Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Official Test Results


IChaseFrisbees

Recommended Posts

IChaseFrisbees Explorer

Hey everybody, when I was first getting tested for my various intestinal issues I did a stool test through enterolab that came back with...I think it was IGA of 24, and that's how I got on the whole gluten-free diet. So a month ago, about 3 or so months gluten free I finally got the gene testing done through Prometheus, and here were my results:

DQ2-, DQ8-.

According to the little chart, I have a <.01x chance of having Celiac. Can anyone attest to the accuracy of this test, the accuracy of that interpretation and tell me once and for all if I have Celiac, don't have Celiac or it's still a possibility??

Thank you so much for any help.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

Gene testing is in it's infancy and while it can be a part of the diagnostic picture it is far from conclusive. There are 7 other genes associated with celiac but most are not recognized as celiac genes in the US. There are firmly diagnosed celiacs that do not have either of those two genes. I am one of them. In the US my celiac gene would have given me a diagnosis of RA not celiac. I am someone who was really glad to be firmly diagnosed before I had gene testing done.

nora-n Rookie

You could ask them WHAT genes you have.

You could have ordered the gene test through enterolab, it si actually done by the American Red Cross. They always give you exactly which beta chain you have.

Thing is, that 6% of celiac have just half a gene, and those are not reported on such a + or - test.

For DQ2, the half gene is the 05* alpha chain, and that would probably show up as DQ7 on the Enterolab test, and as a 05* alpha gene on the Prometheus test see thread https://www.celiac.com/gluten-free/index.php?showtopic=54018 where someone tested positive for half a gene.

Usually they do not test for it.

I am negative too. Trying to get a better test.

IChaseFrisbees Explorer
You could ask them WHAT genes you have.

You could have ordered the gene test through enterolab, it si actually done by the American Red Cross. They always give you exactly which beta chain you have.

Thing is, that 6% of celiac have just half a gene, and those are not reported on such a + or - test.

For DQ2, the half gene is the 05* alpha chain, and that would probably show up as DQ7 on the Enterolab test, and as a 05* alpha gene on the Prometheus test see thread https://www.celiac.com/gluten-free/index.php?showtopic=54018 where someone tested positive for half a gene.

Usually they do not test for it.

I am negative too. Trying to get a better test.

Hmm, I stupidly left my results at home and now I'm back at school, but according to the test those are my genes, the DQ2- and DQ8-. Is that just saying I don't have the DQ2 or DQ8, or is DQ2- a different gene than DQ2?

and @ Ravenwood, the test had 8 genes on it, along with their individual likelihood of causing Celiac, are you saying there are 7 more than the 8? I'll be able to post exactly what the 8 were this weekend when I get the results from my parent's house.

The way my doctor described Celiac is that not everyone who has the gene has Celiac, but everyone who has Celiac has the gene, is that correct? So if I don't have the gene it's impossible for me to have Celiac, right?

Yet I have DQ2- and DQ8-...Are those segments of the DQ2 and 8 gene?

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,159
    • Most Online (within 30 mins)
      7,748

    Laz
    Newest Member
    Laz
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Oldturdle
      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!
    • plumbago
      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.
    • Scott Adams
      PS - I think you meant this site, but I don't believe it has been updated in years: http://glutenfreedrugs.com/ so it is best to use: You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • trents
      A lot to think about here. Does anyone have any recommendations for third party laboratories that will do full panel celiac screens private pay in the U.S.?
    • 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.
×
×
  • Create New...