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

Please Help


I Love Food

Recommended Posts

I Love Food Newbie

Please help. been suffering for years.

 

Got a copy of my lab reports from 2008

 

AGA IGA positive 12.6 reference < 12.0 U/ML

AGA IGG positive 21.6 reference < 12.0 U/ML

TTG (endomysial) negative 1.3 reference < 10.0 U/ML

 

Biopsy was negative. Seems like there were only 2 samples taken. 

 

Symptoms started out as mostly GI (diahrea, every single day, bloating, have to run to washroom and would have shaking and cold sweats).

 

I've also had the tiny itchy liquid filled blisters on my hands - but they only appear (or at least in great number and extremely itchy) in August/September.

 

Went gluten and dairy free this past November for 30 days. felt amazing. Starting eating normal again by Christmas time.

 

New symptoms within the last 8 months - sinus pain daily, sore throat daily, joint pain (wrists, knees ankles) EXTREME fatigue (likes it's a real struggle to make it through work) I could sleep all he time, brain fog (almost like split second blackouts, like I forget for a second where I am or what I wanted to do) forgetfull, easily irritated especially with banging noises, a spot on my face next to my right ear went numb one afternoon (I could dig my fingernail in and feel nothing) trouble loosing weight despite eating well, heartburn


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

Welcome! Time to get retested by a celiac-savvy GI! Here are the tests (actually any medical doctor can order a complete celiac panel which is critical in your case since your old TTG results were negative and the old AGA tests were used). I tested positive to only the DGP IGA and my TTG tests were negative yet biopsies revealed moderate to severe damage (many sample were taken).

I Love Food Newbie

Thanks so much for your reply. so AGA aren't used anymore? What is the complete celiac panel? 

cyclinglady Grand Master

Oops! Sorry! Here is the list of celiac disease tests:

-tTG IgA and tTG IgG

-DGP IgA and DGP IgG

-EMA IgA

-total serum IgA and IgG (control test)

-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests

-endoscopic biopsy - make sure at least 6 samples are taken

(Source: NVSMOM -- )

I meant to say that my TTG rests were negative but the DGP IGA test was positive. My biopsies revealed severe damage. Sounds like your GI did not take enough samples as damage can be patchy and the small intestine is the size of a tennis court -- seriously!

Keep eating gluten until all testing is complete!

Welcome to the forum and let us know how it goes!

Archived

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

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

    • Total Members
      133,162
    • Most Online (within 30 mins)
      7,748

    Carolyn harkless
    Newest Member
    Carolyn harkless
    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

    • trents
      Let me hasten to add that if you will be undergoing an endoscopy/biopsy, it is critical that you do not begin efforts to reduce gluten beforehand. Doing so will render the results invalid as it will allow the small bowel lining to heal and, therefore, obscure the damage done by celiac disease which is what the biopsy is looking for.
    • Scott Adams
      This article, and the comments below it, may be helpful:    
    • Scott Adams
      That’s a really tough situation. A few key points: as mentioned, a gluten challenge does require daily gluten for several weeks to make blood tests meaningful, but negative tests after limited exposure aren’t reliable. Dermatitis herpetiformis can also be tricky to diagnose unless the biopsy is taken from normal-looking skin next to a lesion. Some people with celiac or DH don’t react every time they’re exposed, so lack of symptoms doesn’t rule it out. Given your history and family cancer risk, this is something I’d strongly discuss with a celiac-experienced gastroenterologist or dermatologist before attempting a challenge on your own, so risks and benefits are clearly weighed.
    • Greymo
      https://celiac.org/glutenexposuremarkers/    yes, two hours after accidents ingesting gluten I am vomiting and then diarrhea- then exhaustion and a headache. see the article above- There is research that shows our reactions.
    • trents
      Concerning the EMA positive result, the EMA was the original blood test developed to detect celiac disease and has largely been replaced by the tTG-IGA which has a similar reliability confidence but is much less expensive to run. Yes, a positive EMA is very strong evidence of celiac disease but not foolproof. In the UK, a tTG-IGA score that is 10x normal or greater will often result in foregoing the endoscopy/biopsy. Weaker positives on the tTG-IGA still trigger the endoscopy/biopsy. That protocol is being considered in the US but is not yet in place.
×
×
  • 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.