip to NY, will make your bakery a must stop. Thanks for sharing your story. This problem can be very lonely while you’re going through it.
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The symptoms you describe sound an awful lot like fluoroquinolone toxicity.
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Does anyone know how to find a doctor that understands and can actually diagnose celiac. I have been sick for over 10 years now and tested for everything including celiac. All of the blood tests come back negative. But the similarities with celiacs and my own symptoms are just not to be ignored. Everyone including my own family keeps trying to convince me that it is stress or “all in my head” and oh how I wish that were true. I’ve been to so many doctors including several naturopaths. If they do believe in celiac, they don’t know what to do with my negative blood test. I do have Multiple Chemical Sensitivities (MCS) and that also complicates it.
At this point, I’m ready to see a shaman.
Susan, have you ever been treated with a fluoroquinolone antibiotic? Google fluoroquinolone toxicity symptoms and see if it fits. Most common are Levaquin, Cipro and Avelox, but there are many others.
Dang it, I just got off a dose of Cipro for a kidney infection, which is very dangerous if left alone and not treated with an antibiotic. I wish I had known about this before my kidneys got infected. Neuropathy is not really my problem though except for some slight numbing around my lips from time to time.
I don’t recommend them for anyone, unless it’s a life, or death situation. There are safer alternatives, although all can cause issues, they aren’t as dangerous as fluoroquinolone antibiotics.
Oh, by the way, neuropathy isn’t the only thing they cause. Type “floxed” in a search bar and look for symptoms.
So many doctors are not versed in Celiac disease beyond the facts that it is a tummy ache caused by gluten, and the only treatment is to give up gluten. They think it is as easy as give up bread and cereal.
There is something called non celiac gluten sensitivity. If you cannot find a doctor to coach you, try going gluten free and see if it helps. To get a true gluten free diet, it must be absolute. Look at all of your foods. To determine if they are gluten free, they must either be labeled gluten free or you must first check the ingredients to eliminate all foods that contain wheat, rye, oats, or barley in the I.gredients or the warning labels. Then call the manufacturer to make sure there is no chance of gluten used In the processing or any possibility of introduction by cross contamination.
A good way to start is eat only meat / vegetables without sauce or special au jus, and rice that has not come preseasoned . Be careful of chicken and some processed meats like cold cuts because they often contain gluten. Chex cereals have several gluten free options.
Join a celiac group on Facebook for a lot of more detailed support.
Good luck.
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Thank you so very much for all of your work in bringing Celiac awareness to those struggling with this invisible disease. Reading about your childhood and neuropathy experiences brought tears to my eyes, as it was like reading my own diary. It feels amazing to be heard and understood. Thank you! I am so looking forward to reading your book!
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and stomach troubles. Her skin rash, also a prominent celiac disease symptom, was less noticeable. Once research was completed on celiac disease, I was able to understand the disease and provide support to my friend in the pursuit of good health and wellness.
Ms. Esposito,
I simply wanted to sya thank you, from the bottom of my heart! I saw your appearance on the Daily Show while watching it with my boyfriend who has a preference for it. When you began to talk about your struggle, symptoms, and diagnosis, he immediately exclaimed, “That sounds exactly like what is wrong with you!” What he meant of course, was the symptoms that you experienced that I too was also suffering from; brittle nails, hair falling out, skin rash/sores,fatigue, joint pain, bloating, all of the gastrointestinal complications, etc. I proceeded to do some research, staying as close to credible sources as I possibly could, and consulting with my doctor. I still have not gotten a complete diagnosis, seeing as how my doctor is not a very competent individual, BUT, since I have adjusted my diet and cleansed my kitchen and home of all things gluten, as well as dairy AND soy (I cannot have any of these), my health has improved DRAMATICALLY!! I still struggle with some of the symptoms and do have an occasional flair here and there, but I and all who are aware of my situation have noticed an improvement. I am also an aspiring actress and I recognized you from your guest appearance on Law and Order: Special Victims Unit, and I was given hope and inspiration by your willingness to share your story with the world. I love visiting your website for recipes because I LOVE to cook. Again, I just wanted to extend my thanks to you and I hope your journey continues with such success and healthfulness.
Hear ye!!! Your story = my story, but in 1994. My favourite way of describing what is was like then is to retell how many times I had to say “No…not vegetarian, I can’t eat WH-eat…nothing with gluten”. Second favourite was when a well meaning person gasped, “No, you can’t have flour?!! I should have brought the whole wheat one!” Constantly and gently educating everyone, I am
I’m still struggling with allergy symptoms, but have no allergies that register on any tests, and like you, I’ve had to hold my health in my own hands for many years. But it’s ok, because that’s a good place for it- So happy you’re feeling better and using your name and every outlet there is to educate and support others. Cheers!
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I just found out about your celiac today. My 11 year old daughter was diagnosed October 2013. She was sick all the time and just couldn’t figure out why. Tons of tests. Nothing. Then, a friend suggested a Chinese medicine doctor who commonly tests for food intolerances. I decided we had nothing to lose. Only thing was that insurance didn’t cover the test. It was $200. I was shocked when gluten, dairy, eggs and peanuts came back as very high intolerance. Immediately we eliminated everything. I read so much my eyes hurt. Yet, her joint pain didn’t go away. It got worse. I thought she might be developing arthritis. Nope. Severely vitamin d deficient. Her level was 15. She would cry coming home from piano lessons. Two months of a liquid oil based vitamin d, her level was up to 37.5. Still not ideal but she was finally feeling better. She did have a few episodes of fast heart rate. No diagnosis to confirm cause. It was determined it was probably her “allergies” causing it. It’s very exhausting. All she wants to be is a “normal” kid. As a mom, I try so hard but what frustrates me most is the community’s lack of education. This is epidemic. Look at the gluten free menus at restaurants and the gluten free section at your store. Go to Disney. They will have a private chef cater to you. Yet, when you tell your server to please hold the bread or no crackers, they don’t get it and look at you like you are crazy when you say now you have to send it all back. Yet, who gets to go to the emergency room when your kid is doubled over in pain? Not them. It’s comforting to read we aren’t alone, but it would be more comforting if our food wasn’t tampered with causing this adverse reaction. A workmate of my husband traveled to Italy with his wife on vacation. She ended up eating pasta there. Amazingly, she didn’t get sick. What’s the difference? They don’t buy wheat from the U.S. You be the judge. I’m so sorry to hear about what happened with Blue Bloods. I just started watching it on Netflix from the beginning. I’m enjoying it. I actually met Donnie when I was 18 at a meet and greet in Jacksonville, FL. Good times. Best wishes.
