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  • Scott Adams
    Scott Adams

    Scott Adams' Story of His Diagnosis of Celiac Disease

    Reviewed and edited by a celiac disease expert.

    During my doctor visits my diet was never discussed, even though most of my symptoms were digestive in nature.

    Scott Adams' Story of His Diagnosis of Celiac Disease - Image: CC BY 2.0--NIHClinicalCenter
    Caption: Image: CC BY 2.0--NIHClinicalCenter

    Celiac.com 07/25/1996 (Updated: 12/29/2020) - Like many people with celiac disease (it's an autoimmune disease and not a wheat allergy or the same as gluten sensitivity, gluten intolerance, or sensitivity to gluten), I spent a lot of years and money and endured many tests and misdiagnoses before doctors finally discovered that I needed to avoid gluten (including all gluten containing ingredients). Gluten is a protein found in gluten containing grains that include wheat, rye, and barley, and is often hidden in processed foods. To treat my celiac disease I had to go on a gluten-free diet for life, which meant that I had to learn to read food labels, and I ate mostly naturally gluten-free foods like meats, fruits, nuts, vegetables, gluten-free breads, and foods that were labeled gluten-free or made using gluten-free grains. My symptoms, which included weight loss, abdominal pain (especially in my middle-right section while sleeping), bloating, and long-term diarrhea, slowly disappeared.

    Because of the large variety of symptoms associated with celiac disease, and the fact that many celiacs have few or no symptoms, diagnosis can be very difficult, which is why is still takes an average of 6-10 years to get diagnosed. Most medical doctors are taught to look for classic symptoms and often make a wrong diagnosis, or no diagnosis at all. During my doctor visits my diet was never discussed, even though most of my symptoms were very typical, and greatly related to food digestion. A simple (and free!) exclusionary diet would have quickly revealed my problem. An exclusionary diet involves eliminating wheat, rye, oats, barley, dairy products, soy and eggs for several weeks, and recording any reaction as you slowly add these foods back into your diet.

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    Unfortunately it took my doctors over two years to make a diagnosis, and during that time I was misdiagnosed with Irritable Bowel Syndrome (IBS), told that I could have cancer or a strange form of Leukemia, treated for a non-existent ulcer with a variety of antibiotics that made me very ill, and was examined for a possible kidney problem. I also underwent many unnecessary and expensive tests including CAT Scans, thyroid tests, an MRI, tests for bacterial infections and parasites, ultrasound scans, and gall bladder tests. Ultimately the only reason I every got my diagnosis was because I ended up reading something about it in a book on nutrition, which led me to ask my doctor to be screened for it. I was finally diagnosed via a  blood test for celiac disease, followed by a biopsy of my small intestine (which is not as bad as it sounds). 

    A full recovery took me 2-3 years, and during that time I also had temporary food intolerance issues to things like dairy (casein), corn, tomatoes, and chicken eggs. During the 1-2 year time period after going 100% gluten-free I was thankfully able to add those things back to my diet.

    I created Celiac.com to help others avoid a similar ordeal. I also want to provide people who know they have the problem with information which will improve their quality of life, and broaden their culinary horizons. To do this, I have compiled information from a large variety of sources including medical journals, books, doctors, scientists, and news sources, and posted it all right here. Many of our articles are written by medical professionals such as nurses, doctors, and other celiac disease experts.



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    Jcar
    On 10/23/2007 at 3:47 AM, Guest Catherine said:

    Hi there. I guess you've heard this time and time again, but your site is great! I too went through many, many years of mis-diagnosis - almost died. Turns out that at least 2/3 of my family have it also. Thanks for the site and the help. I'm still fighting symptoms and yes, I'm completely gluten-free but the docs say it may be possible that I have Celiac as a secondary disease.....but they still can't figure out the first.

     

    Thanks again and wish me luck. I need a diagnosis and soon.

     

    Catherine

    I agree with Catherine. I was diagnosed with Celiac quickly thanks to a sharp GI doctor. She simply did biopsies In stomach and small intestines immediately. I tested positive for severe Celiac. I had zero gastric symptoms but would collapse and remain unconscious for five minutes or so. Anyway wheat free now for five years and zero problems. Read all labels and don’t guess at any dish. Most people don’t know in preparing food if something is truly wheat free. Don’t worry about offending someone by not tasting their meal. Just pass. 

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    Joo

    Just curious I was diagnosed with celiac through bloodwork and biopsy… I deal with more indigestion than stomach pain… so far only stomach when I attempted to return to drinking coffee … anyone else symptoms are as mines

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    trents
    12 minutes ago, Joo said:

    Just curious I was diagnosed with celiac through bloodwork and biopsy… I deal with more indigestion than stomach pain… so far only stomach when I attempted to return to drinking coffee … anyone else symptoms are as mines

    My experience is the same as yours, Joo. If I drink coffee regularly I develop acid reflux. I would encourage you to look into Mast Cell Activation Syndrome (MCAS) and histamine intolerance. These are often found in the celiac community.

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    Oj23

    Hi for the past few years been tested for various autoimmune.  All negative allergy test came back negative however had a constant burning and pain in shoulders lower back which doctor believe fibromyalgia. That pain mostly went away after COVID but raises its head from time to time.  My eczema has been a major issue.  Going off dairy helped but still had stomach pain.  My dermatologist suggested I get off gluten for a few weeks to see. Things got better, tried bread and cheese again and now having a heaviness in my chest and throat. Have to take citerizine and Prednisone for relief. Can't do shellfish have a mild allergy to it. Unlike everyone my GP suggested to not bother with the celiac test my reaction was enough to avoid the food altogether. Have hormone issues so losing weight is a problem. Should I still do the test or is there some other or additional underlying issue?

