negative ttg with positive EMA, what does it mean?

[GF-Cheetah Cub]

Anyone here knows how to interpret a negative tTg with a positive EMA ?

My 12 year-old was diagnosed with celiac over 2 years ago via blood test and endoscopy.   Our whole household went gluten free right away, and her ttg was coming down over the 2+ years, but never came into negative or normal range (Please just believe me that we are VERY careful with our gluten-free eating!!).

We then ordered an EMA test, and that test was done in a different lab, but the result was even more confusing.   In this test, her ttg is negative (First time ever!  We were so surprised and happy!)  but the EMA came back positive.  

Anyone know if positive EMA means she is still not gluten free enough?!   I don't really know what a positive EMA means.   I did read staff on google, still confusing.

[RMJ]

That is surprising.  Did you get a number for the EMA result?  If a number, it would look like 1:160 or 1:5.  Knowing that would let us know how positive the EMA result was.

[GF-Cheetah Cub]

No number.  Just positive.    I didn't know you can get a number with the EMA.

What does a positive EMA usually mean?

I got different answers from two different GI specialist.   One said positive EMA=bad.   The other said ttg is normal, so it is all good, and to ignore the EMA.  

 

[cyclinglady]

I can not explain it, but a different lab could be the difference.  Perhaps, carry on and retest in six months.  She is thriving, right?  

 I only test positive to the DGP even in follow-up testing (biopsy Marsh Stage IIIB).    Weird.  I guess that's why the celiac complete blood panel offers several different tests.  It's just not "one size fits all".  

I know you said that you are strictly gluten-free, but this might be helpful.  

Open Original Shared Link

[cyclinglady]

I do not think you can ignore the EMA test just because the TTG is negative.  A positive EMA means celiac disease or DH (antibodies).  But.....I still think there might be a lab error.  

I would not worry, if her health is improving.  Just get re-tested in six months and stick to the same lab or go back to the old lab soon for piece of mind.    

 

[GF-Cheetah Cub]

My daughter also has type 1 diabetes.  I was told that people with multiple autoimmune disease can have falsely elevated positive ttg.   So, I got a recommendation to ask for this extra EMA test.  

This EMA was done in another lab.   It finally gave us a normal ttg number, but a positive EMA.  

By the way, the same blood sample was also tested in our regular lab for regular celiac panel, and their ttg came back above normal again.    So, we have extra confusion.

My daughter did gain height and weight since going gluten-free.