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Celiac Disease testing?

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  • #16
    You definitely have to be eating gluten for a blood test to to show the presence of antibodies to it. If it isn't in your system, your body ceases making detectable levels of antibodies. The other, more definitive test for celiac disease is an intestinal biopsy which they examine for evidence of damage to the intestinal villi. This is the "gold standard" test for celiac.

    Now, ceilac disease - which causes intestinal damage - is only ONE form of gluten intolerance. You acan have antibodies but no intestinal damage. The damage may be occurring in other parts of the body. Many types of autoimmune disorders are linked to gluten intolerance. See the book "Healthier Without Wheat" for a very complete explanation of how this all works and the differentiation between celiac and gluten intolerance.

    I would take to heart other people's comments about being wary of having a medical diagnosis such as celiac disease entered into your official medical record. Since the ONLY treatment for this disease is avoidance of gluten - there are no medications to take that insurance might pay for - there is no real benefit to you to seek out an official diagnosis. You can figure out for yourself exactly how careful you need to be in eliminating gluten by doing your own little challenges with things like some soy sauce made with a little wheat in it or some gravy thickened with wheat flour. Do you develop any intestinal distress? What can you tolerate? The management of gluten intolerances of any kind are entirely up to each individual. And since you already know you don't tolerate gluten in what is consdiered normal, everyday amounts - why put yourself through eating THATjust to get tested to see if are officially intolerant?

    I am a nurse, and in medicine before performing any kind of lab test or pricedure we ask "are we going to do anything different based on the results of this test?" "Are the results of this going to change our treatment plan in any way?" If not, then don't do the test or procedure. It is much more important to listen to your body and your symptoms than numbers on a piece of paper. Your body will tell you if you can ever have any gluten EVER, that lab test WON'T.

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    • #17
      My daughter is gluten intolerant, her dr says if she does fine without gluten and has symptoms with gluten that's good enough and don't worry about tests. My sister and my mother are also undiagnosed gluten intolerant and I know there is a strong genetic link. I was planning on getting tested in January because I can get on my husband's work insurance then... I had been eating wheat regularly, but I just decided to go 100% primal and so now I'm not sure what to do. Lol, hate to eat wheat for long enough to get tested now, I guess I'll see where I am at the end of the year. Oh, and I've heard great things about the genetic test, you don't have to be eating gluten to get an accurate diagnosis, but it's out of pocket and about $300

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      • #18
        I would just like to comment on the advice about not "being a doctor."

        Most doctors I've talked to about food sensitivities advise doing 'food elimination' on my own rather than getting formally tested--the advice that many posters have given OP. I originally did the elimination process with eggs and fortunately, I have no problems.

        I have Hashimoto's, and there's a high chance that I'm gluten sensitive or intolerant, but eating low carb, I had very little gluten. So I eliminated it totally for a month, and then at dinner at an Indian restaurant, I had a lot of their warm, fresh, delicious bread. The reaction was obvious and fairly quick (I got home, fortunately). I tried it a second time with much less gluten and had a milder reaction--but a clear one.

        I did the same a few months later with dairy.

        As far as I'm concerned I'm 'sensitive' to both.

        That was about 8 months ago, and I've never felt better after eliminating them from my diet.

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        • #19
          At my physical today, my doctor told me that I do not have to be eating grains or gluten foods in order to test positive for celiac issues. I told him I have been off grains for almost six months. He is going to run my labs for it anyway just to see what comes up. I am interested to see the results. Regardless, I won't be going back to grains anytime soon.

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          • #20
            Please let us know what results you get, I would say your Dr hasn't a clue and is wrong... Because my daughter's Dr told us the same thing when he drew blood on her for the test a couple years back and we learned later that he was wrong so the resulting negative is probably inaccurate.

            Originally posted by john_e_turner_ii View Post
            At my physical today, my doctor told me that I do not have to be eating grains or gluten foods in order to test positive for celiac issues. I told him I have been off grains for almost six months. He is going to run my labs for it anyway just to see what comes up. I am interested to see the results. Regardless, I won't be going back to grains anytime soon.

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            • #21
              Originally posted by john_e_turner_ii View Post
              At my physical today, my doctor told me that I do not have to be eating grains or gluten foods in order to test positive for celiac issues. I told him I have been off grains for almost six months. He is going to run my labs for it anyway just to see what comes up. I am interested to see the results. Regardless, I won't be going back to grains anytime soon.
              Unfortunately a lot of docs are not that aware of these conditions and the tests that diagnose them. General practitioners are the worst, but they have to deal with so much and being an expert on everything is impossible. I repeatedly have to specify what thyroid tests I need to have done, otherwise they just order the ones that are not going to show Hashimoto's. In order to for the celiac blood test to show anything you must have been consuming regular amounts of gluten. Your body produces antibodies to deal with the offending gluten...without the gluten the body has no need to produce the antibodies. You definitely will not test positive, even if you are celiac, being that you've been off gluten for six months.

