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Member Since 27 Feb 2013
Offline Last Active Feb 28 2013 05:52 AM

Posts I've Made

In Topic: Very Frustrated With No Answers

27 February 2013 - 05:12 PM

Yes, it could be non-celiac gluten intolerance, which is about six times more prevalent than actual celiac disease (supposedly it is not an autoimmune response - and I say supposedly, because they don't know much about it yet).  Or it could be a false negative, or you may not yet be making sufficient antibodies to measure yet.  Or it is most likely that after two weeks of very low gluten before testing, that enough healing had taken place that the antibodies they test for had retreated :unsure:


If you have been gluten lite for only a month, it has not been enough, or long enough to feel the full benefits yet.  Keep up the diet and I believe you can get back to 100% :) whether it is actual celiac or non-celiac gluten intolerance.


At this point testing by the GI is probably not going to help because you have a month of healing and even the biopsy could well be falsely negative at this stage and you would have to do a gluten challenge to be accurately tested. :(

Is there a test to confirm gluten intolerance?  I'm tempted to do gluten OD for the next 12 days before my GI appt. and have them re-test me.  It's driving me nuts not having a clear answer, and it's so expensive every time I have to go to the doctors.  I wish they had a policy where you don't pay until they give you a diagnosis :) .

In Topic: Very Frustrated With No Answers

27 February 2013 - 05:05 PM

Actually, the biopsy could possibly still tell you something. But, it's an invasive test and there are risks with that, so you would have to weigh the risks/benefits. I had to have both endo and colonoscopy for other reasons. I had an endoscopy at 5 months mostly gluten free (mostly meaning a cheat every 3-4 weeks and not watching CC at all) and I had Marsh 1. That with my dietary response led the GI to dx celiac. My blood tests were negative b/c they weren't done until a month before the scope. 

Probably a stupid question, but what is "CC"?

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