I'm so sad reading this. First of all, I'm new to the forums. But they may have saved my life. I am a doctor of emergency medicine at a well known "research" hospital. I just spent over a month in the hospital with every type of horrific test you can imagine. I was getting so much worse in the hospital that my Fiancee and I were forced to do our own research and diagnoses. I'm so sad to say I almost died bc of the doctors', including three different GI docs, absolute lack of knowledge about this disease. I cannot understand why it's so hidden from the world when it's more common than HIV, breast cancer and skin cancer put together. It makes no sense. You HAVE to find an MD who knows about this and specializes in it. The others know nothing and most aren't willing to do a little research to learn.