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Need Help With Genetic Test Results


wahmmy

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wahmmy Apprentice

We did the genetic tests on our two daughters, ages 5 and 2, with Enterolab. We just got the results back and they were the same for both daughters. I'm having trouble interpreting them despite all the info provided from the website link provided. Could you help me? Thanks!

Also, I take this to mean that I have at least one gluten sensitivity gene? My husband is the one with Celiac, diagnosed through blood work and a biopsy a couple of months ago. His father also has Celiac.

Should we test them further at this point? What about myself?

And the severity issue of immunological response -- does that mean that lymphoma and some of those other issues are still a risk even if it's not Celiac? (Because I'm taking it that they won't get Celiac with these results?) What about nutritional deficiencies? Are these not a risk if Celiac damage isn't being done? Is it just they may have bad symptoms but not the actual intermal damage? Sorry for all the questions!

Gluten Sensitivity Gene Test

HLA-DQB1 Molecular analysis, Allele 1 0301

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 7,9)

Interpretation Of HLA-DQ Testing: Although you do not possess the main HLA-DQB1 genes predisposing to celiac sprue (HLA-DQB1*0201 or HLA-DQB1*0302), HLA gene analysis reveals that you have two copies of a gene that predisposes to gluten sensitivity (any DQ1, DQ2 not by HLA-DQB1*0201, or DQ3 not by HLA-DQB1*0302). Having two copies of a gluten sensitive gene means that each of your parents and all of your children (if you have them) will possess at least one copy of the gene. 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.

For more information about result interpretation, please see Open Original Shared Link


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nora-n Rookie

There are some celiacs here with either of these genes. I think someone even asked about this comination recently.

ShayFL Enthusiast

Nora is right. There are dx'd Celiacs with this genetic makeup. What are your husbands genes? Since he is dx'd Celiac, if he doesnt have the 2 U.S. recognized Celiac genes, then it is a whole new ballgame for your children.

wahmmy Apprentice
Nora is right. There are dx'd Celiacs with this genetic makeup. What are your husbands genes? Since he is dx'd Celiac, if he doesnt have the 2 U.S. recognized Celiac genes, then it is a whole new ballgame for your children.

His dr. didn't do a genetic test on him. They dx through I guess other blood work and also the biopsy. His numbers were really high in the blood work, but I know they didn't do a genetic test on him. He's going to see about getting it done now so insurance can pay for it and we won't have to do enterolab with him. Since the girls are so young, we felt the genetic test would be best to start with them and if they didn't have anything, it wouldn't be an issue. Enterolab said that was the way to go as well. Now I wish we would have gone ahead and done a full panel on them b/c now it seems we need to.

I'd just like to know about them for sure before we ban it completely for them outside the house. It's going to be a big deal to my oldest regarding school snacks, parties, etc. and I don't want to force her to take special food to those things if it's not an issue for her yet. Otherwise, we are moving toward a gluten-free home and he is completely gluten-free. All meals we eat with him are gluten-free.

nora-n Rookie

If they are on a low gluten diet, the tests probably will be inconclusive. You really have to eat a lo of gluten for a long time for the tests to be very positive for ordinary celiac.

We keep reading about people getting ill after going "healthy" and starting to bake whole wheat bread and eating whole wheat stuff. Also, the Italians have the highest incidence of celiac , they eat a lot of pasta...

The genes only explain half of celiac.

The highest risk is having a family member with celiac disease.....

nora

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      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
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      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
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    • Scott Adams
      You don't need an official diagnosis to request a gluten-free diet in either a hospital or nursing home--this can be requested by anyone. The higher costs associated with existing conditions for life insurance is a reality, and regardless of your politics, it could become a reality again for health insurance in the USA. For many this could make health insurance unaffordable, thus, everyone who is undiagnosed should understand such potential consequences before they go the official diagnostic route. As mentioned, once it's on your medical record, it won't go away.
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