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    Katie82's Avatar
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    Celiac Disease testing?

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    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?.

    Thanks!

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    Owly's Avatar
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    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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    Melody's Avatar
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    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.

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    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.

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    Katie82's Avatar
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    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.

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    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.

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    shannon's Avatar
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    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

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    periquin's Avatar
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    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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    Maro's Avatar
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    Quote 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.

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    shannon's Avatar
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    Quote 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

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