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 Sensitivity


sc875

Recommended Posts

sc875 Newbie

Hi,

I'm new to this forum...having browsed before but never posted. I have some type of intestinal problem, which the doctors thought was likely celiac (becuase I have autoimmune thyroid disease)

Initially, had a salivia IGA test for gluten through diagnos tech that was positive. I also had a fecal fat test that showed I was not properly absorbing or digesting fats and starches.

Then, I had antibodies (antitissue, antiendomysal and antigluten) tested through two different labs and they were all normal. I even had a small bowel biopsy which was normal.

So, we had concluded that I don't have sprue or gluten sensitivty.

But I don't know how to explain my symptoms. I have lost 15 pounds and am underweight despite a healthy diet, have stomach pains, diarrhea and am exhausted. My doctor is puzzled but says that I look healthy and since my weight is currently stable not to worry. I don't feel healthy and would like to be a normal weight for my height.

Could I still have gluten sensitivity? I found out about Dr. Fines work through this forum and am considering getting the test. I don't know how reliable it is and if others have found it helpful. It is expensive, and wonder if I should just try the diet?

Also,has anyone else had the salvia test from diagnos tech? I know these are many questions...

Thank You.

I would appreciate any advice.


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



Celiac.com Sponsor (A8-M):



Guest jhmom

Hi sc875, welcome to the board!!! :)

I too had negative blood-work and biopsy. My biopsy showed patchy inflammation but my doc said it wasn't enough to be considered Celiac (they want to see villi damage before making a diagnosis.)

I also had a lot of the same symptoms as you and after I lost 40lbs my doc became concerned, that's when he began testing me for Celiac and when all the test came back he still thought I had IBS.

I eventually ordered a stool panel test from Dr. Kenneth Fine at Open Original Shared Link which is more sensitive than blood and cost me around $120.00. I received my results within a couple of weeks and they were positive. I immediately started a gluten-free diet and could tell a difference in the way I felt within a couple of days, the abdominal pain was gone!!!!

So to answer your question, YES you can still have gluten sensitivity even tho the tests are coming back negative. I would suggest ordering the test through Enterolab OR you could try the gluten-free diet for a couple of months to see if your health improves.

I hope you get some answers soon and feel better! :D

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
      132,211
    • Most Online (within 30 mins)
      7,748

    MogwaiStripe
    Newest Member
    MogwaiStripe
    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

    • 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.