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My 7yo has IgA deficiency so was diagnosed with CD by biopsy following suspicious symptoms in May.  Several days after beginning the gf diet I asked for a tTG IgG test as a baseline so we could get feedback on whether we were doing well with a GF diet (since the typical annual tTG IgA would not be a possiblity for him).  His tTG IgG was 64; anything over 20 is considered positive for CD.  He has been on a GF diet for 3 months.  At a check-up last week we learned he had grown 1 1/2 inches and gained 4 pounds--all good since he has always been small for his age.   And we considered this validation that we were doing well with his GF diet.  However, just tonight the nurse called with his tTG IgG results...now over 100!  We are stunned.  We did go on a cruise several weeks ago, on which we were certain he was getting constant cross-contamination at the very least, because he was constantly running for the bathroom and very irritable and short tempered.  (FYI.. I do NOT recommend Holland  America Lines for the traveler with CD despite everything they tell you about being about the accomodate the diet).  The nurse said she thought that week of exposure could be enough to explain the elevated number, and that perhaps we are getting it right at home.  I have been obsessed and driven to learn all I can, research everything he eats, and keep a careful kitchen to insure GF food, so I really don't think he's getting any more than the traces that slip through good manufacturing processes.

But my husband & I wonder, how can it be possible that his number went up so high, even if he did get small amounts of gluten.  Surely at home (and even on that trip) he got less gluten than before we put him on the GF diet.  So how do we explain  this?

Also, we almost cancelled our first appointment with the GI doctor because in all the months of waiting to get to the right doctor and to get that appointment, his episodes of bathroom emergencies had dwindled from every day to only once every few months.  Because of another episode days before the appt we kept it and went on to get a biopsy diagnosis.  However, since going on the GF diet, he seems to have become much more sensitive and is much more likely to need to run for the bathroom and possibly have an accident.  Why would this be?

Can anyone relate to these issue or shed any light?
Thanks,
Dawn


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