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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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    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.

    Thanks for sharing that. I am 56 and have gone through hell. I was so sick I couldn't get out of bed.

    I just went for it. It wasn't that hard as I have always eaten a healthy fresh diet. I just got rid of the wheat. I almost immediately began improving, and I am getting better every day. I have serious remaining issues with how I was treated by the doctors and the thousands and thousands of dollars spent, and in the end I had to diagnose and heal myself. I will never trust another doctor again.

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    I am 21 years old. Three years ago, when I was 18 and a few months away from graduation, I had ultrasound down to check on my bladder... (I was having overactive issues and the urologist wanted to make sure there was nothing wrong with my bladder)....and we discovered that I had gallstones. I had begun to have digestive problems before we found out about the stones, so when I found out about them I thought that was what was causing it. Shortly after having my gallbladder removed abdominal pain and bloating as well as diarrhea after I ate. I went back to the doctor who did the surgery and he said that happen sometimes and put me on some medicine. The medicine worked for about half a year before it quit all together and the pain came back with a vengeance.

    For the next two years I would visit my regular doctor and GI several times. The GI diagnosed me with IBS. He told me to cut fried and greasy foods out my diet and that would help some.

    I never actually agreed that it was IBS but he was the doctor. A year and a half later and as my problems continued to persist. About 4 months ago I woke up to the worst pain in my upper abdomen and my heart seemed to be trying to beat out my chest, a few minutes later this was followed by diarrhea that would last for the next couple of hours. Unsure of what was going on my family took me to the ER. While there I was told I was severally dehydrated, which made no sense since I had drinking water through the whole night before falling asleep, and that my electrolytes were off. What got to me was that the doctors there didn't know what was going on either. One doctor asked me how i had been feeling leading up to this moment. So I told him about everything that had been going on. He told us he didn't believe I had IBS and that my GI probably only told me that because he wasn't sure what I had either.

    I was kept at the hospital over night, my heart rate wouldn't drop past 150 till early in the morning, and then i was released with them telling me to see my regular doctor soon.

    My appointment to see my regular doctor was suppose to be two weeks after leaving the hospital but she ended up seeing us four days after I came back home. When I tried to eat I ended up throwing up and this deep ache had settled into my muscles and joints. I think this is what finally made my regular doctor begin to suspect what was going on. She order some blood test done and a week later we got a call saying that I had a gluten intolerance.

    A month into a gluten free diet and I could already tell the difference. So I then sat there and wondered why, for three years, I had to go all this pain and no one could get it right but my regular doctor. So I asked her when I went in for a checkup.

    Turns out I would of been diagnosed sooner if I had went to her more instead of trying to deal with the pain on my own. Instead I either kept the problems to myself or went to the GI, who was convinced it was IBS. I was surprised to learn that my doctor has Celiac disease. When I finally gave a complete list of all the problems I had been having through out the last three years..from the pain to my fatigue, irritability, to the simple decline in my dental health..she knew what it was and had some test done it made sure.

    She then told me to check out this site and I did. For the last few months this is where I've gone to find out what I should and shouldn't eat. Thank you. I'm still trying to figure everything out but at least this site gives me a good place to start.

    Now for a quick question, how do you get over the looks people give you when you ask what on the menu is gluten free?

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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!!!

    Hi Jane,

     

    I know this is a long shot that you will see this after so many years, but I too have Chiari and I am curious to know where you read something about the connection? I do not have the symptoms here personally, but my children & mother do. Please let me know if you changed your diet and how it affected your Chiari as well. I am just terrified of the surgeries. Thank You

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    I love your site, thank you. I have been struggling for years. I asked the doctors about celiac disease and was told that it's rare for a man in his 50s to have celiac disease. It is more of a woman's disease, they said. I have gone gluten-free on my own and what a wonderful difference it has made.

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    Thank you, your symptoms are mine, and I thought I was going mad with it. I am so scared to go out and eat, I don't bother. I seem to live on milky coffee 'just in case' whatever I eat will affect me!

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    My daughter was just diagnosed with celiac disease. She went to the doctor for her eight year old check up and had only grown an inch. She has always been short, but I am short so didn't think much of it. My husband is tall, but just assumed she took after me. I was shocked that the blood work came out positive for celiac and the endoscopy confirmed. My doctor is excellent because besides being short my daughter has no symptoms. I want people to know that celiac doesn't always present with GI issues and not growing two inches a year for a child is significant enough to check for celiac. She was only diagnosed a week ago but I did find tons of great products at Whole Food's. The rest of my family is being tested soon to see if anybody else has it. In the meantime, as shocked as I was and sad for her that she needs to be on this diet, there are so many great products that she doesn't even mind the diet. I have a friend with children with celiac disease and she said they do eat out and ask TONS of questions!! Don't be shy - ask about ingredients, what foods are fried in the oil, any soy sauce, teriyaki sauce etc. Just like nut allergies are so known we need people to be aware of gluten allergies because they are so common.

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    I have gluten intolerance and I believe it is the first step to celiac disease. But of course the doctor told me that I am not allergic to gluten However, the only thing that bloats me and gives me gas and other problems is gluten. I have been gluten free and pain free for 2 years now only get sick when I eat gluten. My cholesterol is normal and my arthritis seems to have disappeared. I have all kinds of problems due to years of suffering from IBS, gastritis, stomach flues, chronic diarrhea, bumps and all kinds of problems which Doctor tried to medicate and I refused the medicine because I did not feel I had what they said. Acid reflux comes with intolerance to gluten and it can cause cancer and damage the thyroid. I was always bloated, with arthritis, mental fog, depression and pains that would not go away on the right side they almost took my gallbladder. I would go into the doctor complaining of problems and pain and he thought I was crazy or something of the sort. Stopped gluten and mind is sharp with rare occasions when I eat anything with gluten.

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    I have gluten intolerance and I believe it is the first step to celiac disease. But of course the doctor told me that I am not allergic to gluten However, the only thing that bloats me and gives me gas and other problems is gluten. I have been gluten free and pain free for 2 years now only get sick when I eat gluten. My cholesterol is normal and my arthritis seems to have disappeared. I have all kinds of problems due to years of suffering from IBS, gastritis, stomach flues, chronic diarrhea, bumps and all kinds of problems which Doctor tried to medicate and I refused the medicine because I did not feel I had what they said. Acid reflux comes with intolerance to gluten and it can cause cancer and damage the thyroid. I was always bloated, with arthritis, mental fog, depression and pains that would not go away on the right side they almost took my gallbladder. I would go into the doctor complaining of problems and pain and he thought I was crazy or something of the sort. Stopped gluten and mind is sharp with rare occasions when I eat anything with gluten.

    Nayda,

    If going gluten-free works for you, stick with it. Nobody else can know how you feel. I believe my husband had gluten intolerance, though the doctor said no, the test was negative. But my husband had alopecia, (hair loss) he was the shortest in his family of four boys, and he said he often had stomach aches as a child. In later years, he would usually get diarrhea after finishing half a loaf of the olive bread or Italian bread that he loved. And our daughter was diagnosed with celiac disease when she was just a toddler. Then they thought she would outgrow it, but I now know that once diagnosed, a lifelong gluten-free diet is the only treatment. Unfortunately, she does not believe that and continues to eat gluten. My husband had dementia for several years before his death, and that can also be an effect of celiac disease.

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    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!

    Hi Marissa, my name is Jim and I was just diagnosed with celiac. How did your change of diet work for you. I am 42 and need to change everything I eat, and I too, am nervous about it.

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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?

    My info is that some wine casks use a gluten product to line the insides of wine barrels.

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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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