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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.

    During my doctor visits my diet was never discussed, even though most of my symptoms were digestive in nature.

    Scott Adams' Story of His Diagnosis of Celiac Disease - Image: CC BY 2.0--NIHClinicalCenter
    Caption: Image: CC BY 2.0--NIHClinicalCenter

    Celiac.com 07/25/1996 (Updated: 12/29/2020) - Like many people with celiac disease (it's an autoimmune disease and not a wheat allergy or the same as gluten sensitivity, gluten intolerance, or sensitivity to gluten), I spent a lot of years and money and endured many tests and misdiagnoses before doctors finally discovered that I needed to avoid gluten (including all gluten containing ingredients). Gluten is a protein found in gluten containing grains that include wheat, rye, and barley, and is often hidden in processed foods. To treat my celiac disease I had to go on a gluten-free diet for life, which meant that I had to learn to read food labels, and I ate mostly naturally gluten-free foods like meats, fruits, nuts, vegetables, gluten-free breads, and foods that were labeled gluten-free or made using gluten-free grains. My symptoms, which included weight loss, abdominal pain (especially in my middle-right section while sleeping), bloating, and long-term diarrhea, slowly disappeared.

    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, which is why is still takes an average of 6-10 years to get diagnosed. 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 very typical, and greatly related to food digestion. 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 you slowly add these foods back into your diet.

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    Unfortunately it took my doctors over two years to make a diagnosis, and 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, an MRI, tests for bacterial infections and parasites, ultrasound scans, and gall bladder tests. Ultimately the only reason I every got my diagnosis was because I ended up reading something about it in a book on nutrition, which led me to ask my doctor to be screened 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). 

    A full recovery took me 2-3 years, and during that time I also had temporary food intolerance issues to things like dairy (casein), corn, tomatoes, and chicken eggs. During the 1-2 year time period after going 100% gluten-free I was thankfully able to add those things back to my diet.

    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.



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    trents

    I'm not sure you understood what I shared in the previous post.

    If you are being tested for celiac disease you must not quit eating gluten until all tests are over. And if your doctor okayed that he or she doesn't know what they are talking about.

    The Mayo Clinic guidelines for a pretest gluten challenge are the daily consumption of two slices of wheat bread (or the gluten equivalent) for 6-8 weeks leading up to the day of testing. 

    For the person with celiac disease, the consumption of gluten triggers an autoimmune reaction in the small bowel that causes inflammation which, in turn and over time, damages the villi that line the small bowel. The serum tests for celiac disease are designed to detect antibodies produced by the inflammation. If you eliminate gluten you eliminate the inflammation and so eliminate the antibodies. From Open Original Shared Link : "It's important to be tested for celiac disease before trying a gluten-free diet. Eliminating gluten from your diet might make the results of blood tests appear normal."

    There is also something called NCGS (Non Celiac Gluten Sensitivity) which produces many of the same symptoms as celiac disease but doesn't damage the villous lining of the small bowel. There is no test for this but celiac disease must first be ruled out.

    Here is a primer for the tests that can be run to detect celiac disease: Open Original Shared Link I would recommend the doctor order: 1. total serum IGA, 2. tTG-IGA and 3. Deamidated gliadin peptide (DGP IgA and IgG). Many doctors will only run the tTG-IGA which misses some people who actually do have celiac disease.

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    Kaeckman
    On 10/23/2007 at 3:47 AM, Guest Catherine said:

    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 can't eat gluten or peppers of any kind or tomatoes and the only problem that I have is my hands hurt. The bones in my hands feel like my tongue after eating a hot pepper for days after eating a little bit of gluten or pepper or tomatoes. What can I do to help 😕?

     

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    trents
    6 minutes ago, Kaeckman said:

    I can't eat gluten or peppers of any kind or tomatoes and the only problem that I have is my hands hurt. The bones in my hands feel like my tongue after eating a hot pepper for days after eating a little bit of gluten or pepper or tomatoes. What can I do to help 😕?

     

    Sounds like an allergic reaction to gluten and vegetables in the nightshade family but not necessarily celiac disease.

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    Vicrob

    The last 10 years I’ve been having severe migraine back of my head and awful balance issues. I’ve now developed pins and needles in my arms and leg and severe muscle cramps. Other symptoms are raised liver enzymes and now suspected SVT. I’ve had numerous tests but now my doctor has referred me to the Hallamshire hospital, Sheffield to see a neurologist, I strongly suspect I have gluten ataxia. This is when gluten affects the cellebrum. I became gluten free 3 months ago and already My balance issues and dizziness has resolved. There is a ink to gluten and SVT but not much is known about it. So, some of you may find my journey interesting as gluten ataxia is often not diagnosed. When I had tests for balance issues my diet was not even discussed. Interestingly my gut is hardly affected, only thing is I get wind when I eat gluten. 

