Celiac Disease Support Group

Celiac disease is an auto-immune disorder of the digestive system that occurs in genetically-predisposed individuals. It is characterised by damage or flattening to all or part of the villi lining the small intestine, which interferes with the absorption of nutrients. This damage is caused by eating anything with gluten (gliadin), a protein found in wheat, rye, and barley...

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Anyone been to the Mayo Clinic?

chemnut
chemnut
I'm currently in the application process to go to the Mayo Clinic to see if they can find out why I'm having such a hard time staying well. Has anyone ever been there that can tell me what the process is like?

I spoke with a scheduling coordinator last Friday and the tone was very accusatory. The conversation left me tramatized. I'm wondering if I make it to see the doctors, should I expect the same dismissive, patient-blaming types that I've seen for the last 20+ yrs.
worldofblah4
worldofblah4
I have heard of them but I have never been. I hope they find answers for you and that they are friendly. Good luck and let us know what happens.
chemnut
chemnut
worlofblah4, thanks for the reply. I'm trying to be optimistic, but I found out last night that when my doctor's office tried to fax over my records they couldn't get through until the 6th try and that was to a "forwarding" fax number. The coordinators at Mayo are claiming they still don't have my records and have no idea what the "forwarding" number is or where it goes. Someone replied to my doctors office confirming receiving my files, but I have no idea who. My name and SS# had to have been on some of the documents. And my doctor's office is refusing to resend the files. Mayo of course won't see me without them.

At least I have the support of a wonderful husband that will track everything down and make this right so that I can focus on my work and health.
chemnut
chemnut
Well, I heard back from Mayo on Friday. One of their doctors reviewed my medical records and has decided that I don't have Celiac disease and refused to see me. He didn't offer any insight into what I might have. The motility group as offered to see me, which I will do, but with little expectation that they are going to be helpful. It is sad that Mayo Clinic is continuing to travel down the same well trodden path that my other doctors have been down that found nothing. While they continue to look in the same places and ignore the fact that I can't eat gluten or corn, I continue to have symptoms. It is increibly frustrating. I don't know why doctors think that just because they look in the wrong place and don't find anything that that is supposed to end your suffering. My appointment is Mar. 3. I'll let you know how it goes.
nanny1611
nanny1611
Sorry to hear of your negative experience. It was because of negative experiences that I started doing my own research and began utilizing nutrition and supplements. Currently I'm working on digestive issues and seeing more improvements. Try to remember that not all doctors are so dismissive. I have had some very good doctors along the way, and you will find some too.