I saw an awesome gastro doc last week. Obviously I can't post her name but pm me for her name. I was referred to her by Professor Grahame. She was Professor Aziz's fellow or registrar can't remember which, she totally understands the gi probs we get with EDS and autonomic problems. She took loads of time explains what's going on with my insides, why it doesn't work properly and is putting me on a fodmap diet, just waiting for the dietician to contact me to sort it out. She also took loads of blood that showed I am vit b12 deficient!! Probably because I am not absorbing it from the gut, deep joy more injections and blood tests
She has also put me on domperidone to improve my motility and hopefully stop me being sick
all in all a successful trip to London and I would recommend her to people with EDS gi problems. She is based at UCL.
Has anyone else tried the fodmap diet, if so how did you get on??? Feeling a bit overwhelmed at the thought of being on such a restricted diet. Does anyone else get food on prescription??
Any info or advice gladly received
Feel like I am held together with some "end of line" elastic!!!!!!!!!!!!! I think I am falling apart!
HMSA Local Group Co -ordinator/Assistant Medical Liaison Officer
Plymouth Group Leader