Teresa asks some good questions here. Your diagnosis does sound very troublesome. I am trying to figure out some gastric problems I have developed myself, but hopefully, the diagnosis won't be too serious.
I agree with Teresa about seeking a second opinion. That never hurts and it is good to know that you are moving in the right direction. If you are close to a major medical center, that is the best place to go.
Please do let us know your progress in confirming your diagnosis or finding it may be something else.