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

Non-celiac Gluten Sensitivity


Mom2Boys

Recommended Posts

Mom2Boys Newbie

I recently got the results back from my labs; the genetic tests rule out Celiac because the HLA-DQ2 and HLA-DQ8 markers are negative. Not sure what the HLA-DQB1 and HLA-DQA1 tests mean, but there were numbers listed with those test results. Does anyone know?

My anti-gliadin antibodies (IgG) were high, but my anti-gliadin IgA antibodies were negative. Do I still need to go gluten free? I haven't been able to talk with my doctor after the test results were back, but I'm really curious. I don't have many GI issues except I alternate between constipation and sudden urgency from one day to the next. My main complaint that I'm trying to find the cause for, is fatigue. I also have vague muscle aches, mostly in my upper legs and have brain fog. I am also hypothyroid if that means anything.

If anyone can help me here, I would really appreciate it! Thanks!


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

It would be very helpful if you could post the actual results and the reference ranges that were used for the tests.

If the antigliadin tests were positive then as far as I know that would mean that yes you should be gluten free. Also if these were Enterolab tests you can give the lab a call and they will be helpful with any questions you have.

Mom2Boys Newbie
It would be very helpful if you could post the actual results and the reference ranges that were used for the tests.

If the antigliadin tests were positive then as far as I know that would mean that yes you should be gluten free. Also if these were Enterolab tests you can give the lab a call and they will be helpful with any questions you have.

My tests were not through Enterolab, but were blood tests done through Quest. Here are the tests and their results and ranges:

Gliadin AB igG - 38 (> 17 U/mL Positive)

Gliadin AB IgA - 7 (<11 U/mL Negative)

HLA Typing:

HLA-DQB1 0202

HLA-DQB1 0602

HLA-DQ2 Negative

HLA-DQ8 Negative

HLA-DQA1 01

HLA-DQA1 02

Thanks for your reply!

momxyz Contributor

I would definitely call either Quest or Enterolab and get an interpretation....

in the meantime check out this article:

Open Original Shared Link

if I am reading this article correctly you are the DQ 2.2 subtype. The association of this subtype with celiac disease is low - about 1% of celiacs have this subtype according to this article. I will quote once sentence: "the 2.2 subtype does confer some immunity to gliadin, permitting celiac disease."

In other words, this subtype is associated with some production of antibody to gliadin, as your IgG results show. Where there's smoke there's fire. Why not try going gluten free and see if that helps you?

ravenwoodglass Mentor

You could also be IGA deficient would would produce a false negative with the IGA tests. You would need to ask your doctor for a total IGA to find that out.

no-more-muffins Apprentice

Sometimes trying a gluten-free diet is the only way to really know. All my tests were negative including sensitive stool testing from enterolab. I haven't done the gene testing. Even though all my tests are negative I know that gluten makes me sick. There could be a few explanations:

I could have a sensitivity to something other than gliaden

Test results are never 100% accurate, they make mistakes, something can happen to the sample etc.

I wouldn't take the gene information to completely rule out celiac, or at least gluten sensitivity. Just because MOST people have DQ2 or DQ8 that doesn't mean you CAN'T have another gene and still have a problem with gluten. They just dont' know that much about the whole gluten thing.

I think I'd give the gluten-free diet a try.

Mom2Boys Newbie

Thanks to everyone for the helpful information. I'm trying to eliminate gluten and I'm finding that some sources aren't so obvious. Trying to decipher the ingredients in some products is tricky. I know celiacs can feel very sick from just one crumb containing gluten, but I'm not sure if I have to be that strict or not. Guess time will tell.


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



Celiac.com Sponsor (A8-M):



frantastk Newbie

Your results sound very similar to my daughter's results. She had a negative ttg blood test, but positive antigliadin IGA. The ped GI has been leaning toward thinking she was celiac, so ran the gene test to decide whether to biopsy her or not. Her gene test came back negative. I don't have copies from the lab for the gene test yet (just got the call from the doc a couple days ago). We're going to put her on a gluten-free diet. Her main symptom is failure to thrive, with some very minor gi issues and stomach discomfort/aches (she's only 21 months old and doesn't really talk yet, so it's hard to tell sometimes). We have a family history of some gluten issues and lots of food allergies and intolerances, so we thought with our family history and her antigliadin antibodies it would be worth a shot to see if it helps her grow. The ped GI just says not celiac, lets pump her with a lot more calories. Our regular ped is a lot more open minded and wanted to just consider her celiac with the positive antibodies. I had a celiac panel done a couple weeks ago and my dr just called and said it was negative, but I'm going to go pick up copies of the lab report to see if my antibodies were elevated, too. I have to go gluten-free for my dd anyway since she's still nursing. I have IBS, anxiety and fatigue so I'm looking forward to seeing if gluten-free makes any difference for myself. I must say the diet does seem to have a pretty steep learning curve, but once we get the hang of it, it shouldn't be too bad.

p.s. totally just noticed that when you type g f, your message comes out saying gluten-free. Cool!

