Support Groups In General
Posted 10 October 2004 - 05:53 PM
Posted 10 October 2004 - 06:05 PM
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
Posted 10 October 2004 - 08:30 PM
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.
Posted 11 October 2004 - 07:28 AM
gluten-free since July 2004
Strawberries and Banannas (2007)
Nitrates (April 2006)
Yeast (which includes all vinegar so no condiments) (Oct. 2004)
Peanuts (Nov. 2004)
Soy (Oct. 2004)
Almonds (Sept. 2004)
Corn (Sept. 2004)
Posted 13 October 2004 - 11:12 AM
Posted 13 October 2004 - 11:19 AM
Posted 18 October 2004 - 02:02 AM
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?
Husband misdiagnosed for 27 yrs -
The misdiagnosis was: IBS or colitis
Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,
most prestigious medical groups in northern NJ which constantly advertises themselves as
being the "best." This GI told him it was "all in his head."
Serious Depressive state ensued
Finally Diagnosed with celiac disease in 2003
Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.
Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle
Developed neuropathy in 2005
Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003
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