I'm just wondering what your experiences with dieticians have been like. I am a bit disappointed with the advice I've had from mine.
I saw her last week, having had a +ve coeliac screen test just before xmas (I've been on the diet just over a year). She asked if I was checking labels - I said I was. She suggested I try avoiding codex wheat starch and barley malt extract - I explained I was already doing this. She said there's nothing else I can do; some people just don't feel much better on the diet.
She has also said some things that I don't think are quite correct:
"You can eat barley malt extract. As long as the word 'extract' is there it is safe" really? (I'm avoiding anyway)
"20ppm is definately safe for all coeliacs" I think even Coeliac UK admit that this is not the case!
"Refractory coeliac disease is where your gut is healing, but you still get symptoms" errr, I thought refractory meant not-responding-to-treatment (i.e. not healing)
Am I wrong to be worried? I was really expecting her to help me plan a more effective diet, not tell me this is as good as it gets. I'm feeling pretty lousy at the mo with achey joints, tummy cramps and nausea, and it's so depressing to be told that I can't expect any of that to improve!