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latteda

Confused....please Help

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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?

:(


Wheat free since June, 2000.

Gluten-free since April, 2009.

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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.


Peter

Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000. I was retested five years later and the biopsy was normal. You can beat this disease!

Type 1 (autoimmune) diabetes diagnosed in March 1986

Markham, Ontario (borders on Toronto)

Celiac.com - Celiac Disease Board Moderator since 2007

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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.


Wheat free since June, 2000.

Gluten-free since April, 2009.

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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.


gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.

daughter officially diagnosed celiac and casein intolerant.

non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5

Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet

Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

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