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Guest BellyTimber

Curious Characteristics Of A Support Group

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Guest BellyTimber

The main coeliac support organisation in the UK has two curious features:

- no membership subscription

- a "ban" on discussing symptoms or what they call "medical" information which limits its usefulness. This ban has applied in local groups, in the literature and on the help line.

(Its latest magazine is pretty good, I think that policy is cracking)

In the circumstances these bulletins boards are incredibly valuable, I have doubled my knowledge of my condition in hours.

Michael

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Guest jhmom

I have not been to a support group meeting here in the US but I could not imagine not being able to ask questions about symptoms, etc. ;)

Do your support groups invite someone from the medical profession to speak at the meetings? That may be helpful but I agree, you learn more on the message boards than you would from any doctor, speaker, etc.

Hang in there and ask all the questions you need to :D

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Hi again, Michael

I've learnt lots from this board - but thought I'd let you know of two UK ones which dicuss most things (if you don't already know about them).

Busiest one, although not 'easy to use' is http://members2.boardhost.com/glutenfree/

Second has a very knowledgeable GP on board (very helpful - I believe her children have celiac disease): http://health.groups.yahoo.com/group/uk-coeliac

(It would appear that both these boards were opened when the CUK one was closed down. People need info so much that if it's not supplied by the 'national support organisation they find their own way to get it! Only trouble is some, and I only mean some, of the info obtained that way may be incorrect.)

Will keep coming here to get the latest 'general' info and news - but it's nice to have a 'local' place to go to get 'local' info re gluten-free foods and restaurants etc. (And to whinge about local lack of awareness re celiac disease!)

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Guest BellyTimber

Ruth

Had not heard of those web directions, shall be "onto them like a shot".

Thanks (in anticipating they will be of value to me)

Michael

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Guest BellyTimber

Having been negative about our group I ought to put that right.

Nationally they publish a very good directory of gluten-free products. It's not their fault I've not got the hang of using it properly!

Locally our coordinator works very hard getting demonstrators and organising a trip per year to a food fair and a gluten-free restaurant meal.

He produces an informative news letter quarterly, reviewing suitable local eating places when appropriate.

For our AGM he has even got a gastroenterologist to speak - must make up my mind not to heckle!

Michael

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