     

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    knitty kitty
    31 minutes ago, Vicrob said:

    The last 10 years I’ve been having severe migraine back of my head and awful balance issues. I’ve now developed pins and needles in my arms and leg and severe muscle cramps. Other symptoms are raised liver enzymes and now suspected SVT. I’ve had numerous tests but now my doctor has referred me to the Hallamshire hospital, Sheffield to see a neurologist, I strongly suspect I have gluten ataxia. This is when gluten affects the cellebrum. I became gluten free 3 months ago and already My balance issues and dizziness has resolved. There is a ink to gluten and SVT but not much is known about it. So, some of you may find my journey interesting as gluten ataxia is often not diagnosed. When I had tests for balance issues my diet was not even discussed. Interestingly my gut is hardly affected, only thing is I get wind when I eat gluten. 

     

    Get checked for vitamin and mineral deficiencies as part of proper follow up care for Celiac Disease.  

    Tachycardia, peripheral neuropathy, muscle cramps, migraines, raised liver enzymes, ataxia, gait changes, vestibular (balance) problems are all symptoms of Thiamine deficiency.  

     

    Vestibular signs of thiamine deficiency during the early phase of suspected Wernicke encephalopathy

    Open Original Shared Link

    And...

    Hiding in Plain Sight: Modern Thiamine Deficiency

    Open Original Shared Link

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    Catherine Read

    What suggestions do you have for nausea ? I have tried ginger ale,tums, gluten free saltines. It just comes n for no reason. I work hard at a gluten free diet. Have had an endoscopy, colonoscopy and blood work twice. It is really getting me down.

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    knitty kitty
    6 hours ago, Catherine Read said:

    What suggestions do you have for nausea ? I have tried ginger ale,tums, gluten free saltines. It just comes n for no reason. I work hard at a gluten free diet. Have had an endoscopy, colonoscopy and blood work twice. It is really getting me down.

    Thiamine.  Nausea is another symptom of thiamine insufficiency.  Try 100 mg with meals.

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    tracybarth66

    10 years ago I started experiencing severe body pain and inflammation from the waist down. To the point that walking was impossible,  kneeling down I was afraid I wouldn't have the strength in my legs to get back up. The doctor tested me and said I had hypothyroidism. Great! A diagnosis. The problem was that this never addressed the pain I was in. For 10 years I have complained to several doctors about my body pain and swelling to no avail. About 4 weeks ago I ate a plate of pasta and looked like I was 8 months pregnant. I was sitting there, miserable,  a lightbulb went off. I contacted my Dr and said I wanted to be tested for celiacs and liw and behold there it was. I had an answer to my misery. I have been gluten free for 3 weeks and the difference is amazing. I still have some body pain but I feel like I have a new lease on life. I'm very new to all of this and trying to learn as much as I can. I'm hoping it will get easier as I go. I can spot wheat, barley and rye when the label clearly states its the hidden ingredients I'm having difficulty with. Thanks for letting me share

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    trents

    @tracybarth66, this might help:

    Sounds like you might need to pay attention to CC (cross contamination). This happens when food items that are naturally gluten free have been contaminated with gluten because of having come in contact with gluten containing grain products during production in the field, transporting, storage and processing (on shared equipment). Two examples would be oatmeal and lintels unless they are stated to be gluten free on the packaging. Even better than "gluten free" is "certified gluten free" which is subject to stricter ppm standards.

    Edited by trents
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    Guest Rebecca

    Posted

    Hi. I live in Africa with celiac disease  and collagenous microscopic colitis - fun! I'm concerned about possibility of gluten in pork. I know sites say you can't get "glutened" by eating  grain fed animals. However, where I live, pigs are fed humongous amounts of BREAD! When I eat pork (I, reluctantly, try to remove lots of fat as this may cause  issues with the microscopic colitis?), this makes D worse. IS there a possibility the bread fed pigs could be affecting me?? Any suggestions appreciated.  Rebecca 

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    trents
    4 hours ago, Guest Rebecca said:

    Hi. I live in Africa with celiac disease  and collagenous microscopic colitis - fun! I'm concerned about possibility of gluten in pork. I know sites say you can't get "glutened" by eating  grain fed animals. However, where I live, pigs are fed humongous amounts of BREAD! When I eat pork (I, reluctantly, try to remove lots of fat as this may cause  issues with the microscopic colitis?), this makes D worse. IS there a possibility the bread fed pigs could be affecting me?? Any suggestions appreciated.  Rebecca 

    Short answer, "No". But there is a possibility that you have an intolerance or sensitivity to pork protein. My mother in law cannot eat pork for this reason.

    Edited by trents
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    Scott Adams
    6 hours ago, Guest Rebecca said:

    Hi. I live in Africa with celiac disease  and collagenous microscopic colitis - fun! I'm concerned about possibility of gluten in pork. I know sites say you can't get "glutened" by eating  grain fed animals. However, where I live, pigs are fed humongous amounts of BREAD! When I eat pork (I, reluctantly, try to remove lots of fat as this may cause  issues with the microscopic colitis?), this makes D worse. IS there a possibility the bread fed pigs could be affecting me?? Any suggestions appreciated.  Rebecca 

    The rumors about possible gluten in meat due to gluten that an animal might have been fed have never been backed up by any scientific evidence. I haven't seen a specific study on pork, however, here is one that was done for beef:

     

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  • About Me

    Scott Adams

    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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