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

Not Sure What To Do Now?


sharkmom

Recommended Posts

sharkmom Apprentice

I went a saw a preventative MD that ran a bunch of tests. One was a saliva test that showed positive gluten. When I saw my endo, I asked her to run a celiac panel but told her I had been gluten-free for 2-3 wks. She sd it would show positive for celiac, if I had it, because antibodies would still be present. Got my results and showed negative. Now, I am doubting reliability of the results and wished I had eaten gluten beforehand. Dont know if I should eat gluten and get retested or just go in for a biopsy. I cant say that I felt bad to begin with and that I feel better since going gluten-free. I tried to get more info on what the saliva test and what it exactly means but havent had much luck. Preventative md just said I am gluten intolerant and shouldnt eat it. Any advice what to do now?


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



Celiac.com Sponsor (A8-M):



Lisa Mentor

Could you post your results of your blood work here. Many can help you interpret you results.

Here is some information on gluten intolerance:

Open Original Shared Link

A preventative MD is a term I'm not familiar with.

sharkmom Apprentice
Could you post your results of your blood work here. Many can help you interpret you results.

Here is some information on gluten intolerance:

Open Original Shared Link

A preventative MD is a term I'm not familiar with.

Sorry, meant Preventive Medicine Dr. The results:

Transgluteminase IgA Autoantibodies, result < 4.0 (<4.0 indicates negative)

Reticulin IgA autoantibodies, result <1:10, ref range <1:10

Endomyaial IgA, result <1:10, ref range <1:10

Gliadin IgG, result <10, ref range <10.0

Gliadin IgA, result <5.0, ref range <6.0

Lisa Mentor

Others are better with test results than I, but your results are certainly on the high side of negative. If you have symptoms consistent with a gluten intolerance and feel better on the gluten free diet, it is a good indicator that you have a gluten problem.

At this time, tests are not as accurate as we would like, but a positive dietary response can tell you a lot.

sharkmom Apprentice
Others are better with test results than I, but your results are certainly on the high side of negative. If you have symptoms consistent with a gluten intolerance and feel better on the gluten free diet, it is a good indicator that you have a gluten problem.

At this time, tests are not as accurate as we would like, but a positive dietary response can tell you a lot.

So, does that mean that it was ok that I was not eating gluten at the time? Do you think I would still show the antibodies after a couple of weeks?

gfb1 Rookie
Sorry, meant Preventive Medicine Dr. The results:

Transgluteminase IgA Autoantibodies, result < 4.0 (<4.0 indicates negative)

Reticulin IgA autoantibodies, result <1:10, ref range <1:10

Endomyaial IgA, result <1:10, ref range <1:10

Gliadin IgG, result <10, ref range <10.0

Gliadin IgA, result <5.0, ref range <6.0

since all the ab's indicative of intestinal damage were of the 'IgA' variety and you had been off gluten for several weeks -- i might not expect the gliadin IgA/IgG to be positive. you MIGHT have tested positive for the others .... but, impossible to say.

further, while only a small percentage of the population are IgA low/deficient -- you MIGHT be, therefore your results are not definitive.

from a previous post:

approx 1:700 caucasians in the US are IgA deficient, there is a family history/heritable component... but, its inheritance pattern is unclear.

among celiacs, the literature is highly variable depending on country of origin and sample size; but around 1:70 celiacs present as IgA deficient.

there is also a 3rd subcategory of marginally-deficient IgA patients (low... but, not deficient) for which there is little to no evidence that it is associated with celiac disease; and may have more to do with age-bias in those surveys.

take this pic to your doc, it might help.

Open Original Shared Link

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. - Scott Adams replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Guinness, can you drink it?

    2. - MogwaiStripe replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      15

      Gluten Issues and Vitamin D

    3. - Butch68 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Guinness, can you drink it?

    4. - trents replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      17

      Taking Probiotics but Still Getting Sick After Gluten – Advice?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,215
    • Most Online (within 30 mins)
      7,748

    toni tay
    Newest Member
    toni tay
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
×
×
  • 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.