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

MyMississippi

Recommended Posts

MyMississippi Enthusiast
MyMississippi
Posted

Hi folks,

I am weary of sitting at this computer researching everything on Celiac disease :P I've got a LIFE ---- I need to be living it . HA !

But I am such the CURIOUS person----" Leave no stone unturned," so to speak --------

So, those of you who have already done the research on the gene testing,---- tell me what value is it in determining Celiac disease ????

Thanks for your time and input :)

------------------------GO AWAY FAY------ We've had enough rain, already ! ! ! ! :o

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

Celiac.com Sponsor (A8-M):


ShayFL Enthusiast
ShayFL
Posted

It does NOT diagnose Celiac. It only can show a genetic propensity. I had it done because I wanted to know for myself and if I had a gene I could have passed on to my daughter. I do not have the recognized U.S. celiac genes. I have 2 genes recognized by some other countries and Enterolab as being gluten sensitivity genes. One being connected to neuro symptoms (my main symptoms). Since I am neg. with blood, refused biopsy, I did the gene test just to see if I had any real reason to cut out gluten. I did. So I did. And I am better for it. :)

MyMississippi Enthusiast
MyMississippi
Posted
  • Author

I know gene testing isn't used to diagnose celiac. BUT-----

Here's a quote from Dr. Peter HR Green, MD : "As celiac disease is in the genes,it will remain in the genes of families forever.... " my children are negative " is a common refrain. One should also add "for now" because Celiac disease can appear at any age in people who are negative in testing for the disease on previous occasions."

ShayFL Enthusiast
ShayFL
Posted

What he is saying is that if you have Celiac genes, then you can get the disease at anytime. Not that you WILL get the disease. Not everyone with the 2 recognized genes do. You can get tested so you know if you have the genes. For some it helps solidify their commitment to a gluten-free diet. It was for me.

crunchy-mama Apprentice
crunchy-mama
Posted
What he is saying is that if you have Celiac genes, then you can get the disease at anytime. Not that you WILL get the disease. Not everyone with the 2 recognized genes do. You can get tested so you know if you have the genes. For some it helps solidify their commitment to a gluten-free diet. It was for me.

I hope it is ok to ask a question on someone else's thread (I am new to this forum and it seems the etiquette is different at different forums- if I should start a new thread then I will) It is my understanding that you cannot have the disease if you don't have these genes, right? However, I have seen you and others talk about how some genes are not recognized here, but are other places- so how do you get all of them tested? Can any lab do this? I get a huge discount from a local lab that is affiliated w/ dhs work clinic.

For me I think it would be helpful to know if it is a possibility or not. Right now I keep telling myself it is all in my head. I think it would help me w/ keeping the diet as well and seems a good first step.

Archived

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

Go to topic listing
  • 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
      Celiac and allergic to common subs and adds in prepared foods

      By DAR girl · Posted

      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
      Disregarded

      By Scott Adams · Posted

      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
      Paying for my own Celiac screening at WalkInLab so a positive result doesn’t become part of my medical history

      By Oldturdle · Posted

      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
      Paying for my own Celiac screening at WalkInLab so a positive result doesn’t become part of my medical history

      By plumbago · Posted

      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
      Does Dailymed.nlm.nih.gov site have filters for gluten?

      By Scott Adams · Posted

      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...