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. - Mari replied to Jmartes71's topic in Related Issues & Disorders
      15

      My only proof

    2. - Rejoicephd commented on Jefferson Adams's article in Gluten-Free Cooking
      1

      Your Complete Gluten-Free Thanksgiving Plan: Recipes, Tips & Holiday Favorites

    3. - marion wheaton replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

    4. - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,421
    • Most Online (within 30 mins)
      7,748

    john rands
    Newest Member
    john rands
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Mari
      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
×
×
  • 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.