What Should Local Support Groups Be Doing?

[coeliacinfostand]

My main passion with coeliac disease is to get more people diagnosed.

This can be done by having large committed local support groups who will keep hassling doctors in their local areas until the doctors start actively looking for the disease.

At the start this is difficult and very slow, but the snowball does gain momentum, and it eventually does grow in size, and take on a life of its own.

The eventual result is that almost all cafes and restaurants in your local area will cater gluten free, and the supermarkets will carry large ranges of gluten-free.

I have seen this happen!

I intend to put more posts on this site on initiatives a local group can take, to "educate" doctors.

I am in Australia.

I do not know if these methods are applicable or practical in other countries.

I would like some feedback.

[kvogt]

In my opinion, the main purpose of support groups is to aid the newly diagnosed - helping them get started on their new lifestyle and return to good health. As actuate this goal, encorage more experienced members to mentor the new members and then as new members become more experienced, they in turn mentor. I believe if you do this then all the other things follow. You will build a large group of people who, in the natural course of life, will talk to doctors, supermarkets manager, and restaurant owners to get what they want. What you need most is to demonstrate a large market for businesses to take an interest.

[coeliacinfostand]

One current article you could show your doctor is at:

Open Original Shared Link

Another "Australian" document is at:

Open Original Shared Link

Someone may be able to find an American equivalent of this, published by an American professional organisation.

[Canadian Karen]

I talked the manager of our local supermarket to start a gluten free merchandise section in his store. I have kept an "unofficial" eye on the merchandise and I can say for sure that it is not only me buying the merchandise. Also, I printed out the article on this site about how retailers need to catch up on the gluten free market that is increasingly growing and gave it to the manager.

Karen

[coeliacinfostand]

  kvogt said:

In my opinion, the main purpose of support groups is to aid the newly diagnosed - helping them get started on their new lifestyle and return to good health.  As actuate this goal, encorage more experienced members to mentor the new members and then as new members become more experienced, they in turn mentor.  I believe if you do this then all the other things follow.  You will build a large group of people who, in the natural course of life, will talk to doctors, supermarkets manager, and restaurant owners to get what they want.  What you need most is to demonstrate a large market for businesses to take an interest.

I think our group does this at the same time as our other activities. We have many activities both at our local support group level, and also at the State Coeliac Society level.

There are many activities at state level, cooking demmos, new members meetings, kids parties, picnics, etc etc. New members get a lot of time both to hear from experts and to talk to other coeliacs. There are over 300 coeliac families in my local suburb. The new ones who take the initiative to come to our local meetings often form friendships, exchange telephone numbers, exchange all sorts of gluten free information etc with the oldies.

Each year our local group runs a Coeliac Information Stand in a local shopping centre. Newly diagnosed members are encouraged to volunteer on these stands, and it often encourages them to become very active members.

The majority of the cafes and restaurants etc in this area, do cater for gluten free. Its nice to walk into a cafe with a group of friends, sit down and say "What can you do for me that is gluten free?". If they can't do anything I just get up with my friends and walk into the next one. It only takes a few groups to do this, and they will get the message.

New members of the society do get a "new members pack" which contains just about everything they need to know.

All packaged foods (and Medicines) in Australia carry mandatory warnings if they contain allergens including any ingredients derived from wheat, rye, barley, or oats, so it is fairly simple to work out if a product is gluten free or not.

We can only help the people who seek out our activities. Privacy laws prevent us from seeking them.