Hi Jennifer,
It was cool reading this, then at the end I saw Espisito and I went no waaay, I loved you in the sopranos!! Basically Gluten is the devil! I used to think people who were picky about Gluten were annoying do gooders, but now I know from experience just how much Gluten was tearing up my stomach! I have had a sigmoid colonoscopy but no diagnoses yet. I believe I have Crohns a sister disease to lupus. My whole life I watched my grandma battle Lupus. Lupus, Fibro., Crohns, Celiac, are all sister disease, and 70 percent genetic. I too am an actress and agree whole heatedly that prospering in that world is so hard, it would make a grown man crumble. I am bummed, I have retreated up north alone, bursting at the seems with talent, and I have to lay in bed in an unfamiliar place, with no one I really know. I consider going back to LA, but I don’t have the fight in me anymore. I moved down there 3 times already. I was thinking of contacting an agent when I am ready, but all I can really see is myself declining like I watched my grandma. I heard a lady died from getting pregnant while having Crohns. I am 37 on Sunday, and I have no children, and now I feel if I had a kid, I would be way to tired to chase him/her around. I am sure you can relate. I wonder if you feel way better, and if its a consistently better. Much Appreciation Sarah ps I could have used those pans you threw away lol…So glad you are ok girl!!
I don’t remember her on The Sopranos…
hi I was diagnosed with celiac when i was 10 i am now 16 and let me tell you it is very dificult especially now that I am a teenager when i go to birthday parties all they have is pizza and cake and i cant have either of them and when i ask for no bread on my sandwich everyone looks at my like i am a freak sometimes i will even eat gluten just so i am not “different” and i never get sick so sometimes i think i dont have it anymore is that possible… i really need some help.
They have gluten free versions of everything and many parties accommodate people with allergies these days. As long as you give them a heads up, most people are willing to look out for you. I’ve had gluten free cake, pizza etc…or bring your own, that not weird is it? Hey, I’ve done it and had it done before. Freschetta etc sells gluten free pizza and there are tons of cakes/mixes out there.
On another note, maybe you should get retested and if the test is positive, I suggest you not eat gluten as it can have long-term effects. I’d rather have my good health than popularity. I never ate pork or seafood growing up and didn’t have to conform to the parties just to fit in…no one cares that much and if they do, get some new friends. That’s all. Hope it’s useful.
Finally, someone that understands how I’ve been feeling, almost my entire life, not that I want anyone to feel that way. I was told I just have gluten intolerance, this past September, but I had already taken myself off gluten for a week, before I went to the Doc. I was accidentally glutened maybe three times last week any I’m still feeling the effects from it, so I self diagnosed myself with celiac disease, because I don’t want to feel any worse than I do now. If I did, I think would feel like I’m dying. I’m still trying to find more info on celiac disease. Thank you for sharing your story! You’ve always been one of my fave actresses.
I really want to cry reading this because as I’m sure everyone who has Celiac knows, the journey to getting diagnosed is terrible. I started showing symptoms when I was thirteen years old. I just got diagnosed this past September and I am now 21 years old. Eight years I was undiagnosed and eating gluten. When I tried asking my doctor to test me for this, as someone suggested it might be what it is because they noticed I got sick after eating wheat products, I was told that all I had to really do was just watch what I ate and that “there is no difference between Celiac Disease, Allergy and Intolerance”. Something about that didn’t sit right and everyone I talked to said Celiac Disease was far different. I instead went to my free clinic at college and insisted they test me – and they did. The results came back really, really, really positive and I got an endoscopy to confirm it as well as another blood test that came back almost four times higher than what was considered ‘normal’. I understand 100%. I’m just so thankful to finally have my answers.
Dear Jennifer,
From the time I got really sick, and ended up in and out of the hospital for 9 consecutive months, depression, unexplained illnesses, surgeries, pain, no energy, and so much more, until my positive diagnosis 4 days ago – 21 years! A friend just sent me your link. As I am reading this, I am crying floods. I have Celiac, and I’m not crazy. It has taken 21 years to find out what’s wrong. What a relief… A new, better, chapter is about to start in my life. Thank you for sharing your story.
Thank you for sharing. I was officially diagnosed with celiac last week. Your words and thoughts are so well written. After reading it, I felt like I was reading about myself. The most frustrating part of celiac is foggy brain. Again, thank you.
Just received my muffins in the mail. I ate my first one last night and almost cried. It was moist, delicious and still healthy for me who can’t eat wheat. As a retired baker, it has been so frustrating to try and bake with-out wheat and have a decent product come out of it. You have done it, thanks! Are you ready for a bakery in Hawaii. You then could write off your trips here:) God bless you and all you work for you.
My 21 year old son is having symptoms of stomach pain, head ache, trembling hands, had some numbness in fingers for a while. Does anyone with celiac recognize these symptoms?
All these comments have been wonderful to read! I had the same issues- brain fog,extreme tiredness,being emotionally unstable, the embarrassing bathroom habits, and the ever constant stomach aches. I lost my gallbladder ten years ago and that’s when I really started getting sick. Luckily, I had a great gastroenteroloist who I saw for a pre-colonoscopy visit. I was so sick I just unloaded on her with some pretty graphic symptoms! She immediately tested me for gluten. My markers were high so I had an endoscopy as well. As I came to following my procedures, my doctor told me I must be under an abnormal amount of stress as my stomach was so inflamed. When my test results came back, I didn’t have Celiac’s but I had a relatively new allergic/immune condition named eosinophilic esophagitis. It is an inflammation of the esophagus and stomach. With high markers for gluten, my doctor put me on a gluten free diet. It has taken two years to feel better. Now I know how wonderful it feels to have stable moods,to think clearly, and to not feel as if my stomach was on fire 24/7! It is so gratifying to read all your testimonials! I eat as clean as I can – meat, vegetables, fruits,nuts. Almost paleo. God bless you all!