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    trents

    You can't be tested for celiac disease if you have been off gluten for awhile. All celiac testing, whether it be the blood antibody test or the endoscopy with biopsy are rendered invalid if you have been gluten free or even if you have eliminated most gluten. You would need to go back to eating significant amounts of gluten daily for 6-8 weeks to get a valid blood antibody test for celiac disease which, by the way, is not an allergy. It is an autoimmune disorder.

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    Oj23

    Understood Trent.  However just going back on gluten for one day has me feeling lousy stomach issues and the heaviness in the chest which normally comes before the stomach issues 

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    trents
    14 minutes ago, Oj23 said:

    Understood Trent.  However just going back on gluten for one day has me feeling lousy stomach issues and the heaviness in the chest which normally comes before the stomach issues 

    So, it seems that you will have to live with the ambiguity of not knowing whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). And that's okay. Whichever, you just need to stay away from gluten and some other foods you have developed a sensitivity/intolerance to. Typically, those with celiac disease develop intolerance to other foods as well. It's par for the course.

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    jaybird39325
    On 10/23/2007 at 12:47 AM, Guest Catherine said:

    Hi there. I guess you've heard this time and time again, but your site is great! I too went through many, many years of mis-diagnosis - almost died. Turns out that at least 2/3 of my family have it also. Thanks for the site and the help. I'm still fighting symptoms and yes, I'm completely gluten-free but the docs say it may be possible that I have Celiac as a secondary disease.....but they still can't figure out the first.

     

    Thanks again and wish me luck. I need a diagnosis and soon.

     

    Catherine

    Thank you for creating Celiac com. I finally have the answer to why I've been literally dying. It had gotten so bad that I was malnutritioned to the point of have cachexia. I'm just starting my journey to get back my health. I've been off gluten for two weeks and no chronic  itching anymore!! I'm so grateful to have figured it out before it killed me. all these years of health issues all make sense now! Thank you. 

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    Judith Drexler

    Hello, I was diagnosed about 5 years ago with both Celiac and Lymphocytic Colitis. My digestive system constantly battles the foods I eat. Celiac wants me to eat gluten-free with lots of fruits and veggies and I had generous servings each day.  But now I must be extremely careful of my fiber intake. I believe the colitis is more problematic than celiac. I've discovered the skin on potatoes, apples, cucumbers, and the like, race through my system and the result can be extremely unpleasant, with repeated urgent trips to the bathroom. I've found that well-cooked and pureed  veggies, such as broccoli, brussel sprouts, and carrots, I can eat veggies without issue.  So I allow myself 1/2 cup as a serving one time per day. Following my colonoscopy, my gastroenterologist recommended taking chewable Pepto Bismol, as a kind of maintenance.  I also assume that inflamation plays a large part in my digestive upsets, meaning that even though I've been very careful of my food intake, there is likely a vegetable or fruit causing my distress. And I might pay for that for days. I'm curious if any other folks with these autoimmune disorders have similar problems.

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    cristiana
    55 minutes ago, Judith Drexler said:

    I'm curious if any other folks with these autoimmune disorders have similar problems.

    I have had two friends with colitis and I know that at times they have struggled greatly with their diet.  One seems to be doing well now, but I know the other had huge issues with fruit and veg.  For myself I have been diagnosed with coeliac disease and IBS and between them I rarely find my gut is in 'a good place'.  I can have days of things working well, followed by days of either constipation or diarrhea.  Currently some homemade sweet potato soup is playing havoc with my gut!  Too much lactose can also cause issues.  

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    knitty kitty

    @Judith Drexler,

    Pesto Bismol contains aspirin.  Aspirin is an NSAID.  NSAIDs cause continuing inflammation and villi damage.  I was given the same advice.  Pesto Bismol overtime just tore my digestive system up more.  I found taking Tryptophan supplements much better.  Tryptophan helps calm and repair the digestive tract.  Benfotiamine promotes intestinal healing, too.  Oolong tea is very calming.

    Potatoes are nightshades which contain glycoalkaloids that increase gastrointestinal permeability.   The glycoalkaloids solanine in potatoes is concentrated under the skin.  Peeling potatoes will remove some of it.  I found cutting out all nightshades (potatoes, tomatoes, eggplant and peppers) extremely helpful.  

    Apple and cucumber are high in fructose.  Fructose Intolerance worsens gastrointestinal symptoms.  A diet high in fructose alters the microbiome and can worsen IBD symptoms.  

    I switched to low fructose fruits and vegetables.  I also chose low histamine foods.  I also took vitamins and minerals to boost the absorption of nutrients that I wasn't absorbing from my limited diet.  

    Interesting Reading:

    Dietary Fructose Alters the Composition, Localization, and Metabolism of Gut Microbiota in Association With Worsening Colitis

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7797369/

     

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    Judith Drexler

    Thank you so very much Cristiana and Kitty. I will definitely look into tryptophan and benfotiamine. BTW, tomatoes really cause distress. No more marinara for me, I guess. Again, thank you. 

    Judy

     

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  • About Me

    Scott Adams

    Scott Adams was diagnosed with celiac disease in 1994, and, due to the nearly total lack of information available at that time, was forced to become an expert on the disease in order to recover. In 1995 he launched the site that later became Celiac.com to help as many people as possible with celiac disease get diagnosed so they can begin to live happy, healthy gluten-free lives.  He is co-author of the book Cereal Killers, and founder and publisher of the (formerly paper) newsletter Journal of Gluten Sensitivity. In 1998 he founded The Gluten-Free Mall which he sold in 2014. Celiac.com does not sell any products, and is 100% advertiser supported.


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