Support Groups In General

[Guest gillian502]

I'm in the DC/Md. area, and have met a couple people from a local Celiac support group who think it'd be a good idea for me to join. My feeling is that all these groups focus on is the food and the diet itself, and truthfully, even after a year on this diet I am still quite ill and upset about Celiac Disease and feel I will be out of place among the other Celiacs whose recovery has probably been more succesful than mine. I also have Colitis and a heart problem, and fear these support meetings will not address the other health problems Celiacs can sometimes have. Could some of you who have been to support group meetings tell me if it truly is all about the food, or is there actually some "support" going on? Thanks.

[GEF]

Gillian,

I don't know if your experience will be like mine, but my first (which was very recent) to my local support group was very good. I found that there were people there from all ages (though, there was slightly more older than younger) and at all stages in their gluten-free life (celiac or not). I'm not even gluten-free (yet) and still felt like I belonged and was very welcome.

I'd give it a try... can't hurt

Gretchen

[burdee]

Hi Gillian:

My local celiac support group helped me sooooo much to learn about celiac disease, safe and unsafe foods, celiac friendly resturants, as well as meet supportive friends. When I first discovered I had celiac disease our group leader listened to my frantic phone calls and emails (when I was confused and scared about 'slips') and reassured me that I would eventually learn the gluten-free approach and get healthy. Now I can give other 'newbees' to our group helpful information and encouragement.

My group meets at a local totally gluten-free restaurant. Most of us arrive early to eat dinner and socialize. Our leader starts the meeting with a topic and then opens the room to questions or comments. We are a very informal group, but often stay 2-3 hours just enjoying conversation and exchanging ideas. I have contacted gluten-free food manufacturers for group free sample packages. So I brought free samples of gluten-free pasta, cookies and crackers to several meetings. So we're all about friendship and food--just what I need from a celiac support group--safe food and friends.

If you want to start your own group, considering contacting www.gluten.net for the Gluten Intolerance Group local office in your area or www.csaceliacs.org for the local chapter of the Celiac Sprue Association. One or both of those organizations may give you support and information about starting your own local celiac group.

BURDEE

[kabowman]

Thanks for asking the question - I just contacted my local support group but was unsure how much help it would be since I have never been too much of a joiner but am looking for more advice and still have a lot of questions...Kate

[Guest gillian502]

Thanks for the replies and the info on how to contact my local support group. I think I'll give it a try even though it still sounds a little "food oriented" to me, but we have a food oriented disease, after all! Maybe I'll be pleasantly surprised.

[burdee]

Kate and Gillian: This message board is a great place to receive answers to your questions, but a local support group meeting can also give you emotional support and connect you with friends to call when you're confused, stressed or really uncomfortable with celiac reaction symptoms. I like having both options.

BURDEE

[debmidge]

I wish there was a support group closer to us. I am in Elizabeth, NJ and both support groups are at least an hour's drive away (they meet on week nights).

To many of you who live in areas with low population you probably drive that long to go to a super-store, so a drive of this nature doesn't seem strange to you. But here in NJ that's bumper to bumper traffic between the hours of 5-7 every evening. And there's no guarantee that an hour's drive will turn into a 2 hr drive due to an accident.

The support groups are just too far from us - as a matter of fact they are in different counties. By the time I get home from work, eat dinner and leave it's after 6 PM; then to travel in rush hour for another hour - we just can't do it.

The CSA requires that for a new support group to form, the people who organize it have to be current members for 2 years (?) in an already formed support group.

Is there anyone in the Dover or East Brunswick area groups who live in Union County which would prefer attending support group in Union County? Would any of those members be interested in sponsoring a new support group in Union County area? Since we are not members, we cannot start a new group. Any thoughts out there?