Jennifer – thank you for your story and your relentless search to find an answer after being repeatedly told, “Nothing is wrong with you.” I went through a similar trek for more years than I can remember. As the years passed I became worse and worse. I saw every variety of medical professional – internists, oncologists, dermatologists, allergists. One thing remained constant, “There is nothing wrong with you.” Somehow it didn’t help me get better. Instead, I was getting progressively worse. I was exhausted all day; came home from work and crawled into bed for a 90 minute “nap”; woke up to eat supper; fifteen minutes later I would be lying on the floor of the bathroom, nauseous and waiting to vomit. In the middle of the night I would wake up from a deep sleep itching so badly I couldn’t stay in bed. The itching would arrive unexpectedly and with such intensity that it was impossible to ignore it – scratching brought relief only as long as I continued to scratch. My arms were covered with scabs, my shirt sleeves blood-stained. I could relieve the itching for short periods by showering with an oatmeal-based concoction I created, rinsing with a weak apple vinegar solution and taking antihistamines. Still. There was no way to stop the nausea and no hope to overcome the exhaustion. I had finally accepted that this was the way it was going to be; I wasn’t going to bring it up again with my physician. My wife refused to accept it. She insisted that,”This isn’t normal. You have to go back to the doctor.” She also kept trying different things. Finally, she asked,”Why don’t you try a gluten-free diet? It’s worked very well for some people.” I almost ignored her. How could something so simple be the cause of so many years of suffering? Wouldn’t one of the specialists I’d seen over the years have considered this? Instead, I listened to her. Within a week of cutting out gluten most of my worst symptoms had dropped markedly. Within a few months I had lost 25 pounds (Celiac disease does not necessarily result in weight loss), the itching had stopped, the exhaustion had disappeared and the nausea never returned. What a miracle. I am not a fan of everyone jumping on the gluten-free diet fad. If you don’t have Celiac disease, there’s no reason to avoid gluten. However, if you have strange and persistent symptoms that aren’t detected, ask to be tested for gluten sensitivity. Don’t believe there’s nothing wrong.
To Jennifer:
I just finished your article and will purchase your book.
If I were to tell you my story, I could simply paste most of your article into this comment- less the successful acting career and the fact that I’m a guy.
While watching the TV series “Blue Bloods” on NetFlix, I was dismayed to discover that you left the series. As an actor, you were new to me – and I was most impressed by your presence on the show. Truth be told, I stopped watching the show after your last episode.
Your article is written with passion and is a story that needs to be told.
The detox period of about four months was the most difficult for me. What followed was a new life (life without bread, beer, pasta – you know the rest). What also followed was renewed energy, an upswing in my career (I’m an Independent Management Consultant) and never again any upset stomach, sleepless nights and skin rash.
You’re a good actor, good person and a source of inspiration.
yours truly,
Damian J Childress
Willow Grove, Pennsylvania
P.S. Congratulations on your recent marriage!
I am 46 years old and diagnosed myself 4 years ago. I know what that sounds like but let me tell you why. I had severe bloating and cramping, a constant extremely itchy raised rash, 4 cracked molars requiring crowns, my hair was shedding at a ridiculous rate and I had crushing, debilitating exhaustion and brain fog. I fainted as a result of stomach pain and ended up with 20 stitches on my face. The thing is it didn’t all begin at once and it took me a long time to put the pieces together. I would come up with things to explain away each symptom as it became part of my life. I could tell the stomach symptoms were related to food but I could not figure what the trigger was. One day I had a light bulb moment that it might be gluten and I began eliminating it from my diet. I did not go to the doctor right away because I had just gone back to work after 15 years of being a stay at home mom and I didn’t want to take the time off (I was still always taking time off for my kids’ doctor appointments and it felt like too much). It took a long time to get “good at” being gluten free and after about 8 months I was convinced that I had made the right call, because I felt so much better. I thought I would only be helping the stomach issues and was amazed when everything else improved too. I never cheated, but when I messed up I paid the price for about 4 days. What I didn’t know was that having eliminated gluten from my diet I could not have an accurate celiac test. So by the time I went to the doctor and told her everything she said she could clinically diagnose me pretty confidently, as I was not willing to reintroduce gluten to my diet just to have a test to confirm what I already knew. Now I may have genetic testing done, because I still feel a little guilty saying I have celiac without the test results to back it up.
People sometimes ask how I can stick to the diet so strictly and I just say because it is not at all tempting to cheat. There is not one food that would be worth 4 days of misery and fatigue to me. I still occasionally have unexplained bouts of feeling glutened when I am almost positive I did not make a mistake, so I know there is more that I am sensitive to.
I just ordered your book and am really looking forward to reading it.
How can one find a competent doctor who understands and believes the neurological repercussions of celiac?
I struggled for years with skin and digestion issues. I never heard of celiac, or gluten intolerance. Didn’t know that the issues were connected. I was very fortunate to have a co-worker who has celiac disease and recognized what I was going through. He told me what test to have my doctor run. From there came the referrals to the specailists and dermatologist. I had to be form when they tried to send me to the psychiatrist. It was NOT in my head. I kept a food log, and started narrowing down what things affected me. I started to see a pattern. Gluten and dairy. I have been slowly learning how to cook and bake a whole new way. Thank you for sharing your story. I have always felt so alone in my symptoms and struggles, its nice to see others have gone through and still going through the same things.
I need some help if possible. I have a niece who has problems, so of course we need to get her favorite gluten free recipes. Being Italian we often make homemade ricotta cavatellis. Well my sister In law tried to make it with gluten free flour, but had a problem. She said the dough just wouldn’t hold together. Do you have a recipe that may correct this problem. The recipe is usually 21/2 cups of regular flour to 1# of ricotta. Can you help us please. Thank you
Not the same as homemade but Target has a great sweet potato Ravioli that is gluten free. Best packaged food I have ever had. And easy to make. It is Udi’s brand.
This guy who I have been friends with for two years now and I consider him my best friend has Celiac Disease. I never quite understood why he could’t eat gluten. I mean many people are gluten free by choice, but when he told me it was a real disease, all I knew was that it was similar to a very intense allergy. Now I’ve done my research and I get it, I know what all this is about but I have no idea what to say when he texts me during a early morning class saying he was in so much pain last night. I mean what can you say to that? I can’t tell him I understand, cuz I don’t have Celiac. I can’t say I hope you are feeling better now because he lives with disease and there’s no cure and it will happen again. All I want to do is give him a hug and tell him everything will be all right, but that’s probably painful and cheesy. Now what?
Jennifer,
I just came across your story in desperation and as reading it felt like you were speak about ME.
I have come to my wits end with Gastroogists and now he is retiring and have to find a new one. Have a appointment with a Nutritionist in 2 days to see if she can help me.
I have been in this horrible world of all the issues everyone speaks of for 25 years now and agree doctors do not know what to do or say to help us.
