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    Scott Adams' Story of His Diagnosis of Celiac Disease


    Scott Adams

    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, 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.

    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.

    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 biopsy of my small intestine (which is not as bad as it sounds). Although the biopsy is still considered the gold standard of diagnosis, there are also several blood tests for celiac disease.

    I decided to create this Website 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 the Celiac Listserv News Group, and posted it all right here. Please remember that I am not a doctor, and none of this information should be considered expert medical advice....enjoy! - Scott Adams


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    Guest Catherine

    Posted

    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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    Guest Jane Claflin

    Posted

    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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    Guest BackCheck48

    Posted

    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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    Guest JCarter

    Posted

    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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    Guest Charline

    Posted

    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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    Guest Rachel

    Posted

    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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  • About Me

    In 1994 I was diagnosed with celiac disease, which led me to create Celiac.com in 1995. I created this site for a single purpose: To help as many people as possible with celiac disease get diagnosed so they can begin to live happy, healthy gluten-free lives. Celiac.com was the first site on the Internet dedicated solely to celiac disease. In 1998 I founded The Gluten-Free Mall, Your Special Diet Superstore!, and I am the co-author of the book Cereal Killers, and founder and publisher of Journal of Gluten Sensitivity.

  • Related Articles

    Scott Adams
    (Celiac.com 08/13/2000) Because celiac disease has emerged as a public health problem, Swedish researchers conducted a study to analyze the trends in the occurrence of symptomatic celiac disease in Swedish children from 1973 to 1997, and to explore any temporal relationship to changes in infant dietary patterns. The researchers established a population-based prospective incidence register of celiac disease in 1991, and collected data retrospective date from 1973. A total of 2,151 cases met their diagnostic criteria, and were used in the study.
    In addition the researchers collected national data on an annual basis regarding the duration of breastfeeding and intake of gluten-containing cereals and recommendations on when and how to introduce gluten to the diets of infants. The incidence of celiac disease in children below 2 years of age increased fourfold (200-240 cases per 100,000 person years) between 1985 and 1987, followed in 1995 by a sharp decline to the previous level (50-60 cases per 100,000 person years). A pattern like this one is quite unique for a chronic disease of immunological pathogenesis, which suggests that prevention could be possible.
    This study demonstrates that the celiac disease epidemic is in part the result of a change in three factors within the area of infant feeding, including the amount of gluten given, the age of gluten introduction, and whether breastfeeding was ongoing or not when it was introduced. There may also be additional factors involved, and the search for them should be intensified.
    Ivarsson A, Persson LA, Nystrom L, et al
    Acta Paediatr. 2000 Feb;89(2):165-71

    Jefferson Adams
    Celiac.com 07/30/2007 - A study published in the journal Clinical Gastroenterology and Hepatology suggests that a newly proposed system of classifying duodenal pathology on celiac disease provides an improved inter-observation than the less Marsh-Oberhuber classification, and offers an advance towards making a simpler, better, more valid diagnosis of celiac disease. Celiac disease is presently classified according to the Marsh-Oberhuber system of classifying duodenal lesions.
    Recently, a more elementary method has been suggested. That method is based on three villous morphologies—non-atrophic, atrophic with villous crypto ratio <3:1, and atrophic, villi idnetectable—combined with intraepithelial counts of >25/100 enterocytes.
    The study team chose a group of sixty people to be part of the study. Of the 60 patients the team studied, 46 were female and 14 were male. The average age was 28.2 years with a mean range of 1-78 years. 10 people had celiac disease, 13 had celiac disease with normal villi, but a pathological increase in epithelial lymphocytes >25/100 & hyperplastic crypts. 37 patients had celiac disease with villous aptrophy.
    Patients were given biopsies, with at least 4 biopsies were taken from the second part of the duodenum. Biopsies were fixed in formalin and processed according to standard procedures, with cuts at six levels, and stained with hematoxylin resin. The slides were sent randomly to 6 pathologists who were blind to one another.
    The results showed that this new method of classification yielded better inter-observer agreement and more accurate diagnosis that the more difficult Marsh-Oberhuber system.
    Clinical Gastroenterology and Hepatology 2007;5:838–843
    health writer who lives in San Francisco and is a frequent author of articles for Celiac.com.

    Jefferson Adams
    Celiac.com 01/04/2010 - The practice of using antibody testing to diagnose celiac disease has led to an explosion in the number of cases detected among children, coupled with a rise in median age at diagnosis, a new study suggests.
    European studies have shown that celiac disease is a multi-system disorder, affecting 0.3% to 1.0% of all children. A team of researchers recently set out to examine the impact of serological testing on childhood celiac disease in North America The research team consisted of Kelly E. McGowan, BHSc, Derek A. Castiglione and J. Decker Butzner, MD with the Department of Pediatrics, University of Calgary, Calgary, Canada.
    Serological testing makes it easier to spot children with atypical or extra-intestinal symptoms or with conditions associated with celiac disease. Serological testing has resulted in a huge increase in celiac disease cases; it has tripled incidence levels, quadrupled diagnosis age, and brought about a greater understanding of the wide variety of presentations of celiac disease in North America.
    Younger children are more likely to develop classic celiac disease, whereas older children seem more likely to show atypical presentations.
    The goal of the study was to determine the effects of immunoglobulin A endomysial antibody testing on the incidence and clinical presentation of childhood celiac disease.
    Researchers compared the incidence and clinical presentation of celiac disease in two groups of patients. Both groups were under a pretesting group of patients under 18 years of age in 1990–1996  and compared with a testing group of  patients under 18 years of age in 2000–2006.
    Average age at diagnosis was 2 years (95% confidence interval: 2–4 years) in the pretest group (N = 36), compared with 9 years (95% confidence interval: 8–10 years) in the test group (N = 199; P < .001); female/male ratios (1.6:1) were similar (P = .982).
    Incidence of celiac disease increased from 2.0 cases per 100,000 children in the pretest group to 7.3 cases per 100,000 children in the test group (P = .0256).
    Frequency of classic celiac disease decreased from 67% in the pretest group to 19% (test group; P < .001), but the incidence of classic celiac disease did not change (0.8 vs 1.6 cases per 100000; P = .154).
    In the test group, researchers uncovered 13 previously unnoticed clinical presentations in 98 children, including 35 with family history, 18 with abdominal pain, and 14 with type 1 diabetes mellitus.
    The frequency of Marsh IIIc lesions decreased from 64% in the pretest group to 44% in the test group (P = .0403).
    In the test group, classic celiac disease was most common, making up 67% of cases in young children under 3 years, whereas atypical gastrointestinal and silent presentations were more common in older children.
    Overall, the contribution of serological testing to the diagnosis of celiac disease has been enormous. Antibody testing for celiac disease has tripled the incidence of celiac disease and quadrupled the average age at diagnosis, thus offering millions of children a higher quality of health.
    Source: Pediatrics, December 2009.


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