Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Celiac tests negative , PBC joint pain


ElenaM

Recommended Posts

ElenaM Rookie

Hello everyone,

So my story.

Suspected celiac from some time now.Symptoms:

Abdominal pain right upper and lower abdomen

Extreme bloating like pregnant

Hair loss

iron deficient but normal hemoglobin

Joint pain etc

Have been first to rheumatologist.

Did a cheap (bad idea)panel blood test with all antibodies.Another doctor said these sometime are cheap and give false positives.

AMA antibody came positive.Was scared went to do liver tests all were normal.Another doctor said it was probably an error because I can.t have PBC(primary billiaey chirossis.)

So back to gastro.

Did celiac test Translutaminase IGa Igg. Were negative.I did eat gluten that time but there were maybe 2 weeks out of six when I disn.t eat.but a week before I did the test I did eat gluten.Anyway I did these some years ago and were also negative.But at a different lab some years ago it showed IGa or Igg deficiency I don.t remember.Now I did only total IGa and IGm and were normal.The thing is in my country Some labs are just bad and give false results and I have to repeat endlessly all the blood tests.

I am tired of feeling bad.I have sometimes such a severe pain like i am about to give birth.

I am scared it might be my gallblader but Actually all blood tests for that disear are normal.

And funny thing after I eliminate some gas the pain mostly goes away.so it might be the classic IBS like doctors say when they don.t know what you have.

All my life I had iron deficiency.Calcium deficiency.Vitamin d3 deficiency.

Extreme fatigue despite sleeping 13 hours.

And lots of other symptoms.

I am tired of going to endless doctors.

I might try the gluten free chalenge and forget about doint blood tests because I can.t take the pain anymore.

Can gallbladder be inflamed from celiac and show some positive antibody for PBC but still not really be PBC,?

Did anyone had similar issues? 

Doctors will not do biopsy for celiac if they see the blood tests are negative so no chance for biopsy.


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

Welcome!  

I sounds like you may not have had the complete celiac blood test panel which includes the TTG, EMA,  and the newer DGP (both IGA and IGG versions in case you have an IGA deficiency).  Learn more about testing:

Open Original Shared Link

If all else fails,  you can trial the gluten free diet for six months.  That should bring you relief if gluten is the problem.  

Your gallbladder can be checked with an ultrasound or HIDA scan.  

I wish you well.  

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,121
    • Most Online (within 30 mins)
      7,748

    Susan Schwa
    Newest Member
    Susan Schwa
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      69.9k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • kim-d
      Thanks, @trents. That was what I was thinking of as well, but I'm a huge worrier and keep doubting if it was right thing to do so it seemed better to ask more experienced people. My diet won't be 100% gluten free unfortunately, but I'm thinking of using it as an opportunity to keep a food log and try to see what makes things worse. 
    • jjiillee
      Her Dr gave her meds for the ulcers and recommend the genetic blood test to rule out celiac. Got those results and the hla-dq2 is positive the hla-dq8 is negative. So I’m not sure what this all means. Waiting to hear from the Dr again. She has been eating gluten and did say she got bad stomach pain again the other day but it hasn’t happened in a few weeks so I’m not sure if it’s from gluten or the ulcers.
    • Soleihey
      I have been on supplementation for almost 11 months with no deficiencies showing up on blood work. So was just hoping to hear someone else’s story where it took longer to heal. 
    • Erain
      Here’s the answer from the company 😊   Hi Emily,    Thank you for reaching out to us! We can confirm the Organic Protein + 50 Superfoods Powder is gluten free. The organic barley and wheatgrasses we use are harvested prior to jointing, before the grain forms and any gluten protein is present. Rest assured appropriate measures are taken to ensure our gluten free products comply with the FDA final rule to be labeled as gluten free, as claimed on the side-panel label. Our suppliers are required to verify each ingredient and in order to ensure that our gluten free products comply with the FDA requirements, our manufacturing facilities use the ELISA test method to confirm gluten levels are less than the standard limit of <20 ppm.    If you have allergy concerns about consuming the grasses, we recommend consulting further with your healthcare provider. I hope this information helps! Please let us know if you have other questions.   
    • Erain
      That’s great to know. Thanks Scott
×
×
  • Create New...