I am not a young person and would like to live the balance of my years in some of quality of life without staying home, not eating, in the bathroom, sleeping & loosing weight.
Does anyone have any solutions?
I feel this is among the most important information for me.
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question was your Lyme test done through IGENEX lab in california? if not and you were just tested with a standerd alisa test your test for Lyme was faulty and looking at all of your symptoms to me indicates Lyme I suggest you look into it. I have experenced all and luckly through many Dr’s finally found the lyme that I suffer with.
What’s up, I want to subscribe for this weblog to get most up-to-date updates, thus where can i do it please help out.
I do not have Celiac but I have read up so much last year because I had some issues with health, which are fortunately resolved now. After reading all your stories,my heart goes out to all of you, including Miss Esposito. I can understand all of your frustration and fear everyday because you are misunderstood by loved ones and co workers who think you are just being ‘fussy’ about food. I am Singaporean and in Asia, Celiac Disease is pretty unheard of, most of us Asians don’t carry the ‘celiac’ gene. I understand that Celiacs can get very very ill even from trace amounts of gluten and you cannot afford to be careless with the diet. And sometimes, your villi do not even heal completely even after going entirely gluten free. This is a very cruel autoimmune disease. I do hope one day, with more research into this disease, some wonderful doctor can come up with some ‘vaccine’ to turn off your Celiac genes. Vaccine is probably not the right word but you know what I mean. But I do hope all of you find a way to become well and stay well. With love from Sarah <3
OMG! Reading your post just brought tears to my eyes. You stated exactly how I have been feeling for such a long time. I had been dealing with various forms of just feeling “unwell” for probably 5-6 years. My symptoms had gotten so bad that I had the constant foggy brain that then morphed into migranes with aura, yet with no gut symptoms. The worst migraine episode was I was home alone one day and lost complete vision in one eye, minus the squiggly lines around the blind spot and what remained of my peripheral vision. It only lasted at most 20 min, but to me it felt like forever and scared the hell out of me. I then found myself searching online for what it could possibly be, and being even more scared at the thoughts of a stroke. I was only 34 at the time that can’t be it.
We then read the book grain brain and decided to go “gluten light” after realizing how bad processed grains are and the issues they can cause. While that did in fact help me with the foggy brain, it then brought on a wealth of other symptoms that I had never experienced before. Horrible joint pain that would come and go, numbness in hands that would come and go, horrible gut problems, especially gas that just never went away no matter what type of OTC meds I took. I was belching constantly just to feel better, and needless to say got a lot of strange looks from my husband. I just couldn’t help it. I so desperately wanted to feel better, and never thought I could have such an issue with gluten.
After even more research I found that all the symptoms I was experiencing were in fact gluten related, and at that point I decided to cut out gluten 100%, yet I was still on the pill and for some reason my symptoms improved some, but not greatly. I was beyond frustrated cause this “fix” made me feel a little better but not the 100% back to normal self I was over 6 years ago. I then read that the pill could actually feed an existing inflammation in the body, and was probably the one thing left in my diet that was hurting instead of helping me.
I have now been 100% gluten free since about Aug 2014, and I am still frustrated cause I feel better yet there are days when I feel 100 times worse, today being one of them which his how I ended up finding your site. I have not had any gluten yet I have been dealing with horrible joint pain that comes and goes, as well as my normal level of fatigue even after a full nights sleep. I am scared of the symptoms I may have to face in the future on this path to feeling better, and was happy to see I am not alone in this struggle. I still do not know whether or not I am a full blown Celiac or just sensitive as I have never been tested, but with everything I have been dealing with I fear it may be worse than I once thought.
You my dear have all the symptoms of Lyme disease I would look into it going gluten free helps with Lyme and makes you feel somewhat better, what do you think causes Celiacs and symptoms? Look deeper and you will find the answer I to have all those symptoms and have been diagnosed with Lyme. It is worth ruling out if you want to fully restore your health. Just a heads up the elisa test is faulty try the western blots good luck to you.
Chris
I currently am gluten free, have been for about 8 mos now. I am better, but in no means 100% back to normal just by cutting out the gluten so I’m pretty much sure that status of my gut is pretty bad. Sorry if this is TMI, but you can sometimes tell what you ate the night before, so I know I am not getting all the nutrients from everything that I eat. For me I just think its going to take time to heal. Some days are better than others, and I don’t have the migraines that I used to get anymore which is great, just the body aches that kinda suck and the fatigue. Just happy to see I am not alone in this battle.
I have Celiacs also passed it on to my 16 year old daughter. After her small bowel biopsy the hospital gave her packaged cookies with gluten to eat. It is so ridiculous hospitals can’t get this diet in gear for us. How can we change this? Who can we talk to?
Karen
Jennifer,
I know this probably isn’t the place but… I absolutely loved u on Blue Bloods!! U are my favorite actress ever!!! I just wanted u to know that. It’s been my dream to meet u in person… Also, u have a super fan who loves// and misses u sooo much…
I’m sorry i couldn’t contact u any other way… But I did love your skills on Blue Bloods i don’t really like it anymore. Because your not in it… Sorry if this isn’t the place to say. // just wanted u to know I’m a HUGE fan of yours
My brother suggested I would possibly like this website.
He was entirely right. This post truly made my day.
You cann’t imagine simply how so much time I
had spent for this info! Thank you!
I dreamed of finding the answers to my health problems as young as you and I would have been the happiest person if gluten intolerance research came out earlier. I would have had career more kids and a happy marriage and successful healthy kids. But, I got it out too late in my fifties after losing so much. Each day I realized that if I could order my own blood tests rather than having to ask the ignorant doctors I would have had a great life and my kids would have been healthy. But NYS makes patients powerless against stingy gatekeepers as well as nice doctors so confused that they think iron deficiency or caffeine intolerance they don’t know how to diagnose is treated with meditation. Many of us who were fatigued and anxious from eating wrong foods because we listened to doctors to eat high fiber and low meat and to exercise ended up domestic abuse victims, some even ended up in mental hospitals, most of us were divorced and many of us had miscarriages and many of us had disability isolating us. For me life got worse after I got gluten out and found the formula of which foods and vitamins worked. I had to watch my young adult son go into disability because although I cured myself after ten years of research, but no one would believe me of how I cured my chronic fatigue and tell my son to listen to me since I was still panicky from the sleep deprivation and the treatment I got in marriage and begged full time for my husband to help advocate with docs for our son.. Instead of helping our son and forgiving my gluten years my spouse watched our son go from being an ivy leaguer to being completely disabled, divorced and still encourages him to eat the foods which disable him as gluten payback to me for all the hard years. My life is a soap opera and I started out the shy glutened gentle tired girl who was an excellent student but so quiet who never could have dreamed up such an impossible life. Now I have PTSD from what doctors did and how I was abused and how I became angry so now I am disliked. No doctors have ever apologized for what they did. A pediatrician saying my son had senioritis and that he could not justify an iron screen destroyed my whole family and all I did to raise my son and put my marriage over the edge. Thankfully everyone has heard about gluten now and so many are being cured early enough to have good lives.
