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

New And Need Help

Ziva

Recommended Posts

pricklypear1971 Community Regular
pricklypear1971
Posted

I always thought I was a little weird :)

We haven't done any genetic marker testing on anyone else. I'm not really sure it would be worth it. I only did it because the GI doc said no to Celiac and he wanted it to rule it out further. I guess in his mind it gave him one more reason to say no. Thanks for adding the links, but they were greek to me! My husband was diagnosed as Celiac as a toddler, but until it was mentioned for me, we didn't know you don't outgrow it. His tests came back negative, but he is gluten free with me.

Private message skylark with a link to your results. Ask her to look at them.

So, your daughter was dx'ed by bloodwork/biopsy - and she probably has her Dad's genes in the mix (if they ever look).

Many ai diseases have a positive reaction to gluten-free, along with celiac disease. I don't think the particular Celiac test you were + on has reasons for false + (it's ver specific). but, keep googling about that test and you may find it. Or, you can be Celiac. The genes they look for are the most common in the west - not the world - and Celiac research in other populations are showing different gene involvements. Plus, the gene itself isn't the deciding factor since not all people with the genes have celiac disease - something activates them - and they don't know what it is or how to test for it.

Good news - gluten-free helps you. So by all means keep doing it. And if your hematologist dx'ed you celiac don't fight it (especially since the diet helps) unless other issues keep popping up. And then, it may be "in addition to" issues re: Celiac.

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

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing

  • 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. knitty kitty
      - knitty kitty replied to Thoughtidjoin's topic in Gluten-Free Foods, Products, Shopping & Medications
      5

      Dried Chickpeas

      Hello, @Aretaeus Cappadocia, My favorite source of B12 is liver. 😺 I react to nutritional yeast the same way as if I were glutened. Casein, a protein in dairy, and nutritional yeast have protein segments that match certain antigenic protein segments in gluten. The proteins in rice, corn (maize), and chicken meat have them as well. Some pe...
    2. trents
      - trents replied to ainsleydale1700's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Confused about HLA-DQ Celiac gene test result

      Welcome to the celiac.com community, @ainsleydale1700! First, it is very unlikely, given your genetic results, that you have celiac disease. But it is not a slam dunk. Second, there are some other reasons besides having celiac disease that your blood antibody testing was positive. There are some diseases, some medications and even (for some people...
    3. ainsleydale1700
      - ainsleydale1700 replied to ainsleydale1700's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Confused about HLA-DQ Celiac gene test result

      Thank you, that is helpful!
    4. Scott Adams
      - Scott Adams replied to ainsleydale1700's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Confused about HLA-DQ Celiac gene test result

      HLA testing can definitely be confusing. Classic celiac disease risk is most strongly associated with having the full HLA-DQ2 or HLA-DQ8 heterodimer, which requires specific DQA1 and DQB1 genes working together. Your report shows you are negative for the common DQ2 and DQ8 combinations, but positive for DQB102, which is one component of the DQ2 pair. On its...
    5. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to Thoughtidjoin's topic in Gluten-Free Foods, Products, Shopping & Medications
      5

      Dried Chickpeas

      I agree with your post and have had similar experiences. I'm commenting to add the suggestion of also using nutritional yeast as a supplement. It's a rich source of B vitamins and other nutrients, and some brands are further supplemented with additional B12. I sprinkle a modest amount in a variety of savory recipes.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,436
    • Most Online (within 30 mins)
      7,748
    LuluPanda
    Newest Member
    LuluPanda
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      Dried Chickpeas

      By knitty kitty · Posted

      Hello, @Aretaeus Cappadocia, My favorite source of B12 is liver.  😺 I react to nutritional yeast the same way as if I were glutened.  Casein, a protein in dairy, and nutritional yeast have protein segments that match certain antigenic protein segments in gluten.  The proteins in rice, corn (maize), and chicken meat have them as well.   Some people with Celiac might tolerate them without a problem, but I need to avoid them.  For those still having symptoms, cutting these out of our diet may improve symptoms. 
    • trents
      Confused about HLA-DQ Celiac gene test result

      By trents · Posted

      Welcome to the celiac.com community, @ainsleydale1700! First, it is very unlikely, given your genetic results, that you have celiac disease. But it is not a slam dunk. Second, there are some other reasons besides having celiac disease that your blood antibody testing was positive. There are some diseases, some medications and even (for some people) some foods (dairy, the protein "casein") that can cause elevated celiac blood antibody test scores. Usually, the other causes don't produce marginally high test scores and not super high ones. Having said that, by far, the most common reason for elevated tTG-IGA celiac antibody test scores (this is the most common test ordered by doctors when checking for celiac disease) is celiac disease itself. Please post back and list all celiac blood antibody tests that were done with their scores and with their reference ranges. Without the reference ranges for negative vs. positive we can't tell much because they vary from lab to lab. Third, and this is an terrible bum steer by your doc, for the biopsy results to be valid, you need to have been eating generous amounts of gluten up to the day of the procedure for several weeks.  Having said all that, it sounds most likely that you have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. The two share many common symptoms but NCGS is not autoimmune in nature and doesn't damage the lining of the small bowel. What symptoms do you have? Do you have any blood work that is out of norm like iron deficiency that would suggest celiac disease?
    • ainsleydale1700
      Confused about HLA-DQ Celiac gene test result

      By ainsleydale1700 · Posted

      Thank you, that is helpful! 
    • Scott Adams
      Confused about HLA-DQ Celiac gene test result

      By Scott Adams · Posted

      HLA testing can definitely be confusing. Classic celiac disease risk is most strongly associated with having the full HLA-DQ2 or HLA-DQ8 heterodimer, which requires specific DQA1 and DQB1 genes working together. Your report shows you are negative for the common DQ2 and DQ8 combinations, but positive for DQB102, which is one component of the DQ2 pair. On its own, DQB102 does not usually form the full DQ2 molecule most strongly linked to celiac disease, which is likely why your doctor said you do not carry the typical “celiac genes.” However, genetics are only part of the picture. A negative gene test makes celiac disease much less likely, but not absolutely impossible in rare cases. More importantly, both antibody testing and biopsy are only reliable when someone is actively eating gluten; being gluten-free for four years before testing can cause both bloodwork and intestinal biopsy to appear falsely negative. Given your positive antibodies and ongoing symptoms, it may be reasonable to seek clarification from a gastroenterologist experienced in celiac disease about whether proper gluten exposure was done before testing and whether additional evaluation is needed.
    • Aretaeus Cappadocia
      Dried Chickpeas

      By Aretaeus Cappadocia · Posted

      I agree with your post and have had similar experiences. I'm commenting to add the suggestion of also using nutritional yeast as a supplement. It's a rich source of B vitamins and other nutrients, and some brands are further supplemented with additional B12. I sprinkle a modest amount in a variety of savory recipes.
×
×
  • 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.