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Thread: Celiac Disease testing? page 2

  1. #11
    FairyRae's Avatar
    FairyRae is offline Senior Member
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    I've heard there is a celiac gene test--it doesn't test whether or not you have celiac, but whether or not it's possible for you to have celiac, genetically. I don't think you need to eat gluten first either.

    Here is more info: http://www.celiac.com/articles/21567...ing/Page1.html

    Genetic testing can help determine your risk as well as your children's risk.

    Celiac genetic tests can be done on blood or a mouth swab sample but your doctor may be unaware of the tests, not know how to order them, or know how to interpret the results.

    Genetic testing is not affected by diet. You can be eating gluten or on a gluten free diet. Blood tests for celiac disease antibodies, however, need to be done while eating gluten. They can become negative within a few weeks of restricting gluten so if you are going to get the diagnostic antibody blood tests don't begin a gluten free or restricted diet before being tested.
    HTH!

  2. #12
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    My youngest DD and myself are very intolerant to gluten. While we do eat it from time to time, it always causes some issue. I may end up with chills, cramps and the dreaded D. My DD usually just ends up on the toilet a couple of times and she's fine. We both tested negative for celiac, but the docs said that the test are not always accurate and being that our symptoms go away with elimination of gluten to stick to gluten free. I believe my gallstones were attributed to gluten along with high cholesterol and high triglycerides (on previous whole wheat, low fat healthy diet). Drop the grains/gluten everything normalizes. Anyway, many docs will not advise going back on gluten just for performing the test (a test that has high false negatives) and will diagnose you based on your history and dietary improvement.

    Anyway, my next statement is concerning insurance. You should really consider whether or not you really want this as a medical diagnosis on your record. Many insurances will deny you or have huge increases in your premiums for such a condition. My sister has ulcerative colitis and she can not get insurance with many companies. She found one that would accept her at a very high cost. Hope this does not rub anyone the wrong way. Just trying to inform that many people have had to weigh the benefits of diagnosis for a condition that has a very easy self-directed treatment. IF you needed medicine or other medical care outside of dietary restrictions, then obviously you would go for diagnosis. I'm not knocking insurance, just want to bring this up as it can be a huge issue for some people.

  3. #13
    Minxxa's Avatar
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    I just want to second what mamaB said about insurance. Most insurance companies will deny you if you are on two medications. That could be birth control pills and an allergy medicine. My good friend was denied for years and couldn't get ANY insurance, even though she and her hubs made about $400K/year combined. Because she takes two allergy medicines.

    She even offered to pay 4 times the amount per month. They said no.

    I only bring it up because I had no idea they could do that for something so minor... and I'm thinking many other people don't know that either...
    "Boy I got vision and the rest of the world is wearing bifocals" - Butch Cassidy and the Sundance Kid

  4. #14
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    Got to second everyone here. I was tested for celiac after crippling bouts of D for almost a year. No celiac, but when I went off gluten (not grains entirely, just the gluten) I found a thousand times better. And going off grains eliminated the D entirely. So I may have celiac -- or not. Who cares? There's no medicine for it, and no reason to have it on your medical record. If eating this way helps, just go for it.

  5. #15
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    FairyRae, thanks! I am considering that test but it is $325 and not covered by most insurance companies. The insurance I'm getting is pretty good though so I will ask my futute doc if they can get it covered.
    About having Celiac on my medical record, I could care less now since I'm covered. But, while uninsured I had considered going to docs for tests and paying out of pocket and kept deciding not to because of exactly what you two said. I know any disease on my record would make it near impossible to get future insurance. The insurance I'm getting is actually a state program because in CT I foud out you can get insurance regardless of income or pre-existing conditions. So while we are above the top income bracket for any reduced rate we can still get the insurance and pay out the the top rate (it's not that bad) and they can't drop me in the future! so I'm pretty fine with any testing now, it's all good.
    Anyway, I did decide NOT to go ahead with toturing myself. Actually, I did eat gluten for the last 3 days and I am in so much freaking pain, GI issues galore and some other lovely symptoms.... I had been on an elimination type diet for a couple months and I didn't realize that even though I still was experiencing pain and fatigue it wasn't as bad as it used to be so even though I really would like the diagnosis, you all are so right. It is not worth it just for the possibility of the test coming up accurate and there's no guarantee that it would so screw it! I would rather spend the next month getting better, not worse. My doctor is just going to have to believe me about this and if they insist on testing I will find another doctor!
    The main reason I wanted this was to show my family (all who suffer from autoimmune diseases) that we should all be cautious w/ gluten because I don't see them getting it unless a doctor says it. I was trying to be the guinea pig for everyone but even that is not worth it. I'm going to try to convince my sister, who has type 1 diabetes and can't keep weight on herself to save her life to get a celiac panel since she basically lives on wheat. Maybe...
    Thanks guys, I'm done being really dumb for now....
    Last edited by Katie82; 08-30-2010 at 09:04 AM.

  6. #16
    Barb's Avatar
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    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.

  7. #17
    Isfahel's Avatar
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    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

  8. #18
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    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.

  9. #19
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    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.

  10. #20
    Isfahel's Avatar
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    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.

    Quote 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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