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

Celiac Gene Test - One Step Closer

JaneWhoLovesRain

By JaneWhoLovesRain
in Dermatitis Herpetiformis

Recommended Posts

JaneWhoLovesRain Enthusiast
JaneWhoLovesRain
Posted

I asked my PCP if he could test me for the gene last month. He did it without any questions. If I had known it was going to be that easy I would have asked him months ago. This morning I found out I tested positive for one of the celiac genes. He told me (through his secretary) if I'm not having any GI symptoms there is no need to see a GI doctor. He apparentely has not a clue my GI symptoms are minimal but skin and balance is where it all shows up on me.

Needless to say, I was overjoyed to hear the news (am I crazy to say that?). While it isn't a defiinite diagnosis I am one step closer. The problem with me is that I am the kind that DOES need a DEFINITE diagnosis for various reasons and that is going to be pretty hard to get without ingesting lots of gluten which I am not willing to do.

I guess my chances that I actually do have celiac are 1 in 30 which still makes it a long shot but I plan on making an appt with the celiac specialist and I'll see what he has to say about all of this. At least now I feel I have something concrete to give to him.

Jane

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

Celiac.com Sponsor (A8-M):


shadowicewolf Proficient
shadowicewolf
Posted

30% of the population (U.S?) has at least one gene. So while its entirely possible that you do not have it, it is also very possible you may develop it.

JaneWhoLovesRain Enthusiast
JaneWhoLovesRain
Posted
  • Author

Statistically wise it's a long shot that I have it but considering the rash I've had for almost a year (it's 95% gone after a flare up when I experimented with gluten in Sept/Oct) as well as other odd assorted problems throughout the years I think it is very possible. If it wasn't for the fear that a lot of gluten may posssibly give me vertigo I would do the gluten challenge in a heartbeat.

I have an appt in Jan with the celiac specialist. My plan is to eat a bit of gluten (a cookie or two a week) for about a month before the appt and maybe it will give me enough of a rash for a biopsy or at least for him to say it sure likes like dh to me. We'll see how it goes . . . .

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,175
    • Most Online (within 30 mins)
      7,748
    Chels22
    Newest Member
    Chels22
    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

    • Heatherisle
      Blood results

      By Heatherisle · Posted

      Daughter has started gluten free diet this week as per gastroenterologists suggestion. However says she feels more tired and like she’s been hit by a train. I suggested it could be the change to gluten free or just stress from the endoscopy last week catching up with her. Just wondering if feeling more tired is a normal reaction at this stage. I suppose it’s possible some gluten might have been present without realising. Have tried to reassure her it’s not going to resolve symptoms overnight
    • 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.
×
×
  • Create New...