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

Which Tests Should I Order?


Segnaro

Recommended Posts

Segnaro Newbie

Hello! This is my first post on this board. My brother and sister have recently beed diagnosed with Celiacs. Their docs suggested I get tested too. My health insurance is terrible and my doc doesn't seem to think I need testing because I don't have any major symptoms. So, I've been reading through the posts here and I see a lot of you go straight to enterolab. I checked out their website and saw that you can do it all yourself - great! The only thing is, I don't have a clue which tests to order. If I just wanted one or two tests to see if I am genetically predisposed to this disease, which ones should I order, and do you think that would be enough?

Thanks so much in advance for your responses. :)


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



Celiac.com Sponsor (A8-M):



GlutenWrangler Contributor

If you just want to know your genetics, get the genetic testing for celiac disease/gluten sensitivity. I think it is $149. If you want to know the genetics and if you are currently creating an immune response to gluten, get the complete panel with the gene test. I think that one is $369. It is a good idea to get the complete test becuase even if you are not exhibiting any symptoms, you could be harboring active celiac disease or gluten sensitivity. But it's your call. I hope this helps.

-Brian

kristi Rookie

Will the complete panel and the gene test work for me? I have now been gluten free for a year but would still like to know more. Will that mess up the tests completely?

Kristi

tarnalberry Community Regular

A year is right at the end of their cutoff - at the end of the range at which they say they can still detect antibodies. It may or may not show up given how long you've been gluten free. Just doing the gene test won't tell you if you have active celiac, but if you could develop it. But that knowledge, in combination with knowing whether or not the diet has helped you, should give you additional confirmation.

Viola 1 Rookie
Will the complete panel and the gene test work for me? I have now been gluten free for a year but would still like to know more. Will that mess up the tests completely?

Kristi

The diet wouldn't change your genetic code, so the gene test should work. However, it would change the outcome of the blood tests. So the complete panel probably would not be accurate.

GlutenWrangler Contributor

If you want to know if you have active celiac disease, you need to start eating gluten for the test to be accurate. I'm not sure for how long, but at least 2 weeks. If you don't want to do that, just get the gene test. Chances are if your siblings have celiac disease, you also have it. Good luck,

-Brian

kristi Rookie

THANKS everyone for your help!!! My original diagnosis showed up with high IgG and low levels of adrenal antibodies in my blood work from a gland specialist in a hospital. I was so sick back then and was seeing a zillion doctors. I felt like I was dieing and all of them weren't coming up with anything. I kept asking where I could go for more tests and a different kind of specialist with what they found in the bloodwork but they just said no more tests, just don't eat wheat and see your GP. My general practioner said she had never heard of such a thing, she had no idea how to read the test results and ran to her computer in the hall shortly followed by bringing in a nurse for "dietary advice". The nurse said, "Now it's important not to eat flour." That was it. Oh my gosh there is so much more to it. I had learned more than that the evening before on the very first hit on the internet. They sent me out the door. I went back to the hospital pleading for direction and they aimed me to an allergy clinic were I spent hundreds and hundreds $$$ (on top of the thousands already spent) just for me to finally learn there is a difference between intolerances and allergies as this was showing nothing. They only tested for allergies not intollerances at that clinic. Nobody seems to be very educated in this. I sure this isn't a unique experience. I just want to know if I have it or not. I'm afraid to experient and go backwards without a good doctor in the wings. Is there a special clinic SOMEWHERE...ANYWHERE in the country I can go to that knows what they are doing? I'd travel anywhere and relocate to get this figured out! Thanks for your ideas.


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



Celiac.com Sponsor (A8-M):



GlutenWrangler Contributor

Actually there is a special clinic. It's called the Celiac Disease Center at Columbia University in New York. Here's the website: Open Original Shared Link.

-Brian

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,163
    • Most Online (within 30 mins)
      7,748

    Estee
    Newest Member
    Estee
    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...