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

Gene testing


MelissaNZ

Recommended Posts

MelissaNZ Apprentice

Hi, have seen some stuff about gene testing for celiacs online - is this something worth doing, and can anyone suggest a reputable company to go through (and takes samples from overseas - we're in New Zealand).

 

thanks, Melissa


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



Celiac.com Sponsor (A8-M):



squirmingitch Veteran

Open Original Shared Link

Gene testing is really used to rule out celiac disease. Something like over 30% of the population has the genes for celiac but only about 1% of those will ever actually have celiac so if you come up positive on the genetic test it only means you're the same as 1/3 of the population NOT that you have celiac disease. Save your money.

cyclinglady Grand Master

I am not sure if my insurance covers it, but I am considering it.  My kid has tested negative for celiac disease.  She will be tested every few years for life (even if symptom free), so genetic testing could allow her to opt out of the celiac blood panel.  But with my diagnosis and her Dad having gluten issues (15 years gluten free), plus strong autoimmune disorders on both sides, I bet she has the genes.   Pay out of pocket?  No.  She can tough out the needle stick!  

Squimingitch is right that it is used to exclude celiac disease -- not for diagnostic purposes.  

frieze Community Regular

i would be cautious in doing the gene testing "on the record", i would not want to give the insurance company reason to turn done testing in the future.  We know that the two genes tested for in the USA are NOT the only possible genes...

cyclinglady Grand Master

Thanks, Frieze!  Point well taken.  i guess I kept thinking of how awful her blood draws are for her.  She will have to tough it out.  

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,162
    • Most Online (within 30 mins)
      7,748

    Jean Kemling
    Newest Member
    Jean Kemling
    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

    • DAR girl
      Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats. 
    • Scott Adams
      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
    • 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/   
×
×
  • Create New...