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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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    karyn cisinski
    1 hour ago, trents said:

    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: 

     

    Thank you so so much, we already decided as a family that we are going gluten free, we have a very large stash of foods going to the food pantry because I am not even taking a chance, my daughter is such an amazing kid, I adopted her after she was my foster child from the time she was 3months old. She was born addicted to just about all the major drugs, was diagnosed with cerebral palsy, but has overcome ALL of it. She is a great kid, an A student and I am not willing to watch her go through this alone. She was in tears today when I showed her this site, stating that she never knew other people felt all the things she did. Thank you for the support and the info

     

     

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    Guest Bill

    Posted

    I was just diagnosed w/ celiacs disease and can not drink cows milk anymore. I drink 5-6 gallons of 2% milk each week and need a replacement with similar taste.

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    cristiana
    1 hour ago, Guest Bill said:

    I was just diagnosed w/ celiacs disease and can not drink cows milk anymore. I drink 5-6 gallons of 2% milk each week and need a replacement with similar taste.

    I had to give up milk for a while when I was first diagnosed. I am now able to tolerate it in moderate amounts. 

    While I was healing I was told to try lactose free which of course is cows milk but it didn't help.  I couldn't find anything with a similar taste but I tried various replacements and found that I liked almond milk the best, particularly with cereals and coffee.  I'm now back on it because I've developed adult onset eczema and have been told it might help to avoid dairy.

    Have you tried any other types yet? 

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    trents
    1 hour ago, Guest Bill said:

    I was just diagnosed w/ celiacs disease and can not drink cows milk anymore. I drink 5-6 gallons of 2% milk each week and need a replacement with similar taste.

    Bill, is the problem you have with cow's milk caused by the casein (a protein in milk) or the sugar in milk (lactose)? There are lactose free dairy products available and if the casein is the culprit you can still probably consume whey-based products. Whey is another protein in milk and commonly used by body builders and athletes as a high quality form of protein which can be consumed in shake  form.

    I too have cut down on my dairy consumption and I find Kirkland (Costco) Banana Soy Smoothie soy milk to be delicious and soothing and a good substitute for drinking and use in cereals.  It has a similar nutritional profile to cow's milk. Beware, though, it is not uncommon for celiacs to have issues with soy products.

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    mizar552000

    Hello!  I just joined and after reading many of your comments, as well as the founder's introduction, it sounds as though I might have Celiac Disease too.  I have all of the same symptoms he mentioned and have been through so many tests to no avail.  The WORST symptom is the bloating and gas, especially at night and early morning!  I am finally going to have the intestinal biopsy performed at the end of this month, so I am hoping to have some answers.  I thought I was on a gluten free diet for a while, but didn't realize that included eliminating possible cross-contamination with my husband's food, as well as from restaurants.  I also had to re-examine all my makeup, soaps, lotion, etc.  I only buy products stating that they are truly gluten free now (sustainable and cruelty free too!).  

    I know I have a long road ahead to recovery, but I appreciate this website and having a way to discuss this with other people who suffer with this illness.

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    trents

    Welcome to the forum, mizar552000!

    Just make sure you have been eating gluten daily for at least two weeks leading up to the scope and biopsy. The equivalent of a piece of bread each day should be adequate. Many people make the mistake of trying to eat gluten free leading up to testing and that will compromise the results. For the blood antibody test you should be back on regular diet with gluten for 6-8 weeks.

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    mizar552000
    28 minutes ago, trents said:

    Welcome to the forum, mizar552000!

    Just make sure you have been eating gluten daily for at least two weeks leading up to the scope and biopsy. The equivalent of a piece of bread each day should be adequate. Many people make the mistake of trying to eat gluten free leading up to testing and that will compromise the results. For the blood antibody test you should be back on regular diet with gluten for 6-8 weeks.

    Ok, thank you!

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    Mister B

    Whenever I eat gluten my small intestines react like it is under attack it sent out all kinds of white blood cells when it can't find nothing to attack blisters form on my head my elbows my knees my butt cheeks my hips heat blisters itch very bad in order to stop the itch I have to pop the blisters and that's not a good thing to do because then it becomes a sore I am a grown man and sometimes it makes me cry very painful

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    trents

    Mister B, this skin reaction sounds like it could be dermatitis herpetiformis, one of the classic expressions of celiac disease.

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    Liz Barnard

    I am 79, have never been diagnosed with Coeliac Disease  but know that I am gluten intolerant as are my siblings. 3 years ago I was diagnosed with an autoimmune disorder and am on a cocktail of immunosuppressant drugs but keep relapsing so may have to be on them for life! 
    I also have high blood pressure and have horrible side effects to the meds. Could both these illnesses be connected to gluten? I read, recently that there’s a connection between gluten and high BP.  Do you know something about this? Doctors here in the UK know nothing about this, not even the consultant rheumatologist on whose advice I have stopped excluding gluten from my diet. I have also developed a sensitivity to milk protein (casein?). Are these all connected?

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    plumbago
    1 hour ago, Liz Barnard said:

    I am 79, have never been diagnosed with Coeliac Disease  but know that I am gluten intolerant as are my siblings. 3 years ago I was diagnosed with an autoimmune disorder and am on a cocktail of immunosuppressant drugs but keep relapsing so may have to be on them for life! 
    I also have high blood pressure and have horrible side effects to the meds. Could both these illnesses be connected to gluten? I read, recently that there’s a connection between gluten and high BP.  Do you know something about this? Doctors here in the UK know nothing about this, not even the consultant rheumatologist on whose advice I have stopped excluding gluten from my diet. I have also developed a sensitivity to milk protein (casein?). Are these all connected?

    Welcome Liz. To me, it sounds a bit of a stretch to link hypertension with gluten, but use any advice you receive here just as food for thought. Looking in my book, Recognizing Celiac Disease, there is some mention of mineral deficiencies like magnesium and potassium, associated with elevated blood pressure, but again to me that seems unlikely - there is an overemphasis on vitamin and mineral deficiencies oftentimes, on boards and in forums like these, IMO. The other thing the book mentions is hyperthyroidism. And with that, yes, there is a more plausible link to high blood pressure.

    Seeing you are on some immunosuppressants, have you thought about those as the culprit? I know certain corticosteroids can raise blood pressure, especially when taken long term. The mechanism is fluid retention. (Steroids can also increase blood sugar.)

    You also ask if your autoimmune condition can be caused by gluten, but didn't mention what that autoimmune condition is. Personally, I do think that diet can lead or trigger autoimmune conditions, and though I am not an expert, I suspect gluten can be included in that.

    Anyway, I hope others will weigh in. Good luck.

    Plumbago

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    trents

    Celiac disease usually brings along other autoimmune conditions in time. Also, it is typical for celiacs to develop other food intolerances. Intolerance of dairy (casein) is the most common ones.

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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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