Genetic Testing

[Glutenfree4LJS]

Hi everyone! I was wondering if anyone on here has any experience with celiac genetic testing. I have a 4 year old who was diagnosed with celiac at 2 he is now 4. He's doing amazing! Since then we have had a daughter who is 3 mos. old. I'm considering testing to see if she has the genetic predisposition to be a celiac as well before she is old enough to start on solid food. I figure that if she does have the genetic markers we can have a heads up and if not then we know she can have gluten and be fine. any tips or info. will be helpful. I noticed that there are a few companies out there that do this testing without a doctors order. Is that a reliable way to go?

[Skylark]

If you can't get the testing covered under insurance, the companies where you pay will all execute the test correctly. The question is what information you're looking for. Enterolab does B-chain only. They give you all the results but you won't know for sure about DQA*0505. Kimball and Prometheus test for celiac-specific alleles including some DQA chains like *0505 but I don't think they give you any info on the non-celiac genes.

[StephanieL]

We were advised not to bother with the genetic test by our gastro Dr. DS has Celiac and the genes. We (DH and I) are his parents and are the parents of his two sibs. She said the chance of them NOT having the genetics is pretty low. I didn't ask %'s but I tend to agree.

[Jestgar]

What would be the point? There's no single identified gene that causes celiac disease or gluten intolerance, and of the known genes that are associated with celiac disease, they are just that, associated. Having the genes doesn't mean you'll get the disorder, and not having the genes doesn't mean you won't get the disorder.

[mommida]

My husband and I went for some genetic counseling before we had kids. There seemed to be a lot of heart problems in the family, and some blood disorders, some auto-immune diseases. It was a waste of time. There are no pre-answers, we didn't even know about Celiac in the family. (Found out years later when I asked a cousin to tell me all of her deceased mother's health issues she could remember. She described Celiac but the doctors never told her the name of the disease.)

If I had decided not to have kids, I would have missed a lot of joy in my life. I would have missed a love that grows every day and makes me strive to be a better person. My kids are just kids and they make mistakes, have faults, and have Celiac too. The worst part, it is sometimes like arguing with yourself.

So babies will be born with "the human condition". If you don't think you can accept what little human will come to you if they aren't "perfect", DO NOT even think of being a parent. If you think there is a "test" for parenting, there is. Children will test your patience every day.

[Lisa]

So babies will be born with "the human condition". If you don't think you can accept what little human will come to you if they aren't "perfect", DO NOT even think of being a parent. If you think there is a "test" for parenting, there is. Children will test your patience every day.

So very well said! (big smile on my face)

[salexander421]

Hi everyone! I was wondering if anyone on here has any experience with celiac genetic testing. I have a 4 year old who was diagnosed with celiac at 2 he is now 4. He's doing amazing! Since then we have had a daughter who is 3 mos. old. I'm considering testing to see if she has the genetic predisposition to be a celiac as well before she is old enough to start on solid food. I figure that if she does have the genetic markers we can have a heads up and if not then we know she can have gluten and be fine. any tips or info. will be helpful. I noticed that there are a few companies out there that do this testing without a doctors order. Is that a reliable way to go?

I think if I were in your shoes I would have the genetic testing done. Having a brother with celiac does put her in a higher risk category, I think she has something like a 1 in 22 chance of having celiac or something like that. But if for some reason she doesn't carry the DQ2 or DQ8 gene then she would have a very low chance of having celiac. You can't really rule it in or out with the genetic test but it can be a helpful piece of info for some people. My daughter had her's done at the GI and insurance covered it. They used labcorp which tests for both the alpha and beta subunits. I did my test through enterolab since my GI would not order it, they only test the beta subunits. There's another lab that you can order it through but they require a doctor's authorization, it's Kimball labs. Hope this helps!

[salexander421]

If you can't get the testing covered under insurance, the companies where you pay will all execute the test correctly. The question is what information you're looking for. Enterolab does B-chain only. They give you all the results but you won't know for sure about DQA*0505. Kimball and Prometheus test for celiac-specific alleles including some DQA chains like *0505 but I don't think they give you any info on the non-celiac genes.

