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horsegirl

Everything's Negative!

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So I finally got all my test results back from Prometheus, and everything was negative (all antibodies as well as the genetic markers). The antibodies don't surprise me, as I was gluten free

for 5 months, followed by a gluten challenge of only 3 weeks prior to the blood test. During the 5 months gluten free, I had no joint/muscle pain, my fatigue was almost gone, & I felt pretty great.

During the 3 weeks on the gluten challenge, the pain came back, as did the fatigue, headaches,

nausea/vomiting, D, etc etc. So my doctor says I COULD still have celiac even though the genetic

markers are negative?? Sounds strange to me. He recommends I go ahead with the consultation

with the G.I. doctor, then decide whether to have the endoscopy/biopsy. My thoughts are to see the

G.I. doc, see what he says, & go from there. But after being on gluten again for less than 1 month

I don't see a lot of point to the biopsy. Plus, if I don't have the genes for celiac, could I even have it?

At this point I'm assuming my "diagnosis" would be non-celiac gluten intolerance, based on dietary response alone. Any advice or suggestions would be great. Thanks!

P.S. My insurance company finally said they would reimburse me for the Enterolab gluten testing, so

I'm going to go ahead with that to see if it's any different from what Prometheus found out.

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Plus, if I don't have the genes for celiac, could I even have it?

Yes. If you change the wording to be "I don't have any of the known genes for Celiac could I have it" It makes more sense.

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Definitely Test Thru enterolab, you will get a more realistic results from them, as it can be positive after one year gluten-free. Also get the gene test, you probably have the gluten intolerant gene or genes, DQ1 or DQ3, & yes they do know that there are at least one or more "celiac" genes that have not been discovered yet.

dietary trial for us DQ1 people is like night & day - we seem to get better right away, i guess so, it is like poison to us. Do you have neurological symptoms also? (A good indication you have DQ1)

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Also get the gene test...

Before springing for that, see if you can get a copy of whatever test your doctor's office did. They may have tested all the genes because the kit comes with a whole panel of DQ tests.

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Hi gfpaperdoll,

Yes, most of my symptoms are neurological. My rheumatologist told me I have fibromyalgia last December, then told me "I could give you morphine & it wouldn't help the pain any", & basically said I need to do core strengthening exercises to help my whole body get stronger. But, I could barely

do anything because the pain & fatigue were so bad! I did a bunch of research, & found out about

how some people have an improvement in fibro symptoms when they stop eating gluten. After 1

week gluten free this past February, almost all of my neuro symptoms were gone, & even my arthritis pain was much better! Since going back on gluten almost a month ago (at my primary doc's suggestion, to do the Prometheus blood tests, which were all negative), the pain is bad & getting worse. I can't wait `til my G.I. consultation, & then I will kiss gluten "Good-Bye" forever!

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yes, fibro symptoms are hard to distinguish from Celiac, I would say that if your fibro does not improve on the gluten free diet, check into oxalates. which also causes fibro like symptoms.

Good luck with the gluten-free, let us know what the doc says.

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