How to Find a Celiac Support Group… Or Start Your Own!

A recent diagnosis of celiac disease can be scary and isolating. You may suddenly find that the world around you feels like it’s loaded with gluten landmines. The kitchen, the grocery store, restaurants, parties, travel…

The combination of these can very overwhelming when you’re new to gluten-free living, instead of fun or exciting. Well, finding a good celiac support group can be just the remedy you need.

The internet is a fabulous source of support, but there’s something very special about chatting (and eating) with other celiacs live and in person. Fortunately there are celiac support groups all over the United States, and all over the world!

There’s no better place to get emotional support, learn about which local restaurants are safe to eat in, sample new gluten-free products, exchange recipes, or get a referral to a knowledgeable doctor or nutritionist. There are so many benefits to being part of a celiac support group.

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Even for people who’ve had celiac disease for a long time, celiac support groups can be great social opportunities and help keep you in the loop about new medical developments, new gluten-free foods on the market, and more. You will also have the opportunity to support newly diagnosed celiacs by sharing your own experiences, which can be very gratifying.

How Do I Find a Celiac Support Group?

Try these websites to find support groups near you. Also try contacting local hospitals, which often host these groups, or look for flyers at health food stores and restaurants that serve the gluten-free community.

• Local Celiac Support Groups in the United States
• Celiac Support Groups in Canada
• Raising Our Celiac Kids (R.O.C.K.) Support Groups for Parents of Celiac Kids

Don’t forget to look on meetup.com to see if there are any local gluten-free, food allergy, or celiac disease meetup groups near you. These groups sometimes don’t list themselves with the directories of support groups because they are sometimes less formal.

What If There’s No Celiac Support Group Near Me?

You have two options. The first is to look for online support, and the second is to start your own! Let’s look at both options.

Here are some online celiac support groups:

• Gluten-Free Faces Online Community
• Celiac.com Forums

A simple internet search can also find you gluten-free blogs throughout the world, including some that may be based in your region.

Here are some steps for how you can start your own celiac support group:

• Find a place to meet that is convenient for a sizeable population of people. Common choices include hospital meeting rooms, church or synagogue rooms, rotating among different gluten-free / celiac-friendly restaurants, or even the dining area at a Whole Foods or other health food store.
• Set a meeting time and date, and get the word out. Do so via Facebook, Craigslist, local newspapers, gastroenterologists and nutritionists in the area, hospitals, schools, community centers, health food stores, community e-mail lists, or grocery store bulletin boards. You can create flyers or postcards, or stick to online publicity to save money and time. A combination of both is ideal.
• Decide upon activities and agenda items for the first meeting. Make sure to include ample time at the beginning for people to introduce themselves and at the end to set the agenda and date/time for the next meeting. You might want to invite a speaker that specializes in celiac disease or the gluten-free diet or have a recipe swap where everyone brings in multiple copies of their favorite gluten-free recipe and then each person leaves with a pile of new recipes from other members.Some groups do cookie swaps, share samples donated by grocery stores or gluten-free food companies, have cooking demonstrations, organize fundraisers or awareness events, and more. Don’t forget to offer gluten-free refreshments!
• Keep the momentum going. Make sure to get everyone’s phone and e-mail address at each meeting and keep some kind of e-mail list or Facebook group going so that people stay in touch and stay excited about the group. Delegate, and eventually create a structure to the group so that one person brings refreshments, another plans programming, etc.

If you want to make your job easier, and gauge interest in the group before you set a meeting date, consider using meetup.com. It’s an easy way to get the word out about your group and connect with other locals who are interested. You can even “crowdsource” (brainstorm event ideas among the group) and poll people on times/locations before setting up a meeting or other event.

If you need help setting up your support group, consider contacting the National Foundation for Celiac Awareness for help.