I'm Hla Dq8 Heterozygous

[ClevelandGuy]

Hi all,

The results of my genetic test came in, and the doc says I'm heterozygous for HLA DQ8. She only ran the DQ2 and DQ8 panels. My understanding is that this indicates "moderate" risk, but is not indicative one way or the other of Celiac. She recommends continuing the diet, which I will do for now.

I also asked her about the mild villous blunting that she observed during the endoscopy. As I suspected, this was her visual observation during the procedure; it was not confirmed by the pathology report however, which came back normal. She said that if in a few months more on the diet I don't show significant improvement, she'd like to repeat the endoscopy with me on full anesthesia, so that she can get better samples.

BTW today is 7 weeks gluten-free, still no improvement in fatigue. :-(

[cassP]

maybe you also need to take B12 & D supplements or injections for the fatigue... or check your thyroid? discuss this with your doc!

in addition to that- i would definitely say continue on the diet- your DQ8s & TTG is convincing enough

hope you conquer the fatigue in the near future

[ClevelandGuy]

maybe you also need to take B12 & D supplements or injections for the fatigue... or check your thyroid? discuss this with your doc!

in addition to that- i would definitely say continue on the diet- your DQ8s & TTG is convincing enough

hope you conquer the fatigue in the near future

Yes, I've been taking B12, D and a multi for months. Also just started some sublingual B12 (thanks, ravenwoodglass).

I'm hypothyroid, but within normal levels on Synthroid and Cytomel. I'm past due to get it checked again though.

Thanks cassP.

[nora-n]

Hi, DQ8 is not just moderate risk, it is the other one of the main celiac genes.

The mild villous blunting sounds like celiac.

[ClevelandGuy]

Hi, DQ8 is not just moderate risk, it is the other one of the main celiac genes.

The mild villous blunting sounds like celiac.

I think they consider it as moderate because it's heterozygous, meaning that I have one copy of it from a single parent. We really need better tests!

[cassP]

ooohhhhh "heterozygous" means ONE gene? oops, i didnt understand that.

it's still a factor.. tho- ive got 2, so i know both my parents have at least 1 DQ8. im trying so hard to get them to go get tested- but they're tired of me talking about it . my dad always responds- "but i never have a stomach ache"... but that doesnt always matter- not every Celiac has gut symptoms

we definitely need better testing, and more educated doctors.. cause treating Celiac & Gluten Intolerance can prevent so many unneccessary illness

[ravenwoodglass]

I think they consider it as moderate because it's heterozygous, meaning that I have one copy of it from a single parent. We really need better tests!

Yes they do need better tests and a better understanding of all the genes involved. My DD had her biopsy and blood postive diagnosis reversed because she doesn't have DQ2 or DQ8. I am definately a diagnosed celiac and I have neither of those either. I do however have a double copy of a gene that is recognized as a celiac associated gene in other countries.

Don't take it as a for certain you are not celiac based just on gene testing.