Hi all, hope everyone is well. Yes, there is a lot of stuff going on, but also, some unanswered questions from earlier this summer. As some of you might have noticed I vanished for a minute there. Know that when I do, it’s usually for a very good reason…I think eyelashes and hair falling out is a good enough reason, don’t you?
Late April-early May is when it started and I mentioned this in one of the blogs from that period. Time for the update: who would think that in 2 1/2 years into being a Celiac; a well-informed, impeccable eater, and someone who tries her best to take care of herself, how I would, yet again, have an unsolved mystery???? When the eyelashes and rashes on my skin started I truly thought it was from too much makeup while filming, Blue Bloods, (the show I do on CBS). When the season ended the eyelashes and rashes continued. I started to have big spaces where eyelashes once sat and now nothing, not even small re-growth. At the same time, I was getting these hot burning rashes and to top it off I was seeing far too much of my scalp on the top of my head than one I would like.
Now I’ve never been a vain person but HELL, how much is one person suppose to give up with this disease? I was not about to let go of my eyelashes and hair now, too. I started to do my research which came up with a thyroid problem, Lupus, and other not so wonderful options. For me though, I’d rather know what I may be dealing with and armed with questions when going to seek a doctor. And go to the doctor I did, 10 of them! 10 of them in a three week period – not to mention having Lymphatic Drainage – going to see an energy healer, and anyone else who would try and help solve this mystery. My blood-work for many other Autoimmune Diseases came back all negative.
What did come back is a slew of new allergies, What?!?!? I’m already Gluten, Dairy, Soy, Corn, and Refined Sugar – Free. What am I allergic to now? Air? No, it was Almonds, Eggs, Chocolate, Watermelon, Broccoli, Avocado, and Chicken, and so on and so on. The swelling in my face from my eyes had now taken over my entire cheek that brought me to the ER one weekend, of course, they had no answers. My research led me to a naturopath doctor who told me about Leaky Gut Syndrome. It’s something I knew about but didn’t think it pertained to me. Think again! All Celiacs most likely have this condition. Leaky Gut Syndrome, is a gastrointestinal disorder in which the intestinal lining of the digestive tract becomes more permeable, or “leakier,” than normal, due to repeated irritation. The small intestine is designed to allow tiny particles of digested nutrients to pass through its wall and into the bloodstream. These are then distributed for use throughout the body. But due to a variety of causes, the intestinal wall can become more permeable and allow larger, less digested particles and toxins to pass through—causing Leaky Gut Syndrome. The body then recognizes these particles as foreign “invaders,” and the immune system attempts to fight them off—which can set the stage for various autoimmune disorders. So, basically, anything that was getting into my bloodstream, my immune system thought it was a foreign substance therefore making me have an allergic reaction to it.
What to do? Well I’m on a mega-genetic drink for Leaky Gut called L- Glutamine, tons of Acidophilus and Quercetin. Please do your research and talk with your doctor if you believe you are experiencing this. What I also learned was that the food rotation diet is a must for all Celiacs !!! Since 2009 I’ve done countless research on the subject of Celiac and am still shocked when I discover something new. A food rotation diet is a vital part of a Celiac’s diet. Otherwise you easily develop other allergies. The foods that showed up in my blood-work were everyday things I was eating, on a daily basis. I set up a simple rotation in my frig of mandatory milks to keep in rotation. I also made a simple calendar: what I ate on Monday I couldn’t eat until Friday and so on. I discovered a great site to help understand more about the Food Rotation Diet, please click on the link.
As far as my eyelashes and hair – they are growing back…for now. Still need my gut to heal, but, I, of course, didn’t give up on my treats. I’ve managed to create some completely allergy-free treats! Soon I will be making muffins and cookies out of air. Until then, stay well and look for my new blog post – Oatmeal Raisin Cookies Completely Allergy – Free!!
Ever Onward,
Jennifer Esposito
Hello Jennifer. I felt compelled to thank you this morning for sharing your personal hardship.
As much as I’d like to share my story…it seems that I’m not ready yet to do so. I’m still trekking through the rubble and when I come to exceptional conclusions…I will divulge it to my readers.
Until then, I thank you from the bottom of my heart for your genuine explanation and time you’ve put into explaining what is probably going on with many of us as well.
