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gooseberry

I Don't Know What To Do!

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I've had two blood tests for celiac and they have both come back negative. I was able to convince me doctor that what I was experiencing was not just IBS and might be worth looking into. He suggested an endoscopy, then told me I had to eat gluten until then. So I ate it for 5 days and on the fifth day I nearly passed out. I don't know if I can continue. Is it worth it?? I feel so much better when I don't eat gluten, I just don't think I can go through with it to get a diagnosis (maybe).

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Celiac.com Sponsor (A8):

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Have you contacted your doctor and told him of the reaction? That is diagnostic in itself. If you have been gluten free did your doctor know this when he did the blood tests? It would have produced a false negative. They are looking for an antibody reaction and if you stop eating gluten you stop producing the antibodies and the test will be negative. Actually up to 30% of full blown celiacs still on gluten will show up negative so it really isn't all that reliable.

If you are eating gluten for an endo you do have to be eating the equivalent of at least 4 slices of bread a day for about 3 months to produce enough damage to show in a healed gut. If you had been gluten-free for a while and are doing under that then you have even more of a risk of a false negative biopsy.

The fact that you are in so much distress is really telling you all you need to know, IMHO.

Welcome and I hope you feel better soon.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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