I feel a lot like you, Deb.
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This is my first time visit at here and i am truly impressed to read all at one place.
I just finished your book – it took me a year because every time I started, I’d cry and have to put it down for a while. So much of it parallels my own story and I’m so grateful that you wrote it! I was diagnosed 8 years ago and the celiac support groups were all “rah rah, let’s try this restaurant and this vendor…” I could never get myself to participate because I was either too sick still or just rejecting any activity that involved food. I thought I was the only one who didn’t have a 180* turn around once getting off gluten and wanting to explore every gf option out there. So, knowing that I’m not the only one is more important than anything else. I wish everyone diagnosed would be required to read Chapter 18 (Relearning how to eat). That alone would have saved me years of agony from eating foods that weren’t gentle to my healing guts. My Dr. and nutritionist were no help at all.
My greatest thank you, though, is for releasing me from this false idea that I could be “normal” again and making me realize I’m responsible for how other people treat me too. You have given me permission to fully accept that I have a disease, it’s not curable and I’ll never be carefree again, and that is ok. I have spent 8 years of my life trying to get back to “normal” so I could not bother other people. So, thank you for giving me back my power and accept that this is me and not going to change so I’d better get over being normal.
Dear Jennifer,
So glad for you to have finally found out what was ailing you! Goodness! The only other person I’d ever heard of having Celiac Disease is Elisabeth Hasselbeck who used to be on The View. She would mention it often through those years on the show, and about having to be gluten free in everything. She always looked so well. I had no idea how debilitating this disease is! Please forgive my ignorance.
Saw you last night on MISTRESSES. So glad to see you back on TV! Blue Bloods is not the same without your terrific talent!
Next time I come home to visit family, I will be sure to stop by your bakery in the city. How thoughtful, generous, sympathetic, empathetic and KIND of you to make a way for others with Celiac Disease to find good, safe food to eat!
God bless you! CAT
Thank you so much for your book Jennifer! I was diagnosed with the digestive disorder fructose malabsorption after years of being sick and your book helped me through the process. I recommend your book and tell my story at http://contentedbelly.com/2015/07/06/book-club-jennifers-way/. Your story and advocacy on behalf of celiac disease is an inspiration.
Ooops I may have posted a comment in the wrong forum….oh well . Anyway, I need advice asap. My “attacks” are getting much worse. My now New Dr. Is already frustrated with me because I ask for more tests and they all come back fine!!! Last week I dropped to the floor at my fiance’s house, begging him to take me to the ER even though I couldn’t walk. I was vomiting amongst other things and I had to bring the basket with me. Before, I only got a slight pain, extreme fatigue, nausea, extreme dizziness, and vomiting. Now the pain is bad! My Dr says to me ” Well I don’t know what else you want me to do unless I send you to a surgeon.” Ummmm for what? What’s he gunna open up? Where’s he gunna look? The way she said it was pure frustration and sarcasm. I changed primary cares for this same reason. I wanted to slam down the phone and cry. What else could this be?! Another Dr. wanted to yank out my gallbladder….even though my tests all say it’s fine. I don’t know what else to do. GI Dr.was no better. I know whatever is happening is GI related. Its something I’m eating or not getting enough of. I’ve had a CAT scan, ultrasound, celiac test, tested for Chromed and Colitis…..my heart was tested, colonoscopy, and there was this 2 hr test. I don’t know anymore.
Jenise, please look at this website and try to find one of those doctors who practice functional medicine. http://functionalmedicinedoctors.com/
There are a lot of tests that can be done and that no other doctor would recommend. Look at Genova diagnosiecs lab. They do a blood test for food allergies, comprehensive stool test that shows the actual state of your digestive system. They can send you a list of doctors in your area that are working with them.
I am not a doctor, I am a mother who has a daughter with celiac disease and IBS. We found a doctor who is working with us after two years of suffering and no help from “regular” doctors. We live in Philadelphia area and I can recommend a doctor here. Also look at this link: http://ibstreatmentcenter.com/
When you have these kinds of unexplained symptoms you need to look for a right doctor. Please do. Also try the elimination diet and see if you getting better with elimination of the groups of food for several days. Read about MSG (monosodium glutamate) and reaction to it.
Good luck.
I was just diagnosed in Dec 2014. I have been struggling with it…still. Cross contamination is my worst enemy. Still hard for my family to understand what I can and cannot eat. Still frustrating every day.
My daughter started watching Blue Bloods. I kept watching it on Netflix because I liked watching Donnie and Jennifer. I love her character!!! Then I noticed she was gone. When they brought in a replacement still without a word about Jackie I looked up what happened on the Internet. I almost cried when I read why she was no longer on the show and what happened. My job worked with me as much as possible at first but after a couple of months in and out despite my efforts to stay strong, it affected my job. I stayed strong and pushed through!
Needless to say Jennifer your story still touches my heart. I have read it over and over. It is so amazing how our stories are similar. The doctors, the visits, the tests, wow. I am so blessed to see you successful and overcome. It gives me hope. Thank you!!!
You have described what I’ve been going through for twenty years…I kept saying its fibromyalgia… But doctors say no and send me away with anti inflamatories, which I think I’m alergic too and pain killers, non of which work…..tried cutting out glutten seems to help my IBS… Done it for three weeks now (got itvwrong few times. ) but not helping my body pains… Maybe my pains are something else….being sent for celiac tests but if I’m not eating glutton it won’t show up ????
I am going through the same thing. All over body pain. I have quit eating gluten but hasn’t helped. Very scary for me right now. I have to quit work I don’t feel we’ll enough anymore. I’ve tried everything. Don’t know what to do now. Help!
Hi
It is so heartening to see the support that this story is giving people. Modern medicine seems to offer very blunt responses. I just wanted to add mine because it would have helped a long time if I had known what I know now.
