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Celiac Disease testing?

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  • Celiac Disease testing?

    I just got approved for health insurance that will start on Oct 1st. I really want to get tested for Celiac but I don't want to have to be eating gluten to get a proper diagnosis because of the havoc it wreaks w/ me when I eat it (duh). So, do you have to be eating gluten at the time of the test?. Are there certain tests they can do that are accurate even on a gluten free diet?.


  • #2
    You have to be eating gluten for the blood test. I think the biopsy will show the damaged villi if you have not been gluten free for very long, but after a while, the digestive system does heal. My GP was fine with doing neither because I also had dermatitis herpetiformis, and eating gluten free cleared up the skin issue along with a number of other symptoms (fatigue, joint pain, digestive problems, etc.).
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    • #3
      Why are you wanting to test? It has a lot of false negatives. We elected to not test my kids because gluten hurts them so much, not worth it to give it to them just for a formal confirmation Of something we already know.


      • #4
        I agree with Melody...why do you need the test if you know you have issues? I took the IgA test only to test negative because I likely don't make the antibody they were testing for. I chose to just go gluten-free because my body told me what I needed to know. Having an "official" diagnosis doesn't provide any benefit anyways.

        And as for testing after you've already been gluten free for awhile...most physicians recommend being on a minimal amount (something like two slices of bread daily) for around 6 weeks prior to testing.


        • #5
          Well, I know that I'm gluten intolerant (aren't we all though) but being intolerant to gluten is a whole lot different than having Celiac in the way you have to live your life, how careful you have to be eating out, etc. If I have Celiac then I have to eliminate gluten 100% for every meal, every day for the rest of my life and I'm only 28 so I think it would be a good thing to know now, no? In the grand scheme of things having to eat gluten for a little while to get accurate results would be worth it for myself and my children. If I can avoid it I will, I've been reading today that there is genetic testing but that also is not 100%....

          I also have a myriad of symptoms that may be explained by Celiac Disease and it would be an extremely useful thing to know in figuring out the cause of my health issues. I know there are false negatives and I plan on avoiding gluten regardless of the results but I need to know just how important it is to avoid every single morsel of anything that may contain gluten F O R E V E R.
          Chances are once my doctor hears all of my symptoms and family history they will want the tests done whether I ask or not so I'm just trying to educate myself about the testing.


          • #6
            I'm 25 and have been weighing the pros and cons of this test. I'm a believer in modern medicine when taken with a grain of salt (my parents are both in the medical profession, so I trust doctors but know they're not infallible). Three weeks ago, I decided to go back on gluten to get the test. I figured, if I'm gonna do it, why not enjoy it? so I had a cinnamon bun. BAD idea. I was crippled by the cramps and D for about 12 hours. My skin didn't recover for a week (redness and zits). Given that you must consume gluten for 4 weeks prior to testing and I'm in grad school, I decided to work under the assumption I have celiac. I may get the gene test someday, but I'm not in a hurry. Since watching more carefully I've discovered that what I thought was IBS is really small amounts of gluten (And before that, it was dairy too, but since going primal I've healed and no longer have ill effects from dairy).

            Gluten free is the way to be.


            • #7
              my hub was tested and it came back negative, i am 98% sure that's bologna! just avoid it if it makes ya feel bad.
              Red meat is not bad for you. Now blue-green meat, that's bad for you! ~Tommy Smothers


              • #8
                Before you go for this test, check the accuracy of a test for celiac. I have a feeling that you will find that there isn't any. Live without gluten and if it feels good keep it up. It it feels better than before, than say, "I guess I was living under the curse of celiac."

                Your history of symptoms and signs, etc. plus how you feel living gluten free will tell you more than the test will.
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                • #9
                  Originally posted by periquin View Post
                  Before you go for this test, check the accuracy of a test for celiac. I have a feeling that you will find that there isn't any. Live without gluten and if it feels good keep it up. It it feels better than before, than say, "I guess I was living under the curse of celiac."

                  Your history of symptoms and signs, etc. plus how you feel living gluten free will tell you more than the test will.
                  Unless you're a doctor, you don't have any call to give that kind of advice.


                  • #10
                    Originally posted by Maro View Post
                    Unless you're a doctor, you don't have any call to give that kind of advice.
                    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;-)
                    Red meat is not bad for you. Now blue-green meat, that's bad for you! ~Tommy Smothers


                    • #11
                      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:

                      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.
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                      • #12
                        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.


                        • #13
                          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...
                          sigpic "Boy I got vision and the rest of the world is wearing bifocals" - Butch Cassidy and the Sundance Kid


                          • #14
                            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.
                            29 years old, type 1 diabetic with insulin resistance -- HORRIBLE a1c, and borderline cholesterol problems. Carb addict.


                            • #15
                              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, 09:04 AM.