Monday, September 5, 2011

Finding a Celiac Support Group (or Gluten Free Support Group)


In addition to my supermarket addiction, I apparently have a bit of a support group addiction as well. I am a member of six different support groups (either gluten free or celiac disease). That's the nice thing about living in a very populous area - the number of options available.  Support groups are no different.

Annual Gluten Free Picnic by the Seashore Celiacs
Each group approaches their events differently. Some meet at set locations, some try new restaurants, some share new snacks, some have guest speakers, but the one thing they all have in common is the camaraderie. It is nice, no matter the event or structure of the meeting, to spend an hour or two with people who completely get what I go through in having food restrictions.  Not only that but the other members can be a wealth of information on where to eat and which products are best.

I would highly recommend (especially for those who have GF children) to find and join a support group. Social interactions can be very food centric and it is tough on me as an adult to be the odd man out; I can’t imagine what it is like as a child. Even if you don't match the topic exactly (wheat allergy at a Celiac meeting for example), emotionally you'll get quite a bit out of the experience.

So where can you look for a group if you aren't already in one? (note – if you live in NJ, I’ve added an ‘as current as I can make it’ list at the end.)

  • Check with your local hospitals. A good number of them offer support groups and if there is enough interest may add more.
  • Try Meetup.com. They list all sorts of local support groups here: meetup.com/topics/health The nice thing about meetup is that you can do a zip code search on your issues and they will point you towards the closest groups.
  • There is a list of R.O.C.K. chapters (Raising Our Celiac Kids) at celiac.com: Link to ROCK Chapters. It appears that R.O.C.K. doesn’t have their own website but rather is hosted on celiac.com.
  • The Celiac Disease Foundation has a list of affiliates as well: celiac.org
  • Try searching for a group on Facebook.
  • Ask around at your local health food store.
  • Google it! (or use any web search site for that matter.)

And remember, if you can't find one you can always start your own. You may just be surprised at how many others in your community have similar problems!


List of NJ Celiac / Gluten-Free Support Groups:

Celiac and Allergy Support Meetup Group - in the Parsippany, NJ area.

CSA Southern NJ - meets in Vorhees, NJ

The Fine Grind GF Club - meets at The Fine Grind in Little Falls, NJ.

Happy to be Gluten Free in Central NJ Meetup - meets in the Westfield, NJ area.

The Jersey City Gluten-Free Meetup - meets in Jersey City, NJ.

Kogen Celiac Center – website hasn't been updated in over a year so I'm not sure this is still active (part of St. Barnabas Hospital in Livingston, NJ).

Lyndhurst NJ Celiac Support Group - meets in Lyndhurst, NJ.

Morristown ROCK – no website, and I'm not sure this is still active.

Northern NJ Celiac Disease Support Group - they meet almost monthly in Paramus, NJ.  This is my 'home' support group; I've been a member since shortly before I diagnosed myself with gluten intolerance.

Seashore Celiacs - they meet on the third Wednesday of the month in Brick, NJ.

Warren Hospital Celiac Disease Support Group - You'll need to search on their calendar for meetings and call for additional info. They meet in Phillipsburg, NJ


Some other articles you may enjoy:

Are French Fries Gluten Free?

Hidden Sources of Gluten in Your Diet

Politics, Religions and Which is the Best Gluten Free Pasta

Advice for Traveling Gluten Free

3 comments:

  1. Just found this website today for kids with food allergies and it has a local support group finder: Kids with Food Allergies Foundation (the support groups are under 'find friends').

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  2. This is a really great list. Even as a lifelong Celiac, I find that a supportive community is really helpful. I wrote an article called Gluten Free Support Groups: Finding Your Flock that might be of interest to your readers.

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  3. Thanks Erin!

    For those who don't know, Erin runs The New York City Celiac Disease Meetup Group and has a map of every GF store/restaurant in NYC on her blog: New York City Gluten Free Map which I never go to the city without!

    ReplyDelete

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