Test Results Confusing

[kdh]

Hello. Newbie here. I hope someone can help clear up a few different things that have me confused. My Prometheus test results are:

Category #7- Very High Risk -DQ2/other high risk gene=16X risk

Celiac Risk Genes Detected: DQ2.2 (HLA DQA1*0201:DQB1*0202) and DQ2.5trans (HLA DQA1*05)

Do I not have two DQ2's? Why would results say DQ2 & OTHER high risk gene if they are both DQ2? And if it's not DQ2, then what is it?

To make things more confusing, when the nurse(?) read my results to me over the phone, she said I had DQ2 & DQ8= very high risk. That's not what my lab report says. Perhaps she read the wrong line for very high risk?

One more question: I had my blood panel done after I had been off gluten for 3 wks. (never even suspected Celiac before giving up wheat) My LabCorp results are:

Deamidated Gliadin Abs, IgA 3 units Limits 0-19 lab- 01

Deamidated Gliadin Abs, IgG 3 units Limits 0-19 lab- 01

t-Transglutaminase (tTG) IgA <2 U/mL Limits 0-3 lab- 01

t-Transglutaminase (tTG) IgG 3 U/mL Limits 0-5 lab- 01

Endomysial Antibody IgA - negative - negative lab- 01

Immunoglobulin A, Qn, Serum 266 mg/dL Limits 70-400 lab- 01

Is it normal for all lab results to be 01 or am I reading it wrong?

Thanks in advance for any help.

[psawyer]

Welcome,

I can't help with the genetic part. There are others here who will.

I think the "01" is a lab identifier. I'll highlight what I take to be the relevant numbers.

Deamidated Gliadin Abs, IgA 3 units Limits 0-19 lab- 01

Deamidated Gliadin Abs, IgG 3 units Limits 0-19 lab- 01

t-Transglutaminase (tTG) IgA <2 U/mL Limits 0-3 lab- 01

t-Transglutaminase (tTG) IgG 3 U/mL Limits 0-5 lab- 01

Endomysial Antibody IgA - negative - negative lab- 01

Immunoglobulin A, Qn, Serum 266 mg/dL Limits 70-400 lab- 01

In each case, the first number (your result) falls within the "normal" limits. But if you had been gluten-free for three weeks, those could be false negatives.

[beachbirdie]

Hello. Newbie here. I hope someone can help clear up a few different things that have me confused. My Prometheus test results are:

Category #7- Very High Risk -DQ2/other high risk gene=16X risk

Celiac Risk Genes Detected: DQ2.2 (HLA DQA1*0201:DQB1*0202) and DQ2.5trans (HLA DQA1*05)

Do I not have two DQ2's? Why would results say DQ2 & OTHER high risk gene if they are both DQ2? And if it's not DQ2, then what is it?

To make things more confusing, when the nurse(?) read my results to me over the phone, she said I had DQ2 & DQ8= very high risk. That's not what my lab report says. Perhaps she read the wrong line for very high risk?

From the Open Original Shared Link: "This isoform occurs when a person has the DQ7.5/DQ2.2 phenotype."

It's a good article on the genetic stuff.

I'd guess your DQ2.5_trans came from a DQ7, Prometheus doesn't report the DQ7. Too bad they didn't report the beta on your DQ2.5. The DQ7.5 raises the risk factor of your DQ2.2. According to the Wikipedia article, your HLA-DQA1*05 can actually appear in celiacs without DQ2 or DQ8.

Sooo...you have a very high risk, even though your blood tests look perfectly normal.

What symptoms prompted them to do the celiac testing?

[kdh]

Welcome,

I can't help with the genetic part. There are others here who will.

I think the "01" is a lab identifier. I'll highlight what I take to be the relevant numbers.

