Chronic intestinal pseudo-obstruction (CIP) diagnosis

Hi Elaine, this is Lelia responding to your message posted on a different fructose malabsorption list than the one I started. I'm trying to keep it all together under one label. Anyway, thanks for getting back to me. My experience has been the dietitians don't know that much, especially in new areas like fructose malabsorption and CIP. Probably better to go with what the doctor says. Keep in touch. Did you have any good non-clinic experiences in Rochester?

Hi Lelia, We thought we were going to do a few things in Rochester when my tests were changed from May 8 to the 28th. We were going to go to the mansion and take the trolly tour but then everything was changed and more tests and consultations were scheduled and we didn't get to do anything else.
The dietician gave me a diet to follow for severe gastroparesis, which of course I don't have. There was a diet that I saw on a CIP website that I'm going to check into, but otherwise, it's pretty much been hit and miss. The only other thing the doctor said was to stay away from artificial sweeteners. Thanks for your response to my message. I don't think there are many people out there who are familiar with CIP. Elaine

Does anyone know of medication for Chronic Intestinal Pseudo-Obstruction?

I've had CiP for a decade or more, and it seems very related to intracranial hypertension (IIH) and cervical instability. I also have Ehlers Danlos, aka EDS, a connective tissue disorder. My GI doctor said once he learned of EDS he saw that about 1/3 of his patients have it. Unfortunately there's no cure, since it's genetic. The hypermobility of tissues and effects of gravity generate symptoms, but so does increased sympathetic nervous system activity and lack of vagal tone.