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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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    StephanieOrtizz
    On 4/29/2009 at 10:10 AM, Guest Rachel said:

    I have found this website very informative and helpful. I was diagnosed with celiac disease right before Christmas. I have been misdiagnosed with IBS for 10 years and finally my body gave up and I lost 30 lbs within 2 months. My new doctor finally took me serious and diagnosed me through blood tests and small intestine biopsy. I am eating gluten free and still having weight loss and still waking up sick every single day, hopefully they help soon. You website gave me a lot of new information. Thank you!

    Are you feeling better ?

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    Guest Rad

    Hi thank you for your great website and useful information..my doctor diognised that my symptoms sounds like celiac disease ..I have an appointment for endoscopy test ..and doctor asked me around 4 weeks before test I have to start eating gluten!!I worry about that because with one day eating gluten I feel pain 😫..is it logical that around one months I have to eat gluten?do you have same experience?

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    trents
    1 hour ago, Guest Rad said:

    Hi thank you for your great website and useful information..my doctor diognised that my symptoms sounds like celiac disease ..I have an appointment for endoscopy test ..and doctor asked me around 4 weeks before test I have to start eating gluten!!I worry about that because with one day eating gluten I feel pain 😫..is it logical that around one months I have to eat gluten?do you have same experience?

    Actually, the standard recommendation is 6-8 weeks, not 4 weeks. Please realize that many doctors are not well-informed about celiac disease.

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    Scott Adams

    Your doctor is correct, to be able to diagnose celiac disease you must eat gluten daily for a time before the tests:

     

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    karyn cisinski

    Today is March 21, 2021. I am not seeing anything really so far thats NOT dated before 2010. I am hoping to find an active community. My daughter has multiple symptoms and she has been diagnosed with everything from rheumatoid arthritis, fibromyalgia, chronic fatigue and then the doctors and specialists change their minds.. I am convinced that this is her issue, I started her on gluten free just three days ago and today she didn't have a stomach ache for the first time in weeks, I know the other issues will take time but I am determined

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    trents

    Karen, has any doctor actually tested your daughter for celiac disease? If not, I would push for that if I were you. The first stage, and often the only needed one is a simple blood draw to test for antibodies characteristic of celiac disease.

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    Scott Adams
    2 hours ago, karyn cisinski said:

    Today is March 21, 2021. I am not seeing anything really so far thats NOT dated before 2010. I am hoping to find an active community. My daughter has multiple symptoms and she has been diagnosed with everything from rheumatoid arthritis, fibromyalgia, chronic fatigue and then the doctors and specialists change their minds.. I am convinced that this is her issue, I started her on gluten free just three days ago and today she didn't have a stomach ache for the first time in weeks, I know the other issues will take time but I am determined

    Just go to our home page to see the latest articles:

    https://www.celiac.com/

    and our forum for the latest posts:

    https://www.celiac.com/forums/

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    karyn cisinski
    15 hours ago, Scott Adams said:

    Just go to our home page to see the latest articles:

    https://www.celiac.com/

    and our forum for the latest posts:

    https://www.celiac.com/forums/

    We have not been tested yet, I am working on that now. I have however cut gluten out of her diet along with dairy and we have had three days of her being actually able to eat without feeling sick afterwards. The hardest part is that she has other health issues because of her cerebral palsy (very mild) but over the last two years we have watched her decline in so many ways that are NOT related to her CP. I am frustrated with the fact that the doctors kind of take it seriously at first, run some tests and then say they aren't sure. All I can say is that as a parent it kills you to watch your child suffer. Several nights ago I made her one of her favorite quick diners of tomato soup and a grilled cheese sandwich. She came to our room and just broke down sobbing that she couldn't eat because she knew it would just make her sick later. She often makes the statement "My stomach is eating itself" I don't understand what exactly that means, I think sometimes its because she hasn't eaten because she has actually become afraid of eating and then feeling badly. So that night I made the decision to change her diet completely. Its an adjustment but its better for the whole family anyway. I am working on finding different meal ideas and foods that will be healthy but like I said the last three days have been such a change. I am a bit timid to ask her doctor because I have done so much searching to get her help!! I am very new to gut health and all the things it can effect, including that it may or may not mean a definitive celiac diagnosis.  I an say for sure that gluten is an issue because it has already started to have an affect that we removed it completely from her diet.