Is DQA*0505 half of the DQ2 gene? I've heard of people having half the DQ2 gene which carries some risk for celiac but I've been unable to find any info on that. Thanks!

[lizard00]

I know for a FACT that my kids possess at least one of the celiac markers. I allow them to eat whatever they want. Personally (and it is my personal opinion !) I don't believe they need to be gluten-free because they have a genetic marker for something. It doesn't mean they will ever have celiac. In fact, there is some evidence showing that introducing gluten during a certain time frame actually helps decrease their chances of developing celiac. For the most part, my kids are by default gluten-free because that's the only thing I cook/bake. But they eat sandwiches, etc when they aren't home.

To answer Brendan12, IMO, to not have children because you have a predisposition to celiac is foolish. Maybe if you both carry the markers for cystic fibrosis or something along those lines, I could see it. But I opted not to have all of the screenings for both of my children. To me, it didn't matter. They were already my children, even if they were unborn. I would love them no matter what. And what mommida said is right on point-- the only test is patience!

[Skylark]

Is DQA*0505 half of the DQ2 gene? I've heard of people having half the DQ2 gene which carries some risk for celiac but I've been unable to find any info on that. Thanks!

Right, although "half of DQ2" is a touch misleading. It's the same protein as the *0501 in DQ2.5, but the *0505 gene is inherited with B1*0301 (DQ7) to make DQ7.5. There are a few celiacs with DQ7.5 and no other currently known risk gene like DQ2 or DQ8, so *0505 is considered to confer some small degree of risk. The problem with B-chain only testing is that you are not guaranteed to have *0505 if you're DQ7, especially if you are of Eastern European descent.

[maximoo]

My DD didn't show any signs till she was 11/12 & stopped growing. She ate wheat all her life prior. As for my 17 yo DS I tested him b/c of his sister & he has high antibodies too. (he also has a mild case of autism which there is a big debate whether celiac & autism are correlated) so as far I know he was symptomless. Anyway, I read/heard that if you have genetic markers its best if you go gluten lite--and since your baby hasn't started solids yet I would say don't give her anything gluten based until she is at least 15 mths old. Then try one thing at a time. Babies don't need wheat based products anyway. So even if you got her genetically tested she might not ever get celiac but since ur DS is gluten-free she would probably eat gluten-free at home anyway. And if she never shows any signs gluten won't bother her when she starts school etc. But you know what to look for & will be right on top it it.

[domesticactivist]

Kimball is a division of labcorp and does give all the info. They just send a summary, but once you get it you can call the genetic councilor and they will send the full results.

[M0Mto3]

My DD's GI doc told me that 38% of people have the gene that predisposes you to Celiac's. So, that is more than 1/3 people have the gene. That is a huge number compared to the people who actually end up with Celiac's. He would not do the gene testing on DD. My DH has type 1 diabetes, so chance are she has the gene anyway.

[salexander421]

I know for a FACT that my kids possess at least one of the celiac markers. I allow them to eat whatever they want. Personally (and it is my personal opinion !) I don't believe they need to be gluten-free because they have a genetic marker for something. It doesn't mean they will ever have celiac. In fact, there is some evidence showing that introducing gluten during a certain time frame actually helps decrease their chances of developing celiac. For the most part, my kids are by default gluten-free because that's the only thing I cook/bake. But they eat sandwiches, etc when they aren't home.

I agree, I wouldn't put my children on a gluten free diet just because they have the genetics.

[salexander421]

Right, although "half of DQ2" is a touch misleading. It's the same protein as the *0501 in DQ2.5, but the *0505 gene is inherited with B1*0301 (DQ7) to make DQ7.5. There are a few celiacs with DQ7.5 and no other currently known risk gene like DQ2 or DQ8, so *0505 is considered to confer some small degree of risk. The problem with B-chain only testing is that you are not guaranteed to have *0505 if you're DQ7, especially if you are of Eastern European descent.

Thank you! This is the info I've been looking for