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

What Is The Best Test To Dermine Celiac Disease?


chucksusanandgrace

Recommended Posts

chucksusanandgrace Rookie

I thought I remember reading somewhere that there is a test on your gene that can determine if you have celiac disease. I am thinking I want to go back to gluten-free, but I don't want to mess up any future testing.

For some reason I am thinking that a particular gene test is effective even if you have been doing a gluten-free diet.

Thank you again.

Susan


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



Celiac.com Sponsor (A8-M):



SaraKat Contributor

I had a blood test and an endoscopy. I didn't have the genetic blood test- it was an antibody one. I heard the TTG IGA is a good one for starters or ask for the celiac panel.

I think the genetic test would show if you have the gene for it, but you still may not have actual celiac disease.

I am new so I could be off.

ravenwoodglass Mentor

Enterolab can do testing for the antibodies but they don't diagnose celiac. However your body doesn't make antibodies to something it wants inside it. The best test in my opinion is the diet after all blood work and biopsies are done. Gene testing while interesting can not tell you for sure if you do or don't have celaic. For one thing most companies only test for 2 of the 9 associated genes and recent research is showing up to 27 more that are associated with celiac.

mushroom Proficient

The gene test, unfortunately, is like the breast cancer gene test. It can tell you if you have a predisposition to the disease, but not if you will get it. For example, I have the BRCA1 gene in my family (presume my mother had it though she was never tested - her sister had breast cancer too). My sister with the gene developed breast cancer- she may well have not, it just happened that she did. My sister without the gene developed breast cancer, it was just one of those spontaneous things apparently. I have not been tested (why bother?) and so far have not developed it. So having the gene does not mean you will get it.

So far the strongest tests for celiac seem to be the tTG, and endomysial antibodies (EMA) and the new deaminaded gluten peptide (DGP) tests. But even if all these tests are negative, (and they perform the total serum IGA to prove that you do produce antibodies - a lot of doctors don't) you may still have a gluten intolerance that is not measurable by any test, and if you quit eating gluten your symptoms may disappear. Many doctors will tell you that if you test negative you can eat gluten with impunity, but their tests are not that good. There are many gluten intolerances that their tests don't measure, and the only true test is to stop eating gluten and see if your symptoms improve. That is to say, do undertake the testing to see if you can get a diagnosis, but if you can't, try the diet and see if it helps - that is the ultimate test regardless of what the medical profession says. (I am undiagnosed :P )

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,166
    • Most Online (within 30 mins)
      7,748

    melindakathleen
    Newest Member
    melindakathleen
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • 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...