Deamidated Gliadin Abs, IgA 3 units Limits 0-19 lab- 01

Deamidated Gliadin Abs, IgG 3 units Limits 0-19 lab- 01

t-Transglutaminase (tTG) IgA <2 U/mL Limits 0-3 lab- 01

t-Transglutaminase (tTG) IgG 3 U/mL Limits 0-5 lab- 01

Endomysial Antibody IgA - negative - negative lab- 01

Immunoglobulin A, Qn, Serum 266 mg/dL Limits 70-400 lab- 01

In each case, the first number (your result) falls within the "normal" limits. But if you had been gluten-free for three weeks, those could be false negatives.

That makes more sense. Thank you.

[kdh]

From the Open Original Shared Link: "This isoform occurs when a person has the DQ7.5/DQ2.2 phenotype."

It's a good article on the genetic stuff.

I'd guess your DQ2.5_trans came from a DQ7, Prometheus doesn't report the DQ7. Too bad they didn't report the beta on your DQ2.5. The DQ7.5 raises the risk factor of your DQ2.2. According to the Wikipedia article, your HLA-DQA1*05 can actually appear in celiacs without DQ2 or DQ8.

Sooo...you have a very high risk, even though your blood tests look perfectly normal.

What symptoms prompted them to do the celiac testing?

Thanks for your help. I went off wheat for a week to see if it would help my energy level. I became sicker & sicker. (nausea, dizziness, headache) I googled "wheat withdrawal", not even knowing if there was such a thing. Bingo. I started to feel better around the 5th day & haven't eaten wheat again. I am no longer tired all the time. I don't always have to urgently use the bathroom 15-30 minutes after eating. This led me to ask for Celiac Testing. My other symptoms were constant fatigue (my whole life), GERD, frequent headaches, depression, irritability. I also had a low birth weight- 5 lbs., 7 ozs. (Don't know if that was due to my mom's possible Celiac or mine.) I have always been small & short for my age (until middle age, that is, now I'm just short.) I did not get my period until I was 16.

So, do you think I'm a DQ2/DQ7?

Thanks again.

[beachbirdie]

Thanks for your help. I went off wheat for a week to see if it would help my energy level. I became sicker & sicker. (nausea, dizziness, headache) I googled "wheat withdrawal", not even knowing if there was such a thing. Bingo. I started to feel better around the 5th day & haven't eaten wheat again. I am no longer tired all the time. I don't always have to urgently use the bathroom 15-30 minutes after eating. This led me to ask for Celiac Testing. My other symptoms were constant fatigue (my whole life), GERD, frequent headaches, depression, irritability. I also had a low birth weight- 5 lbs., 7 ozs. (Don't know if that was due to my mom's possible Celiac or mine.) I have always been small & short for my age (until middle age, that is, now I'm just short.) I did not get my period until I was 16.

So, do you think I'm a DQ2/DQ7?

Thanks again.

I'm guessing that would be close. But remember I'm still newbie at this!

Judging from the risk table that Prometheus puts out regarding their testing, the 16x risk for celiac is associated with "DQ2 and other high risk gene". More about DQ7 Open Original Shared Link From the article: "In celiac disease the DQ7 (A*0505/1) can mediate celiac disease when HLA DQ2.2 is also present". So, the DQ7, in the presence of your DQ2.2, makes it high risk (remember it is part of creating that DQ2.5_trans).

You can see a copy of the Prometheus risk table Open Original Shared Link. You'll have to scroll down to page 8, this one is from a PowerPoint presentation given by University of Texas. I couldn't find the other place I saw a copy of this that was easier to navigate to!

Someone please correct me if I've messed this up!

[kdh]

O.K. So, if I have this correct, you believe that my "other high risk gene" is likely DQ7, because DQ7.5 and DQ2.2 can "make"(?) DQ2.5, which is high risk. Furthermore, DQ2.2 is not high risk unless DQ2.5 is also present, which just so happens to occur with DQ7.5 & DQ2.2. So, DQ7 is not high risk unless it is DQ7.5 paired with DQ2.2.

