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    dontknownuthin's Avatar
    dontknownuthin Posts: 2,910, Reputation: 751
    Ultra Member

    Nov 16, 2016, 11:25 AM
    Celiac diagnosis question
    I am looking for some additional opinions - of course asking my doctor as well. I had a positive blood test result for celiac. Why is it necessary, or is it, to follow up with endoscopy/biopsy? Do some people have strong positive blood test results and then prove not to have celiac? Or would I still need to go on a gluten free diet for gluten sensitivity if the biopsy/endoscopy were negative?

    My thinking is that if I have to do the diet either way, and no other treatment is available, why go through this invasive procedure?
    joypulv's Avatar
    joypulv Posts: 21,593, Reputation: 2941
    current pert

    Nov 16, 2016, 12:36 PM
    It can lead to 4 or 5 different kinds of cancer, and the biopsy confirms the damage to the villi of the small intestine.
    Yes, it's possible to test positive and not have celiac, because what it's testing is your immune system response, and there are other conditions that that can indicate.
    It's also possible to have all the symptoms but not have it. That's called non-celiac wheat sensitivity.

    You should know within 2 weeks or so whether or not you are really intolerant to gluten (assuming you stay on the diet).
    You probably will have to wait at least that long anyway for the endoscopy.

    Many people feel that many of us are experiencing symptoms as a reaction to modern strains of wheat rather than true celiac disease, but I won't get into that.
    dontknownuthin's Avatar
    dontknownuthin Posts: 2,910, Reputation: 751
    Ultra Member

    Nov 17, 2016, 11:33 AM
    Thanks, Joy. I got more feedback on this from my doctor. He thinks a negative result is highly unlikely but said he wants to confirm because if it's actually celiac I have to be religious about avoiding gluten. If it's just a mild sensitivity, I could try to cut down by eliminating the obvious gluten sources but not worry as much about hidden gluten like cross-contamination from someone wearing the same gloves to prepare gluten containing food as my food. So, his feeling was that it's worth confirming or not to know how crazed I need to be about avoiding gluten. I've cut a lot of grains already just because I have type II diabetes that's easier to manage with less grains in my diet, but I'm reading blogs about celiac and wow - people are talking about things like reacting when someone accidentally got a little flour in their oatmeal because there was a trace of flour on a measuring spoon. I'm hoping I don't need to be that exacting. Yikes.
    0rphan's Avatar
    0rphan Posts: 1,282, Reputation: 240
    Ultra Member

    May 15, 2017, 08:34 AM
    The biopsy is to back up the blood test and make the diagnoses 100%.
    I am coeliac my blood was 95% and then biopsy confirmed mine.You can have other symptoms as well like anemia,ibs,reflux, extreme fatique plus many more it's very important to stick to a gluten free diet.Some symptoms are very painful which only you will know how your affected... in my case I try to avoid anything that will kick mine off because I know I will suffer for days however you may be different... coeliac is not an allergic reaction it is an auto amune disease which attacts the body,many people think it's an allergy but no that's different.Bread is my biggest loss even though I've tried baking my own with non gluten flour etc... I have to say nothing works... what I give for a thick crusty topper lol... happy days... I wish you luck.

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