Mom2Boys Newbie
Your results sound very similar to my daughter's results. She had a negative ttg blood test, but positive antigliadin IGA. The ped GI has been leaning toward thinking she was celiac, so ran the gene test to decide whether to biopsy her or not. Her gene test came back negative. I don't have copies from the lab for the gene test yet (just got the call from the doc a couple days ago). We're going to put her on a gluten-free diet. Her main symptom is failure to thrive, with some very minor gi issues and stomach discomfort/aches (she's only 21 months old and doesn't really talk yet, so it's hard to tell sometimes). We have a family history of some gluten issues and lots of food allergies and intolerances, so we thought with our family history and her antigliadin antibodies it would be worth a shot to see if it helps her grow. The ped GI just says not celiac, lets pump her with a lot more calories. Our regular ped is a lot more open minded and wanted to just consider her celiac with the positive antibodies. I had a celiac panel done a couple weeks ago and my dr just called and said it was negative, but I'm going to go pick up copies of the lab report to see if my antibodies were elevated, too. I have to go gluten-free for my dd anyway since she's still nursing. I have IBS, anxiety and fatigue so I'm looking forward to seeing if gluten-free makes any difference for myself. I must say the diet does seem to have a pretty steep learning curve, but once we get the hang of it, it shouldn't be too bad.

Best wishes to you and your little one! I hope the changes are successful and help her gain. It's good you have several doctors helping to get her well. I'm reading labels, but finding I don't know what a lot of the stuff is. I've got to do more "homework" and maybe make a cheat sheet along to the grocery store until I have this down better. Good luck with everything!

Archived

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

  • 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. - Florence Lillian replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      results from 13 day gluten challenge - does this mean I can't have celiac?

    3. - cristiana replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      21

      Insomnia help

    4. - SilkieFairy replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      results from 13 day gluten challenge - does this mean I can't have celiac?

    5. - Lkg5 replied to Matthias's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Unexpected gluten exposure risk from cultivated mushrooms

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

    • Total Members
      133,353
    • Most Online (within 30 mins)
      7,748

    ace14219
    Newest Member
    ace14219
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

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

  • Posts

    • Florence Lillian
      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free.  I have a cupboard full of supplements that did not agree with me -  I just keep trying and have finally settled on Sports Research. I take NAKA Women's Multi full spectrum, and have not felt sick after taking 2 capsules per day -  it is a Canadian company. I buy both from Amazon. I wish you well in your searching, I know how discouraging it all is. Florence.  
    • catnapt
      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
    • cristiana
      Thank you for your post, @nanny marley It is interesting what you say about 'It's OK not to sleep'. Worrying about sleeping only makes it much harder to sleep.  One of my relatives is an insomniac and I am sure that is part of the problem.  Whereas I once had a neighbour who, if she couldn't sleep, would simply get up again, make a cup of tea, read, do a sudoku or some other small task, and then go back to bed when she felt sleepy again.  I can't think it did her any harm - she lived  well into her nineties. Last week I decided to try a Floradix Magnesium supplement which seems to be helping me to sleep better.  It is a liquid magnesium supplement, so easy to take.  It is gluten free (unlike the Floradix iron supplement).  Might be worth a try.        
    • SilkieFairy
      It could be a fructan intolerance? How do you do with dates?  https://www.dietvsdisease.org/sorry-your-gluten-sensitivity-is-actually-a-fructan-intolerance/
    • Lkg5
      Thank’s for addressing the issue of mushrooms.  I was under the impression that only wild mushrooms were gluten-free.  Have been avoiding cultivated mushrooms for years. Also, the issue of smoked food was informative.  In France last year, where there is hardly any prepared take-out food that is gluten-free, I tried smoked chicken.  Major mistake!
×
×
  • 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.