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

Gene Testing Dq 1,1


MommyL

Recommended Posts

MommyL Rookie

Here is the short version of my history:

- IBS for 10+ years

- Psoriasis

- some nero issues on and off with tingling/numbness, hotness in face, anxiety that comes.

- Extreme fatigue

-brother has confirmed celiac.

- All blood work negative.

-Enterolab positive for IgA

- Genetic testing through Lab Corp shows,

DQ 2 (DQA1 501/505, DQB1 02xx) Negative

DQ 8 (DQA1 03xx, DQB1 302) Negative

DQA1 0102

DQB1 0602

With the help of Nora I am DQ 1, 1 (Thanks Nora)

I tried a gluten-free diet for 8 weeks and seen no difference with my IBS and introduced it back just recently to see how I would feel. However I am scared that with the neurological gene that it is bad to eat any gluten? What do you think? Do I need to completely avoid all gluten my whole life?

Thank you so much for your thoughts.


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



Celiac.com Sponsor (A8-M):



cassP Contributor

Here is the short version of my history:

- IBS for 10+ years

- Psoriasis

- some nero issues on and off with tingling/numbness, hotness in face, anxiety that comes.

- Extreme fatigue

-brother has confirmed celiac.

- All blood work negative.

-Enterolab positive for IgA

- Genetic testing through Lab Corp shows,

DQ 2 (DQA1 501/505, DQB1 02xx) Negative

DQ 8 (DQA1 03xx, DQB1 302) Negative

DQA1 0102

DQB1 0602

With the help of Nora I am DQ 1, 1 (Thanks Nora)

I tried a gluten-free diet for 8 weeks and seen no difference with my IBS and introduced it back just recently to see how I would feel. However I am scared that with the neurological gene that it is bad to eat any gluten? What do you think? Do I need to completely avoid all gluten my whole life?

Thank you so much for your thoughts.

i WOULD. gluten is no good for u- especially if you've got a DQ gene- they're all Gluten Sensitivity Genes... even if u dont get a Celiac Diagnosis. your brother has Celiac tho- so i would be suspicious- at the very least- u know with a DQ gene- you should avoid it.

BUT if a Gluten Free diet hasnt helped your IBS YET- stick with it, AND also look at other possible culprits- esp. Dairy, and crosscontaminated grains, and sugary Gluten Free Baked Goods..... some also have problems with Soy, or nightshades, or legumes & beans- i personally have to avoid many of these to not have gut symptoms.

they're are A LOT of smart people on here who can guide u even more!

dont give up on gluten free- seriously you're headed in the right direction

Skylark Collaborator

I tried a gluten-free diet for 8 weeks and seen no difference with my IBS and introduced it back just recently to see how I would feel. However I am scared that with the neurological gene that it is bad to eat any gluten? What do you think? Do I need to completely avoid all gluten my whole life?

Thank you so much for your thoughts.

Don't sweat the genetic tests. Nobody except perhaps someone with double DQ2.5 needs to go off gluten for life based on only HLA-DQ results. The much more convincing thing for you is that people with a first-degree relative with celiac have a 1 in 20 chance of having it themselves.

Eight weeks is not long enough on the diet for anything but gut problems and I'm sorry to hear that it hasn't helped your IBS. Are you being really strict and did you also drop dairy?

What I'd suggest if you think the neuro symptoms might be gluten related based on your enterolab anti-gliadin IgA is to stick to the diet for at least six months. Since you have neuro symptoms and anxiety, you should have your B12 levels tested and look into supplementing with sublingual methyl-B12 (methylcobalamin). Eight weeks is not long enough for nerve damage to heal and you also have to be exceedingly strict with the diet if you suspect neuro. If you go six months strict and the diet is still doing nothing, you're probably not gluten intolerant.

MommyL Rookie

Thank you for your responses.

Skylark,

I was off dairy and soy (strict) for 6 months while I was nursing my daughter as she had MSPI and then again 2 years later for another 6 months while I was nursing my son. I have to say that while I was on the strict dairy/soy free diet that I didn't see an improvement as well. I have also tried cutting out fructose as my GI doctor did a testing showing that I had fructose malabsorption.

It is all so frustrating with the IBS, I have tried several different probotics, digestive enzymes, supplements, have had two colonscopies, endoscopy, food IgG intolerance and food IgE allergy testing, yeast overgrowth..etc you name the test I have had it the last 10 years.

Sometimes I wish I could just find something other than you just have "IBS", live with it.

Skylark Collaborator

With the fructose malapsorption, did you cut out fructans as well as fructose? My mom has that and she cannot eat things like onions, asparagus, brown rice, or whole wheat. Onions are particularly hard for her to digest. She would not be well if she cut out only fructose and left the fructans in her diet.

MommyL Rookie

With the fructose malapsorption, did you cut out fructans as well as fructose? My mom has that and she cannot eat things like onions, asparagus, brown rice, or whole wheat. Onions are particularly hard for her to digest. She would not be well if she cut out only fructose and left the fructans in her diet.

I have not tried to cut out fructans, but I think that would be a great idea as I was recently doing some reading on that. Thanks for the insight! I appreciate your thoughts.

Archived

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

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,194
    • Most Online (within 30 mins)
      7,748

    Eliana123
    Newest Member
    Eliana123
    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

    • xxnonamexx
      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
×
×
  • 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.