How To Start A Support Group?

[~**caselynn**~]

I have done some checking around and there is not a support group in my area that I can find (Northern Maine). There is one 4 hours south of me but that's unrealistic, I try to keep in touch with that group as far as events but I need something closer. How would I go about getting a group started? I'm not really sure how it works or what is needed but I'm hoping someone has some insight for me.

[Lisa]

I have done some checking around and there is not a support group in my area that I can find (Northern Maine). There is one 4 hours south of me but that's unrealistic, I try to keep in touch with that group as far as events but I need something closer. How would I go about getting a group started? I'm not really sure how it works or what is needed but I'm hoping someone has some insight for me.

Contact the Celiac Sprue Association or the Celiac Disease Foundation and they can set you up with a starter kit. You will also be able to use their resources and current research or information.

mamaw (a member here) is also a great resource.

Great idea!

[~**caselynn**~]

Wow you're quick! Haha I'll contact them and see what I can find out, thank you so much! I really know that I could use others to share info with in person, this site is great but sometimes I need someone in front of me lol. My friends and family are wonderful, but they don't really understand. I've done this for a while by myself, but I can't be alone up here, cause someone keeps beating me to the gluten-free frozen pizza!! So I know they're out there! Haha

[GFreeMO]

I live in a small town with one grocery store about a half hour from here. I can't eat it anymore but I noticed that SOMEONE is buying the Udi's bread there. I have been counting the loaves. Sometimes I feel like the only one when I see peoples carts full of crackers and bread.

So yes, they are out there! I keep telling myself this when I feel like breaking down in tears by the "real" cookies.

[~**caselynn**~]

I live in a small town with one grocery store about a half hour from here. I can't eat it anymore but I noticed that SOMEONE is buying the Udi's bread there. I have been counting the loaves. Sometimes I feel like the only one when I see peoples carts full of crackers and bread.

YES!!! I count the gluten-free frozen pizza haha, phew, glad I'm not alone on that one!! I know I'm not the only one eating it because it's stocked on Tuesday, I buy one but when I go back later in the week it's sold out....so who is buying the other 8-10 pizzas!?!?! They're out there, I just know it!

I am in a small town as well, we have 3 grocery stores here, all of which carry a slight varietyof gluten-free food, but no huge selections like at Whole Foods (4.5 hours from me?)...it's getting better but it's been a slow process!

[mamaw]

Hi

Sorry I don't know how to bring my support group info back to the forefront but you can find it under the group heading" celiac disease support group" & my message is from Oct.2, 2010.. It is a single message with no replies... Hope this helps.. If you need anymore info please ask...mamaw

[~**caselynn**~]

Thank you! I think that has completely deterred me from starting my own haha there's just too many unknowns and I'm not really interested in being responsible for others misfortune. Perhaps someday someone will be brave enough to start up here, or expand the southern chapter up my way. Hmm, we shall see.

[mamaw]

Yes, starting a group is not an easy task.. There are plenty of people who think after a few months gluten-free they have the answers & then a lot of bad info gets put into heads of newbies who become confused & mislead then have trouble knowing who to believe & trust...

Sorry I didn't want to deter you but just give the true facts that should be considered when starting a group.....way to many willy nilly groups......

Having a gluten-free social such as to meet newbie people at a gluten-free restaurant is just that but a group meeting for info is different & more knowledge is required & responsibilty as well...

Perhaps you could post a notice at the grocery & ask if any any others that are celiac or intolerant would like to meet for supper as friends, share recipes & such...kinda like facebook in person...

[~**caselynn**~]

No, not your fault lol I was glad to read your info because

You've done it before and know the ins and outs! That's what I was looking for and you nailed it. The responsibility is immense, which unfortunately I just don't like to be responsible for others lol selfish, yes you can call it that. I just feel that everyone should be responsible for themselves. I do like your idea of a social, perhaps I will look into that. I think the biggest thing is that I know there is a group but it is so far away, and that's discouraging. My best friend and I are both Celiacs, odd right? She moved back to Iowa and then found out she was Celiac at about the same time I did. We bounce ideas off each other but she's so far away I need that commraderie here! Unfortunately I don't know that I'm going to find it, and I really need someone my age that knows what I'm going through lol I know I haven't explained it all that well, but I think that is the reason I'm looking to start something here, to find people I can relate to in person.....it's like trying to find a needle in a hay stack when you're in a small town...

[~**caselynn**~]

I should add that I do have an awesome support system between friends and family, but they have no idea how it feels, they just cheerlead for me haha good people, I <3 them! There has got to be someone besides me in Northern Maine that has Celiac or atleast GI...ya know??

[Lisa]

mama suggestions were great! Do you have a health store in your area, where you could put up a poster/flyer for people to sign up, who might like to get together and "chat" over a gluten free dinner at a restaurant nearby. If you have a few, you could call ahead and make sure there are options. Most restaurants would be happy to comply. And a great opportunity to meet peeps like you and maybe kick off some great friendships.

[kareng]

I could use others to share info with in person, this site is great but sometimes I need someone in front of me lol.

Well....What's the weather like up there? If its better than here (95 today from a "cool front"), you might find alot of us at your door standing in front of you!

[Lisa]

Well....What's the weather like up there? If its better than here (95 today from a "cool front"), you might find alot of us at your door standing in front of you!

Count me IN!

[kareng]

Do you have any Vegan/raw/vegetarian/Hippie type places? You could get with them to do a gluten-free meal. They could put it on thier Facebook, front door, etc. Putting your email on the frozen gluten-free pizza? Maybe not.

One thing I found out was tell everyone you know. They start telling you about others that are gluten-free. I got a gluten-free pecan pie because my son was telling some Boy Scouts about gluten-free food and a dad overheard. His teen daughter is a big gluten-free baker.

[~**caselynn**~]

Well....What's the weather like up there? If its better than here (95 today from a "cool front"), you might find alot of us at your door standing in front of you!

Haha! It was mid 80's today with 30% humidity. Pretty nice actually, it does get hotter and a lot more humid but not for an extended period of time. 95 on a cool front is probably our hot days haha!

Those are all great ideas, thank you so much for your input! We don't have any hippie places here, BUT my friend owns a hippie coffee shop/eatery just across the border in Canada!!( I'm way north haha 5 min not even from the border) she does a gluten-free menu for me and she has mentioned some other girls who she does it for as well, I need to call her!! EUREKA!! Thank you thank you thank you!!!!!!! Why didn't I think of that before!?!?

[~**caselynn**~]

OH.MY.WORD. You are never going to believe this. I contacted my friend who owns the hippie spot, she said she'd definitely host a party so I can meet her gluten-free friends, but she closed her place on Monday!!! :( soooo bummed!! That was a "safe" eating spot for me...AND my favorite restaurant here in town is closing this fall, just found out today...SERIOUSLY!? I may never eat out again!! :(

[mamaw]

You just can't catch a break! If you post where you live maybe someone can give youu a heads up for places in the US or Canada... Here's hoping your friend has a social gathering so you can meet some gluten-free eaters!

[~**caselynn**~]

She did mention a gluten free bakery opening near us in Woodstock, New Brunswick...I hope she's right!!

[rosetapper23]

Have you checked into the Gluten Intolerance Group of North America? Their website is www.gluten.net, and they have groups throughout the U.S. Of course, they might not have a chapter near you.

I like to meet other celiacs and gluten-sensitive individuals through meetup.com. It's very popular here in the San Francisco Bay Area, but I don't know if it's as common elsewhere.