Refractory Coeliac Disease

[malachy30]

I have just been diagnosed with RCD type 1. I am extremely careful about cross contamination so that has been ruled out. Three years of gluten free and my villi have not grown back. St Thomas now want to start me on steroids and immune suppressants- long term I believe. I have read about success of the elimination diet for RCD in the US and would like to try this for 6 months. It would be tough but surely better then steroids and Aziothprine. Has anyone else out there been diagnosed? There is little or no patient support for coeliacs who are not healing..

thanks