Grazie mille…and I truly wish you the best going forward.
Claudia
Hi Jennifer, thanks for sharing, I’ve been experiencing hair loss, this explains a lot.
Hey Jen, Great info. I would love to send you a copy of my cookbook, FInally.. Food I Can Eat. It has recipes free of dairy, corn, sugar, eggs, soy, gluten, etc. It also has a chapter on rotation diets and food families which is really important to know if you are super sensitive. Can you provide me with and address to send my cookbook to you. Would love you feedback on it as well. I am just starting to write a second edition. Glad to hear your hair and eyebrows are coming back. Hey why not feature one of your gluten free treats on Blue Bloods. Your partner could make a joke about what are you eating now???
Thank you so much for sharing your story and the processes and all the details of this journey. I have never heard of rotation, so interested in learning about that, just when you think you’re getting it figured out…. Sometimes this can be so overwhelming……I’m also greatful for Shirley’s reply, I ordered her cookbook right after I read all this as I am also dairy, soy, corn, gluten, and refined sugar and chemical – free……it can be a challenge some days…..I feel for you and what you are going thru…my symptons are no where near as bad as what you are going thru. I found you seeing you on dr. oz ~ it would be good if they could work it into the show as well on Blue Bloods. I feel like you are a long lost friend ~ there are so many similarities and parallels in our lives. I wish you the very best and thank you for taking the time to share your experience to help others.
I have a 7 year old daughter with celiac diagnosed almost two years ago. About six months after being on a GF diet, she started loosing her hair. I must backtrack here and add that she also suffers from alopecia, an autoimmune disorder that attacks the hair follicles. She had bald spots in the past but never hairloss. She was tested for all types of conditions and deficiencies and thankfully all came back normal. At the same time, it was frustrating because there was no reason for the hairloss except alopecia. In the back of my mind though, I have always felt that it could be related to the GF diet. To this day, there are no real answers. Thanks to your blog, I plan to look into allergies, which is something none of her doctors have even suggested.
I don’t know if this helps or not,, but I have celiac disease and the gluten free oats still don’t agree with my stomach,, I tried them twice and both times it made me feel sick. Maybe it doesn’t apply to everyone but that could be a possablitly too.
Many people with celiac cannot tolerate even the certifed gluten free oats due to a protein called avenin. There is much debate as to whether or not oats are safe for celiacs. If you decide to try oats, make sure that they are certified gluten-free and I wouldn’t use more than 1/2 cup per day and then see how you feel.
Jennifer –
A friend recently turned me on to this Doctor in Houston that has a fabulous information video that mentions Leaky Gut Syndrome. Please have a look.
http://youtu.be/cv5RwxYW8yA
Hi Jennifer,
You and I seem to be experiencing a similar problem. My naturepath doc out here in LA says to have 2 oz. of pure aloe vera juice every morning on an empty stomach to help heal the leaky gut. I mix it with a couple of oz. of pure cranberry juice since that is good for the kidneys and gives it a little flavor. I have been tested for gluten intolerance and it came back positive but I have to admit I have not been doing good at completely avoiding all gluten. After seeing you on Dr. Oz yesterday and reading your story, I am convinced that I must adhere to a totally gluten free diet.
I do have an under active thyroid and am on Nature-throid for that but I still have hair loss. It is maddening! It drives ya crazy feeling the hair crawling down your arms and chest through out the day – it must STOP!!!
My doc feels that following the Eat for your Blood Type would help tremendously. I do not understand the science behind it but I do try to follow it for the most part. It is difficult since one of the items that I should not eat are tomatoes! Being Italian myself, that is no easy task!!! But when it comes to hair loss, I am convinced that I must stick to this diet to win the battle.
Thanks for your blog, I will be following it and trying some of your recipes!!! Love to cook and bake myself
Have a GREAT day!
Donna
Dear Jennifer… I knew it had to have been bad… you mentioned lashes and hair falling out and then you disappeared. We will continue to pray for you. What I want to know is the “why”… why are so many of us suffering this way? Is it the chemicals? Persticides? EMFs? Did people 100 years ago suffer like this and if so, why did we never hear about it? Perhaps it was just always a mysterious illness that was never diagnosed and they just said people had stomach problems or other mysterious maladies. I live with pain every day from back / neck issues (thanks to people who think they don’t need to stop at red lights) and from fibromyalgia, as well as “stomach/intestinal issues”… my cousin, who I take care of, has late stage lyme disease… misdiagnosed for three years, it now “presents” as a combination of lupus and MS. We fight every day for health… life shouldn’t be this hard!
