How Do I Start a Gluten-Free Support Group?

Most people who join a celiac or gluten-free support group acclimate to their new gluten-free lifestyle much better (and faster) than those who do not. If you live in an area where no such support group exists, you might consider starting your own. If you find two more people interested in being in a group, you have enough people to get started. Rome wasn’t built in a day and the NYC Celiacs and Gluten-Free Living group didn’t start out with over 900 members (and counting!). To find out if you have a support group in your area already, check out this directory.

One of the main reasons that people don’t join their local support group is that they don’t want to be gluten-free to change their lives. They act like it’s not a big deal and in turn, make things harder on themselves than they have to be. Having to change your diet – and relearn how to eat as if you were a five-year-old – is a very big deal. It’s a monumental deal for most of us. If is was not difficult, 60% of patients told to follow a gluten-free diet would do it instead of eating whatever they want to while living on Pepto Bismol or other medications.

If you are someone who can’t find a local group to join, you might consider starting your own. Ask your doctor (if you have one) if they have another patient with celiac they can put you in touch with. Legally they can’t give you a patient’s information, but you can ask that yours be given to another patient. To be safe, just give out your e-mail address. Another way to connect with others is to ask the owner of your local health food store to put up a signup sheet for people in your area interested in joining such a support group. GIG is a great national organization that can help guide you in starting a support group.

Have an idea of how your group will work going in, but be open to your member’s suggestions as well. Will you meet once a month or every other month? Where will you meet? Ask the health food store owner or manager if they will allow your group to meet there during non-peak times or after hours. Most Whole Foods locations offer a free meeting space in their stores, as long as it’s a non-profit group. If you have just started a group or have been running one for a while, check out Tiffany Jakubowski’s article about how to have successful meetings.

If you are interested in creating a gluten-free dinner club, contact the leader of the local celiac support group to announce your new dinner club to their members. Please note that it’s not a great idea to eat out when first embarking on a gluten-free diet. It’s hard to learn how to eat at home and that really must be accomplished before someone starts venturing out to eat. You might get a lot of takers from a celiac support group and you may not. To get a restaurant to take you seriously, I think you need at least six members to start, but more would be better.

When working with restaurants, it’s usually safer to start out with places that already have gluten-free menus. Don’t assume they know what they’re doing in terms of gluten-free service just because of the existence of their gluten-free menu. Some places will have a firm grip on everything that entails and others won’t have anyone working there who even knows what gluten is. That’s right – a place can have a gluten-free menu and not know squat about what gluten-free actually means. That fact was one of the most shocking things I learned when I ventured out to eat again after my diagnosis.

You need to go over all things related to gluten-free food service with any restaurant you are considering hosting your group. Covering the ingredients is just part of the battle. It doesn’t matter that they start out with gluten-free ingredients if they prepare and/or serve your meals improperly. Do they know not to cook gluten-free pasta (or even vegetables) in wheat pasta water? Do they know that they can’t cut bread for other patrons and then use the same knife to cut tomatoes for their salads? Do they understand that picking croutons off a salad doesn’t make it safe for your members to eat? There is a ton of information to cover but if you’re willing to do the work, you will be rewarded in ways you can’t imagine in the beginning.

There are two national organizations that offer gluten-free training programs that you might refer your local restaurants to. GFRAP (gluten-free restaurant awareness program) is offered but the Gluten Intolerance Group of North America (GIG). The GREAT (gluten-free resource and awareness training) program is offered by the National Foundation for Celiac Awareness. Both are excellent programs and once a location in your area completes one of them, competition may heat up for the gluten-free dining business in your area. In these tough economic times, restaurants need every person they can get in the seats – whether they can eat gluten or not.

If you start any celiac or gluten intolerance support or dinner club group, but can’t afford a website to manage it, you can start a Google Group for free. This is a great way for you to connect with your members privately.  Once your support group has a website, make sure it is included in our Celiac Support Group directory.

UPDATE: Thanks to the Ingles dietitian (Leah) for reminding me that Facebook is an excellent way to start your own support group.