Prometheus Tests - Anyone Ever Get Their "non-Risk" Info?

[beachbirdie]

Is there anyone out there who has had Prometheus DQ2/DQ8 testing that has succeeded in getting the information on their "non-risk" alleles?

My test said I had DQ2.2 (DQA1*0201, DQB1*0202 and "other non-risk alleles").

I'd really like to know what those are, given that I have another autoimmune disease closely associated with celiac. One of the serotypes associated with Hashimoto's appears to mediate celiac disease according to the Wikipedia HLA=DQ information.

I'm more trying to help my mother now than help myself, she has so many signs that she could have celiac but a blood panel they ran was negative. Unfortunately, I let it go because I did not know that her low serum IgA could affect her other tests.

She is having idiopathic hypoparathyroidism, mouth ulcers, leg edema, severe bloating, and serious short-term memory trouble. She had an EEG which the neurologist said showed what gave the appearance of micro-seizures, though she's never had seizures in her life.

She is 83, and no one seems to take seriously that at her age it might be possible to have gluten problems. I figure if I can nail down my own and my two children's gluten problems, it might be easier to help my mom.

Thanks

[nora-n]

I ahve seen others getting their other genes from other labs, and some have phoned or contacted the lab and gotten the rest of the genes.

If you cannot get the results, you can order the gene test from enterolab, they send it to the American Red Cross, but keep the costs down by only ordering the beta chains.

With DQ2,2 the alpha chain of the other chain is very interesting, because if you have DQ7,5 then those two make up the celiac 2,5 gene. I am not sure if enterolab/red cross picks up that constellation.

Another thing, if you surf around on the HLA DQ pages on en.wikipedia.org, they say that DQ2,2 has a risk for celiac.

Also, there have been several people here posting with DQ2,2 and lots of symptoms.

[beachbirdie]

I ahve seen others getting their other genes from other labs, and some have phoned or contacted the lab and gotten the rest of the genes.

If you cannot get the results, you can order the gene test from enterolab, they send it to the American Red Cross, but keep the costs down by only ordering the beta chains.

With DQ2,2 the alpha chain of the other chain is very interesting, because if you have DQ7,5 then those two make up the celiac 2,5 gene. I am not sure if enterolab/red cross picks up that constellation.

Another thing, if you surf around on the HLA DQ pages on en.wikipedia.org, they say that DQ2,2 has a risk for celiac.

Also, there have been several people here posting with DQ2,2 and lots of symptoms.

Thank you Nora, I appreciate the information. I was wondering about the DQ7, one of the Wikipedia articles says that the DQ7 mediates celiac disease in the DQ2.2. That being the case, it would explain why there are a lot of DQ2.2 people here, who have celiac, yet only have the one "low-risk" gene. Maybe their other gene is the one no one looks for. Golly, this is complicated!

I've been waffling on getting the enterolab tests, some here seem to think them helpful, others don't seem to think much of them! I'll try contacting the lab first and see if they can give up the other information. Hopefully it will be available

Thanks again. I really appreciate your thoughts, you help me to know I'm not necessarily being unnecessarily persistent in the cause! My mom needs help, I'm hoping I have enough info to put pressure on her doctors to look more closely at the possibility of celiac for her, no matter what her age.

Best,

beachbirdie

EDIT: I forgot to ask, who does one approach to see about getting the unreported information? My doc says they don't send it to her, so do I go directly to Prometheus, or to the lab through which the blood was sent (the ones who billed me the big bucks)?

THANKS AGAIN!

[nora-n]

in the other threads here the patients contacted the lab directly.

But I do not know if Prometheus tests for the other genes, and the alpha chains, i do not know.

There is a rapid test kit that only says positive or negative for DQ2 or 8, maybe they use that one, maybe not.