Help Me! Trying To Start A Support Group In My Hometown!

[Brooklyn528]

Hello and thanks to anyone who can be of any help!

A little about myself before I get started. I'm Brooklyn. I'm 24, a mother of two, and a homemaker. I was diagnosed celiac disease in January, and with some up and downs, have been gluten free since spring. I was recently diagnosed with Autoimmune Hepatitis also which just reinforces my need for strict adherence to gluten free. My children are both in my eyes on the road to being diagnosed. They both carry the genes and have positive IgG antibodies. Soon I will be making a whole house change to gluten free. My hometown is a small one. It's very old fashioned and country. I only know of a handful of Celiacs and most of them were recently diagnosed by the town GI, my grandfather. So, my goal now is to start spreading the word of Celiac Disease in my community. I see so many people day to day that suffer with the same things that I did before going gluten free.

My questions are these:

Has anyone tried doing this recently in a similar sounding enviroment with any success?

Where can I get information to use for meetings and handouts?

Would it be wise to ask the hospital for a room to have meetings in?

Going on the news with information on a first meeting, would this be a good idea or would the news be willing?

If I come up with more question, I'm sure I will, they will be posted. I am really just in the beginning stages. I am hoping to have things together to get started around the holidays. Thanks in advance for any help.

[mamaw]

Hello

Kudos to you for wanting to start a gluten-free support group. I did this about three years ago...It isn't an easy task... ..... there is a thread about the exact same questions you are asking now.... I'm not good at recovering past posts so maybe someone will find it for you.....

You are still new yourself to the gluten-free lifestyle. I was dx'd years ago & spend hours every day researching & I still learn something everyday. One of my pet peeves is :misinformation is worse than having no information..... so I would suggest if you want to have a gluten-free evening do it as a casual get to gather.... Maybe discuss gluten-free foods that are available in your mainstream grocery store or share a few excellent gluten-free recipes. Or where to find gluten-free goodies....

Maybe your grandfather could speak up through the media .....newspaper, local TV , radio talk show... I did all of these at the beginning...

Is your local hospital in tune with the gluten-free lifestyle? Mine is certainly not!

Information is available everywhere on the web but again not all of it is reliable so you will need to know what is correct & what is hear-say & not reliable.

I only use certain sources for accurate up to date info... This site also has very good information from several knowledgeable people in Scott's newsletters. So you could start here on the newsletters learning things from the articles.

Make a list of what your objectives will be ie: what is your gluten-free focus? Will you have samples, speakers, vendors, who will pay the expenses for the meeting? Will you use printed material? How will you pay for it>

You also will need a disclosure statement....

I don't want to rain on your ideas but there is a lot of things to be done before hand...it takes time, energy, money & a great gameplan>>>>..it is wonderful you want to help others...

Feel free to send me a pm if you want to ask questions....

blessings

mamaw

[emorgan816]

I just started a group (first meeting was in September). I was worried about having info, handouts etc... too but none needed! It was so awesome to have a group of people all with Celiac exchanging places to shop, favorite foods, breads we like, cookies worth buying, etc... We are meeting again this month at a local pizza place that has a gluten-free pizza and everyone is so excited just to be meeting other Celiacs! Don't worry about scheduling every minute of your meeting, these first couple I'm sure will just be everyone finding out where they eat, what they eat, what foods are worth buying and what not to waste your money on and just venting that the meeting will just fly by. Maybe ask the group what sort of information they may want in the future, do they want speakers, nutritionists, or any other people to maybe speak at a meeting? These are things you can figure out as you go along.

I know for me and my group we are just excited to talk to each other about our struggles and our triumphs. I have been doing an email group for over a year now and about 1/2 now are attending the meetings (some are just too far away to attend). I would just email out recipes or into I received from CDF. I now have a newsletter that I put out each month and I'm working on a website too.

Our local hospital has no clue about Celiac, but that doesn't mean you can't see if you can hold a meeting there! Maybe educate a couple people in the process. Does your library have meeting rooms? How about a restaurant who might offer some gluten-free food.

The first meeting I had was at my house and people brought a gluten-free treat to pass. We had brownies, cookies, chips and dip and banana bread and everyone was so excited to be able to eat everything on the table!! The kids were REALLY excited that they could eat all the cookies and brownies This was such a fun way for all of us to meet and since it was in my home we didn't have to worry about being too loud or getting kicked out if the meeting ran too long.

For me, I just felt the first meeting we should have a place we all felt secure in the food and no distractions, and a place we all felt safe in talking about Celiac. I know some of the discussion got into who gets what symptoms so to have that discussion in a restaurant would have been highly inappropriate

It is really up to you what you want to do and where you want to have it. I will say that everyone will just be so excited that there is a group and a place to vent that they really won't care if you have handouts or not! All of that can come in time, but for now I think the conversation will certainly be flowing without you having to have it planned out.

Good luck and I think it is awesome that you are doing this!!

Elizabeth Secora

McHenry Celiac Support Group

PS: Maybe your gdad could be your first speaker and get more into the medical aspect of Celiac and what it does to our bodies if we don't remain gluten-free. Many Celiacs go off the diet because they find it too hard.

[emorgan816]

Sorry, forgot to add:

Yes, get the media involved, but I don't think you would want them at the first meeting. Maybe see if they will do an article about living with Celiac - that is how we got our group going. One of my members got the reporter to write an article on how her girls live day-to-day with Celiac. She contacted me about the support group so I talked about that for the article, and we also had a nutritionist talk to the report about the need to follow the diet and how difficult it is. I got many calls from the article and our group just about doubled in size!

I also have had the meeting date posted in the paper.

Elizabeth Secora

McHenry Celiac Support Group

[mamaw]

Elizabeth

Great that you are growing . I wonder when everyone is chatting about, who controls the chatting? We started with a meet & greet but had over 100 in small town USA! It was wonderful but some were telling newbies that they cheat & eat wheat when they are with friends. Others mentioned products they purchase & they were not gluten-free... many had no idea about cross- contact . So I feel someone needs to be listening that can give correct information.... we spent many meetings learning correct information & not hear-say information. It needs to be backed-up by documentation.....from a reliable source. If someone is stating information that is not correct & they get ill then it just may fall on you since you are the controlling person...

These things are not things we wish to think about .You have to protect yourself while you are trying to help others......Disclosure statement for sure!

When we have a bring a dish to share we always have each person bring the total recipe in to share & always tell them to read the ingredient list before partaking of the gluten-free food. Many have allergies to soy, corn, nuts, etc. Again this way the person is policing themselves as I have no way of knowing everyone's food allergies.

People with good intentions have gotten sued over little details........

As the saying goes" hope for the best & prepare for the worse"

Blessings

mamaw

[Ahorsesoul]

Our local grocery store is just starting up a gluten free support group. So check out places other than medical related for meeting places. We had 8 people at our first meeting. I'm looking forward to our next one to see if more people show up. I had no idea there were even 8 people in our small town who would be interested.

[ChemistMama]

Our local support group asked the local health food stores if they could put a brochure in the gluten free section for the group, then people new to gluten-free would know that a support group exists. Yes, asking the local hospital for a room is a great idea, you could also have your grandfather attend to answer questions. Ask the local public radion station, if you get the info to them early enough they'll plug your meeting for free.

Where are you in Hoosierland? I'm part of the support group in Lafayette, our web site is igist dot org.