The Evolution of Gluten-Free Support Groups

Cynthia Kupper, CEO of the Gluten Intolerance Group (GIG), describes the challenges facing gluten-free support groups as they encounter new technology, changes in funding sources and, perhaps most important, changes in the kinds of goals they can set and accomplish.

Studies show that support is needed to successfully adjust to living with gluten-related disorders. But where do you go to find information about living gluten free? Where do you find the answers to questions about shopping or cooking? How do you know the information is trustworthy?

Forty years ago nonprofit patient support groups, such as the Gluten Intolerance Group (GIG), were formed to help people with what was then considered a rare genetic disorder—celiac disease. These organizations provided resources that someone with celiac disease needed: information on diagnosis and nutrition, details on what you could include and had to avoid on the gluten-free diet, shopping lists, recipes, educational conferences and food shows.

Some even sold gluten-free cookbooks and ingredients, such as xanthan gum, that were needed but not yet widely available. A little more than 20 years ago the Celiac Disease Foundation (CDF) and National Foundation for Celiac Awareness (NFCA) were established and joined the other national celiac organizations in providing the support and drive to increase diagnosis and to ultimately find a cure.

In 2004 when the National Institutes of Health (NIH) held the consensus conference on celiac disease, the list of dietitian experts could be counted on two hands. Celiac disease research centers were still relatively rare in North America, but the breadth of support provided by the nonprofits continued to grow and started to pick up steam over the next several years.

Gluten-Free Support for Profit

Around 2008, as the nonprofits were already struggling with a nationwide economic recession and a consequent rapid drop in donations, they also started to see for-profit businesses beginning to offer the same activities and services that had always been essential to the survival of support groups. Education conferences and gluten-free food shows were increasingly held by for-profit businesses.

Consumers started buying gluten-free books and products from Internet retailers, further reducing support organization revenue. Nonprofits could not, and still cannot, easily compete with for-profit companies that have more resources at their disposal and less need for transparency.

About the same time, food makers started to turn their attention from the dying low-carb food movement toward the growing popularity of gluten-free foods.

This, along with an increased awareness of celiac disease and gluten sensitivity in the medical field, accelerated the rapid change in the gluten-free community.

Celiac research centers faced some of the same issues as nonprofit organizations: government funding was frozen and philanthropy grants were cut. Meanwhile these centers wanted consumer-focused support groups to help fill the gap by raising the money for research. The challenge was that nearly all of the funding sources for the majority of the consumer-focused nonprofits were being shifted to for-profit businesses.

Meanwhile the NIH required that consumer information be made available free of charge, preferably on a website, before it would promote a celiac disease organization. As more information was made available on the Internet, patients saw less value in becoming members of a support group, which had once been the primary source of specialized gluten-free news, advice, recipes and more. As a result, membership numbers have declined.

A growing number of bloggers and for-profit businesses started to attract corporate sponsorship money, which was another source of revenue on which nonprofits had relied. With so much competition for sponsor and partnership programs, specialty gluten-free and mainstream companies are now turning away some of the nonprofit programs they had supported for many years.

Today’s Gluten-Free Support Group Needs

So, you may ask, is there a need for nonprofits today?

Have support organizations become the dinosaurs facing extinction? And if they survive, how do they remain relevant?

I believe there is still a need for consumer-focused, nonprofit support groups and organizations. No matter what changes have occurred over the past four decades, those newly diagnosed with gluten-related disorders still need help in adjusting to a gluten-free lifestyle.

The day you are diagnosed can still be overwhelming and filled with questions, uncertainty and doubts. “Can I ever go out to eat again?” “Gluten-free food is so expensive. I don’t have that kind of budget.” “Is my own kitchen safe enough for me to even eat in anymore?”

These questions and worries run through your mind as you confront the reality of a permanent, life-changing diagnosis. Feelings of isolation and self-doubt often come shortly after.

When you, your spouse, your child or another family member is starting the gluten-free diet, the face-to-face support of others who understand what you are going through helps tremendously. In that way, someone who has celiac disease or gluten sensitivity isn’t any different from someone facing diabetes or a heart condition that requires broad lifestyle changes.

Some nonprofits continue to have local support groups that provide the undervalued benefit of getting to talk with another human being who has struggled in the supermarket, while making dinner, during the holidays, and eating out in a restaurant.

Support group members can offer advice on local stores with the lowest prices on gluten-free products, nearby restaurants that offer the best gluten-free options and physicians and dietitians knowledgeable about celiac disease and gluten sensitivity. Support groups often invite speakers who share information about everything from baking a decent loaf of gluten-free bread to the latest advances in medical research.

By becoming part of a support group, those who are newly diagnosed regain their sense of being a part of a functioning community. While message boards and blogs serve a function, they don’t provide the face-to-face interaction you get as a support group member.

Along with providing professional and emotional support, nonprofit agencies are among the biggest advocates for consumers. We advocate on government positions related to gluten-free food in schools, gluten-free labeling standards and gluten-free training and education for many industries that have a direct impact on the lives of gluten-free consumers.

Nonprofits, not only in the gluten-free industry but across the board, have seen a change in direction and have to adapt, or they will face premature demise. Which brings us to the future and how nonprofit support organizations are taking steps to remain relevant.