     

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    trents

    Be aware that most canned soups use wheat starch as a thickener. If you are going to put your daughter on a gluten-free diet you really need to educate yourself as to how widely gluten is used in the processed food industry and disguised by terminology. It is found in products you would never guess would have wheat, barley or rye in them. Would you expect to find wheat in soy sauce? Yet, most brands of soy sauce include wheat as a primary ingredient. Or chocolate syrup? Many brands of chocolate syrup use wheat as a texturing agent. Or corn or rice based breakfast cereal? It's there in the form of malt extract or malt flavoring. Meds and supplements can also contain wheat as a filler or come in contact with it during the production process via shared equipment.

    Unless you are prepared to put your daughter back on eating wheat daily or weeks, the testing will be a waist of time. Going gluten-free before testing invalidates the tests. It sounds to me like you should just forego the testing and commit whole hardily to going gluten-free. After all, it's still true that the proof is in the pudding, especially when the pudding has wheat starch in it.

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    karyn cisinski
    1 hour ago, trents said:

    Be aware that most canned soups use wheat starch as a thickener. If you are going to put your daughter on a gluten-free diet you really need to educate yourself as to how widely gluten is used in the processed food industry and disguised by terminology. It is found in products you would never guess would have wheat, barley or rye in them. Would you expect to find wheat in soy sauce? Yet, most brands of soy sauce include wheat as a primary ingredient. Or chocolate syrup? Many brands of chocolate syrup use wheat as a texturing agent. Or corn or rice based breakfast cereal? It's there in the form of malt extract or malt flavoring. Meds and supplements can also contain wheat as a filler or come in contact with it during the production process via shared equipment.

    Unless you are prepared to put your daughter back on eating wheat daily or weeks, the testing will be a waist of time. Going gluten-free before testing invalidates the tests. It sounds to me like you should just forego the testing and commit whole hardily to going gluten-free. After all, it's still true that the proof is in the pudding, especially when the pudding has wheat starch in it.

    is there a place here that can educate me in what foods I can count on, so far I am pretty shocked by the foods in our home that contain gluten. I am in the medical field an my husband is a nurse so we do have a basic understanding of quite a bit of the physiological ways that our bodies are supposed to work. For now her diet is very limited because we have not shopped yet, she is aware its going to take me a few days before this is going to be somewhat good, neverminded perfect. We are actually going dairy free as well as gluten. For the first 5 years of her life she had many different food intolerances and I was told she would grow out of them, dairy was a big one! Thank you so much for your help and attention, I have been completely  overwhelmed, and my wonderful hubby is also in school full time so Im kind of the one doing the research stuff, with his full support of course! Thank you again 

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    trents

    karyn,

    Yes, it is overwhelming at first. We have all been there. We understand where you are at.

    I think it took me (and my wife) about a year before we had a good enough understanding of where gluten is likely to show up in the food supply so that there was  consistency in avoiding gluten. It will take more than a few days.

    A good place to start is to avoid all dining out and to stick to simple basic foods like fresh meat, fresh fruit, and fresh vegetables, eggs. Avoid all dips, coatings, marinades and all store bought seasonings except salt and black pepper. Believe it or not, seasonings can contain gluten.

    Make sure you don't share toasters and make sure you wash all cookware and cutlery thoroughly. If there are still gluten eaters in the home, make sure your daughter's food items are kept separate from others'. Make sure everyone in the household knows that your daughter's gluten-free foods are off limits to other in the household. It may only take one gluten contaminated knife or spoon dipped into your daughter's peanut butter or jelly jar to give her a gluten reaction. 

    Actually, the best way to protect your daughter from cross contamination in the home is for everyone to commit to gluten-free eating. But that is not for every family.

    If you live near a Costco, that is a great place to find gluten free foods, vitamins and supplements.

    After a while you will develop a "sixth sense" as to where gluten might be found in (especially) prepared food products.

    In the meantime, this may help: 

     

    Edited by trents
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    Scott Adams
    2 hours ago, karyn cisinski said:

    is there a place here that can educate me in what foods I can count on, so far I am pretty shocked by the foods in our home that contain gluten. I am in the medical field an my husband is a nurse so we do have a basic understanding of quite a bit of the physiological ways that our bodies are supposed to work. For now her diet is very limited because we have not shopped yet, she is aware its going to take me a few days before this is going to be somewhat good, neverminded perfect. We are actually going dairy free as well as gluten. For the first 5 years of her life she had many different food intolerances and I was told she would grow out of them, dairy was a big one! Thank you so much for your help and attention, I have been completely  overwhelmed, and my wonderful hubby is also in school full time so Im kind of the one doing the research stuff, with his full support of course! Thank you again 

    These may help:

     

     

     

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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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