Gene Test Results Negative

[gatita]

Here are my gene test results, so it seems it is NOT celiac. Which is good news for my relatives. I guess this narrows what I have down to NCGI, but my GI doc is doing an endo in a couple weeks anyway....

I'm not doubting the interpretation, but can anyone decipher what this means? I get what the first two are and am lost after that.

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Interpretation --- The patient does not have the HLA-DQ variants associated with celiac disease.

More than 97% of celiac patients carry either HLA-DQ2(DQA1*05/DQB1*02) or HLA-DQ8(DQA1*03/DQB1*0302) or both.

Hla-Dq2 Negative

Hla-Dq8 Negative

Hla-Dqa1 -- 01

Hla-Dqa1 -- 02

Hla-Dqb1 -- 0303

Hla-Dqb1 -- 0603

[kareng]

Unless you are in the 3% that don't have the genes they test for?

[gatita]

Oh.... I didn't think of that. Maybe that's why he's doing the scope anyway.

[Celiac Mindwarp]

I was told if I don't have the genes, I ain't celiac (I don't have the genes). Does anyone have any information about the other 3%?

[mushroom]

I was told if I don't have the genes, I ain't celiac (I don't have the genes). Does anyone have any information about the other 3%?

ravenwoodglass belongs in that 3%. You can find out what it did to her

[gatita]

So my GI seems to be sure I am celiac negative, given my blood tests were also neg. I'm at a loss as to why he's doing the endo, plus I'm supposed to start a gluten challenge on Sunday. Why would I do a gluten challenge and biopsy if he is convinced I'm negative anyway?

I tend to think that I'm probably not in that "less than 3 percent" group -- I mean those are pretty slim odds. I have to accept that all of the most sophisticated tests say I'm not celiac. I guess the biopsy will be the last test.

I'm kind of freaking out about what to do next because I still can't eat gluten and I seem to have a wheat allergy, as in the puffy face and all. So little is known about NCGI... Are all the potential complications the same? Do I need to be as strict? I don't mind being gluten-strict in my own home, but I do sometimes feel bad giving friends and family the once-over in their own kitchens. Can I lay off them a little if I don't have celiac??

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Also, does anybody know what the last four gene tests mean, if anything?

Hla-Dqa1 -- 01

Hla-Dqa1 -- 02

Hla-Dqb1 -- 0303

Hla-Dqb1 -- 0603

[gatita]

OK answering some of my own questions here . It looks like the Hla-Dqb1 -- 0303 is the same as DQ9? Is that right? And DQ9 is now possibly linked to a "pre-disposure" to celiac and/or gluten intolerance:

Open Original Shared Link

[Ninja]

Actually, I've read studies wherein they've found up to 6-8% (I think) being negative for both the alpha and beta chains of DQ2 and DQ8 (which includes, by default, DQ7.5), the study had a very large cohort as well. Let me see if I can dig it up...

EDIT: Here are a couple I've read a long the way.... still digging for the study that showed only 93% of the celiac cohort showed DQ2 and/or DQ8.

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link - In this article Dr. Fasano acknowledges that 2-3% of people diagnosed with Celiac do not have the genes.