Bonnie - couple of questions...in her G-tube, is she taking an elemental formula like Neocate, or is she given something like Pediasure that contains some whole food proteins that might cause a reaction in some kids? (Just to be clear, pediasure does not contain gluten but does contain milk and soy proteins, which could cause problems for some). Has she been scoped again to see if there is an improvement in her GI tissues?
There are other GI conditions besides Celiac...I understand wanting to know for certain what she has. One of my kids has both Celiac and Eosinophilic Gastroenteritis, a similar condition that does not cause villous atrophy but does cause mast cell degranulation and malabsorption - and it has multiple food triggers (not just gluten).
Thanks - She does get Pediasure in her G tube. WE have scoped again and there has been no change. I call today for the results from the one done after 6 month so we shall see and we go to an allergist on Thursday for testing for other things as her dad has food allergies.