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              • #22
                Originally posted by shannon View Post
                hey, if her symptoms vanish she has her answer. a lot of tests produce false negatives and even false positives. take for instance thyroid testing...complete b.s. some will get the right answer if they're lucky. i'm not a doctor but i play one on mda LOL;-)
                I speak as someone who has had Coeliac tests and Gluten Intolerance tests. As it turns out, I'm mildly gluten intolerant.

                The fact is that they are two different things - it's hubristic in the extreme to say that doctor's don't know what they are talking about. You are not aware of other, underlying conditions that may be present.

                There is a lot of good advice on here but some amount of quackery as well.

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                • #23
                  My son has had a test that test for 95 food allergies and ciliac's...
                  he had not eaten gluten or grains for almost 6 months when they tested.
                  Tested positive for ciliac and 78 out of the 96 tested positive. he was 16 then and
                  about 35 out of the 96 foods he tested positive for he had never tasted or eaten in his life...
                  Igg and IGA positive across the board.

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                  • #24
                    Went to my gastroenterologist (mayo clinic) after being off grains, and reported my good results. He drew blood as a test for celiac, which resulted negative, but only has a 90% sensitivity rate. He offered a biopsy, but told me I would have to eat a SAD diet for six months first. I declined, and he agreed with my decision.

                    in medicine before performing any kind of lab test or pricedure we ask "are we going to do anything different based on the results of this test?" "Are the results of this going to change our treatment plan in any way?" If not, then don't do the test or procedure
                    We do?
                    Last edited by Lojasmo; 08-31-2010, 04:22 AM.

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                    • #25
                      Originally posted by Maro View Post
                      I speak as someone who has had Coeliac tests and Gluten Intolerance tests. As it turns out, I'm mildly gluten intolerant.

                      The fact is that they are two different things - it's hubristic in the extreme to say that doctor's don't know what they are talking about. You are not aware of other, underlying conditions that may be present.

                      There is a lot of good advice on here but some amount of quackery as well.
                      tests aren't always reliable. my husband and i are absolutely intolerant and his test came back negative. how could that be? your body's reaction is always the best 'test' imo
                      Red meat is not bad for you. Now blue-green meat, that's bad for you! ~Tommy Smothers

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                      • #26
                        As someone who has been gluten free for 7 and a half years, I am a big advocate of getting tested. I wish I knew whether I have Celiac Disease or that I'm 'just' gluten intolerant. I've finally just this summer started saying I have celiac based on the fact that my dad *did* test positive for celiac, which means with my improvement on a gluten free diet, that I too likely have celiac. The difference? Celiac is an autoimmune disease that if I eat gluten, my body WILL react to, whether I exhibit symptoms or not. With gluten intolerance, there's a bit of a difference and the research is still not conclusive on what long term effects there are from continued consumption of gluten. But research does show that if you have celiac, and you continually consume gluten you have significantly increased odds of many other issues (certain cancers and autoimmune diseases). And I'm not talking about a lot of gluten, but low level cross contamination, you set your body up for more problems.
                        If you are already GF, then I wouldn't suggest going back to eating gluten, I know for me that would be pure tasty torture. But I still wish I knew for sure for the sake of my long term health.

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                        • #27
                          You do have to be eating gluten regularly before you take the test; some people say you should be eating gluten for 3-4 weeks steadily before testing. Your body has to have time to react and circulate the antibodies around your bloodstream for them to be detected in the blood tests. One of the tests for celiac (after blood work and biopsy) is a reversal of symptoms after going on a gluten-free diet. So if you don't want to go through the full process of testing and you're pretty sure you want to be gluten-free anyway, you could always just go gf and be better already.

                          As I see it, there are only two drawbacks to not having the full range of testing done, including biopsy. The first drawback is that most doctors will never take you seriously if you didn't have a positive biopsy (even though in my opinion the biopsy is not the gold standard test they make it out to be since damage in the small intestine can be spotty and might be missed during biopsy). I myself am celiac and was diagnosed with bloodwork and complete reversal of symptoms after going gf. I opted not to do the biopsy because I didn't see the point and I also couldn't handle another scope down the throat procedure. When my daughter was diagnosed, we did the same thing - bloodwork and complete disappearance of symptoms after going gluten-free. I should also add - we both get very sick when we accidentally eat gluten; that's the second part of the diet test. But doctors are always giving us a hard time because we didn't get biopsied. It doesn't change the fact they we do have celiac, but it is a nuisance and I get tired of the argument.

                          The second drawback to not being properly tested is that you will never know if you are simply gluten intolerant or true celiac. The difference is that a gluten intolerant person just has to avoid the major sources of gluten but does not have to worry so much about microscopic amounts of cross-contamination. A celiac does have to watch out for that, and it makes life (especially social life) exponentially more challenging. You also can't judge whether it's affecting you simply based on symptoms. Celiac manifests itself in different ways even in the same person, and your body may experience damage from gluten ingestion without any outward symptoms. So you may always wonder if you truly have celiac or not.

                          All that being said, I think the tests currently available give quite a few false negatives and are not always as reliable as your own physical experience. As I said, I chose not to have a biopsy and I don't regret that decision even though it has caused me some headaches when dealing with the medical community. Sorry for the long post but people hardly ever want to talk about things celiac and I guess I just had to get it off my chest!

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