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  • Scott Adams

    Scott Adams' Story of His Diagnosis of Celiac Disease

    Scott Adams
    1 1
    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.


    Image: CC BY 2.0--NIHClinicalCenter
    Caption: Image: CC BY 2.0--NIHClinicalCenter

    Like many people with celiac disease, I spent a lot of years and money to go through many tests and misdiagnoses before doctors finally found my problem. 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. Most medical doctors are taught to look for classic symptoms and often make a wrong diagnosis, or no diagnosis at all, which is why is still takes an average of 6-10 years for those with celiac disease to get diagnosed

    During my doctor visits my diet was never discussed, even though most of my symptoms were digestive in nature. My symptoms included abdominal pain, especially in the middle-right section while sleeping, bloating, and diarrhea (off and on over a period of several years). 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 one slowly adds these foods back to their diet.



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    It took two years for the doctors to discover that I had celiac disease. 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, tests for bacterial infections and parasites, ultrasound scans, and gall bladder tests. Luckily I ended up reading something about celiac disease in a book on nutrition, which led me to ask my doctor to test me 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). 

    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.

    Edited by Scott Adams

    1 1

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    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

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    Thank you so, so much for this incredibly helpful website! I was just diagnoses with celiac disease a few weeks ago, and as a newbie I'm relying heavily on your lists of safe vs. unsafe ingredients. Thank you, thank you, thank you!! :-)

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    Dear website, I have been severely ill since 1998-99. They diagnosed me with a brain disorder called Arnold Chiari Malformation 1. I had three major brain surgeries for the pain. I have suffered all these years and no answer from any gastro doctors or surgeons. Walked into my new GP other day and she said have you heard about celiac sprue. I am floored and thanking God I have finally received and answer from heaven!!! All these years of being bedridden are fixing to be gone and I can live a normal life!This website has given me my life back and one simple word of advice by a doctor after hundreds of them had written me off as crazy. No more pain!!!! Thank you Jesus and Scott for giving me my life back im 48 years old and spend 7-8 years in bed with debilitating pain. There are no words to describe how I feel right now. My sister has same problems too they will be floored to know there is an answer now. Thank You from all my heart, Jane in Texas!!!

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    Thanks for the site bro! found tons of info that has really helped food wise. I think i have it easy. No symptoms, regular blood work showed low iron and some other stuff so a scope was ordered and I was confirmed as a celiac. (my sister has it and the doc was on the ball so he had the biopsy done) funny thing was that I felt fine, I have always had tons of energy and am never tired. I've been gluten free for about 10 days and I feel even better. I traded my Guinness for jack and coke!!

     

    'take the shortest route to the puck and arrive in ill humor.'

     

    Cordially,

    MEF

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    Guest naomi putticvk

    Posted

    After reading your story Scott I am convinced hat I now have an answer to my problems. I have suffered bloating pain in my right side and intermittent diarrhea for many years now. I am also lactose intolerant and so follow to the best of my ability that kind of diet, so when I next see my doctor in ten days time I will ask him to test me for it. Once again thank you Naomi Switzerland. PS Will keep you up to date on final diagnosis

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    Thanks for the website. I have been having progressively worsening symptoms over the past few years that have been escalating over the past few months. I never would have considered celiac disease. Interestingly, when I feel truly terrible I will stay on a clear liquid diet and perk right up - then fall into the same eating patterns and feel terrible. I have had diagnostic tests that to date have been negative. I have an appointment with a GI specialist today and will surely ask him to test me for celiac disease - I am miserable!

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    Dear Scott,

    I love your site and all your helpful info. I am a mother of a newly diagnosed 8 year old celiac sufferer. I however feel confused even though I trust his gastroenterologist from Children's. So I was hoping you might help me if you could find the time to respond to my question. My son had problems since he was a baby with some type of intolerance but no allergies. Severe reflux as well. Constipation with bleeding off and, and stomach pain after eating which led me to seek a specialist. One antibody was 14 (supposed to be <4) and biopsy showed high lymphocytes, immune cell presence, BUT NO DAMAGE to the VILLI in his small intestine. This is why I am confused. I know he has some autoimmune disorder as I have several (not celiac though) but I want to be 100% sure this is the correct diagnosis before I put him on this diet for the rest of his life. I am sorry for imposing on you but I have dealt with so many doctors with my own health problems. Even hearing I was looking for something to be wrong when I had 3 miscarriages! This was a top doctor from a renowned university. IF, you can find the time to briefly guide me in this difficult diagnosis I would be so greatly thankful. Again, your site is so helpful and I plan on ordering plenty of food soon! Keep up the great work and best to you and your progress!

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    This is an amazing site. I needed to know different recipes and what foods my daughter needs to avoid. She has just gone through so much and had a biopsy yesterday. She is only 8 years old and has lost 6 lbs. and always has chronic stomach pains and loose bowel movements. We should find out the results in a few weeks but she has started today on a wheat free diet. She loves banana bread and was sad she couldn't eat it anymore until we found this site. She loves the new banana bread more than the old type with wheat in it.

    Thank you very much for all this much needed incredible information for a parent learning to care for her child.

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    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!

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    Dear Scott,

    I love your site and all your helpful info. I am a mother of a newly diagnosed 8 year old celiac sufferer. I however feel confused even though I trust his gastroenterologist from Children's. So I was hoping you might help me if you could find the time to respond to my question. My son had problems since he was a baby with some type of intolerance but no allergies. Severe reflux as well. Constipation with bleeding off and, and stomach pain after eating which led me to seek a specialist. One antibody was 14 (supposed to be <4) and biopsy showed high lymphocytes, immune cell presence, BUT NO DAMAGE to the VILLI in his small intestine. This is why I am confused. I know he has some autoimmune disorder as I have several (not celiac though) but I want to be 100% sure this is the correct diagnosis before I put him on this diet for the rest of his life. I am sorry for imposing on you but I have dealt with so many doctors with my own health problems. Even hearing I was looking for something to be wrong when I had 3 miscarriages! This was a top doctor from a renowned university. IF, you can find the time to briefly guide me in this difficult diagnosis I would be so greatly thankful. Again, your site is so helpful and I plan on ordering plenty of food soon! Keep up the great work and best to you and your progress!

    It is a common misconception that celiac disease is only confined to the small intestines but it is not based on the seminar I attended in the past. If he's already having problems with digestion, most likely he's starting to have the signs and symptoms of gluten sensitivity. Celiac disease is the end stage of gluten sensitivity. There are also manual therapy techniques available and the one I use is called integrative manual therapy along with NAET (Nambudripad's Allergy Elimination Technique) which could help detect where the problem is coming from. Hope this helps answer some of your questions.

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    I gained 10 pounds and had severe abdominal bloating this spring. I've had intermittent problems with diarrhea and constipation over the years. My doctor had a CT scan that showed an enlarged ovary so I was given an internal ultrasound. I had a hemorrhagic cyst but it was not the problem. My doctor sent me to a gastroenterology specialist and he suggested an upper endoscopy, looking for ulcers or polyps. He also did a stomach and intestinal biopsy. The biopsy came back positive for Celiac. I am having blood work done today to confirm and check my gluten levels. I am 50 years old and although I am glad I have a diagnosis, I am having a hard time with the complete change of lifestyle. I have always loved to cook and bake and now I have to modify everything. I often travel with my husband, and this can now be a problem when I travel to places like Africa. I am grateful for this website. I would like to see something on how to adjust to the radical changes one has to make, especially someone my age! Thank you.

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  • About Me

    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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