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!

jennifer esposito's celiac storyShe 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.

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?”

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?

Jen and sister

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.”

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.

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”.

jen child

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?

For what little I did find, it all said the same thing – eat gluten free. What the hell did that mean?!

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?

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.

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

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This Post Has 130 Comments

    1. Edward Smith

      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

      1. Michelle Dyess

        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!

        1. Jodie

          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.

      2. Erin Cutting

        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 Kadbugkenzie@yahoo.com 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.

      3. gfreechic

        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.

        1. gfreechic

          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.

    2. gfreechic

      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?

      1. Taylor

        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!

    3. Janice Tuten

      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.

    1. Laura

      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.

  1. Lz Franchini

    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.

    1. tess

      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.

    2. sandy

      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.

      1. ms.white

        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. ;)

      2. Eileen

        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.

      3. Barb

        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.

  2. Julie

    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.

      1. Jacqueline Zambarano

        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!!!

        1. Cheryn

          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.

    1. judy mccause

      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…

      1. Jenna

        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.

        1. karen petrou

          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?

          1. Dustin

            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

        2. karen petrou

          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?

    2. Dee

      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.

    3. Michelle

      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!

    1. Alexandra

      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.

  3. Cathy

    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.

    1. tess

      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?

      1. Theresa

        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.

        1. Theresa

          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.

  4. Kristine ODonnell

    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!

  5. Marie Rubbinaccio

    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

  6. Jenise

    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.

    1. Jenise

      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.

  7. Daniel A.Prohonic

    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.

    1. Kathryn Kellison

      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.

    2. tess

      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!

  8. Linda L. Smith

    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?

    1. Shirley

      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.

    2. Jill

      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!

  9. Daniel A.Prohonic

    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

    1. tess

      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.

      1. tess

        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!.

  10. DCTdesigns

    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

  11. Patricia

    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

    1. Melissa

      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.

  12. martina

    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!

  13. Beverly Morgan

    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

  14. Ruthie

    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.

  15. Ada

    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!!!

  16. April L Bruner

    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

  17. Kathe Mazur

    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!

  18. Anthony Nuccio

    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 !

  19. Sigrid Aleja

    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.

  20. Janelle McArthur

    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.

    1. tess

      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!.

    2. tess

      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.

  21. Mj Vargas

    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

  22. Joan

    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.
    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! :) 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.

    1. tess

      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.

      1. Daniel A.Prohonic

        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.

  23. Kelly Ann

    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.

  24. Zen Honeycutt

    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

  25. Trish

    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

            1. Theresa

              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.

  26. Patricia

    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

  27. tess

    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

  28. Trudy Holleman

    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

  29. Sara Grosso

    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.

    1. Jenise

      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….

  30. susan

    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.

  31. Hilary

    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.

  32. Jenise

    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.

      1. Jenise

        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.

  33. seo

    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!

  34. Madelyn

    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.

  35. Shauna Rudolph

    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.

  36. Patricia

    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?

  37. D. Thompson

    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.

  38. ross wilkinson

    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

  39. Gina Handlen

    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.

  40. bptr

    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!,!

  41. jessica

    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.

  42. Ken Howard

    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

  43. Jenna

    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!

  44. MK

    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.

  45. Nicole Boutilier

    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.

  46. Deb

    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.

  47. Lorraine

    … 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.

  48. Mez

    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.

  49. Dora

    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.

  50. Julie Davenport

    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.

    1. Julie Davenport

      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!

  51. Di Ranere

    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!

  52. Lori Campion

    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

  53. Marta Rounsville

    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

    1. Theresa

      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.

  54. Maggie

    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.

  55. Theresa

    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.

  56. Tracy

    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!

  57. Nancy McCaffray

    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

  58. Trish

    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

  59. Just Me

    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.]

  60. Carla Spacher for CSA Foundation

    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!

  61. LaShona Reed

    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.

  62. Irene Sennett

    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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