Despite all the change, new gluten-free consumers’ questions and needs have remained pretty much the same in my years working with GIG. What has changed is where and how they get their answers and support.

Excitement and Danger

We all know that, despite what the late-night talk shows and comedians tell us, the gluten-free diet is more than a fad. There is an increased interest in gluten-free food in general, and it builds on the market created for people who have gluten intolerances and celiac disease and rely on gluten-free products by necessity. This increased interest is driving an influx of information, products and services targeting the gluten-free community.

In my opinion, while this is exciting, it can also be dangerous. No one is complaining about finding new products every week and having more options than ever before. Obviously this tremendously improves the gluten-free quality of life. But when it comes to professional, reliable information, the community needs to be aware that the quality and accuracy varies widely from source to source.

Nonprofits can, and should, be a source for trusted information in the gluten-free community. All have medical advisory boards of leading experts in medicine, research and diet management. GIG’s medical advisory board includes researchers such as Alessio Fasano, M.D., Joseph Murray, M.D., and Shelley Case, a registered dietitian with an international reputation.

The future of the support groups lies in helping consumers distinguish reliable, fact-based information from sensationalized news and views that are put forward regarding treatment, be it through diet or the pharmaceuticals that are currently being researched.

GIG relies on current medical research to help guide consumers. For example, enzymes and digestive aides are promoted by some sources as being able to protect the gut or digest gluten. But we know this has not been proven and advise those who have celiac disease not to be fooled by this misinformation.

This is just one example of GIG setting the record straight. Along with the celiac research centers, support groups have a role in making sure that those with celiac disease and gluten sensitivity aren’t preyed upon by high-profile, quasi-experts doling out unfounded medical and diet advice.

Nonprofits also have to recognize the changes already underway and respond to them. We are already working at newer, broader levels to meet the complex needs of those who have celiac disease and gluten sensitivity.

For instance we are identifying global issues that will improve diagnosis rates and reduce the lag time between the onset of symptoms and diagnosis. We are improving the lives of a variety of age groups by training and educating providers who work with them. We are assuring the highest standards are in place for food services and manufacturers of gluten-free foods. Gluten-free consumer needs span the globe, and our focus has to be broader.

We are using advances in technology to make information that was once shared at
support group meetings available to a much larger audience. We have seen a shift in the demographic age of the gluten-free consumer and are adapting with programs for all walks of life. Once the typical support group member was middle aged. Now the fastest-growing groups of gluten-free consumers are young adult males and health-conscious consumers.

To maintain our position in this changing world, support groups such as GIG need to look at ways to improve a consumer’s life overall. We are focusing on meeting consumers on their level, where they are in their gluten-free journey and through their preferred means of communication.

New Efforts

And our efforts do not stop there. We aim to fund psycho-social programs to build positive daily living habits. As families live ever faster-paced lives, we are finding creative ways to get the attention of, and provide support to, children with celiac disease and their parents. Generation GF is a new program designed to help children and teens build health, self-esteem and confidence in their ability to manage their condition. One goal is to create an international community for this youth that will also embrace the needs of other age groups.

We see education of the food makers, restaurants, college and university dining halls, public school cafeterias and more as part of our mission. GIG was a leader in establishing reliable, independent third-party certification of gluten-free foods through our Gluten Free Certification Organization. And we were one of the leaders in reaching out to restaurants and other food service organizations to provide training in safe gluten-free meal preparation.

We now aim to educate insurance companies about the need for regular screenings and nutrition education to manage gluten-related disorders, so that more people receive the help they need to maintain a healthy gluten-free lifestyle. We are also looking for ways to reduce the cost of living gluten-free for those with limited resources. These new points of outreach will help us dodge the meteor heading in our direction.

Overall, nonprofit gluten-free organizations have to establish ourselves as leading authorities that consumers turn to when they want to sort through all of the opinion and get to the facts.

The original purpose of celiac support groups still remains true. But the gluten-free world is ever more complex as more and larger players get involved. In response nonprofits are providing support at a higher level, even reaching the highest decision-making level in many industries to make the greatest impact on the lives of those living gluten free.

GIG recognizes the challenges ahead, but we are committed to continue serving those who have celiac disease and other gluten-related disorders. We don’t accept the idea that gluten-free consumers don’t need support groups any longer, though we recognize that what they need us for and how they get our help is changing.

BEHIND THE SCENES

Much of what a support group does to improve life for everyone who is gluten free goes on behind the scenes—for example, work on the allergen- and gluten-free label rules and ongoing efforts to develop drugs to treat celiac disease—and we continue to advocate for gluten-free consumers on many levels through private industry and government agencies.

We are making information readily available online as we recognize that busy families sometimes don’t have time for support group meetings and are accustomed to getting information instantaneously. But we also continue to support our local chapters in their quest to provide individualized attention and help. These may be shrinking in number, but the work they do still carries great importance.

So if the question is whether support groups are dinosaurs, my answer is no. We don’t intend to become fossils and instead will evolve in the best way to serve the people we were created to serve.

Cynthia Kupper, a registered dietitian, has led GIG for the past 20 years. She developed its Gluten-Free Certification Organization and Gluten-Free Food Service Certification. She is the author of professional papers and a training manual for dietitians and helped develop the materials used on the Academy of Nutrition and Dietetics Evidence Analysis Library on Celiac Disease.

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