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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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The Cheesecake Factory’s “Brown Bread” Is Coming to Stores, So Prepare to Stock Up!

The Cheesecake Factory is mostly known for, well, cheesecake, but its “brown bread” comes in at a pretty close second in popularity. For the first time ever, you can now buy the famous honey-wheat bread in grocery stores, so you don’t have to have a dinner reservation in the works to enjoy the addictive appetizer. The Cheesecake Factory is rolling out packaged Brown Bread in select grocery stores nationwide as early as this week, so keep your eyes peeled in the bakery section. The bread will be available in a few varieties: “heat and serve” dinner rolls (eight-pack for $3), mini baguettes (two-pack for $3), and ready-to-eat sandwich loaves ($4).

A representative for The Cheesecake Factory confirmed that the bread will first launch in Winn Dixie, Bi-Lo, and Harveys grocery stores, and additional markets nationwide will follow. The best part is this is a permanent product launch, so there’s no need to rush before it flies off shelves. Brown Bread is the latest item to join The Cheesecake Factory’s at-home line, which currently includes cheesecake mixes, chocolates, and cookie and cupcake mixes. It’s never been easier to make your own Cheesecake Factory recipes at home!

12 Cheap Amazon Prime Gems For Foodies – Everything Is Under $29

If you’ve ever gotten lost in Amazon’s beautiful stream of retro kitchen goodies, especially those that every food-lovin’ person needs (or, you know, wants to put on their Instagram), you’re not alone. Whether you dream of the day you’ll own a multipurpose stovetop/coffee maker/toaster oven appliance, or just wish you had some oven mitts that looked more like bear claws, we found 12 kitchen products you can’t beat, all available on Amazon Prime. Look ahead, and prepare to swoon.

Put Together a Vegetarian Italian Chopped Salad

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One of my favorite salads of all time is the Italian chopped salad. Whenever I go to any sort of Italian-ish restaurant or pizzeria, it’s my go-to order. And since I’ve had a lot of variations of the Italian chopped salad, I also have lots of opinions about it. When it comes to Italian chopped salads, everything needs to be, well, chopped properly. Everything should be similar in terms of size. And the dressing! Lots of olive oil and oregano and red wine vinegar are key.

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But there are times when I’m craving a healthier salad, so here is a different iteration, a vegetarian option. Turns out, I love it without the salami and didn’t miss it one bit. One of my favorite Italian chopped salads is from Alimento in Los Angeles and they do this amazing thing by taking the garbanzo beans and pureeing them and placing them at the bottom of the salad plate. It is SO good. So I took inspiration from them and did it in this version and it’s just delightful.

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I hope you enjoy this vegetarian version. And of course, if you’re craving the meat, chop up a bit of salami and add it away!

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Vegetarian Italian Chopped Salad

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Try this alternative vegetarian Italian chopped salad with lots of olive oil, oregano and red wine vinegar as a dressing. (Recipe Credit: Adrianna Adarme of Fresh Tastes)

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Ingredients

  • Dressing:
  • 3 tablespoons olive oil 
  • 3 tablespoons red wine vinegar
  • 2 teaspoons dried oregano 
  • 1 teaspoon black pepper 
  • 1/2 teaspoon salt, and more to taste 
  • Pureed garbanzo beans:
  • 1 (15-ounce) can of garbanzo beans, drained 
  • 1 garlic clove, peeled and smashed
  • 2 tablespoons warm water
  • Juice from 1/2 lemon
  • Salt
  • Salad:
  • 1/2 red onion, diced 
  • 1/2 pound provolone, sliced into 1/4-inch cubes
  • 1/2 cup pickled pepperoncini, roughly chopped
  • 1/2 pint cherry tomatoes
  • 2 Persian cucumbers, diced
  • 1 head of romaine lettuce, thinly sliced
  • 1 head of raddichio, thinly sliced
  • Parmesan, as garnish
  • Black Pepper, as garnish

Directions

  1. To Make the Dressing: To a small bowl mix the olive oil, red wine vinegar, dried oregano, black pepper and salt. salt and then add the oregano. Give it a taste and adjust the salt according to your liking.
  2. To Make the Pureed Garbanzo Beans: To a food processor or high-powered blender, add the garbanzo beans, along with the garlic clove, water, lemon juice and a few pinches of salt. Pulse until smooth, scraping down the sides as needed. Give it a taste and adjust the salt to your liking.
  3. To Assemble the Salad: To assemble the salad, add the red onion, provolone, pepperoncini, cherry tomatoes, cucumbers, romaine lettuce and raddichio to a large bowl. Pour the dressing over the salad and toss until thoroughly combined.
  4. To serve the salad, add the garbanzo puree to the bottom of a serving bowl. Smooth it out into one even layer. Add the salad mixture on top and serve. Top with a tablespoon or two of grated parmesan and a few turns of black pepper.

Yield: Serve 4-6


Adrianna Adarme - PBS Food Fresh Tastes BloggerAdrianna Adarme is a food blogger and author living in Los Angeles, California. She writes the blog A Cozy Kitchen, where she shares comforting, everyday recipes from her kitchen. She recently authored her first cookbook, PANCAKES: 72 Sweet and Savory Recipes for the Perfect Stack. She’s a lover of breakfast, pie (and sometimes even pie for breakfast), corgis and cute things. You can find her on Twitter, Instagram, or Facebook.

