Hi Aimee, I'm sorry I don't have any advice for you. However, I'd like to add my support to keep searching for answers. You're far too young to be having these serious health problems. I too suffered for over two years before I finally found a doctor that had the expertise to help me. I didn't have the same problems as you do, and I feel for you. But I lost over 40 pounds and had constant gastrointestinal distress before I was successfully diagnosed. I'm sure there is a light at the end of the long road to wellness. You will get there!
I will be praying for you, and hope you find a Doctor that can help you finally find some relief, and happiness.
best regards, larry mac