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New Here, Definitely Need Help

jlafrance

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jlafrance Newbie
jlafrance
Posted

I am 19 and have had stomach problems all my life, in February I went on a gluten free diet just to see if it would help. It has and I am feeling mostly better, but now I need the official diagnosis for some paperwork I have to fill out. If I don't get the official diagnosis I can't get the help I am applying for. My son also has symptoms of Celiac's but his doctor won't test him unless I have a confirmed diagnosis. I know you're supposed to go back on gluten to get the tests, but I don't think I'd be able to deal with the pain and sick feeling I get when I've been eating gluten. Are there any tests that can be done while on the gluten free diet? I've heard there is a camera pill that you can swallow instead of the biopsy, would that help at all? I'm pretty sure I have damaged villi still because my stomach/intestines still have pain sometimes (for no apparent reason), but I don't know what to do. Also, I just started going to a community clinic for low income people and my doctor will not listen to me about the Celiac's or give me a referral. Should I look for a gastroenterologist or what? There aren't many doctors in my area that know about Celiac's (at least non I've been able to find), so I was thinking I may have to go to Seattle or something to get a doctor that knows what they're doing. Do you think I'd have to get a referral to do that or could I just call and schedule an appointment with them?

Thank you for any information.

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GFinDC Veteran
GFinDC
Posted

Ouch, you did it kind of exactly bass ackwards! :) The testing should be done first, before going gluten-free. The problem with doing it afterward is the antibodies are decreased to the point they may not show up in the blood tests. And the villi are healing so may not show enough damage in an endoscopy biopsy either. Since you have been gluten-free since Feb-11 you are most likely going to have negative tests on blood and biopsy.

The usual recommendation is to go back on gluten for 3 months prior to testing. That can be very hard to do and damaging to your body. And even then the tests for celiac can be negative because they are not 100% accurate at all times anyway.

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