Like others, I pray that Blue Bloods will at least touch on the topic with your character… we saw Danny take you to the hospital that one time… I’m praying they will follow up with that… it’s an important issue effecting so many people and I don’t know of any other character on TV that has been written with this health issue.
God Bless you for all you are doing and staying the course in this fight.
Claudia
Hi Jennifer,
When I first read this post, silly as it sounds, I started crying. I guess because I was thinking great now what else do I have to watch out for, but also because why didn’t I know about this, why didn’t my doctor mention any of this & why didn’t I do more research on my own.
I wouldn’t normally be online at this time of day, but am home sick from a gluten reaction. I don’t know if any of you reading this ever vomit when you get gluten, but that’s how I react to gluten. When I was first diagnosed the doctor said “No that never happens, it must be something other than Celiac”. Well it does happen, it’s just not common. Sometimes it feels like it doesn’t matter what I eat, I just always feel crappy. I also have Fibromyalgia, another auto-immune disorder that causes chronic all over body pain. Sometimes I wonder if the Celiac causes Fibromyalgia flare ups.
I’ve thought for a while that with certain foods & drinks I’m ok if I only have them every once in a while, but if I have them day after day then I’ll start feeling sick . I’m going to look into Leaky Gut Syndrome and also the rotation diet.
Jennifer, I want to thank you for Jennifer’s Way. It’s so informative &, it lets people know that their not alone in their battle with Celiac.
Thanks again,
JustJen
I’ve only discovered that I am Celiac in March, after what I think has been 15 years dealing with this disease. I am comforted to know that my newly discovered “integrative medicine” doctor already has me on the supplements you mentioned, plus about 15 others. It’s a shame that the regular health profession and health insurance has yet to catch up on these things! So many of my vitamin and mineral levels were depleted, not to mention adrenaline, hypothyroid, “good” stomach bacteria and yeast issues. I had to go to a natural and of course non-reimbursable by health insurance doctor to see results. You do have to fight for proper information and help, and I thank you for being such an advocate.
I have had celiac sprue for 5 years
I saw you on doctor Oz using brown rice syrup. I have read several books that state not to touch the stuff. Is there a certain kind that you use that is gluten free?
Hi Jennifer,
I would like to recommend a book to you that I just read, called Breaking the Vicious Cycle, Intestinal Health through Diet by Elaine Gottschall. It is a specific carbohydrate diet (also known as SCD) and is an extremely popular book. You can check out all of the great reviews on Amazon. It is all about healing your gut and has helped many people with celiac and other digestive issues. It is not a diet you have to do forever, only until your gut heals. It is a very fascinating read. I have learned so much! I’m about 2 1/2 weeks into the diet and have so much more energy.
The basics of the diet are that you can eat meats, fish, poultry, eggs, certain hard, aged cheeses, properly prepared homemade yogurt, fruits, vegees, nuts and the only sweetener allowed is honey. No gluten, grains, starches, or sugars (other than honey) & very minimal processed foods. You can bake with nut & coconut flours. There’s definitely more to it, but that gives you the basics of it. It might be worth checking into.
I hope you’re feeling better soon!
Laura R.
Jennifer,
The same thing happened to me at about a year or so after being diagnosed. Hang in there. I had a list of about 16 or more things I couldn’t eat and also had a period of time when I had to cut out dairy, which was the worst! Eventually, I got to add back most of those things including dairy. I have been gluten free for over 5 years now and feel the best I’ve felt in years. Healing is a process that just takes time. Wishing you good health!
Jennifer! So sorry you are going through so much! Darn leaky gut!! I’ve have celiac and also feel I am incredibly (almost insanely) careful about what I eat. I recently found I have gall stones and my gallbladder function test came back lower than normal. I’ve read that this could be due to leaky gut. I am so truly thankful I was diagnosed with Celiac and am gluten free now, but I am afraid some damage has already been done . . .
