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    Four Big Differences Between Celiac Disease and Non-Celiac Gluten Sensitivity


    Jefferson Adams
    Image Caption: Photo: CC--Jukka Zitting

    Celiac.com 05/08/2015 - While it's true that all people with celiac disease are intolerant to gluten, not all people who are intolerant to gluten have celiac disease.


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    Photo: CC--Jukka ZittingSeveral studies have confirmed the existence of non-celiac gluten sensitivity (NCGS), a hypersensitivity or form of gluten intolerance that causes numerous symptoms similar to those of celiac disease.

    There are several key differences between celiac disease and NCGS. NCGS is distinguished from celiac disease by the following factors:

    1. No Hereditary Link
      Unlike celiac disease, NCGS is not hereditary, and shows no genetic component.
       
    2. No Connection with Celiac-related Disorders
      Unlike celiac disease, NCGS is so far not associated with malabsorption, nutritional deficiencies, or a higher risk of autoimmune disorders or intestinal malignancies.
       
    3. No Immumological or Serological Markers
      Researchers have, as yet, identified no immunologic mechanisms or serologic markers for NCGS. That means that, unlike with celiac disease, there are no telltale screening tests that can point to NCGS.
       
    4. Absence of Celiac Disease or Wheat Allergy
      Doctors diagnose NCGS only by excluding both celiac disease, and an IgE-mediated allergy to wheat, and by the continued presence of adverse symptoms associated with gluten consumption.

    Diagnosing celiac disease can be challenging. Misdiagnosis is common, and final and accurate diagnosis can take years and visits to numerous doctors.

    Because of these key differences, non-celiac gluten sensitivity is often even more slippery and difficult to confirm than celiac disease, itself.

    How about you? Do you or someone you know have celiac disease or NCGS? Share your story in our comments section below.

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    Guest sandy

    Posted

    I have been diagnosed with "possible" celiac. I definitely have non celiac gluten sensitivity, but if it runs in our family it has gone un-diagnosed. I am asymptomatic other than an inflamed small intestine. I was diagnosed 6 months ago after a battery of testing. My main symptom was extreme fatigue and a low white blood cell count along with low neutropenia count. Both have improved since going gluten free.

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    Guest Carol Sidofsky

    Posted

    I have been diagnosed with "possible" celiac. I definitely have non celiac gluten sensitivity, but if it runs in our family it has gone un-diagnosed. I am asymptomatic other than an inflamed small intestine. I was diagnosed 6 months ago after a battery of testing. My main symptom was extreme fatigue and a low white blood cell count along with low neutropenia count. Both have improved since going gluten free.

    Dr. Kenneth Fine, MD., is a Dallas, TX gastroenterologist, who has a very helpful website, that talks about gluten "sensitivity", milk protein "sensitivity", and sensitivity to soy proteins, yeast proteins, etc.

     

    Dr. Fine himself, has a non-Celiac gluten sensitivity. He says that (and many patients confirm this) that non-Celiac gluten sensitivity can cause, in many cases, just as many bad health effects as Celiac Disease can, and this (contrary to what the article says), includes MAL-ABSORPTION of vital nutrients, due to "sub-microscopic" damage (auto-immune attack) to the villi of the small intestine.

     

    Both Celiac Disease and non-Celiac Disease can be hereditary (contrary to what the article here says).

     

    Dr. Fine's "EnteroLab" does stool sample (NON-INVASIVE) testing, that can in many cases, tell one if she or he probably has a gluten sensitivity of some kind.

     

    One exception, is when a person has an "IgA deficiency". This means that his/her immune system is not able to tell his/her large intestine, to MAKE any IgA "antibodies" to gluten!

     

    In such a case (IgA "deficiency"), Dr. Fine's stool sample testing would come out "false negative", in a person who REALLY IS"sensitive" to gluten.

     

    To find out if you have an "IgA deficiency", I was told by an EnteroLab employee, to get the following blood test done first: "Total Secretory IgA".

     

    If you "pass" this test (Total Secretory IgA blood test), then, it means your immune system IS able to tell your large intestine to make plenty of IgA antibodies to whatever food proteins (gluten, milk proteins, yeast proteins, etc.) you're "sensitive" to.

     

    If, on the other hand, you "fail" the "IgA deficiency" blood test, it means that your immune system cannot tell your large intestine to make any or enough IgA "antibodies", to "show up" in Dr. Fine's stool sample testing.

     

    What Dr. Fine recommends (among other things) in such cases, is to AVOID eating "suspect" proteins, for 3 months, and see if people's health improves, and symptoms go away (or not).

     

    Carol (My hubby was tested by Dr. Fine's EnteroLab, years ago, and was found to be gluten-sensitive.)