My son, who is now 20, always suffered terrible night terrors, night sweats, day time hallucinations and hearing voices from baby hood. It was heartbreaking. I could get no help from doctors who I started to think, put it down to me being crazy. My marriage broke up over it. (Our son didn’t sleep for days and nights at a time and my husband snapped). He was clever at school and popular but the school said he was unteachable. I would say ‘unreachable’ was more the word.
I made sure he played outside all day; lots of friends and exercise; organic wholefood diet plus milk from evening-milked cows so it would have more melatonin; gentleness and calm; no TV limited computer. Nothing helped AT ALL!
He also spent a lot of time on the toilet. He is very funny and it became a joke. He stopped eating a lot of foods (like bread and pasta) instinctively. He is thin and starving hungry; always asking for meat and feasting on tinned fish.
Anyway, to cut a long story short I could see where this wasn’t going. I was falling into the role of ‘carer’ for a beautiful young man who had been discarded by the medical profession. With nothing to lose – and with his consent – he has stopped eating all dairy and gluten. His sister and I have joined him to make it easier.
I feel much better (but this isn’t my story).
The first week without gluten and dairy I thought my son was going to be lost forever. He adapted to the diet with ease (he had gone off food anyway). He started yawning and saying he was tired which was a first. We had a lovely peaceful evening just chatting. Then he went to bed. I can’t adequately describe that night. It was like something from the exorcist. He is a gentle spirit but I was afraid. Night sweats, screaming running through the house, smashed up bed. At 5.30 am he slept for a bit and I watched the early morning light and realised this poor man was coming off terrible ‘drugs’ – gluten or casein or something related. I don’t know.
After the ‘fever’ passed the person who has emerged is someone I have never met but always knew was there. It is as if he is waking from a kind of drug induced psychotic state and he is seeing his life for the first time. He has lost his haunted twitchy look. He feels empty. Not great.
These are early weeks. The improvements are dramatic but it’s one day at a time. He looks like someone who has had a hard life. I have bought magnesium; he walks a lot so he is getting vit D; I wish there was a professional who could really advise. It seems shameful that a child – now young man – was just left to deteriorate mentally.
I can hardly bear to think of it but there must be a lot of people who become psychiatric patients because of ‘food poisoning’ which is what this amounts to for him. If one parent reads this and it helps I will be just delighted.
Wishing you all well
Thank you Bridget
He looks really interesting and I will get one of his books to start with. Have also found the GAPs diet. It’s remarkable when you find the way forward is actually right in front of you, crossed fingers.
With gratitude
Em
So happy to share with you my experience with Dr. Lipman. I actually just bought one of his books too. He simplifies everything so the food choices are both attainable and sustainable. Wishing you and your son all the best. I will look into GAP diets! I remember hearing something about them at one point, so thank you for that reminder.
Best,
Bridget
Hello – your story struck me. I think I may know of a doctor who might be able to help your son. Dr. Frank Lipman is an internist with a well rounded holistic practice which focuses on the microbiome of the gut. The initial visit is not cheap, but I viewed it as an investment in my health using the rational that if I added up all of the co-payments that I have made to doctors throughout my life, (all who were ultimately unable to make any connection between food and all of the weird things that were happening to me), it was almost an even wash. At the very minimum, It might be worth checking out his website and subscribing to his e-newsletter. http://www.drfranklipman.com/eleven-eleven-wellness-center/
He has changed my life so much that I actually consider him somewhat of a hero. I wish you and your son all of the best on your journey to improved health.
Bridget is a known shill who gets paid to promote Doctors
Oh my gosh! I was shocked to see this comment about me. Sorry to disappoint, but this is not true. I regret I even posting this now. No good deed goes undone, isn’t that what they say?
Believe what you may, I have never been paid by any doctor for anything, much less to promote his/her practice, no have I ever been approached to do so. I simply felt compelled to share my story. Sorry if it offended anyone. :/
My mother died of Lymphoma (attributed to the fact she had undiagnosed Coeliacs). This, we believe, killed her in the end which Coeliac can do. My father had it (both of them had stomach problems for years. My sister & I both have it. 2 of her 3 children have it. Both my children have been tested but nothing so far. They will continue to be tested for the rest of their lives. Anyways, I’m from New Zealand and am visiting Jennifer’s Way Bakery and am so excited. Its right at the top of my “to do” list.
As I’m reading this my eyes are filled with tears. I’ve been feeling sick for 2Years with so many infections and antibiotics. In the last 5 months I started having extreme anxiety and depression for no reason. I started having severe gerd and tummy aches. I started having dizziness and headaches. Neuropathy. Nausea. Well I was thrown anti anxiety meds even thought I kept telling my doctors that this isn’t who I am. I’m not an anxious person. I’m not a person who gets depressed. They kept telling me that it was just anxiety and depression they threw pills at me… that there was NOTHING wrong with me… yet in the meantime I’m losing weight and they’re telling me that I NEED to eat… but I do eat… I’m eating 2000 calories a day which is more than enough for my 5’2 frame. Well I just found a new doctor and he told me that my symptoms sound life Celiac or gluten sensitivity. He tested me and I’ve been gluten free for 2weeks. My severe all day anxiety GONE. My insomnia. GONE. I’m still having gastro issues and some joint pain or leg pain but I’m goping that it’ll resolve after some time. I’m still a bit depressed but not as badly as before. My brain fog is gone. I can’t believe no doctor was listening to me. And this one after one visit tells me I sound like I have Celiac! I told him doctors tell me I’m healthy but I don’t feel healthy. My hair is falling out…my nails are breaking… I’m skinnier than I was in high school. And my body aches. I I have anxiety for the first time in my life with panic attacks… I told him I’M SUFFERING and I’m only 26yrs old but I feel like I’m 80yrs old. I have EXTREME FATIGUE where all I can do is lay in bed ALL DAY. Now my fatigue isn’t all day anymore. Only after I eat sometimes (I’m guessing bc my body is struggling with my digestion… but I do believe it’ll get better. Doctors need to start to learn to listen to their patients instead of saying it’s all in our heads when they can’t find anything.
