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

Are These Symptoms Gluten Related?


alihawk

Recommended Posts

alihawk Rookie

Hello everyone I have had the following symptoms on and off for a while, fatigue, headaches, blisters on side of tongue, cysts on ovaries, thyroid nodules, stiff or achy joints, constipation, bloating, peeling skin on toes.

the only constants are bloat and constipation. The others come and go never constant or permanent.

Many years ago, appox 10-15, I was tested for celiac and the only positive result was the IgG gliadin AB. All others were negative including biopsy. I was initaiily told I had celiac and get a biopsy when that was negative I was told nope I am not celiac. I had 8 years of severe constipation that's resulted in mega colon and colonic inertia. Essentially my colon was twice the diameter and the contraction of the peristalsis was ineffective I would go to the bathroom every 20 days give or take.

I don't believe that they even offer the IgG gliadin AB blood test anymore cause all the labs I have had for celiac do not include this test as it resulted in many false positives from what I read.

Any thoughts on the symptoms and the lab work is appreciated.

Thanks for reading and your input.

Alison


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



Celiac.com Sponsor (A8-M):



nvsmom Community Regular

There is a good chance that you have celiac disease and the doctors did not realize that the biopsy can miss as many as 20% of all celiacs, especially if it was not well done.  Your symptoms could be celiac disease so if you are eating gluten, you may as well get tested... with the newer tests.  ;)

 

These are the tests:

  • ttG IgA and tTG IgG (tissue transglutaminase) - most common test
  • DGP IgA and DGP IgG (deaminated gliadin peptides) - newest tests
  • EMA IgA (endomysial antibodies) - similar to the tTG but tends to detect more advanced disease
  • total serum IgA _ a control test
  • AGA IgA and AGA IgG (anti gliadin antibodies) - older test that is not very sensitive, replaced by the DGP tests

 

The AGA IgG has a specificity to celiac disease of 80-95% according to this report (pg 12): Open Original Shared Link That means a positive means celiac disease 80-95% of the time.  I'm disappointed that your doctor did not suggest at least trying the gluten-free  for 6 months when this positive test popped up.  :(

 

Your symptoms also sound like hypothyroidism, at least they sound like my symptoms.  ;)  You might want to get that rechecked while you are at it.  I find these tests will tell you the most:

  • TSH -should be close to a 1 regardless of the lab's normal range
  • Free T3 and Free T4 - should be in the 50-75% range of your lab's normal reference range
  • TPO Ab - should be pretty low.

Avoid the T4, T3, or total T4 and total T3; those tests won't give you as clear a picture as the free T's will.

 

If your doctor won't test you, find a doctor that will. If you are unable to get tested, consider trying the gluten-free diet for 6 months or so.  Give it a long trial as symptoms of celiac disease can take months or years to improve.  Do NOT go gluten-free before testing is done though because that can, and eventually will, lead to false negative celiac disease tests.

 

Best wishes.

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. - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Seeking advice on potential gluten challenge

    2. - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Seeking advice on potential gluten challenge

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

      Have I got coeliac disease

    4. - trents replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Seeking advice on potential gluten challenge

    5. - trents replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Have I got coeliac disease

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

    • Total Members
      133,148
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • JudyLou
      Oops! @Staticgypsy, I’ll get the book! Thank you! 
    • JudyLou
      Thank you so much for your help, @trents and @Staticgypsy! I so appreciate your thoughts. My diet is high in foods with oxalates and I don’t notice any issues there. If eliminating gluten from my diet had changed anything I’d be happy to just keep on the gluten-free diet, but with eating gluten several times with no rash, and having a rash when I was many years into gluten-free eating (and was much more careful at that point), I’m just baffled. Many, many thanks to you both. 
    • Mark Conway
      I did'nt know that, I will check what specifically the blood tests were for. Thanks
    • trents
      Sorry, @JudyLou, as reread your post, I see that you have had gene testing done already.
    • trents
      Welcome to the forum, @Mark Conway! Can you be more specific about the "coeliac" test your doctor did? There are more than one of them. What was the name of the test? Also, did he order a "total IGA" test? This is a test to check for IGA deficiency and should always be ordered along with the tests specifically designed to detect celiac disease. If you are IGA deficient, the IGA celiac blood antibody tests used to check for celiac disease per se will not be accurate. Also, if you have been cutting back on gluten before the tests, that will render them invalid. You must have be eating normal amounts of gluten for weeks/months before the blood draw to render valid test results.
×
×
  • 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.