Wow…. what outdated thinking. So many of us have IBS, gastoparesis, etc that stomach issues are a very common result of EDS. EDS affects collagen, not just joints. That is why EDS affects the whole body.
As for finding a new doc, call and ask new offices if the dr is familiar with EDS and how if affects gastro issues. They might have to ask the dr and call you back.
There was a gastro dr, can’t remember who, who started using the Beighton criteria on his IBS patients, and found a HUGE percentage of them scored highly and had EDS when further screened.
Yes, I was thinking the same thing, that I would have to start calling around to see if any
GI doctors on my insurance know about EDS. I also need to find a new pedi for my kids.. our current one has NO CLUE and just wants to send us to a specialist or dismisses my concerns and gets us out the door. But for day to day issues we need a pedi who understands how EDS effects everything! My neuro did a consult appt. with one of my daughters (she can’t treat kids per her insurance) and her recommendation was to find a pediatric internist. So, she tried to find one and couldn’t. Apparently there are not any in our area (which is a pretty good size metro area).
The amount of phone calls and energy needed to find doctors is daunting for me right now. Maybe in a few months when the weather is better (I usually do better in the summer, as long as I don’t get overheated – that sends me spiraling). =)