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    Guest Michael

    Posted

    Jefferson, where in the world are you getting this bogus idea that NCGS is not hereditary? Dr. Kenneth Fine identified all but one HLA-DQB Gene to be a risk for gluten sensitivity a long time ago. Dr. Marios Hadjivassiliou identified DQ2, DQ8, DQ5 and DQ6 to be a genetic risk for gluten ataxia, and Dr. Tom O'Bryan has said that 40-50% of those with DQ2 and DQ8 have non-celiac gluten sensitivity. Not only that, but Dr. Hadjivassiliou says that the vast majority of those with celiac disease have symptoms of ataxia, and most of those with gluten ataxia do not have enteropathy(celiac disease). So it looks to me like heredity has even more of an influence on NCGS than celiac disease. Furthermore, DQ2 and DQ8 are a genetic risk for type I diabetes, and the most common DQB haplotypes among Caucasian Americans, the most common among celiacs, DQB 02 01, and the gluten ataxia gene DQB06 02, have been identified by researchers as Multiple Sclerosis genes. I met a woman of 35 years who had her MS in remission for 12 years on a gluten-free diet, and Dr. O'Bryan has talked about a young boy who had his type I diabetes in remission on a gluten-free diet.

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    Due to the complexity of diagnosing celiac, I wonder how many people like my adult children and myself started and maintained gluten-free diets without any diagnosis? It has changed our lives immensely, especially after years of IBS misdiagnoses. Once we tried a gluten-free diet, there was no turning back (i.e. eating gluten in order to be tested), because we finally felt normal! So, are we celiac or NCGS? If it's true that NCGS is not hereditary, then we must be celiac(?). We'll never know unless better diagnostic testing (without having to eat gluten) becomes available. Meanwhile, we now live much healthier lives since going gluten-free, no matter the medical label. But we've found others are much more accommodating if we just say we're celiac.

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    Last summer I had a confirmed case of Colengeneous Colitis. I was tested for Celiac and test came back negative. After my treatment many foods made me sick. My GI doctor advised me to try the LoFodmap diet ( gluten free) and I felt 100 times better

    overnight. I'm so confused and am not sure if it is just a wheat allergy or the Gluten test was a false negative. All I know for sure is that I feel better. My GERD that has caused years of pain is also gone. Any advice would be appreciated.

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    Guest Andrea

    Posted

    I have been diagnosed with NCGS after many years of not knowing what was causing a severe abdominal distention and bloated to the point of upon a reaction I couldn't button the same pants i fit comfortably in minutes before. About six months ago they diagnosed me with SIBO ( small intestinal bacteria overgrowth). The tiniest amount of gluten causes this. With trial and error I react to certified gluten free which is 10ppm so I maintain a strict diet of fresh fruits and vegetables and meats and seafood. I cannot eat at any restaurant which makes life a bit difficult in this day and age. I wonder if anyone else is so sensitive to gluten.

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    Guest irahappy1

    Posted

    25 years ago my mother nearly died. She was being fed intravenously and had constant diarrhea. A young woman doctor finally took a look at her and realized it was gluten. She's still alive and sassy.

    The doctor suggested that anyone in our family who had intestinal issues should try going gluten free for at least a year. Many of us did, and most all our family are gluten free now. Point is, we don't need to go to a bunch of doctors and get a bunch of tests to "prove" we have celiac disease or an allergy or whatever. We just quit eating gluten and we are all healthier because of it. It's a simple diet change. Just do it and move on.

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    Guest Louise

    Posted

    I agree with those who say NCGS can be or is hereditary - we have some 4 generations of NCGS in our family - some, like myself, three of my cousins and one of my aunts from infancy, others late-onselt!

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    Guest Jefferson Adams

    Posted

    Jefferson, where in the world are you getting this bogus idea that NCGS is not hereditary? Dr. Kenneth Fine identified all but one HLA-DQB Gene to be a risk for gluten sensitivity a long time ago. Dr. Marios Hadjivassiliou identified DQ2, DQ8, DQ5 and DQ6 to be a genetic risk for gluten ataxia, and Dr. Tom O'Bryan has said that 40-50% of those with DQ2 and DQ8 have non-celiac gluten sensitivity. Not only that, but Dr. Hadjivassiliou says that the vast majority of those with celiac disease have symptoms of ataxia, and most of those with gluten ataxia do not have enteropathy(celiac disease). So it looks to me like heredity has even more of an influence on NCGS than celiac disease. Furthermore, DQ2 and DQ8 are a genetic risk for type I diabetes, and the most common DQB haplotypes among Caucasian Americans, the most common among celiacs, DQB 02 01, and the gluten ataxia gene DQB06 02, have been identified by researchers as Multiple Sclerosis genes. I met a woman of 35 years who had her MS in remission for 12 years on a gluten-free diet, and Dr. O'Bryan has talked about a young boy who had his type I diabetes in remission on a gluten-free diet.

