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
cracket
Posted

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
kareng
Posted
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
cracket
Posted
  • Author
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
kareng
Posted

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
cracket
Posted
  • Author
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
cyclinglady
Posted

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
cracket
Posted
  • Author

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
cyclinglady
Posted

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.  

cyclinglady Grand Master
cyclinglady
Posted

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. 

Archived

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

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


  • Member Statistics

    • Total Members
      126,198
    • Most Online (within 30 mins)
      7,748
    Westshad
    Newest Member
    Westshad
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.2k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Celiac Maybe a Possibility?

      By trents · Posted

      Because you have significantly reduced your gluten intake over a considerable amount of time, it is likely that you will test negative on the antibody tests. However, if the $112 for the Quest test is not a burden, it wouldn't hurt to try. It tests for total IGA (to ascertain if you are IGA deficient) and tTG-IGA. If total IGA is deficient, it can result in false negatives in other IGA tests. The tTG-IGA is the single most popular test ordered by physicians. The Quest test is not a complete celiac panel by any means (refer to the linked article above) but it might be a good place to start. Personally, I think you know enough to conclude that you need to get serious about avoiding gluten, whether you have celiac disease or NCGS. Human nature being what it is, however, many people seem to need an official diagnosis of celiac disease in order to stay on the bandwagon. Otherwise, they seem to rationalize cheating on the gluten-free diet. And there is this misconception out there that NCGS is inconvenient and uncomfortable but not harmful so it's okay to cheat. The more we learn about gluten-related disorders the more they seem to not fit into our neat little black and white categories. By the way, celiac disease is not a food allergy. It is classified as an autoimmune disorder.
    • More2Learn
      Celiac Maybe a Possibility?

      By More2Learn · Posted

      These responses are all extremely helpful, ty.  Really good reminder about omega 6.  I also know I'm low in zinc; I took the zinc test where I drank it on a spoon and couldn't taste it.  To that end, I try to eat a lot of oysters.  I do think it would be a good idea to get the blood test.  Two questions: 1-  Is there any reason you wouldn't recommend that I just buy and take a test like this as a first step? 2- I've been somewhat gluten free since ~Jan 2023 (technically organic, gluten free, soy free, light on dairy).  I eat a lot of meat, vegetables, rice -- a common breakfast for me is three eggs and a sausage link, and I can't remember the last time I had a sandwich or bread.  However, because in my mind I didn't think I had an allergy, and I more was doing gluten free to avoid artificially iron-enriched foods, I do make exceptions.  I'll eat breaded calamari.  When my Dad visits, I split mozzarella sticks with him because he loves them so much.  I'll eat the "gluten sensitive" items at a restaurant and if they asked, "is cross contamination ok?",  I always said yes.  Based on that, since I never probably fully eliminated gluten, but it was significantly reduced... is that good enough to take the blood test?  Because the pain in my side gets SO bad (really sometimes I can't function, and I absolutely thought I was dying), I am hesitant to do the gluten challenge.  Would it make sense to take the test, and if it's negative, then consider doing the challenge and seeing if I can deal with eating the bread every day? Thanks again!
    • Yaya
      Muscle Twitching

      By Yaya · Posted

      For me, with osteoporosis, Celiac and more than 1 heart condition, the slower, safer route is preferable.  I'm on 5 meds per day.  Too much of anything can disturb absorption of this or that. Have a Happy Thanksgiving.  I'm gone for a few days.  
    • Wheatwacked
      Muscle Twitching

      By Wheatwacked · Posted

      It took me 2015 to 2021 at 10,000 IU a day to get to 80 ng/ml. In 2019 I was still only 47 ng/ml The highest it has reached is 93.  Tested every 3 months.     While a one time massive dose can be used to quickly raise vitamin D levels, its effects only last three months.  Because vitamin D is stored in fat, an obese person would require more to raise blood level.     Effect of High-Dose Vitamin D Supplementation on Volumetric Bone Density and Bone Strength   The point of higher vitamin D is for the mental health and immune system requirements.  Also this study included supplementing calcium.  "Research suggests that women with low levels of vitamin D have a higher risk of breast cancer. Vitamin D may play a role in controlling normal breast cell growth and may be able to stop breast cancer cells from growing." This information is provided by Breastcancer.org. https://www.breastcancer.org/risk/risk-factors/low-vitamin-d-levels Higher vitamin D levels have been consistently associated with reduced risks of colorectal cancer https://www.cancer.gov/about-cancer/causes-prevention/risk/diet/vitamin-d-fact-sheet  
    • RMJ
      Contaminated cooking oils

      By RMJ · Posted

      You can search here for certified gluten free olive oil GFCO productfinder
×
×
  • Create New...