My name is Breanna Schwarting and I just recently turned 19 years old. Overall, I have been a healthy person my whole life until my senior year of high school at Smithtown High School West. After I ate food, I would get these terribly, unbearable pains. These pains controlled me. A few times, these pains were so extremely excruciating that my mom took me to a walk-in clinic. Wherever I was, I had to stop what I was doing immediately and run to a bathroom. If there wasn’t a bathroom around, I would suffer as these pains would stop and return almost in different waves. It wasn’t an acid-reflux pain or a stomach pain; it was a lower abdominal pain where the intestines are; and believe me, I thought my intestines were about to explode right out of me. I would pop tums all the time and take gas-x but nothing would stop these pains. The only relief I had was after I spent about 3 hours in a bathroom. These episodes drained my energy. My mom took me to a gastro doctor numerous times. The doctor assumed I had Irritable Bowl Syndrome (IBS) and acid reflux. I was instructed to take a prilosec called omeprazole. After months of taking this medicine 2 times a day, my pains never stopped. I was scared every time I would eat, especially if I was out in public. I tried to keep a food journal where I wrote down the food I ate before i got the pains. I still could not pin point which food was triggering these pains. I began to feel hopeless. I wondered if I had Crohn’s disease or some serious rare disease that would just take my life one day. I felt like I was just an unhealthy blob with no energy. At 18 years old, nobody should feel like that. Long story short, the pains seemed to get worse as time passed.I vividly remember my trip to fire island that was ruined by the greedy pains. I felt nauseous and exhausted all day; I couldn’t keep my eyes open. That night, I vomited numerous times. Finally, enough was enough. It was time to get to the bottom of this because I could not stand to live like that anymore. A few days after, I returned to my gastro doctor where my mom demanded that they order me a colonoscopy and endoscopy test. After I got these horrible exams, the doctors told me that my intestines were extremely inflamed and bleeding when they biopsied a piece.I was confused as to what would cause this. Was I dying? Would I have to get pieces of my intestine out? By now I suspected I had Crohn’s disease. When I got the results of these exams and other blood tests, it was clear that I had Celiac Disease. Its funny because months before these tests, I had blood work done and the results showed that I was border-line Celiac. My doctor said the lab values were too low to be considered Celiac and that they don’t look into it further unless the numbers are higher. Once I found out for sure, I wasn’t even upset or mad. I was relieved because I finally knew what I had and I was going to be okay. I remember thinking to myself, “It’s okay I just won’t eat bread, everything is fine.” Little did I know, gluten/wheat is in basically everything.Sometimes it can be depressing watching people bite into a slice of normal regular pizza but I can manage; gluten-free pizza is good depending on which brand it is. After a year of having Celiac disease, I have finally adjusted to the diet. Now I pretty much know what I can eat and where I can eat when it comes to restaurants. It is hard sometimes and I am limited at certain places but overall, there are a lot of tasty alternatives to gluten that allows people like me to live a normal, healthy life. I take vitamins everyday and maintain this diet and I have been feeling much better. The only problem is sometimes I am sensitive to dairy products and I have been trying to fight off infections and strengthen my immune system for a year now. Another issue is cross-contamination in restaurants and untrained staff. For example, I have recently ordered take out from Gino’s of Nesconset. On the phone I specifically ordered gluten-free eggplant parm and gluten-free spaghetti and I clarified that I have celiac disease and the food must be prepared in a safe manner. When I got home and opened the bag of food, there was a piece of bread that looked like normal bread. I called the restaurant before I ate it to double check and a girl on the phone said it is a regular piece of bread like I thought. This is unacceptable. I was then worried that maybe the entire meal was not gluten-free. I asked to speak to a manager and the girl said no manager was present and that she can assure me the whole meal is gluten-free. Furthermore, about 2 weeks after this event, I went to Gino’s to sit down and order the same meal. When I asked for gluten-free spaghetti with my gluten-free eggplant, the waitress told me they do not have any kind of gluten-free pasta and never did. I was confused and told her to ask her manager. Long story short, the pasta I consumed that day was regular wheat pasta. I explained this story to the manager and though he apologized, he did nothing about this. If a restaurant offers gluten-free food, they must train their staff on how to prepare/serve it and what Celiac Disease is. It is a huge deal. If someone with Celiac eats wheat; it destroys the villi in their small intestine which makes it difficult for the body to absorb its necessary nutrients. It inflames the intestines and can lead to cancer and extremely serious health concerns. Gluten-free is not just a diet by choice, it is a way of life for people with an autoimmune disease like myself. Something needs to be done to protect others who go to this unprofessional restaurant. In addition, I hope my story helped some of you understand what it is like to have Celiac and the severity of this disease. Once Celiac is diagnosed, it is possible to bounce back and return back to a normal healthy state.
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which is beneficial in favor of my experience. thanks admin
Thank you so much for posting this. Honestly it made me tear up because it was like reading about myself. I’m 24 years old and was just diagnosed with CD about a month ago. This diagnosis pretty much explains my whole life. The past year I’ve spent in and out of the hospital and doctor’s offices because my flare-up became so bad that the inflammation moved up to my heart and caused Pericarditis and Pericardial Effusion. The heart problems were actually the catalyst to digging deeper and finally finding out about having CD. I faced so much frustration because of doctors implying that this all might be in my head. I had a doctor actually tell me to my face that he couldn’t help me anymore and he literally did the action of washing his hands of me. It’s been an emotional year for sure, but today was the first day that I decided to actually read some blogs and patient forums. It’s nice to know that I’m not the only one having meltdowns and feeling a little overwhelmed by everything. I’ve been gluten free now for a month and I’m still waiting to feel like a normal person I guess. I’ve also been dairy free for 5 months because I found out I’m also lactose intolerant. My symptoms haven’t exactly gotten better, but my dietician told me it could take several months of being gluten free to feel relief. One of the symptoms that’s been an ongoing issue almost my entire life is a skin rash. It’s been so horrible lately and I’m getting married in less than 4 months and I’m worried that this horrible bright red welt-like rash is going to still be all over my chest/neck/shoulders/back by the time the big day rolls around (and I’m wearing a strapless wedding dress!
ugh!).
Ultimately, I wanted to write this post first off to thank you for this whole post. It made me feel a lot better and it gave me hope. Secondly, I figured I would share about my heart problems in case there’s someone out there with digestive issues and they have also been diagnosed with “idiopathic” pericarditis and pericardial effusion. Lastly, if anyone else has experienced skin issues, I would greatly appreciate your input on what you did to get rid of it or at least have it subside for a little while.
Thank you!
Hi Beccah – I am happy that you finally received an accurate diagnosis. I understand exactly what you have experienced, as I was finally diagnosed at the age of 34 after an entire lifetime of doctors either blaming me or giving up on me.
