Celiac Disease

[Lisa]

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Online Support Groups: How They Help People Stay Gluten-Free

By Nicole M. Seitz, M.S.

The Internet has dramatically changed how people go about finding health information. In 2009, a Pew Research Center survey found that 61% of adults who use the Internet go online for health information1. And, a 2003 survey of people with celiac disease revealed that 70% used resources like the Internet, books, and support groups to find information about following a gluten-free diet, compared with 17% who received information from a medical doctor, and 13% who consulted a nutritionist2. There is no shortage of information online, from forum postings, blogs and health centers, to online retailers and organizations like NFCA dedicated to raising awareness.

Now, researchers are beginning to investigate how the Internet is providing support to members of the celiac community. A recent study analyzed an online exchange among members on a forum hosted by www.celiac.com3. (An online forum is like an electronic bulletin board where members can post questions to the community, and community members are free to respond and share in kind). The researchers were looking for patterns in the exchanges among forum members as a way to understand how online interactions may actually help individuals maintain a gluten-free diet.

Researchers chose to focus on one individual’s posting. Here is a forum member named Drew whose frustration level with following a gluten-free diet had reached a saturation point. Drew wrote: “I am so fed up with this diet…Has anyone ever decided to bag it in and just go back to a gluten filled diet?…I have been strictly gluten-free since being diagnosed, but I am ready to quit.”3. Researchers then carefully studied all the replies to this initial posting, examining word choices, personal stories shared by other forum members, and other information to identify patterns in how the community responded to this individual in distress.

What they found was that, while sympathetic to Drew’s frustration and wish that the diet could just be abandoned, community members who replied let Drew know that quitting simply was not an option. Community members shared personal stories about times when they knowingly or accidentally ingested gluten and the unpleasant consequences experienced. Nearly everyone who responded concluded that discontinuing a gluten-free diet was simply not a viable alternative for anyone interested in maintaining their health as a celiac. The researchers go on to suggest that compliance with the gluten-free diet is a “collective phenomena rather than a mere individual accomplishment.”3

It makes sense that having support helps people with celiac disease maintain a gluten-free lifestyle. This study contributes an insightful examination of how, by sharing our individual stories, we help to create a culture of compliance with gluten-free living within the celiac community.

Sources:

Fox, S., & Jones, S. (2009). The social life of health information: Americans’ pursuit of health takes place within a widening network of both online and offline sources. Washington, DC: Pew Research Center.

Lee, A., & Newman, J. (2003). Celiac diet: Its impact on quality of life. Journal of the American Dietetic Association, 103(11) 1533-1535.

Veen, M., Molder, H., Gremmen, B., and Woerkum, C. (2010). Quitting is not an option: An analysis of online diet talk between celiac disease patients. Health, 14(1), 23-40.

About Nicole Seitz

Nicole M. Seitz, M.S. is a gluten-intolerant psychotherapist with a passion for helping people adjust to the emotional impact of living with celiac disease and other chronic health conditions. Her website is www.nicolemseitz.com.

[gary'sgirl]

Thanks for sharing this article, Lisa. It was interesting and I think very true. I have learned more from reading everyone's posts and replies on this forum than from any other one place that I have gone to for help and info.

~Sarah