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

DQB1*0302, but report says no alleles?


cracket

Recommended Posts

cracket Newbie

Hi,

I have scoured the forums looking for an answer. My endocrinologist tested me for various vitamins and did the HLA testing. I am deficient in all vitamins - A, E, D, B12, Folate, Iodine. This points to an absorption problem - not likely SIBO due to folate level being so low. The HLA testing came back, and I do not have either DQ2, DQ8 haplotypes. I did test positive for the DQB1*0302 allele. It appears I also have DQA1*01:02, DQA1*02:01, and DQB1*06:04. My Labcorp report says I was positive for DQ8, noting only the one allele. However, it says I am not positive for any of the risk alleles. That doesn't seem right. 

My endo encouraged me to go gluten-free. I'm ok with that. Just looking to see if this allele makes me more likely to have a gluten issue, or if I need to go down another path. I would appreciate any insight you guys can offer.  


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



Celiac.com Sponsor (A8-M):



kareng Grand Master
40 minutes ago, cracket said:

Hi,

I have scoured the forums looking for an answer. My endocrinologist tested me for various vitamins and did the HLA testing. I am deficient in all vitamins - A, E, D, B12, Folate, Iodine. This points to an absorption problem - not likely SIBO due to folate level being so low. The HLA testing came back, and I do not have either DQ2, DQ8 haplotypes. I did test positive for the DQB1*0302 allele. It appears I also have DQA1*01:02, DQA1*02:01, and DQB1*06:04. My Labcorp report says I was positive for DQ8, noting only the one allele. However, it says I am not positive for any of the risk alleles. That doesn't seem right. 

My endo encouraged me to go gluten-free. I'm ok with that. Just looking to see if this allele makes me more likely to have a gluten issue, or if I need to go down another path. I would appreciate any insight you guys can offer.  

Did they test you for Celiac? Please don’t go Gff until you have at least had the blood antibody testing

cracket Newbie
16 minutes ago, kareng said:

Did they test you for Celiac? Please don’t go Gff until you have at least had the blood antibody testing

They did. My antibodies were neg. The endo doesn't like those tests, and he prefers the DNA testing. His take is that I have one of the genes and am at least gluten intolerant. He is calling Labcorp to get a more detailed report, which we'll go over in a month. I'm just trying to make sense of it all. There's a lot of info hitting me at one time, and I'm trying to understand it all. 

kareng Grand Master

About 30% of people have a gene for Celiac but only about 1% actually have Celiac.

did he at  least do the endoscopy and get positive biopsies?  

Sounds like you might need to educate yourself or get another GI

https://www.cureceliacdisease.org/screening/

 

 

 

cracket Newbie
2 minutes ago, kareng said:

It's my endocrinologist. I'm aware of the screening process for a definite diagnosis. I understand I need to be on gluten for a biopsy. I went through a lot of this - minus the DNA testing - about 10 years ago. My question is whether this one gene, DQB1*0302, is a risk factor for Celiac or gluten intolerance in the absence of DQ8 combo. The report says I am DQ8 positive, but then says I have no risk. It seems to be conflicting info. I can't seem to find clear answers on the internet either. Thanks so much for your input!

 

 

 

 

cyclinglady Grand Master

Karen has given you excellent advice.  

Why are you seeing an endo?  Do you have Type 1 Diabetes or Autoimmune Thyroiditis?  Those are common with celiac disease.  

Going gluten free for life is a big game changer.  It would be nice to be sure you actually have celiac disease and not Crohn’s which can also cause malabsorption.  Exactly which tests were given.  For example, if my GI had not ordered the complete celiac panel, my diagnosis might have been missed.  

Like Karen, I would suggest a Gastroenterologist consult.  Your endo does not sound celiac-savvy at all.  He should stick to his specialty.  

http://www.cureceliacdisease.org/screening/

cracket Newbie

Yes. I have Hashimoto’s, among other issues. tTG was < 2, IGA was mid-normal range. I will likely follow up with a gastroenterologist.

The page you point me to does have  info on DNA testing. It mentions the gene pair for DQ 8. I have only one of the two - the beta chain 0302. I am trying to find out if you always have to have the DQ2 or DQ8 combo to have the potential to develop Celiac disease or if a partial on DQ8 also gave a higher risk. 

I’ll keep looking. Thanks for your input. 


