Starting A Support Group.

[mamaw]

Several separate messages has been posted in regards to starting a group.I did start a gluten-free group from infancy....

BE PREPARED Be Prepared Be Prepared!!!!

1. decide if you want to be a part of a national group such as : CSA, Gig

with these national groups there will be laws & strict guidelines that must be followed.Plus you will get support from headquarters. They will help get you started

2> If you choose you start an independent group, then you will be in charge of all rules,&will not report to anyone except you & your group.

3.Recently many have started independent groups instead of going with a national group.

I'll address independent gluten-free support groups from this point:

1. where will you meet, how often,

2. What topics will you discuss: who will lead these topics. &A is popular -again you will need a qualified person

3.who will be in charge of making sure the info being delivered is true & correct

4 who will pay the room rent for the meeting ( sometimes a church or hospital will supply with little or no charge)

5..how will you get the info out about the meeting (newspaper, radio, talk show in the area) who will pay the fees for this if any

6.What will the mission be for the meetings

7 you will need a disclaimer, liability.......

8 will you have gluten-free eating experiences at the meetings: how will you handle other allergies, ie: dairy , nuts

a. I have everyone police themselves! Every food brought in to a meeting must have a recipe card with ALL ingredients listed.

b. if children are attending & sampling a parent must supervise that child for what he/she can eat.

9. will you have speakers? who will pay for them

10.will you have samples from vendors/bakers

a.who will be in charge of handling these & receiving as well.

11 .will you have a doctor for back up .

12. Do not discuss medical conditions or give your own DX. Most of us are not doctors so we may not tell a person they have this illness or any other.

a. this can cause a lawsuit!

b. what you can do is when a person is explaining his/.her condition & asking an opinion is too listen closely & be concerned & then refer them to see a doctor for a formal dx.

13. I have heard from many who go through the medical field only to find no help. They become very discouraged.

a. they get tested & it comes back all negative for celiac, but they have issues

b. what I usually do if they have exhausted the medical arena is again say we can't make a dx's.

c. If you are thinking of trying to go gluten-free for a few months I will be glad to assist you in finding the foods you enjoy in gluten-free.

d. I tell people I have never heard of anyone who has ever died from not eating wheat.!!!!

14. not many doctors look into gluten sensitivity, there are now more gluten sensitive people than true celiacs.

15. For me most important is getting updated new info & not hear-say from uncertain sites. You must have true updated info at all times...

same with new gluten-free products.

16. When you are the leader you must always be the go -to person. Too many chiefs just doesn't work.But you will need many helpers.

a. That is the hard part getting dedicated people who will be assisstants for the long haul.

b. everyone will be gun-ho at first & then help dwindles.

c. to keep interest you need new topics & ideas for each meeting.

d.also talks on eating gluten-free in a healthy way ie: fruits & veggies,organics free of chemical sprays often are interesting when one is trying to regain health.

e. Always have things for kids as well.

It is much easier to go with a national group but I like the idea of being independent.

17. Another thought is will you open your group to just celiac or will it be open to all who are intested in the gluten-free diet? ie: autism,diabetics,Down's ,MS & so on.

These above items are things that need to be thought through before taking on a support group.

It takes hours ,days & months of work & knowledge for a two to three hour meeting.

for me giving out misleading, wrong info is far worse than having no info.

One final note: never have a new meeting at your home & invite total strangers into your home.I know this sounds weird but things happen & you can be sued. Home burglary & so on. It is not something we want to think about but in our unsafe world stranger things have happened. Be prepared for anything....anywhere.

I hope this helps those who are thinking of starting a gluten-free group. It is very rewarding if all issues are addressed at the beginning so no surprises happen along the journey.

blessings

mamaw