Please keep us updated if the food rotation diet helps, I really appreciate you sharing!!!
I saw your scone recipe on Dr Oz today and will be making those right away
Close to a year ago, I was diagnosed with leaky gut due to candida and multiple food sensitivities (gluten, dairy, eggs, corn, soy, yeast, and a few others that I suspect) by my functional medicine doctor. I have Hashimoto’s that is still treated with medication but have resolved high cholesterol, acne, joint pain, no longer need insulin for diabetes, and have lost 20 lbs after eliminating these inflammatory foods. My husband is resolving his IBS, one child is vastly improving her ADHD and another has eliminated massive stomach pains and ear infections since changing our diets. Amazingly, each of the doctors involved definitively stated that food was not the cause of any of these issues.
This has certainly been a journey that is continually evolving, so I really liked your statement that this is our new reality. As difficult and trying as this all may be, I have no intention of going back to the way things were.
Its trying and oh so sad that a doctor didnt mention that FOOD plays a HUGE part in all this. But food can help too.
Glad you took matters into your own hands!
Be well
Jennifer
Jennifer, I am a Celiac (diagnosed 2 years ago) and I just found your site. I believe that I am just starting to experience a “leaky gut” as I am now unable to tolerate soy, dairy, and most recently corn. Thank you for posting all of this information. It is invaluable and I am so thankful that you are spreading the word. I hope that you are feeling better and healing. Peace to you.
Jess
Love your site and looking forward to trying your products. My 11 yr old daughter has been gf for 3 years and I have noticed returning and new symptoms which I believe are caused by leaky gut/bacterial overgrowth. I live in NYC and would love to know the name of the naturopathic Dr. you found. I am willing to travel by car or plane. Your plan sounds similar to what I have researched and hoped to follow but our medical Drs. are not on board so need a naturopath…..please email us the info to celiac mommy.pin1@gmail.com.
Thanks so much!
Nina
Hi Nina
Leaky Gut stinks, as well as Celiac, but it can be managed. My doc is Patrick Frattelone in NYC. He really “gets it” because he is also a celiac. He generally doesn’t see children but tell him I referred you and hopefully you will get an appointment for your daughter. One thing you can start asap is a rotation diet. Example, what she has on mon she shouldn’t have again until at least fri. This keeps allergies at bay as much as possible. Also research Quercitin it has helped me for sure.
Please wish your daughter the best from me and please let me know how it goes with the doc
Take Care
jennifer
Aw Jennifer – thank you for sharing! I was diagnosed with Celiac 2 years ago. In the last 2 months the skin on my shins is extremely itchy but there is no rash – it’s not dermographism nor DH. My forehead is also itchy (not as much) and my chin. Non of the gluten free lotions I use really help. I am not losing my hair or eyelashes but they are very weak. I use Revitalash on my lashes and it has really helped. You should try it. I will try Quercetin as you suggested. Can’t even think of rotation diet. I keep eating the same things… just too tired to prepare anything new after work.
I really love watching you on Blue Bloods, Crash, etc… and I can’t believe you’re so successful with everything that you’ve been through. Good for you!
Great site. Thanks again.
Hi Jennifer, I am soooooo glad you have this website. Besides my issue with gluten, I am food sensitive to dairy, corn, soy, yeast and now from eating way too much brown rice and almonds, I must avoid them as well for now. I have learned that our food sensitivities aren’t always “fixed”. When I eat a food too often, I become sensitive to it. I know better but I’m a creature of habit and must pay more attention to food rotation. Thank you for all your research. You are as beautiful on the inside as you are on the outside!
Jennifer, I have really enjoyed your blog. I am definitely going to read more about the Food Rotation Diet, so interesting. Thank you for referencing that!
It sounds like we were diagnosed at about the same time, and it continually seems like i am learning something new about this “disease”. I hate to call it that.
And wow, I thought I was the only one allergic to avocado….so strange. I discovered my allergy when I was feeding my daughter some as one of her first foods, I took a bite, and immediately became all itchy., and was then tested. No wonder I never liked it
Dear Jennifer,
Where do I begin! I guess I will start by introducing myself, my name is Greg Cochran I am from York PA. I am the husband of the most wonder wife I man could ever ask for. We have a very unique marriage in a few ways with the first and most obvious being the fact that I am 17yrs older then my wife Jenn. I am 43 and she is 26. Second and more importantly we share a love that is effortless and fulfilling on every level. Together we run a business that allows us to be home with our 4 beautiful children. As you might imagine our vision of the future includes be getting old and grumpy and certainly going first. We have even discussed the fact that Jenn could and most likely will have other loves in her life.
