Can you be celiac with high TTG but negative EMA

[Nikko]

My 9 year old daughter's original bloodwork showed high TTG but negative EMA. Her biopsy was negative (and done by a highly regarded specialist at a children's hospital). We were told to continue a normal, gluten containing diet and retest. Her follow-up bloodwork 5 months later showed high TTG (23) but negative EMA. She is also very underweight with little appetite and low energy despite being on an unrestricted diet. Can you have celiac with a negative EMA? We don't meet again with her dr until late July. I worry about just monitoring and not being aggressive because of her age and issues with growth and puberty. Thanks for any feedback.  

[cyclinglady]

1 hour ago, Nikko said:

My 9 year old daughter's original bloodwork showed high TTG but negative EMA. Her biopsy was negative (and done by a highly regarded specialist at a children's hospital). We were told to continue a normal, gluten containing diet and retest. Her follow-up bloodwork 5 months later showed high TTG (23) but negative EMA. She is also very underweight with little appetite and low energy despite being on an unrestricted diet. Can you have celiac with a negative EMA? We don't meet again with her dr until late July. I worry about just monitoring and not being aggressive because of her age and issues with growth and puberty. Thanks for any feedback.  

Yes!  My EMA was negative, even in follow-up testing.  The only positive I have had is with the DGP IgA.  My GI does not even order the rest of the panel anymore (saves money) at my annual exam.  Biopsy positive.

Did she get a the DGP test?  If not, I would ask for it.  From my research very young kids and very old people tend to test better with the DGP, but there are always exceptions (like me....is 51 old?)

Don't forget the small intestine is the size of a tennis court and damaged areas can be missed.  Also, the TTG can be elevated if you have another AI issue.

I swore that my 19 year old niece had celiac disease.  She was tiny and had delayed puberty.  Turns out she was malnourished from Crohn's finally found by a pill camera (she had every test under the sun). And out of reach from an endoscopy and colonoscopy.  She had symptoms about four years prior to her diagnosis.  Not saying that your daughter has Crohn's.  I am saying leave no rock unturned!  Keep on advocating.  

Hugs to you and your baby (yeah, they always will remain our babies! )

 

[Nikko]

Thank you! I forgot to mention that she also tested positive for HLA DQ8 gene, which I know predisposes you to celiac but other autoimmune diseases. I'm surprised he never mentioned DGP. I will ask about that, and thanks so much for your feedback about yourself and your niece, I want to explore every possibility! 

[cyclinglady]

Get copies of all her lab results.  It is a good idea to always have them on hand for the rest of her life (or while she is under your care).  You might change doctors or health plans.  My new doctor's were so please to see my records and I did not have to go back to obtain them (most of my doctors have retired or passed on anyway).  

 The DGP might have been run already.  The TTG is the preferred screening test.  This one test catches approximately 95% of celiacs, but not all......like me.