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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.

    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.


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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 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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    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!

    Hi Rachel,

    Hope you are feeling better by now as it's been over four months since your post. It took me several months before I was finally gluten free. I didn't realize that things like soy sauce and root beer and modified food starch contained gluten.

    Little by little, I discovered all the things that were causing me trouble.

    It sure feels good not to feel bad!

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    Hi Kathleen,

    I was 68 when I finally got diagnosed six years ago. I never was too crazy about pasta, bread, and pastries, so I don't miss that, except for some good French or Italian bread now and then.

    Actually, the gluten free diet is a really healthy one, as you can't eat much processed food. Lots of fresh fruits and veggies, brown rice and corn, lean meat, chicken and fish, and dairy products if you don't happen to be lactose intolerant. And even if you are, there are lactose free products or the pills you can take with dairy foods. I happen to LOVE Mexican food, so I'm in luck if I have to eat out. Just make sure there is no wheat in the tortillas or sauces.

    As far as baking goes, I was really getting into turning out piles of Christmas cookies and treats for the family when I" had to go gluten-free, so there went the baking. However, the web is a great source of gluten-free recipes. I make a great lemon sponge cake that is a good substitute for the angel food cake I always loved. And if you live near a Trader Joe's, they have a good gluten-free ginger snap cookie and also reasonably priced mixes for brownies and maybe cookies. I also miss stuffing. I bought some self-rising corn meal and make cornbread, which I then use as the base for the traditional stuffing with onions. celery, sage. etc. It works for me!

    Best of luck to you, and drop me a line and let me know how you're doing.

     

    Regards,

    Sally

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    Any hope of adding information about those who are gluten free, corn free, soy free and need to be low carbohydrate diet also. It is so hard to find bread recipes or tortilla recipes that would fit this bill. Rice flour and all the starches are really high in carbohydrates.

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    My friend had stomach problems for over 20 years! The doctors didn't know what was wrong with her. They wrongly diagnosed her for IBS. I now found this website and she has been tested for Celiac two days ago. The results should come in today. Wish her luck!

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    Thank you for your website and all the comments are helpful also.. I was diagnosed about 20 months ago and have been following gluten-free diet always! I must admit, if I didn't actually get so sick shortly thereafter it would likely be much more difficult to follow. But the thought of what it is to come immediately is probably even more powerful than the long term. I almost died and am grateful to be alive. I do worry terribly about the lack of nutrients since my intestine has not healed and I can receive none. It scares me I must admit and I fear I have had it for years and could be refractory. If you have any suggestions I am open for any and all ideas. Thank you for helping others like yourself!

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    Guest Anna Mae Schroeder

    Posted

    It is most interesting to read what people have to relate about their gluten sensitivity.

    But some folks do not read labels, or know exactly what ingredients contain wheat. It would be good to instruct readers about what ingredients are taboo. THANKS SO MUCH for this site!

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    Hi Scott, I contacted you in 1998 after receiving my diagnosis of being a celiac regarding gluten-free food and flours. I have been an avid reader since, and abstain from anything that could possibly have any gluten containing ingredients. I have regained my health after being diagnosed with IBS, gastroenteritis, duodenitis, anxiety, depression, had breast lumps removed, hysterectomy for massive bleeding, lipomas, and reactive arthritis reaction to antibiotics, lower back disc surgery ..... never did any physicians (even after colonoscopy for diarrhea) suggest celiac! Finally had diagnosis and it is truly amazing that I feel better than I have in my whole life since abstaining from gluten since 1998! The reason this is not better known is because there is no drug to advertise as a treatment, therefore no money to be made in pharma or medical world. Just imagine the evening commercials for a drug for celiac: " do you suffer from ...... ask your doctor if xxx is right for you!" All that is needed is abstaining from what is basically poison to your body. It's like NOT sprinkling a little ant poison on your food every day! Thanks so much! Cathy from CO

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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.

    I am 47 started suffering terribly in 1993 and was just diagnosed in 2010. I am always interested in what people actually mean when they say adjust to the changes after diagnosis. Changing my diet was easy. As I figured it out I chose vegetables, fish, shrimp, bake, broil, steam, grill. What was difficult was handling the emotional side of all of the suffering I had endured. I needed a safe place to just talk. I needed someone to hear me about, not think I was crazy. I wanted to understand how all of these doctors could have failed me. I saw several psychiatrist who just offered me medication - wrong answer. Saw 3-4 therapist who basically thought I should get over it - wrong answer. The only comfort was God, my faith and my Bible. The celiac disease support groups help with food choices and lifestyle changes, but I have not been able to identify an emotional healing celiac support group in the United States. I met an addiction therapist who really understands the emotional toll suffering causes. Through treating celiac patients he has come to understand the need for emotional healing. The more we heal emotionally the better we are able to adjust to a new found opportunity for improved health. He is in the process of creating an emotional healing support group for celiacs. I hope that since 2009 you have received the emotional support that we all need and some help with lifestyle changes.

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    Your site says that ALL wines are safe for celiac. Then why do ALL other sites say that some do contain gluten?

    We are aware of the claim, the problem is that none have ever tested positive for gluten, and I challenge the other sites to produce such a test. Winemakers don't want gluten in their wine...would be a big mess.

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  • About Me

    Celiac.com's Founder and CEO, Scott 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. Scott launched the site that later became Celiac.com in 1995 "To help as many people as possible with celiac disease get diagnosed so they can begin to live happy, healthy gluten-free lives."  In 1998 he founded The Gluten-Free Mall which he sold in 2014. He is co-author of the book Cereal Killers, and founder and publisher of Journal of Gluten Sensitivity.

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