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TTG levels "negative" but still 14

CeliacMommaX2

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CeliacMommaX2 Enthusiast
CeliacMommaX2
Posted

My daughter's TTG levels were elevated for 2 years, then she hit 14 (<15 is negative), then went back up to 24.  Her EMA is negative.  I just saw the article "Can Undetectable Negative Tissue Transglutaminase IgA antibodies Predict Mucosal Healing in Treated Celiac Disease Patients?" and am all worried again about her.  Does this mean she's not healing?  We are above super strict, gluten free household, keep her in a bubble and don't know why her TTG is elevated.  Her doctor is not concerned, so I am trying not to be, but I want me little girl to be healthy!

Anyone else have any thoughts on this?  Thanks!

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cyclinglady Grand Master
cyclinglady
Posted

I would not fret.   Has she improved?  That is what counts.  In my research, celiac experts have published studies that indicate that the DGP is a better indication of dietary compliance.  Some say the TTG is useful.  Some say that the celiac tests should only be used for diagnostic reasons and not compliance.  The reality is that not much research has been done to check for dietary compliance.  They are focusing on a cure or better treatment (medication).  Heck, they are just trying to get more celiacs identified (80% of celiac don’t even know they have it).  

I think you are all doing a great job.  Her TTG came down and that is good news!  

GF-Cheetah Cub Contributor
GF-Cheetah Cub
Posted

I agree with cyclinglady.  

My daughter has had elevated ttg number for 3+ years now.   We are also a gluten free family.   My household went gluten free as soon as she was diagnosed.  My daughter's ttg has came down dramatically over the years, but we never quite hit the below range (We came SUPER close with one of our tests).  

Our doctor is not concerned.   She even thinks that her ttg is perhaps falsely elevated.   My daughter is doing well, she is growing.   Taller than me now.  So, I give up worrying about that ttg number a while back.   (I was rather obsessed about it for a while myself.   We worked so hard on this diet, and deserve an excellent grade for it!!)

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