Oh, I am so sorry... you have the two main problems that we face in modern medicine:
1. Getting the diagnosis.
2. Needing more research so the modern medicine will get the diagnosis.
It is a dead end street and so frustrating!!
I agree, making yourself sick, so the paperwork matches reality, is NOT an option!
If you ever, and hopefully not, you land in hospital, there are some companies that deliver GF meals...I have used that in days gone by.
Cheers to you for doing what you wisely know is necessary!