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another question about celiac testing and gluten free

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  • another question about celiac testing and gluten free

    Hi all,

    Getting a celiac biopsy tomorrow after almost a month of gluten-free primal (except for two beers, some Korean chili paste, and some potentially "cross reactive" coffee). Didn't eat much gluten for 3 months before that, although definitely 3-4 beers a week, daily oats, and small portions of wheat, rye, or spelt a few times each week. I'm a little worried that I haven't had enough gluten to smash these villi.

    The new doctor wasn't excited to hear that I'd gone gluten-free on my own, so he scheduled the test asap. I loaded up on bread yesterday and today in preparation, which made me miserable (fatigue, pain, b-l-o-a-t-i-n-g), although lord knows whether that's from gluten or just the carbs.

    I'm wondering whether anybody here got a biopsy done after going primal short-term? Any false negatives that later became positives?


  • #2
    Do you need the official diagnosis? I used to think I needed the official "you have celiac disease" diagnosis from the doctor so I could explain my way of eating to my family. It turns out, they understand that I get miserable, depressed and feel terrible when I eat gluten. Therefor, I don't need the diagnosis because I get support from my family.

    IMO, if you know you have a problem with X, it's insane to intentionally injure yourself. If you can't handle gluten, then don't eat it. It might just be an intolerance instead of Celiac disease. Either way, avoid it and you'll feel better.

    That said, if it makes your life easier (medical insurance, family, friends, co-workers) and/or you want the official diagnosis then you might want to procede with the testing. If you don't get a positive diagnosis from this test, you might need to suck it up and damage yourself for the next month so it shows up on the next test.
    Poke it quickly, with a stick.


    • #3
      Yes, I would like the official diagnosis or exclusion precisely because it's "insane to intentionally injure yourself." If I get a negative, I won't redo it (I already know I can't eat grains longterm because of the fructans), but I'd like to have a sense of the chances for a biopsy false negative.

      Why does that matter if I'm not planning to start eating grains again anyway? I'd like to know whether having a speck of gluten by accident is going to exacerbate long-term autoimmune problems, or whether I can just stay grain free without worrying too much about trace amounts of gluten in the condiments at the dinner party.

      I've had a lot of mysterious health problems that I'm very interested in finding the root cause of. I think that's true of a lot of people who come to paleo. The more we know, the better.


      • #4
        I know a lot of people on this forum get the advice I got here -- "Don't bother with the celiac test, just stay off gluten" -- so I want to share the results to encourage people to get tested if they've had problems.

        I went ahead and did the endoscopy because I wanted to know why going low carb helped me feel better (but still not 100%) -- was it the gluten or the carbs that was the problem (or both)? It turns out I have intestinal lining damage, not because of celiac, but from an h.pylori infection.

        If I had just assumed gluten was the cause of the problem, the problem would have gone untreated, my symptoms would have come back eventually, and I would have been at risk for developing cancer. I'll stay away from gluten long term in any case, because chances are I do have a gluten sensitivity related to the infection, but it's nice to know that I don't have to worry about a trace of wheat in the soy sauce destroying my intestines.

        Glad I got a confirmation of my symptoms! When in doubt, go ahead and get tested!
        Last edited by gumboots; 05-14-2012, 05:47 AM.