Benefits of a Celiac Support Group

Why Should You Join or Form a Support Group?

From Nancy Lapid, former About.com Guide

Updated April 15, 2009

About.com Health's Disease and Condition content is reviewed by the Medical Review Board

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After a diagnosis of celiac disease, doctors will usually perform blood tests at regular intervals to make sure the patient is successfully following the gluten-free diet. Patients who've been able to avoid gluten will have negative blood test results. Positive blood tests usually mean the patient is still eating gluten, either accidentally or by consciously cheating on the diet. (Very, very rarely, an antibody test will be positive because of a condition called refractory celiac disease.)

Studies have shown that one reason why some celiac patients can't stay gluten-free is that they don't have a support group to encourage and help them. Whether you're new to the diet and struggling, or you're a veteran with tips to share, a good support group can provide emotional and practical benefits.

Across North America, celiac patients and their families can join local chapters of:

If you don't know of a celiac support group near you, one way to find one is to go to a search engine such as Google and type in the words "celiac support groups" plus the name of your state. Another way to find a local group is on the website of MeetUp.com. Enter the word "celiac" in the search box on their home page.

If your town doesn't have a support group for celiacs, the national organizations would be glad to help you start one. It would also be a good idea to involve a nutrition professional from your area.

Another option is to join online support groups and participate in online discussion forums. For example, why not post a note in our forum on a topic of interest to you? Sign up for my weekly newsletter, and let me know what topics you'd like me to cover.

Teenagers with celiac disease might want to join one of the many celiac groups on Facebook or MySpace.

Here are some specific reasons to seek out a support group:

Celiac support groups can help you build a network.

Meeting others with celiac disease who are following the gluten-free diet can help you feel less alone by providing a safe and welcoming environment, filled with compassion and understanding -- not to mention gluten-free refreshments. Imagine how nice it would be to have a large circle of gluten-free friends and acquaintances for pot-luck dinners, supper clubs, and kids' parties.

Celiac support groups can teach you new ways to cope.

Support groups offer the chance to benefit from the collective experiences of all the members. For example, you might be able to exchange information about celiac-friendly local restaurants, easy meals to prepare, and which local stores have the best selection of gluten-free foods and the best prices. You might also be able to get group discounts from stores or mail-order vendors.

Celiac support groups can help you get motivated.

Support groups also may encourage you to take more responsibility for your diet, to feed yourself better, and to stick to the diet even if you don't get symptoms when you eat gluten and your feel like giving up. Also, they can encourage you to seek professional help if you need it, and they might help you tap into community resources you hadn't known about.

Celiac support groups can help reassure you about the future.

Sharing experiences and making supportive new friends can make you feel better about life in general. Maybe you're worried about dating or having to be gluten-free on business trips or family visits. Maybe you're worried about your celiac child going away to college. Seeing how others handle such challenges might give you renewed hope for yourself and your family.

_Sources:

The Mayo Clinic