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

Gluten Sensitive? Neg Test Results


birdie22

Recommended Posts

birdie22 Enthusiast

Could I still be gluten sensitive with few symptoms and normal test results?

About a year ago (about 6mos after the birth of my 2nd child) I started having daily heartburn. I attributed to hormone fluctuations. In Sept 2010 I had the Mirena IUD inserted and a month or so later started having severe bloating episodes a few times a month, I was also having cyclical headaches, extreme fatigue and canker sores. After about 9mos I had the Mirena removed thinking that it was causing these symptoms. A few months after removed the symptoms continued. The bloating seems to happen about once a week or 1-2x's every other week. The canker sores happen at least monthly. The bloating makes me look pregnant and I feel great discomfort right under my rib cage. The heartburn I notice most at the base of my throat. It isn't severe, but noticeable. Since the symptoms hadn't resolved I took up the issue with my GP. She had me do a 6wk trial of prilosec and an upper GI to rule out GERD and hernia. Prilosec corrected the heartburn, but not the bloating. Upper GI was normal. Had blood tests for liver profile, CA 125, anti-tTG IgA and IgA. All results were normal.

Anti-tTG IgA was <10 (reference range 0-19)

IgA was 221 (reference range 70-400)

Since those tests were normal but discomfort continued I had an abdominal CT done. Results were also normal (aside from a few incidental benign findings).

GP suggested a trial of elimination diet. She first had me do only chicken, rice, banana for a week then slowly add in veggies, meats, dairy, gluten, etc. Right now I am doing gluten-free, but have added in everything else.

Could I be gluten sensitive if only symptoms seem to be bloating that gets worse as day progresses and resolves overnight, plus monthly canker sores? My GI health is otherwise normal. I'm not constipated, nor do I have diarrhea. No cramping. No painful gas. Just stomach bloating that is visible and uncomfortable.


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



Celiac.com Sponsor (A8-M):



nora-n Rookie

The most common form of celiac nowadays is patchy celiac, and the ttg test is known to only be close to reliable with total villous atrophy. even then it misses 20% or more (depending on how hight the trhreshold in the lab is set) of those with severe celiac.

With patchy celiac, only 40% will test positive.

Now the newest test, the deaminated gliadin test, is much better at picking up patchy celiac.

chrissyinnj Apprentice

Also, I have read on several sites (plus my lab) now that the AGA (anti-gliadin antibody) is an indicator of gluten sensitivity (NCGS) You might want that test run as well.

My son's results were negative for the celiac tests and strong positive for the AGA. (He was back on gluten for 9 weeks when the test was run). The lab noted that it was an indicator of gluten sen and he may want to try a gluten free diet. btw- He had responded to the gluten-free diet before we decided to run the tests.

birdie22 Enthusiast

Thank you for those two suggested tests. I am assuming that as with the other tests I would need to have gluten in my diet at the time of testing?

nora-n Rookie

Yes you would still need to eat gluten, but the IgG versions of these antibodies often hang around much longer, up to a year. I can

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. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      30

      My journey is it gluten or fiber?

    2. - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Disaccharide deficient, confusing biopsy results, no blood test

    3. - jenniber replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Disaccharide deficient, confusing biopsy results, no blood test

    4. - Samanthaeileen1 replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      7

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

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

    • Total Members
      132,815
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • xxnonamexx
      Is there a digestive enzyme that helps build a healthier gut? I see people taking them but not sure what really works
    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
    • Samanthaeileen1
      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
×
×
  • 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.