Test For Gluten Intake

[Bubba's Mom]

Please forgive my ignorance, but why isn't DQ2.2 the same as DQ2? Isn't DQ2.2 just a subset of DQ2?

Sorry if this is a dumb question, but I understand very little about the HLA typing, other than the fact that there are 2 key groups researchers say are POTENTIAL celiacs, with celiac being uncommon (but they don't know uncommon) outside of these groups?

Thanks

The way the gene reports are written can be confusing to most people, including the Dr.s that order them.

I'll show you how my report looked..

The Dr. asked for Genetic Celiac Associated HLA-DQ Typing

The report says:

DQ alpha 1 01:03, 02:01

DQ beta 1 02:02, 06

There are alpha chains and beta chains that are linked to DQ alleles, like beads in a necklace(subsets). These "beads"(subsets) link up and form pairs that perform in a certain way, which can make them act like other genes.

I bolded the alleles in my report that form a DQ 2.2 when paired together. I had to look this up on Wikipedia to understand the gene and allele pairings. I hope I didn't confuse you more by trying to explain it?

When my Dr. looked at the report he didn't see DQ2 and/or DQ8, which is what he was expecting, so he says my gene test is negative. It's not. I just don't have double pairs of genes that would mean I got a gene from each parent. Therefore, my report says equivocal. Equivocal means it's not definate one way or the other..not negative, which is what I was told the report said.

I haven't seen the Dr. that ordered my gene test since we got the results back. I got them by stopping in and picking them up. His office has canceled appointments on me twice now. I think he doesn't quite know what to do with me and has referred me to Mayo Clinic?

I think I may just print off the Wikipedia explanation and send it to him so hopefully, he doesn't mis-diagnose someone else because of his inablity to understand the gene reports. I dunno..maybe it's a waste of time? I don't plan on going back to him anyways.

[IrishHeart]

The way the gene reports are written can be confusing to most people, including the Dr.s that order them.

I'll show you how my report looked..

The Dr. asked for Genetic Celiac Associated HLA-DQ Typing

The report says:

DQ alpha 1 01:03, 02:01

DQ beta 1 02:02, 06

There are alpha chains and beta chains that are linked to DQ alleles, like beads in a necklace(subsets). These "beads"(subsets) link up and form pairs that perform in a certain way, which can make them act like other genes.

I bolded the alleles in my report that form a DQ 2.2 when paired together. I had to look this up on Wikipedia to understand the gene and allele pairings. I hope I didn't confuse you more by trying to explain it?

When my Dr. looked at the report he didn't see DQ2 and/or DQ8, which is what he was expecting, so he says my gene test is negative. It's not. I just don't have double pairs of genes that would mean I got a gene from each parent. Therefore, my report says equivocal. Equivocal means it's not definate one way or the other..not negative, which is what I was told the report said.

I haven't seen the Dr. that ordered my gene test since we got the results back. I got them by stopping in and picking them up. His office has canceled appointments on me twice now. I think he doesn't quite know what to do with me and has referred me to Mayo Clinic?

I think I may just print off the Wikipedia explanation and send it to him so hopefully, he doesn't mis-diagnose someone else because of his inablity to understand the gene reports. I dunno..maybe it's a waste of time? I don't plan on going back to him anyways.

I honestly do not understand how yours is written either.

Mine is a lot more clearly written than that!

The Doctor who ordered the test for you should be the one to INTERPRET the results for you.

I do not know what a second trip to the Mayo Clinic is going to do for you, hon. IMHO

You know you have Celiac from the biopsy. You have a PCP willing to run follow up testing. That's more of a DX than many people have.

This discussion, however, is way off the original topic and in all fairness to the original poster, should be made a separate thread of it's own.

I can ask to have the thread split --if you wish to continue talking with UKGail about gene tests?

[Bubba's Mom]

I deeply apoligize to the OP for getting off topic. It's so easy to ask and answer questions as they arise in a normal flow of conversation. I certainly didn't mean to hijack your thread.

[IrishHeart]

I deeply apoligize to the OP for getting off topic. It's so easy to ask and answer questions as they arise in a normal flow of conversation. I certainly didn't mean to hijack your thread.

It's not a big deal, hon--not to worry---it happens all the time.

As you say, so many questions come up in the flow of a thread!

I just was trying to steer it back.

[UKGail]

Thanks for the info Bubba's Mom - no wonder I am confused, when even the doctors don't understand it!

[Gemini]

Maybe I misunderstand what you wrote, but....

if they are present, you ARE ingesting gluten.

if they are absent , that does not prove you're not?

so, in essence, the test is worthless?

I am seronegative myself, so follow up testing is worthless on me anyway.

But if a person was POSITIVE on blood work before DX and then going gluten-free, wouldn't it be a reliable FOLLOW UP test for that person?

(which may be what Gemini was trying to convey?)

Yes, that was exactly what I was trying to convey, IrishHeart. My goodness, I don't have a Ph.D. and it's perfectly self explanatory to me. I am extremely serio-positive in all my autoimmune problems so using the available testing methods work well for me and for anyone else in the same shoes. My last testing came as close to zero as you can get, I am completely asymptomatic after years of misery and all my testing is coming down the longer I remain gluten free. What else does a person need to see to understand there is no gluten in the food they are consuming?