I'm boosting up my review 1 star from 3 to 4 as GI Dept is working with my daughter future planning in the next few years when she and her husband tries to have a child. Good action plan in effect to address anticipated complications.
Mayo is the place to go for unknown health concerns. Be aware they'll re-run tests in their own labs. It could take a couple weeks for tests. Many people travel to Phoenix, so be prepared for hotel bills.
There are a few centers across the US which specialize in the unique and rare disorders read reviews and make informed choices.