I agree that the internet can provide information, but those people new to CD may need a trustworthy source of information, at least initially – I’m sure we’ve all seen incorrect information out there.

I also agree that the 1:100 are a drain on resources, and that earlier diagnosis would reduce this. I hope that CUK are pushing for exactly this. There was an article in today’s papers about CUK protesting against the cut in gluten free prescriptions in Northamptonshire – this too is the sort of work they should be doing, in my view, and for the same sorts of reasons that you suggest … if people don’t stay on a gluten free diet, then the risk to their health, and the knock-on effect on health budgets, will be significant.

CUK does provide a useful service for newly diagnosed, I think, and we do still use the Food Directory – though not nearly as much as we did in the first few years.

Would you recommend that CUK should stay with donation-based funding, or do you see CUK as completely irrelevant now?

I go my own way as I do in many things, which I find out is often best. Certainly for me. I’m afraid that charities like Coeliac UK are being usurped by the Internet, which gives you the information you want at your fingertips.

The lot of coeliacs will not be improved until the NHS realises that the one in hundred of the population who have coeliac disease are a severe economic drain. Not because of the disease they have, but because of all the drugs and treatments that are given to coeliacs because of misdiagnosis.

We live in a time of massive change in the way we handle and access information. Most of it will be free. Charities that go closed and charge their members for their services will cease to exist.

It’s a very hard world out there.

James Miller