How many of you sign up to a coeliac society after diagnosis & renew the year after?

[FionaGFG]

Do you find that in the first year you find it the most useful and the 2nd year you don't need it? Do you find it odd that coeliac society guidelines vary so much around the world? Or do you prefer to go it alone and read research and learn from groups and forums?

[Hidden]

I've been a member now for over 20 years and still find it a useful society. i find that there are many interesting links from it and generally you don't end up on some 'quacks' site (my doctor daughter's comment about some info available online, She also points out that often the research carried out by some places is on far too small a sample)

[Hidden]

I joined Coeliac UK after diagnosis 18 years ago and I used to fund raise for them but I kept getting ill eating foods in their food list so I abandoned it and then I found that I had numerous unopened food lists and Crossed grain mag's. So I left before they introduced charging as I felt that they did not support me or my dietary needs.

I don't think that it's in the best interest of coeliac that the only UK charity for coeliac is part sponsored by the codex wheat starch companies. Becuase if codex is available on prescription they can hardly warn coeliac about traces of gluten in wheat derivatives like on other continents like Australia and the US.

So in my opinion UK coeliac are allowed to eat to much gluten compared with other countries. Again take Australia and NZ they have undetectable gluten with no known gluten containing grains as gluten free. And they still warn that some coeliac may not be able to tolerate below 5ppm in wheat derivatives and give a list to be avoid. They also do not class uncontaminated oats as gluten free as according to their research 23% of coeliac had a negative reaction to pure oats.

And as for finding being a member useful I found it very confusing and worried why I still got ill eating certain foods in their food list and the best thing that I did was to abandon their food list.

[barny]

i was diagnosed 18months ago and joined celoec uk but found this year have not and finding it better on my own as have got used to food s i can eat and always read lables make a lot of my own recipes to and feel so much better xx

[Mia1057]

I have to agree with Jerry. I think a charity for Coeliacs has to be independent and not be aligned to suppliers and manufacturers. I had the same problems and got very ill at times on their food list. As I cannot tolerate codex wheat ot any gluten even at 20ppm or below, I felt it did not cater for me.

[marywales]

as a coeliac that CAN tolerate the codex wheat I have found the site very good, I enjoy the mag. crossed grain and the e-version. they do a very good awareness job for us all (maybe not the hyper-sensitive ones)

I did stop using the food lists though, too much phaff, read the label I say