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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.

    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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    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

    Any chance on posting the recipe for the sponge cake? I loved to make elaborate cakes before I was diagnosed about 6 months ago. I'm still learning how to live with this!

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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!

    Your son's symptoms sound like my son's. After nearly 2 years, a specialist realized he couldn't digest the protein in dairy. We just had to take dairy out of his diet and he was a different child with no pain.

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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!

    Don't wait to put on a gluten-free diet. Just do it. Whole foods before ordering a bunch of gluten-free stuff. Watch your spices and condiments. You will be glad you did as your son will feel much better. At least he got a diagnosis; just think of all the people out there who don't have one and are still suffering needlessly.

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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

    Hi Cathy, I just read your comment. Thanks for sharing! There are similarities in our conditions. I gave up gluten because I started to research and listen to my body. I'm grateful for your story as it confirms to me that I'm doing the right thing. I also gave up cow milk a long time ago and now enjoy a vegan diet! I feel incredible. My family are also on this healthy life changing journey with me. We are so much healthier for it. All the best!

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    I'm suffering from the same symptoms for more than 2 months now. Please, I really need help. I told my doctor that it could possibly be celiac disease. He sort of said that I'm thinking too much! But I'm not crazy. I've had blood tests, ultrasound and stool test and results are all normal.

    My doctor gave me another prescription (again) and the nausea and stomach pain don't go away. But he said to take it for 4 weeks and come back! But I don't want to suffer from this anymore and start the gluten-free diet, but I have no choice as I want to prove to him that the pills don't work and I still feel ill. I need your advice, guys. Thank you!

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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!

    This is exactly how I feel. I had the blood test on monday, still waiting for results. Thanks for your post.

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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

    You hit the nail right on the head, big pharma. Rules! Time for them to get run out of town on a rail.

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    I'm 59. I have been overweight all my life and developed type II diabetes in my 40s, but I keep good control. I always had occasional gastric issues, but nothing intense. I also have a long history of depression and am in treatment for it. In 2010 I got really physically sick literally overnight. 7 hospitalizations in 7 months and 2 major surgeries resulted in total colectomy later. I was told I would have routine diarrhea the rest of my life. Nobody ever mentioned the words gluten or celiac ever! 4 months ago, the daily movements intensified and began awakening me at night every hour or two. Just consulted a new gastroenterologist who gave me blood tests for celiac disease and bingo! Major positive results. Biopsy is scheduled. I am anxious, scared and I hate to admit it, but the depression is almost intolerable with the months of no real sleep. If you are the praying type, I'd appreciate a mention to the guy upstairs for me. Nothing else keeps me going. Thanks for the forum. Best wishes to all.

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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

    I have been having a symmetrical rash for at least a year now and everyone always just thought it was a fungus because no one would listen to me about the symmetrical part. I have spent a very long time searching symmetrical rashes and all I can find is celiac disease. I'm very scared to go to the doctor and ask them to test me for it on Monday. Reading all these stories about misdiagnoses scares me. I am only 16 but if they tell me I don't have it I'm going to get rid of gluten in my diet anyways. I'm nervous about having my diet change for the rest of my life, but I think I can do it. I really liked this website and I appreciate everyone sharing their stories, I got a lot of information out of this website and others' comments... Wish me luck!

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    I am 21 years old. I was diagnosed with celiac disease about seven years ago. I was a moody, small, unhealthy little girl. For years I thought that feeling awful all the time was just a part of life. I learned to live with feeling weak and lightheaded all the time. It was later that I started to realize that everyone else didn't feel the same way that I did. That's when I started asking questions and opening up to my parents with things that I had previously thought were just facts of life. A couple of weeks later we figured out that I had celiac disease.

    The only reason that I was diagnosed so quickly is because my grandma on my mom's side has celiac disease and went through similar terrible experiences with being diagnosed. I am so grateful that my diagnosis was not so drawn out and hard. Living the diet is another story entirely, however, and I'm afraid that I'm not very good at it.

    I hope that being diagnosed gets easier. I know that I am very open with people about celiac disease in hopes to raise awareness. Thank you so much for this website!! It is a wonderful resource for a disease that can be hard to live with at times.

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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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