With that quick back ground you can imagine my horror when out of the blue one evening about 4 years ago, while laughing uncontrollably at some of my antics, Jenn suddenly had a terrified look on her face. It was in that instance I leaped towards her and with a major slur she exclaimed “I feel like I am having a stroke!” Had I not reacted in the moment that I did she would have collapsed to the floor. Ironically I had just completed a class on stroke warning signs that day. After safely carrying her to a recliner I followed my training as if she were having a stroke. At the same time I was on the phone with 911 requesting an ambulance. I cannot begin to describe the feelings of helplessness that I am not accustomed too, that came over me while watching this horror unfold.
At the emergency room we were taken in right away because all the signs pointed to a stroke despite the improbability at Jenn’s age which at that time was of 22. Due to Jenn’s scrambled thought pattern she was experiencing it was up to me to relay her medical history. In an attempt to help the doctors figure out what was going on I first covered the immediate situation that lead up to the stroke like symptoms. After which time I began listing more obscure seemingly unrelated issues. I just wanted to be sure that if any of it were connected, the doctors could help her faster. But around the time I started mentioning things like the fact that my wife has majorly abnormal periods or suffers from extreme bloating from constipation that I wouldn’t believe if I wasn’t married to her. The doctor was clearly dismissive that I had entered into meaningless chatter.
The days and weeks to follow were met with several more terrifying incidents that ended up in the emergency room. Each time we left with more questions than answers. Once we finally made it in to see the neurologist we were hopeful we would begin to find answers. The doctor ordered the test where you wear the head gear and record your brian activity for a weekend, then later for a week and lastly once while staying in the hospital for 5 days. None of these test resulted in any helpful answers. After several MRI’s and blood test all of which showed nothing wrong the tone of the questions began to turn. Weather it was our perception or reality Jenn began to feel like her sanity was in question. She experienced strong emotional feelings of guilt at home as if she had become a hypochondriac.
It may be hard to believe or maybe it is true for lots of couples but I truly feel my wife’s aguish when she is stressed. I feel off when she is experiencing her symptoms. There was never a time that I questioned that something was wrong and the doctors were simply not thinking outside the box. I did my best to reassure Jenn that I was not only taking her seriously but I was researching on regular bases in an attempt to find the link between her symptoms.
By now her list of symptoms began to include nausea, blood in her stool, extreme fatigue, bouts of extreme hunger, unexplained rashes, extreme bloating, depression and on one evening complete loss of movement from the neck down. We later discovered that our feelings of being labeled fruit cakes by the hospital staff were well founded. After receiving a copy of the emergency room transcript following the previous paralyzing episode we found that not only had the nurse surmised that my wife’s symptoms were psychosomatic she claimed my wife moved freely while she thought no one was looking! I was there the whole time and not only had my wife not moved, there was a curtain completely around us and this nurse had only been by twice is several hours! It was as if she needed to ad that fabrication to justify the dismissive attitude they so generously displayed that evening while my wife lie in complete horror that she might never move.
To make matters worse we are one of the many Americans that cannot find health care because of preexisting conditions and as the owner’s of a small business we are forced to pay out of pocket. The doctors all of whom we feel dismissed us sent us into what has grown to over 20k in medical bills.
Fast forward to last night 11/24/2012 as I lay in bed watching TV while my wife slept next to me. I had begun channel surfing when my interest was struck by your interview on Fox of all places. I generally consider Fox to be the Antichrist of TV news LOL! I had unfortunately discovered your segment in the last 15 minutes but it was enough for me to start to hear your very familiar story. I almost dismissed it only because I had searched the web so many times before with the list of my wife’s symptoms to no avail. Something told me this might be different so I got out of our warm bed and retrieved my laptop returning to bed to see what this celiac disease was all about. I will admit the fact that my wife shares your name and your website is Jennifer’s Way added to my need to look further.
