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

Dq2 Positive/dq8 Negative


ftmomma

Recommended Posts

ftmomma Rookie

I'm new here, first post....please bear with me as I learn the ropes in the forum. Not sure if I'm posting this question in the right place, but hope someone checks it out :-)

Reader's Digest Version: I have not been feeling "right" since about 8 weeks after the birth of my baby (uncomplicated pregnancy and childbirth). GI issues, severe abdom. issues (2 ER visits), joint pain, peripheral neuropathy (hands/feet) and weight loss (25lbs in about 5 months).

Celiac panel was done twice. Both showed normal results. GI dr still wanted to do endoscopy. 1 in Dec and another in May. Both show white blood cell infiltration (patches in various parts) and inflammation. Then sent me for Genetic bloodwork. Tested positive for HLA - DQ2 and negative for HLA -DQ8. Have been gluten free since July 1 (while waiting for results) my waistline has decreased by 3 inches (and I haven't lost weight). Feel so much better already! (which I know should be more of an indication on what I should do even more so than test results)

Still waiting to get a call from my GI dr re: the genetic testing. He usually calls with reports after hours. I actually got the report from my primary care dr at an appointment this afternoon. She stated that since I only have 1 of the genes "I probably don't have Celiac because my initial antibody tests were negative". She didn't think it was necessary for my immediate family or my children to be tested, because I only have "1 of the genes".

Is this true??? How often or common is it that people with celiac would carry both the DQ2 and the DQ8? I realize that just beacuse someone may have the genes, it may not be a clear cut case that they also have Celiac. But if they have a gene, inflammation in small intestine and symptoms, why would she still be thinking it might be something else?

ok---so much for the short version- thanks for any info!


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



Celiac.com Sponsor (A8-M):



happygirl Collaborator

You don't need both genes to have Celiac. If you had neither gene, and negative tests, then Celiac could essentially be ruled out.

I think its a small percentage of Celiacs who have both genes.

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Skylark Collaborator

One copy of DQ2 or DQ8 confers some risk for celiac disease. No current genetic test gives a clear-cut result. There is a dosage effect, meaning the risk is higher with to copies of DQ2 or DQ8. Having no "celiac" genes doesn't even rule out celiac, as some folks on this board can tell you. We don't actually know all the genes involved. HLA-DQ is just the tip of the iceberg.

Your doctors need to rule out inflammatory bowel diseases if you don't have celiac antibodies. Those can cause inflammation and abnormal biopsies too, although I think the neuropathy and your response to a gluten-free diet is more suggestive of celiac (or gluten intolerance). Going gluten-free is actually helpful for a lot of GI problems, so they're taking a cautious approach since you got so sick. Keep right on eating gluten-free and let them make sure there are no other problems that need to be treated. :)

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - shirlane posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Is AG1 safe for Celiacs??

    2. - trents replied to MagsM's topic in Related Issues & Disorders
      24

      Inflammation and Menier’s disease link?

    3. - Zuma888 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Hypothetical question about antibodies

    4. - nataliallano replied to nataliallano's topic in Related Issues & Disorders
      5

      Meniers and celiac are they related

    5. - knitty kitty replied to nataliallano's topic in Related Issues & Disorders
      5

      Meniers and celiac are they related


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,231
    • Most Online (within 30 mins)
      7,748

    Brenda Held
    Newest Member
    Brenda Held
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • shirlane
      I need to supplement my vitamin intake and was told AG1 was a good product.  I checked their website and they claim to be gluten-free, but I see that barley is one of the ingredients.  If the product is gluten-free how can it safely contain barley?
    • trents
      @nataliallano, whatever else can be said, you need to get serious about eating gluten free. Lots of people with celiac disease are like you. We call them "silent celiacs". They have few or no GI symptoms and falsely assume no damage is being done to their body by continuing to consume gluten. Neurological damage is one of them.
    • Zuma888
      Good day, From browsing this forum, I've come to find out that even on a gluten-free diet, many people seem to take years for their antibodies to go down to normal levels, and also that hidden gluten could keep the levels from going down to normal indefinitely. Shouldn't that mean that a celiac person would have a high possibility of testing positive given that they had gone gluten free for less than 2 years or so, and especially if they had not been careful about cross-contamination or had cheat days? The criteria for the gluten challenge makes it seems like the possibility of false negative is high in general.
    • nataliallano
      Thanks Kitty for your guidance. I will do the test to see if I have nutrients deficiencies and at the same time re organize my diet to see if that helps with my vertigo and other symptoms.   
    • knitty kitty
      Yes, Vitamin D is frequently low in Celiac Disease and Meniere's both.  Ask for an Erythrocyte Transketolace test to check for thiamine insufficiency.  Diuretics can cause excess thiamine loss.  Benfotiamine is a form of thiamine that improves intestinal health.  Thiamine in the form TTFD (Tetrahydrofurfuryl Disulfide) helped improve my Meniere's syndrome.
×
×
  • Create New...