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Need Help With Genetics Please

mommyto3

By mommyto3
in Coping with Celiac Disease

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mommyto3 Contributor
mommyto3
Posted

I've got genetic results for both myself and my son but honestly, this stuff is flying right over my head. I was tested through Enterolab and though I understand that "two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity may be more severe" I'm wondering if someone can put this into laymen's terms for me.

Is it common to have two genes? Is the reaction really more severe? Does this mean my other two kids are likely to have this too? Is my son worse off because he has two of the same subtypes (5,5)? Totally clueless..........thanks!

Me:

HLA-DQB1 Molecular analysis, Allele 1 0501

HLA-DQB1 Molecular analysis, Allele 2 0604

Serologic equivalent: HLA-DQ 1,1 (Subtype 5,6)

Son:

HLA-DQB1 Molecular analysis, Allele 1 0501

HLA-DQB1 Molecular analysis, Allele 2 0502

Serologic equivalent: HLA-DQ 1,1 (Subtype 5,5)

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ravenwoodglass Mentor
ravenwoodglass
Posted

I don't know if what happened with me is something that would happen with all but I am a double DQ9 and yes the effects of having a double dose of that gene were horrific.

Skylark Collaborator
Skylark
Posted

Layman's terms? The Enterolab writeup is very alarmist, and is not based on any formal peer-reviewed research, only their "feel" for the genes. Please don't worry. Your son will be fine.

The test is for the type of one gene you have, called HLA-DQ beta. You are types DQ5 and DQ6. Your son is DQ5, DQ5. The only formal research on celiac/gluten intolerance is on DQ2 and DQ8, meaning we can't say much of anything about you and your son's DQ5 and DQ6 in relationship to gluten sensitivity. It does mean you and your son are at a relatively low risk for having the full-blown autoimmune intestinal damage. Gluten might still make you sick, and low risk is NOT the same as zero risk. As Ravenwoodglass points out, you can have very severe celiac irrespective of your HLA-DQ type.

There also is other published, peer-reviewed research showing that the DQ genes you had tested are only the tip of the iceberg and there are quite a few other genes involved in celiac/gluten sensitivity. The biggest risk for celiac is a celiac family member, so if you're diagnosed celiac or have found that you are gluten intolerant, your son should be tested or tried on the diet no matter what his HLA-DQ genes are.

mommyto3 Contributor
mommyto3
Posted
  • Author

Layman's terms? The Enterolab writeup is very alarmist, and is not based on any formal peer-reviewed research, only their "feel" for the genes. Please don't worry. Your son will be fine.

The test is for the type of one gene you have, called HLA-DQ beta. You are types DQ5 and DQ6. Your son is DQ5, DQ5. The only formal research on celiac/gluten intolerance is on DQ2 and DQ8, meaning we can't say much of anything about you and your son's DQ5 and DQ6 in relationship to gluten sensitivity. It does mean you and your son are at a relatively low risk for having the full-blown autoimmune intestinal damage. Gluten might still make you sick, and low risk is NOT the same as zero risk. As Ravenwoodglass points out, you can have very severe celiac irrespective of your HLA-DQ type.

There also is other published, peer-reviewed research showing that the DQ genes you had tested are only the tip of the iceberg and there are quite a few other genes involved in celiac/gluten sensitivity. The biggest risk for celiac is a celiac family member, so if you're diagnosed celiac or have found that you are gluten intolerant, your son should be tested or tried on the diet no matter what his HLA-DQ genes are.

Thanks for the info. I'm not sure about all the official diagnostic criteria for Celiac but I do know that I have an autoimmune response (something indicating autoimmune reaction was way elevated), I had pretty severe intestinal problems for 6 months before going gluten free, and I have pretty significant neuro symptoms (I can tell within 3 hrs if I've been glutened by the stabbing pin pains all over my body). My son gets really bad DH around his mouth when he eats gluten, he's skinny as a rake, looks anemic (we're having him tested), and has really crazy behavioural issues that disappear when gluten is eliminated. Sounds like Celiac to me so that's what I'm going with.

It just scared me to see that he's got two genes that are exactly the same (5,5). You hear so often in many circumstances that having two of the same for disease is really bad.......

mommyto3 Contributor
mommyto3
Posted
  • Author

Hey what happened? My post ended up inside of your quote?

Guess I screwed the post up :blink:

Skylark Collaborator
Skylark
Posted

If your son has DH he's celiac. It's great you found it so early. Taking him off gluten early in life is much more important as far as risk than trying to decipher genetics we hardly understand.

I really wouldn't worry about him having two copies of DQ5. As I said, we really don't know that much about the underlying genetics of celiac, particularly folks like you who aren't DQ2 or DQ8. HLA-DQ is probably the completely wrong gene for your family!

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    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      So, you had both and endoscopy with biopsy and a colonoscopy. That helps me understand what you were trying to communicate. No, no! It never occurred to me that you were trying to mislead me. It's just that we get a lot of posters on the forum who are misinformed about what celiac disease is and how it is diagnosed so I need some clarification from you which you were so gracious to give.
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    • trents
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