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20+ months Gluten Free but still elevated tTG's?

post #1 of 2
Thread Starter 

My 5 year old son has Celiac.  After 6 months his tTG's went from 129 to 46.  From 6-12 months the only dropped from 46 to 38.  After a ton of calls, we did locate something we occasionally used with gluten.  We removed that but from 12-18 months gluten free, there was only a drop from 36 to 34.  

 

In another set of labs (more specific from what I have read) there is no other "off" blood work. The newest panel was sent to Promethis labs and were all WNL.  That supposedly means that he IS compliant with the diet (which we already knew as he only eats food we have okayed and/or have made ourselves.)

 

 

Why are we still getting high tTG levels this far out?  His biopsy was read as inconclusive and then a second (leading expert) Dr. read it as negative so his diagnosis was by blood levels and reaction to diet. He was completely asymptomatic except for a zero Vit. D level which is what got us the Celiac test to begin with.


Any guidance would be greatly appreciated!

post #2 of 2

Some people with food allergies may not react to a one-time re-introduction of a food only weeks after their last exposure. This means their antibody levels dropped very quickly. (If it is still an allergy, they would react to the 2nd or 3rd re-introduction within a day or two.) There are others who can very strictly avoid something and have a huge reaction upon an accidental exposure a year or more later. Some allergies are just more imbedded and determined.  

 

For many, or most, the tTG levels are useful for monitoring progress and successful dietary elimination. It sounds as though it's just not going to work well for you. If the biopsy looks good, you are doing fine with the diet.

 

Good for you for making all those phone calls. That's what it takes. It's fine to follow any future recommended tests but at this point, for the most part, watch your son's stools, gas levels, and his comfort levels. Keep track of his blood nutrient levels. These signs should mostly be enough to tell you how your son is doing. 

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