Anyhow, about the skin rash. I too have been plagued by a lifetime of mysterious skin rashes and last year it flared up so badly, that I just kind of gave up. I had biopsies done, tried countless steroid creams, it was awful, and I never got an solution.
Thankfully at the same time, I came across the “Get Well Cleanse” by Dr. Lipman, and my rash subsided within ONE WEEK. It was a group cleanse that offered tremendous support in the form of a private facebook page and group conference calls. It was life changing.
The cleanse focuses on rebalancing the microbiome in the gut. It was truly the most amazing experience and I haven’t felt that healthy since I was a little girl.
Anyhow, he is hosting another cleanse starting on Sept. 28th (it’s a 2week cleanse) and I encourage you to give it a try. It was the only thing that worked for me. I also lost 10lbs and I ate a well balanced diet and was never hungry. I encourage you to check it out. https://www.bewellbydrfranklipman.com/2015-fall-cleanse
The cleanse if free to join and to follow along, but I went ahead and purchased the shakes and the supplements, because if figured that if I’m going to do it, I’m going to do it all the way. The cost was around $210, but I figured with all of the money I have spent on medicine and copayments, it was worth the investment.
A few months after the cleanse, I slowly fell back into old habits, so I’m actually going to do the cleanse again myself in September. I’m not one to be able to commit to these kind of health things, but I felt so good on this cleanse, that it actually became addicted to feeling so good!
I wish you all the best and congratulations on your upcoming nuptials!
If anything, at least you know now that you are not alone and there is a whole community out there that truly understands your plight.
Take good care – bridget
Sigh, I wish I could have been tested for Celiac. Had the same symptoms – sleeping 15 hrs/day, freezing, losing hair, extreme inflamed joints with pain, inflamed lymph nodes, extremely sensitive teeth, yellowing of the skin but I had psoriasis so I was told it was psoriatic arthritis, end of story. I didn’t present with any stomach issues so as I was told – diet had nothing to do with it.
After years of meds did an elimination diet – wow. Have never looked back and got off of my meds. I have been gluten free for 3 years and still need a limited diet as I am still sensitive to many food. booooo. I feel too good to care though. PS. Most of my symptoms have disappeared except I still have bouts of hair loss here and there and an occasional spot from psoriasis.
I was diagnosed with Celiac Disease over eight years ago after a biopsy during an endoscopy. One of the reasons for the procedure was to check my esophagus for Barrett’s Esophagus which is a condition caused by years of untreated acid reflux (that is my understanding anyway). I went through a lot of the hellish pain you and your readers have described and I try hard to stick to a strict GF diet. I also check ingredients in all of my medications and herbal & vitamin supplements. I still suffer from symptoms and cannot figure out where they come from. Right now I am on day ten of running to the bathroom and feeling “foggy brained” and fatigued. I am discouraged because I can’t figure out where the damn gluten is coming from. It is not an easy disease to live with, contrary to popular belief. It’s actually difficult and I’d like to see ingredients on food labels defined in layman’s terms for a change. How do I know if “modified food starch” is from corn or wheat? Oh yeah, I have to call or email the company….and sometimes the reps don’t even know….frustrating! Thank you for your blog, Jennifer! It is much needed!
Pam,
Have you checked the ingredients on anything topical you use on your skin? creams, makeup, cleansers,etc? I have a horrible time with reactions to topical gluten, who knew it was in bath and body works hand sanitizer. Check the labels on anything that comes in contact with your skin, even shampoo, you may just find the culprit. I’m still struggling with feeling better, currently dealing with skin reactions that I’m not sure are gluten or just a new allergy. One of those times when I wish I felt normal, but this is my new normal, and I just have to figure out how to live with it. Hope you feel better soon.
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I’ll certainly comeback.
I got mine through Lyme Disease… another “imaginary” illness. (Even though it’s become a problem all over the world.) I feel so thankful that I have celiac in THIS day and age when gluten is listed as an allergen on food wrappings and not 10 or 15 years ago when so many fewer were aware of the disease.
I just have to remember to check my meds, skin care products and restaurants out in advance, and take my days with a helping of perspective.
Hi Jennifer, I can totally relate. I did not find out I had celiac until my daughter was diagnosed. Doctors thought I was crazy and was making up my symptom. It was such a relief when my daughter was diagnosed, she was a miracle in more than one way! My brothers and mother also were diagnosed. Thank you sharing your journey to health.
Exactly! everyone think’s you’re crazy and there’s not as much information of this disease as we would like. At this moment I feel tired and depressed, and yes people around me continue thinking I must be crazy because I’m so young to feel like that, so for me it’s important to know that there’s more people who lives with the disease and that really comforts me.
GREETINGS ………to every body , i am MORRISON BELL from LONDON(UK). I was once diagnosed with LUPUS in September 2014. I back than i was having skin rashes all over my body, this was very unbearable to me , then life was without meaning to me due to my health status , i tried my possible best to get cured but all seems in vain, So all through those period of my life, i was unhappy.
I still kept doing research on possible cure for LUPUS since 2014 though i knew science has no cure for it yet, few years ago while i was on search in the Internet i came across different testimonies on how this great man called DR.ODIGIE has been saving souls with his herbal medicine , people recommended that he has been using his medicine to cure LUPUS and different disease permanently and they advice that anyone who haven’t get in contact with him should contact him now for help.
So After reading several testimony from different people concerning DR.ODIGIE medicine for curing LUPUS , i said to myself that God could use any means to heal his servant , So without any doubt, i contacted him about my LUPUS Diagnosis treatment ,i explained my problems to him, without wasting time, he told me that he is going to help me , So he prepared a herbal medicine for me which he sent to me and he told me to use it according to the instruction that i will see on it, so i abide to him, before i know it, i was beginning to feel some changes in my body , the skin rashes i had on my body was gone and so i went for medical check up and to my greatest surprise, i was healed and cured from the disease i tut then can never be cured from my LUPUS but DR.ODIGIE gave me reasons to live , I am so very happy now as i am sharing my testimony and i want to use this medium opportunity to tell anyone who is having this sickness LUPUS or any kind of disease like HERPES, HEPATITIS B ,DERMATOMYOSITIS . ACNE, CHRONIC pain, syphilis, gall stone and lot’s more should quickly contact DR ODIGIE on his email at:(drodigiesolutiontemple AT yahoo.com)rewrite the email address in a right form before contacting him . His Herbal medicine is one of a kind and i believe he can also cure you too just as he has cured me..THANKS