Sorry, I've got no answer for you, Chele, Just wanted to make you welcome. I usually post on the myasthenia gravis forum, and the gluten sensitivity/celiac forum. But I peek into this one since I had Grave's disease, and now have underactive thyroid.
I can certainly sympathize with your problems about getting treatment. Seems like when you go to several specialists, the last thing they want to do is cooperate in your treatment. What we need is a multi-specialty, patient oriented coordinator to coordinate all of the different doctors we see.
You're doing one of the best things you can for yourself by doing the research and trying to come up with some answers. If I run across any info, I'll definitely post it for you.
Hugs,