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Confused....please Help

latteda

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latteda Apprentice
latteda
Posted

I thought for sure I had Celiac disease. I was showing all the symptoms of it. I started eating gluten-free and my symptoms cleared up when I did. If I accidentally got it, it would make me sick. My sister had the same problem and also went gluten-free. She is feeling much better now. But after six months of eating gluten-free, I finally had a genetic test done with MyCeliacID. I got my results in last night and they came back negative. It said I do not have the genetic sequence associate with Celiac disease and it is HIGHLY UNLIKELY that I will ever develop it. From what I understand, this test is 99% accurate.

So now I don't know what to do. I know this isn't all in my head, and it seems to be related to gluten. So I am so confused about what to do next. Does anyone have suggestions?

:(

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psawyer Proficient
psawyer
Posted

Not everyone who is gluten intolerant has celiac disease. Also, there is some debate about exactly which genes are associated with celiac disease. I understand that in Europe there are some genetic factors that are considered to be associated with celiac disease that North American medicine does not (yet) recognize.

Your response to the diet is your best diagnostic method. If gluten makes you sick, don't eat it.

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latteda Apprentice
latteda
  • Author
Posted

Does an intolerance manifest itself in the same way that Celiac disease does? Also does it cause the same problems to intestines as Celiac disease?

I didn't realize that about other genes. This tested for DQ2 and DQ8. The reason I was looking for genetic results was to get an idea of the severity of the disease and my likelihood to pass it down to children.

Thank you so much for responding.

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nora-n Rookie
nora-n
Posted

there are lots of people here on this forums with celiac and other genes.. And, there is a chance you were mistyped. One poster here actually was DQ8 but the lab did not find it before they sent the sample to another lab.

6% have half a gene, and about 2 % have other genes. The half genes did not show up here until a couple of people recently, so the all the others before that were told they were negative....

Both me and my daughter react a lot when glutened, and had lots of symptoms on gluten, but had negative tests.

The person with the elusive DQ8 tried Enterolab, and they did manage to find the DQ8 in the first try.

DQ7 can be celiac, too, and all the others except double DQ4.

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