Is this anywhere close to correct? Or do I need to give up trying to wrap my head around it and just go with, I'm a category 7?

Thanks.

[beachbirdie]

O.K. So, if I have this correct, you believe that my "other high risk gene" is likely DQ7, because DQ7.5 and DQ2.2 can "make"(?) DQ2.5, which is high risk. Furthermore, DQ2.2 is not high risk unless DQ2.5 is also present, which just so happens to occur with DQ7.5 & DQ2.2. So, DQ7 is not high risk unless it is DQ7.5 paired with DQ2.2.

Is this anywhere close to correct? Or do I need to give up trying to wrap my head around it and just go with, I'm a category 7?

Thanks.

It looks to me, a newbie, that your DQ2.2 risk is multiplied by having the "other high risk" gene, which according to the charts on wikipedia is DQ7. So, you would not be considered at risk with a DQ7 alone. That is correct.

LOL! I don't really have MY head around it, so can't really say much more! You are definitely in a very high risk category, and it isn't really critical to comprehend the fine detail of gene pairing unless of course you have a love for genetics!

If you go back to the Open Original Shared Link page and scroll down a bit, you can see a chart that shows all the different alpha and beta chains and how they combine to form the different DQ types. Each one has a link where they are discussed individually. It's good stuff, but takes time to digest. There is an easy to read article on this site that explains the genes in pretty plain English. Might be helpful.

The DQ2.2 by itself is pretty low risk. Although, not no risk. I am a DQ2.2, and my doc is calling me celiac. There are a couple of others around here also who are DQ2.2, negative on bloodwork, but had serious intestinal damage.

Remember that the genes are not predictive on their own of whether you will get the disease; the majority of people with the genes don't. But having the disease is extremely rare (not impossible) if you don't have them.

Clear as mud? I'm still struggling!

[kdh]

It looks to me, a newbie, that your DQ2.2 risk is multiplied by having the "other high risk" gene, which according to the charts on wikipedia is DQ7. So, you would not be considered at risk with a DQ7 alone. That is correct.

LOL! I don't really have MY head around it, so can't really say much more! You are definitely in a very high risk category, and it isn't really critical to comprehend the fine detail of gene pairing unless of course you have a love for genetics!

If you go back to the Open Original Shared Link page and scroll down a bit, you can see a chart that shows all the different alpha and beta chains and how they combine to form the different DQ types. Each one has a link where they are discussed individually. It's good stuff, but takes time to digest. There is an easy to read article on this site that explains the genes in pretty plain English. Might be helpful.

The DQ2.2 by itself is pretty low risk. Although, not no risk. I am a DQ2.2, and my doc is calling me celiac. There are a couple of others around here also who are DQ2.2, negative on bloodwork, but had serious intestinal damage.

Remember that the genes are not predictive on their own of whether you will get the disease; the majority of people with the genes don't. But having the disease is extremely rare (not impossible) if you don't have them.

Clear as mud? I'm still struggling!

Thank you. You have been most helpful.

[nora-n]

I think you just have DQ2,5 by trans and a DQ7,5. Not a DQ8.

This is most likely made up by DQ2,2 and a 05* alpha chain, often the alpha chain in DQ7,5.

I do not think there is greater risk for celiac than just having one DQ2,5.

I think the lab answer regarding risks was a standard answer they give when there are two celiac genes, and one of them i s DQ2,5, but in this case the DQ2,5 is made up of two genes.....it confuses the computer.

Several people have found out that labs do have the other gene test reports, but one needs to phone. They do not report them back at first because doctors are so ignorant and get confused from too much input....

Yes, going gluten free might have caused the antibodies to drop, especially if you did not eat very much gluten beforehand.

And if you took steroids like for allergies, or cream for rashes, the gut heals extra fast, and taking vitamin B-12 might also cause false negative tests in theory but we do not know for sure.

Lots of people have negative tests by the way.