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  • Tina Turbin
    Tina Turbin

    Blood Testing for Celiac Disease Isn't Very Accurate

    Reviewed and edited by a celiac disease expert.

    This article originally appeared in the Autumn 2010 edition of Journal of Gluten Sensitivity.

    Celiac.com 01/10/2011 - As an author, researcher, and gluten-free advocate, I work hard to raise awareness for celiac disease and gluten issues, particularly when it comes to increasing the diagnosis rate. Part and parcel of improving diagnosis is proper testing. Evidence is mounting that indicates that blood testing may not be the most effective way to test for celiac disease, and I would recommend that people who suspect they have celiac disease to check with their doctors about other testing options.

    Celiac disease, which is essentially an autoimmune reaction to gluten, a protein found in wheat, barley, and rye, affects approximately three million Americans, but according to estimates, only three percent of them have been properly diagnosed with the disease. Once celiac disease is diagnosed, treatment is simple—following a gluten-free diet. With so many American celiacs going without a diagnosis,  this painful and potentially fatal autoimmune disorder, with its easy method of treatment, attention needs to be focused on effective, efficient testing.

    Although awareness of celiac disease and gluten-free living is increasing in the various medical fields, accurate and reliable testing has not been definitively tackled or uniformly implemented by medical practitioners. Currently a popular method of testing is a blood test, but some people with celiac disease can get blood testing many times and the results will nevertheless be negative.

    Although blood testing has been successful in diagnosing some people with celiac disease, this method is inaccurate at least 80 percent of the time, according to Dr. Datis Kharrazian, Blood Chemistry Seminar instructor and the formulator for Apex Energetics, Inc. supplements. To understand how blood testing works, a basic grasp of the workings of the immune system is essential. Antibodies are part of the immune system and designed to attack specific antigens, or invaders, of the body. Tests can be conducted that find an increase of antibodies in the system, which are on the prowl for certain foreign invaders. Specifically, anti-gliadin, or anti-gluten antibodies, can be tested for; when these exist in the system in large amounts, it is a sign of the autoimmune disorder, celiac disease. Although this may sound workable in theory, in practice blood testing is insufficient and inaccurate due to the fact that the autoimmune response doesn’t occur in the blood stream, but in the small intestine, as the immune system attacks this organ’s absorptive finger-like structures called villi which line the inside. Thus, for the sake of reliability, this suggests that testing should be focused on the gut.

    So what method can we turn to? Fortunately, there is another method apart from an intestinal biopsy, which is an invasive as well as expensive procedure. It turns out that the immune cells which surround the gut also can be located in large numbers in the stool, making a stool anti-gliadin antibody test a reliable alternative to blood testing.

    Stool testing may be more accurate than blood testing and is more convenient. One doesn’t need a doctor’s prescription for the test, which can be conducted in the privacy of one’s own home with an online-ordered kit from EnteroLab, which according to its website, is “a registered and fully accredited clinical laboratory specializing in the analysis of intestinal specimens for food sensitivities.”

    Enterolab offers the Anti-Gliadin Antibodies Stool Test as well as additional tests which can be ordered may be important diagnostic tools for people who have celiac disease or gluten-sensitivity. These additional tests include the Tissue Transglutaminase Stool Test, which tests whether gluten is actively attacking the intestine and other tissues, the Malabsorption Test, used to determine whether the intestine is malabsorbing nutrients due to the autoimmune reaction to gluten, or the Celiac and Gluten-Sensitivity Gene Test. The lab also offers a Milk Sensitivity Test, which tests for reactions to casein, a milk protein

    With millions of celiac Americans living with their disease undiagnosed, we can’t afford to waste time with inaccurate and inefficient testing. The anti-gliadin antibodies stool test, so easily available to the public, is a great stride forward for the celiac community.

    Talk with your health care provider today about this alternative to celiac blood testing.


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    All the "scientific evidence" comes from companies who market products like supplements and other nontraditional treatments, such as Apex Energetics and EnteroLab. Celiac.com should weed out such marketing efforts that are posing as objective science.

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    Ms. Trubin displays a dismally poor grasp of human anatomy and autoimmune response. Based on her logic, there could be no grounds for the correlation between celiac disease and Hashimoto's Thyroiditis. And yet there is such a correlation, just as there is a correlation between celiac disease and lymphoma. Why? Because - contrary to Ms. Turbin's assertion that celiac all happens in the gut - Celiac is a systemic disease that involves complex processes all over the body. Those processes entail the communication of antibodies throughout the body via the blood stream. While it is true old methods of blood testing were not as reliable, there are labs that have developed highly accurate blood and saliva tests both for celiac antibody and genetic testing. Among these are Prometheus Lab based in San Diego, and Kimball Genetics in Denver. Both use the most advanced testing available for celiac disease available today. And both now offer cheek swab testing which can be done at home.