    The status of NCGS is still being debated and studied by research professionals. There is no consensus about the exact nature of the condition, and certainly no consensus or solid proof that the condition is hereditary.

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    Guest Peggy

    Posted

    Due to the complexity of diagnosing celiac, I wonder how many people like my adult children and myself started and maintained gluten-free diets without any diagnosis? It has changed our lives immensely, especially after years of IBS misdiagnoses. Once we tried a gluten-free diet, there was no turning back (i.e. eating gluten in order to be tested), because we finally felt normal! So, are we celiac or NCGS? If it's true that NCGS is not hereditary, then we must be celiac(?). We'll never know unless better diagnostic testing (without having to eat gluten) becomes available. Meanwhile, we now live much healthier lives since going gluten-free, no matter the medical label. But we've found others are much more accommodating if we just say we're celiac.

    I too went to a gluten-free diet because my Dr. did not find anything. I was so sick with intestinal problems and they cleared up when I went on it. To me, it's the healthiest diet a person could be on. I will never go back to eating those things again. I actually feel sorry for people eating that stuff!!

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    Guest Christine

    Posted

    My 14 year old son suffers from a rare childhood auto-inflammatory disease. Cleveland Clinic recommended diet change after med to stop inflammation was not helping enough. He went on gluten and initially dairy free diet and basically gained weight, was no longer ill and disease symptoms became silent to the point of stopping his medication. Since he was very ill since age 3 with this problem and his response to the diet so extreme, I became convinced he might have celiac disease. Turns out he does not have the genes. (He did have 2 pits in his teeth, low vit D., elev. liver enzymes (possibly from meds), and was in 23% for wight, had mouth sores as child, and itchy rash with flares.) The kicker, his dad and little sister do! Dad confirmed 100% endoscopy, and sister also confirmed at six years old (blood tests and endoscopy). She was also anemic, and had muscle and bone loss. One more twist, I also do not have the genes, but have NCGS. I first went gluten free just to support my son and was shocked when my hand/joint problem of more than a decade resolved. I had significant numbness/tingling in bilateral hands/forearms esp. at night. I would sometimes wake with my hands in a tight fist and they would be very stiff and painful. I also had some episodes of extreme fatigue, few mouth sores, and mild redness on my chest and checks. On the bright side, with my NCGS, I personally am very sensitive to gluten. I know before my husband (true celiac) if we are glutened. My hand symptoms tell me along with some GI reassurance and then many hours later my husband will have GI distress and stomach pain. Makes one wonder celiac disease + NCGS parent = Child with rare auto-inflammatory disease.

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    Guest Cherri Nelson

    Posted

    Great article! It confirms the struggle with or lack of being able to be diagnosed, I feel some relief at being vindicated. But I'm not going to rely on diagnostics anyway. I go into painful IBS if I eat gluten, pure & simple, as well as anxiety and brain fog, so pain is a powerful deterrent.

    I do wonder about NCGS (also referred to as gluten enteropathy) not being related to Celiac! Studies I read about from Europe have stated that siblings of a celiac sometime in their lives usually have or discover having NCGS. I was pretty stunned to realize that a problem I always thought was my sisters (who almost died as a baby before a celiac diagnosis), was also mine, at it seemed to affect me also.

    It's been difficult to get my primary doctors at Kaiser to accept my gluten sensitivity because I was never tested. Some have and some roll their eyes. My primary Doc accepted my gluten sensitivity and listed it in my chart thank goodness. I had fears of ending up in the hospital and not being able to eat the food. It's awe inspiring and confusing to me that when my doctors clearly see the lack of IBS, anxiety & panic attacks and regular gut movements now that they wouldn't be supportive. A real head scratcher!

    It's a little disappointing also though. Because sometimes I don't want to put up with the 'eye rolling, it's a fad' attitude and just say I have celiac. That's accepted. I don't like fibbing however. Oh well!

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    25 years ago my mother nearly died. She was being fed intravenously and had constant diarrhea. A young woman doctor finally took a look at her and realized it was gluten. She's still alive and sassy.

    The doctor suggested that anyone in our family who had intestinal issues should try going gluten free for at least a year. Many of us did, and most all our family are gluten free now. Point is, we don't need to go to a bunch of doctors and get a bunch of tests to "prove" we have celiac disease or an allergy or whatever. We just quit eating gluten and we are all healthier because of it. It's a simple diet change. Just do it and move on.

    Brilliant! I agree!

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  • About Me

    Jefferson Adams is a freelance writer living in San Francisco. He has covered Health News for Examiner.com, and provided health and medical content for Sharecare.com. His work has appeared in Antioch Review, Blue Mesa Review, CALIBAN, Hayden's Ferry Review, Huffington Post, the Mississippi Review, and Slate, among others.

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