Jump to content
  • 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

Genetic Testing Results


bahrbdoll

Recommended Posts

bahrbdoll Rookie

Ok, so I talked my gastro Dr. into doing genetic testing to rule out celiacs- Because of my gastric bypass he was not able to do the standard biopsy. I thought the gluten free diet was slowly improving symptoms. It's been over 4 mo. He said he was almost certain it wasn't celiacs- told me to eat what ever I wanted while we waited 2 weeks for the results. So, I thought ok it's been 4 mo. maybe if it's not celiacs my system would be "healed or better" so I had 15 pizza rolls- almost died over the next 4 days. took my stomach a week to get off the roller coaster ride. Who knows? no one I know! so this is what his nurse sent to me- Alleles detected: HLA DQ1 5 detected/less than 0.1xRelative Risk: Extremely low..........What the crap is that? Is it some confusing way to say it was detected but not enough to be positive? could some one help me w/ this. Thanks


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

You can't rely on gene testing for diagnosis. IMHO. If you ask for a copy of the tests and post them there are a couple folks with a great deal of knowledge that may be helpful with them.

How are you doing on the diet? Have you noticed any improvement? You said you thought you might have healed so you tried the pizza rolls. I take that to mean you were feeling better. Go back to the diet and then when symptoms stop ff you want to challenge the gluten-free diet what you need to do is to challenge it with something that is just gluten. I used cream of wheat and triscuits.

nora-n Rookie

Could be DQ 1 on one allele, and 5 on the other allele.

But that could mean that it was tested by Quest diagnostics, and the last one posting with quest results, had both the alpha and beta chains. And, there was half a celiac gene in the alpha chain.

I think quest would have reported that nowadays.

Well, turns out there are several DQ1 (Both 1 and 5 are DQ1) on the celiac or gluten free forums, and they are even more sensitive to gluten than the DQ2 and 8 celiacs once they react to gluten.

Dr. Hadjivassilou found that about 20% of his gluten ataxia patients were DQ1.

And, read this one:

https://www.celiac.com/articles/1101/1/Glut...ewey/Page1.html there is a percentage of diagnosed celaics wihtout DQ2 or 8, and certainly lots of people with non-celiac gluten sensitivity.

For the genes go to wikipedia and type in HLA DQ and there is a chart there.

nora

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Kirita posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Recovery from gluten challenge

    2. - annamarie6655 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Airborne Gluten?

    3. - trents replied to Mell2's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Rectal pain

    4. - Celiac and Salty replied to Mell2's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Rectal pain

    5. - Rogol72 replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Guinness, can you drink it?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,234
    • Most Online (within 30 mins)
      7,748

    AjaxandLynda
    Newest Member
    AjaxandLynda
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Kirita
      I’m wondering if anyone has had any experience with the gluten challenge. My teenager completed a gluten challenge over the summer, it ended up being 10 weeks although she stopped being consistent eating gluten after 6. Her previous endoscopy was negative but this past August it was positive after the gluten challenge. If you have done the gluten challenge, how long did it take you to feel back to normal? It took about two months before she got “glutened” again but now she’s having difficult coming back from that and has a lot of fatigue. I’m hoping someone has some advice! 
    • annamarie6655
      Hello everyone, I was on here a few months ago trying to figure out if I was reacting to something other than gluten, to which a very helpful response was that it could be xanthin or guar gum.    Since then, I have eaten items with both of those ingredients in it and I have not reacted to it, so my mystery reaction to the Digiorno pizza remains.    HOWEVER, I realized something recently- the last time I got glutened and the most recent time I got glutened, I truly never ate anything with gluten in it. But i did breathe it in.    The first time was a feed barrel for my uncle’s chickens- all of the dust came right up, and most of what was in there was wheat/grains. The second time was after opening a pet food bag and accidentally getting a huge whiff of it.    When this happens, I tend to have more neurological symptoms- specifically involuntary muscle spasms/jerks everywhere. It also seems to cause migraines and anxiety as well. Sometimes, with more airborne exposure, I get GI symptoms, but not every time.    My doctor says he’s never heard of it being an airborne problem, but also said he isn’t well versed in celiac specifics. I don’t have the money for a personal dietician, so I’m doing the best I can.    is there anyone else who has experienced this, or gets similar neurological symptoms? 
    • trents
      I was suffering from PF just previous to being dx with celiac disease about 25 yr. ago but have not been troubled with it since. Not sure what the connection between the two is of if there is one. But I do know it is a very painful condition that takes your breath away when it strikes.
    • Celiac and Salty
      I have dealt with proctalgia fugax on and off for a year now. It feels almost paralyzing during an episode and they have started lasting longer and longer, sometimes 20+ minutes. I was recently diagnosed with celiac disease and wonder if the 2 are related. I did request a prescription for topical nitroglycerin for my PF episodes and that has helped tremendously!
    • Rogol72
      Hey @Butch68, I also have dermatitis herpetiformis but don't suffer from it anymore. I used to drink Guinness too but I drink Cider now when out on social occasions. I assume you are in Ireland or the UK. If it's any good to you ... 9 White Deer based in Cork brew a range of gluten-free products including a gluten-free Stout. I'm not sure if they are certified though. https://www.9whitedeer.ie/ I haven't come across any certified gluten-free stouts this side of the pond.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.