When I arrived at the list of symptoms I was overcome with excitement for the possible answers this could hold and anger for fact that we had so acutely described this condition to so many health professionals and were dismissed each and every time!
Equally as important, after reading about testing children who share a parent with celiac another light bulb went off. Our beautiful ray of sunshine that is our 8 year old son Gavin suffers from a severe dry skin and scalp condition that is equally ignored by his doctor. He shares in the same learning disability that my wife suffered from as a child that affects his short term memory. He has complained about times when he begins to stare at something and feels unable to unlock from it and his list goes on.
I am writing you today to say thank you for offering hope were there almost was none left. Thank you for using your spot light to bring attention to this condition that is surely being overlooked across our country. When my wife awoke this morning I shared my discovery with her. It is safe to say she is over whelmed with emotions at the moment. She is happy and equally angry at the same time. It has literally been a roller coaster of feelings.
We are switching to a gluten free existence with a trip to the grocery store tomorrow. Jenn of course started after she read the list of symptoms. There is so much more to our story that would just take too long to convey in a letter but what is most important to me is that I have conveyed how grateful I truly am that I heard your message last night. Not only may this save my wife and son a world of future heart ache it has squashed my feeling of sadness that I have, up till now, been unable to help my wife who deserve only the best things life has to offer. She manages to create inside of me a feeling of appreciation everyday for her love and support and how it makes me feel like the luckiest guy in the world even when I am being grumpy. It is hard to put into words but I believe when two people love one another unconditionally they create a healthy feeling of indebtedness towards each other that drives them both to serve one another unselfishly and without the need to think about it. So when I was met with a situation that I alone could not fix for my wife it created a weight on my shoulders that I believed responded to the words that left your mouth causing me to stop at hells gate or Fox as it is known.
On behalf of Jenn and me, we thank you. We will send you an update in the weeks and months to come as we transition into a gluten free family. We will participate in your Blog and surely be benefiting from the hard work and effort you have put forth in your website. If there is ever an effort where volunteers could be helpful in getting out the word please let us know.
Sincerely,
Greg Cochran
York, PA
thanks for this post! my 6-year old daughter was diagnosed with celiac disease and leaky gut a year ago by a wonderful functional medicine doctor in dallas. our doctor put her on a 4-day rotation diet and took her off gluten/dairy/soy/corn. i have no problems with the food eliminations, but the rotation is the hardest thing i’ve ever done, especially for such a young child. we finally got news last week that her small intestine is now healed and i can slow down on the rotation diet. music to my ears. we will still vary our diet as much as possible, but knowing that we did it brings such satisfaction. my sister sent me your website after seeing you on fox news (i think) and said your story reminds her so much of my daughter’s. i’m just so thankful that we found out so early in her case (though it took 5 years and every kind of doctor under the sun to run a single test). thanks for spreading the word – i look forward to keeping up with you.
Hi Jennifer. I stumbled across your site from a blog post regarding your interview with Dr Drew. I am so glad I found your site and your story as I have been struggling so much! So many of your symptoms listed in your story align with mine. I am a cancer survivor and have been trying to recuperate from my chemotherapy and radiation treatments which were about 5 years ago. My digestion hasn’t been the same since then and I have tried everything from eliminating gluten, dairy, soy, eggs etc. to supplementing with probiotics but my symptoms still persist. You mentioned that you take a drink with L-Glutamine, probiotics and Quercetin. Is it one specific product that has all these things included? Would you mind telling me the brand? I’m not sure where to look for it. I am feeling discouraged because I have tried so many things but my digestion still isn’t right. I haven’t tried to rotation diet so I am going to look into this and hopefully find relief from rotating my foods. Thanks so much for this website, I am so grateful I found it! God bless!
I too have multiple allergies. The dr. appts. started at age 7 and continued until my mid 40′s when my allergiest tested me. It took 6 mo. to clear my system of gluten – but boy was it worth it! Now I can tell what food I ate, by my reaction – peanuts, soy or gluten. I have learned why I react to other foots, birch tree and ragweed allergies. I’m also allergic to propleyne glyco (anitfreeze) but is in loations, shampoos, color, perms, etc. I noticed somewhere on the sight about watching for gluten in shampoo – what do they call it? I’m sure I haven’t read gluten on any label.