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master
(edited)

If you use the search box, you can find other posts from members who do not have the common celiac genes yet have celiac disease.  It seems like there are genes that have not been identified.  There are always oddities.  Like those 23 and me tests. Very inaccurate.  Why?  They are only using data they have gathered.  If I recall most data is from the US and Europe.  So, the results are off.  The gene checking mania has not reached say, South America or Russia yet.  A  journalist tested them and had her identical sister take them and they got different results.  Their genes were the same but they got a different interpretation.  That is what is lacking.  Reading them.  

https://m.youtube.com/watch?v=Isa5c1p6aC0

I know, a gene test ordered by your doctor is not the same as those OTC home tests, but my point is that there is no “slam dunk” test to diagnose celiac disease.  

I am not gene savvy at all.  I do not even know that I have the genes.  But I do know I had the risk to develop it as I too, had Hashimoto’s when I was diagnosed with celiac disease.  I also know that I tested oddly.  I have never had a positive TTG or EMA on repeated tests.  Only a positve DGP IgA, yet biopsies revealed moderate to severe patches of damage.  Later, my intestine healed per a repeat biopsy and after a gluten-free diet.  

Make sure you had the complete panel.  Know that some celiacs are seronegative (like almost 10%).  It is why working with a GI is best.  He or she can look for the damage.  Your endo can not.  

Edited by cyclinglady
cyclinglady Grand Master

FYI.  Gene testing is usually used to rule out celiac disease — not to diagnose it.  In some cases, when an endoscopy can not be done, with positive antibodies, genes and testing a gluten-free diet, can help a doctor diagnose celiac disease.  But the gold standard, still, is obtaining intestinal biopsies.  Researchers have been looking at easier ways to diagnose celiac disease but have not been successful.  

I thought for sure my niece had celiac disease.  Turns out she has Crohn’s.  If you have GI issues, see a GI.  He or she can better interpret your gene results too. 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to Rebeccaj's topic in Super Sensitive People
      4

      symptoms.

    2. - knitty kitty replied to NCalvo822's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Newly Diagnosed

    3. - knitty kitty replied to Rebeccaj's topic in Super Sensitive People
      4

      symptoms.

    4. - Rebeccaj replied to Rebeccaj's topic in Super Sensitive People
      4

      symptoms.

    5. - knitty kitty replied to CeliacPI's topic in Related Issues & Disorders
      8

      Lymphocytic Colitis with Celiac


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,518
    • Most Online (within 30 mins)
      7,748

    Lois S
    Newest Member
    Lois S
    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

    • trents
      Should not be a problem except for the most sensitive celiacs. The amount of gluten that would get in the air from cooking alone has got to be miniscule. I would be more concerned about cross contamination happening in other ways in a living environment where others are preparing and consuming gluten-containing foods. Thinks like shared cooking surfaces and countertops. And what about that toaster you mentioned?
    • knitty kitty
      Hello, @NCalvo822, Blood tests for Celiac Disease test for antibodies our bodies make in response to gluten exposure.  These Tg IgA 2 antibodies mistakenly attack our own bodies, causing problems in organs and tissues other than just the digestive tract.  Joints can ache, thyroid problems or the pancreas can develop.  Ataxia is just one of over two hundred symptoms of Celiac Disease. Some people with Celiac Disease also make tTg IgA 6 antibodies in response to gluten exposure.  The tTg IgA 6 antibodies attack the brain, causing ataxia.  These tTg IgA 6 antibodies are also found in people with Parkinson's disease, though they may not have Celiac Disease.  First degree relatives (parents, siblings, children) of those diagnosed with Celiac should be tested as well.  Celiac is genetic.  Your mom and sister should be tested for Celiac, too!   Definitely a good idea to keep to a gluten free diet.  
    • knitty kitty
      @Rebeccaj,  When you smell toast or pasta cooking, that means that particles of that food are floating around in the air.  Airborne gluten can then be inhaled and swallowed, meaning the food particles get into your digestive tract.   If you're careful to avoid gluten and are still having symptoms, those symptoms could be caused by vitamin deficiencies.  
    • Rebeccaj
      ok thanks for your advice. But my question was what happens when someone you know in a house is cooking pasta or toast that's flour  Airbourne without eating.?
    • knitty kitty
      Do discuss this recent article with your doctors.  Thiamine Vitamin B 1 is important to intestinal health.  Thiamine deficiency can occur in Celiac Disease due to malabsorption.  Supplementing with a B Complex, Benfotiamine, and Vitamin D can help symptoms.   Thiamine deficiency aggravates experimental colitis in mice by promoting glycolytic reprogramming in macrophages https://pubmed.ncbi.nlm.nih.gov/39890689/#:~:text=Our mechanistic study revealed that,necessary to protect against colitis. "Conclusion and implications: Our study provides evidence linking thiamine deficiency with proinflammatory macrophage activation and colitis aggravation, suggesting that monitoring thiamine status and adjusting thiamine intake is necessary to protect against colitis."
×
×
  • Create New...