Please let me know if you get any answers! I am fortunate enough to be in remission for several years now (the low-carb diet did it for me) but there are many, many people who suffer from it. It is a debilitating disease and I believe that there are many people who have it and don't know it, and their doctors don't know it either.
To add a little more info, I have PCOS. The research I've done on it has said that there are many PCOS sufferers who also have HD, which makes me think that it is hormone-related.