Prepare to Get Fizzy: Sparkling Everything Is THE Drink Trend of 2018

People love to sparkle, and I’m not just talking about swiping on extra highlighter. This year will be the year of sparkling everything in the world of drinks: from a surge of kombucha-like probiotic waters to an increased desire for guilty-pleasure “sodas” that are actually healthy, 2018 is all about getting fizzy. Perhaps the Kirakira craze has made its way to the food sphere – it’s the edible version of the shimmer-and-glitter phenomenon, if you will. Or maybe it’s just the fact that the word “sparkling” makes everything seem a little bit more fun, cold-brew coffee included (looking at you, Stumptown, which has debuted Honey Lemon Sparkling Cold Brew).

This year, we’ll see more eye-catching sparkling waters on shelves than ever before; La Croix’s comeback was only the beginning. Look out for Alta Palla, the brightly colored cans of sparkling waters and juices, at Whole Foods and Good Idea Drinks, the “Swedish sugar buster” that wants to help kick people’s soda habits one Sparkling Orange Mango Water at a time.

If you’re feeling adventurous, you might go for a pickle-flavored probiotic gut shot that tastes like garlicky pickle soda. Maybe you’ve thought about giving up coffee but still want the caffeine fix, and you’d be able to turn to Phocus, a Kentucky-based company that makes naturally caffeinated, calorie-free sparkling water (the secret is extractions from green tea leaves). Next-level machines will even translate the trend from stores for the masses to homes for the serious aficionados. Drinkmate can carbonate anything from lemonade to wine and will help satisfy seltzer cravings at a moment’s notice.

Spark your interest (see what I did there?) by trying out some of the unique recipes ahead that put an unexpected fizzy twist on classics, like green tea “soda,” homemade sparkling cold brew, and a bubbly fruit smoothie. Embracing sparkling everything is just one of the biggest trends of 2018.

Trader Joe’s Is Selling Churros Bites, and We Can’t Contain Ourselves

Forget having to line up at the fair or take a trip to Disneyland to get your hands on delicious churros, because Trader Joe’s has given us easier access than ever. The grocery store chain is now selling churros bites but instead of fried, they are baked. The corn puffs are described as caramelized, crunchy, and coated with cinnamon and brown sugar. The 7-ounce bag costs $2.49 and can be found in the snack aisle. Run, don’t walk, to get your hands on this treat!

Warm Up with Vegetarian French Onion Mushroom Soup

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I’m clearly on a vegetarian kick! One of my favorite things is making dishes that are traditionally meat-centric and turning them into vegetarian-friendly foods. While there is no meat in traditional French onion soup, it does lean on rich beef broth to give it a really delicious savory flavor.

VegetarianFrenchOnionSoup

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Instead of including the beef broth, I decided to add sliced cremini mushrooms to attempt to add some deep flavors to the broth. It worked! It’s super delicious and tasty and of course, it wouldn’t be French onion soup without a lot of Gruyere cheese and slices of bread on top. It’s the perfect soup for cold nights when it’s blisteringly chilly outside. This soup miraculously still has that deep, savory flavor to it thanks to the caramelized onions, a bit of butter and of course sautéed mushrooms.

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Vegetarian French Onion Mushroom Soup

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This alternative vegetarian French onion mushroom soup still has that deep, savory flavor making it perfect for cold nights. (Recipe Credit: Adrianna Adarme of Fresh Tastes)

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Ingredients

  • 1 tablespoon olive oil 
  • 1 tablespoon unsalted butter
  • 2 yellow onion, peeled and thinly sliced
  • Salt
  • 8 ounces cremini mushrooms, thinly sliced
  • 5 cups of water 
  • 6 ounces Gruyere cheese, grated
  • French bread, sliced

Directions

  1. To a medium pot, set over medium-low heat, add the olive oil, butter, onions and a few pinches of salt. Cook until softened, about 5 minutes. Spread the onions out into an even layer on the bottom of the pan. Stirring occasionally, cook for about 10 to 15 minutes until caramelized. Turn the heat to medium-low and cook for an additional 15 minutes, again, stirring occasionally. Add the mushrooms; continue cooking until the mushrooms are softened, about 10 minutes. Add the water and bring to a gentle simmer. Cook for about 5 to 7 minutes. Give it a taste and adjust the salt to your liking.
  2. Divide the soup amongst the soup bowls. Top with slice of bread and a huge handful of shredded cheese. Transfer to a baking sheet and place it under a broiler until the cheese is melted and bubbly, about 5 minutes. Serve immediately.

Yield: Serves 4


Adrianna Adarme - PBS Food Fresh Tastes BloggerAdrianna Adarme is a food blogger and author living in Los Angeles, California. She writes the blog A Cozy Kitchen, where she shares comforting, everyday recipes from her kitchen. She recently authored her first cookbook, PANCAKES: 72 Sweet and Savory Recipes for the Perfect Stack. She’s a lover of breakfast, pie (and sometimes even pie for breakfast), corgis and cute things. You can find her on Twitter, Instagram, or Facebook.