15 Months gluten-free Ttg Still Slightly Elevated

[Mom2Will]

My 9 year old was diagnosed with celiac in March of 2012 by blood tests and a positive biopsy.  We put him on a gluten-free diet the day he had his biopsy done.  His original ttg was 168.  After 6 months gluten-free it went down to 31.  We got his blood results back today (15 months after original diagnosis, 8 months after the last blood test) and his ttg was 23. (0-19 is considered normal)

 

The dr. was pleased with this and said we can basically consider him to be in the normal range since he is so close and is pretty much symptom free at this point.  He is growing great - is in the 75% for height for his age and I'm pretty pleased with his overall health but I thought his numbers would be better by this point.  I've read through the forums a little and I'm seeing posts that ttg isn't the right test for dietary compliance?  That is the only follow up the dr. ordered this time - he did not order the full panel.  Should he have done something different?  Should I be satisfied with the 23 since that is only slightly over normal?  Can I ever expect him to be in the normal range?  The dr. said he doesn't need to be retested for a year.

 

Thanks for reading and for any insight you can give.  His numbers went down so dramatically in the first 6 months that I guess I was just expecting another 8 months to give him a normal reading.

 

Melissa

[Gemini]

They should also have done the DGP as that is the one that tests for dietary compliance....I'm the one that is such a pain in the butt about that!  If you couple that with the tTg, then you can see if his slightly elevated tTg is from gluten ingestion or it's just taking a little time to get into the normal range.  My tTg was around 200 when diagnosed but was slightly elevated for awhile, like your son's, because I had other autoimmune issues going on.  These can keep it elevated also. I am not saying that's the case with your son but it was with me.

 

I would think if he is growing, happy, and asymptomatic, you must be doing something right.  However, I would want that number (tTg) to be in the lower normal range myself.  If it were me, I would ask for the DGP to see where that is as most Celiac experts say that number should be as close to zero as possible.  It is not meant to be at zero but the lower you go, the better the compliance to the diet is.  Then I would ask for a re-test on the tTg in 6 months because it really can take awhile to normalize, especially when it's that high to begin with.  tTg wants to be in the lower end of normal but again, it is not meant to be zero...doesn't have to be. I would also keep track of how he is feeling with things like fatigue. If he were to develop another AI issue, the fatigue usually is a bigger symptom that will show first.  But don't worry about that now....he needs more time to heal.  It's only been a little over a year.