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    As far as I know, NO medical community agrees with stool testing as having any indication to suggest celiac disease. Furthermore, many people can have positive anti-gliadin antibodies and NOT have Celiac. Anti-gliadin is false positive in many subgroups of people, hence why it is not usually used anymore to diagnose celiac. Stool antibodies are even less specific as far as I know. Enterolab has not ever released its work for peer review, so there is little data to say stool testing means anything other then your immune system has simply had exposure to the food protein in question and remembers it. It may or may not mean anything. I do think the article raises some good questions, though.

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    I also wanted to add that EMA blood testing is almost 100% specific for Celiac (although not quite that sensitive), so it is very accurate in that regard. Mayo Clinic now also uses a form of an IgG anti-gliadin test and/or another test they designed (I forget the name) which is more specific than the IgA anti-gliadin test, which often is not accurate. Some Drs still use TTG as well. Regardless, a biopsy is still usually considered the standard for testing, along with blood work and clinical symptoms (if any). Genetic testing can be done as well, which doesn't prove Celiac on its own, but if negative can virtually rule it out. Non-Celiac gluten sensitivity is a whole different condition it seems, so most of those cases would likely test negative to all current Celiac testing, including blood work. Bottom line, if you think you truly have Celiac, it's crucial to have an official diagnosis on your chart. You don't want to be fed gluten in the hospital while recovering from surgery for example. Unfortunately, only blood work combined with a biopsy can offer that at this time. Don't waste your money elsewhere.

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    Forget the blood test, save your money for Enterolab. I see 5-10 people everyday at my gluten free bakery that had a positive biopsy but negative blood test. The blood test is a crime sending patients out the door with a 80% false reading to then later develop an irreversible life threatening disease(s). Many scientifc papers and real life people prove the blood test is "old school".

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    Although I can't verify the veracity of Enterolab, I do know that my blood work has been frustratingly negative. I've known I had Celiac for 10 years, I've been tested twice: both negative. I do an elimination diet and within days I am a different person. With a diagnosis I would have much more credibility, but I have determined to live my life gluten-free like I know I should. It is unfortunate we don't have a basic standard we can all agree on.

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    Is this really an autoimmune disease? The immune system attacks the gluten which is not auto (one self) and the damage to the villi is collateral damage.

    I'm just asking as I have never seen gluten intolerance being described as an autoimmune disease, although I understand it can be a starting point for one.

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    I am impressed that many of you can see the marketing (how can I make more money) off this scientific data. The Pharma Giants do this to the doctors as well in 1 hour meetings by sales people with lovely personalities. The result...no one ever really gets WELL. But hey...more money is floating around out there in the market right? Money is what makes the world go around right? Mmmmmmm mmm...LOVE THAT MONEY

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    Is this really an autoimmune disease? The immune system attacks the gluten which is not auto (one self) and the damage to the villi is collateral damage.

    I'm just asking as I have never seen gluten intolerance being described as an autoimmune disease, although I understand it can be a starting point for one.

    It is an autoimmune disorder, yes. The immune system does not attack the gluten, it directly attacks the lining of the small intestine. Gluten intolerance is different than celiac disease, and is not an autoimmune disorder.

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    Although I am typically skeptical of less-accepted resources, I'd say that this article is spot-on. I tested negative for celiac disease for 8 years. I was severely ill, had multiple vitamin deficiencies, yet always tested negative. Finally, after another bout of severe illness, I tested positive. Funnily enough, my gastroenterologist knew that the test results weren't accurate, and knew to keep retesting me for it.

     

    My biopsy, however, was negative. But it was then I learned that due to the endoscopy's limited ability to reach even most of the intestine, the results of biopsy are actually a) positive or B) inconclusive; as opposed to positive or negative. My gastroenterologist made the diagnosis based on a positive blood test, vitamin b12 deficiency and a positive reaction to the gluten free diet.

     

    Yet what happened during those 8 years? There are many theories as to why blood tests are inaccurate, and I'd say the theory presented in this article is the best theory: the antibodies measured in testing only measure antibodies in the blood stream, not the digestive tract.

     

    If you are looking for a more acceptable resource, then look no further than the British Medical Journal and a study written back in the 70s about antibodies in the gut, and the lack of reliability of testing, and which suggests that there is more reliability from testing conducted on feces and saliva. Because URLs are no allowed in comments, evidently, please Google "The demonstration and function of antibodies in the intestinal tract."

     

    I'd personally say save your money and get genetic testing, vitamin/mineral testing, and try the gluten free diet. I'd even bet that many people with supposed "gluten intolerance" actually have celiac disease, but had negative test results.

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  • About Me

    Tina Turbin is a world-renowned Celiac advocate who researches, writes, and consults about the benefits of the gluten-free, paleo-ish, low carb and keto diets, and is a full time recipe developer and founder of PaleOmazing.com. Tina also founded and manages the popular website, GlutenFreeHelp.info, voted the #2 .info website in the world. Tina believes that celiacs need to be educated to be able to make informed decisions and that Paleo needs to be tailored to the individual’s physiology to obtain desired results. You can reach her at: INFO@PaleOmazing.com.

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