Never Enough Cooks: Group’s Recipe Exchange Keeps Guts Happy
Just one month after launch, Celiac Recipe Inspiration Location is growing quickly based on a simple formula: sharing food recipes and personalized information about celiac disease.
Eating staple foods like bread, pasta, cookies, cakes, and using commonplace products like prepackaged food, lip balms, some toothpastes and vitamins spells disaster for the 2 million Americans with Celiac Disease. Defined as “a [genetic] chronic digestive and immune disorder that damages the small intestine” by the National Institute of Diabetes and Digestive and Kidney Diseases, Celiac Disease often makes preparing meals and ingesting adequate nutrition hard for those with the disease and their caregivers. After consuming gluten, individuals may experience a range of symptoms from diarrhea and stomach aches to malnutrition and osteoporosis depending on the degree of their gluten intolerance or sensitivity.
Facing unique nutritional needs and reduced food options, Celiac sufferers are hungry for information. Just one month after launch, Celiac Recipe Inspiration Location, a private Facebook group, already had more than 400 members. The group, 85% of which are women, is a prime example of how Facebook groups facilitate the exchange of information that’s not commonly available through traditional health care providers.
When Audrey O’Brien Gunther launched the group on March 25, 2021, the group’s sole administrator and moderator sought to create a hub for recipe exchange. She describes the group’s goals for the group in the about section.
[The group is] a fun place to share recipes and images to help figure out what to prepare for yourself and family. I will share recipes with mainly whole food ingredients because I feel my best when I eat that way but all kinds of recipes are welcome.
Gunther maintains an active role in the group, admitting an average of 16 new members per week and posting gluten-free recipes she’s made or plans on making. The group’s rules are minimal compared with other larger groups.
Among more than roughly 100 English-language Celiac Disease Facebook groups, Celiac Recipe Inspiration Location isn’t the largest (38,480 members founded in 2017) or the smallest (6 members founded in January of 2021). It’s also not the only group focused on recipes. Despite the competition, Celiac Recipe Inspiration Location seems to thrive because of its authenticity and inclusivity. One group member commented, via Messenger:
A lot of the [group’s] pictures are taken straight from someone’s phone. The lighting isn’t always the best and sometimes there’s children or a stain on the side of the plate. Many of the homemade recipe pictures are from people’s dinner tables, which makes the group feel more real than other celiac disease recipe FB groups where all the posts look like they’re too perfect to touch. Here, I feel like it’s real people doing real things and getting realistic, cheap, and convenient recipes from one another. (Female age 21, 04/20/21)
Posts showing everyday meals in real environments abound.
Quick easy tasty dinner! What’s for dinner in your house tonight? (04/20/21)
I had a taste for cheeseburgers last night. I used the Canyon Bakehouse GF English muffins for a bun and it held up really well. We made some potato salad and smashed Brussel sprouts to go with it. (04/18/21)
Inclusivity also boosts the group’s growth, another member said via Messenger.
One reason that the group attracted me and possibly other members is that it was really inclusive. Individuals of all experience are allowed, plus you don’t have to take on an active role. (Female age 26, 04/20/21)
Another member, via Messenger, said she likes the group’s openness to newbie questions:
There’s no shaming or judgement here. It might seem like a weird thing when it’s common and to have food allergies or restrictions, but in some groups I’ve gotten a lot of passive judgement especially when I was recently diagnosed and really clueless. It seems like there are a lot of newbies here and they’re all asking questions and I love responding to them because I know how scary it is. Here, I find myself also unafraid to ask. (Female age 26, 04/10/21)
Recipes abound on Google, but the group provides context, another member said via Messenger.
With celiac disease gaining more attention recently, I first started with a simple google search, but I found that I was looking for more than straightforward recipes. I was looking for guidance and connection too. (Female age 19, 04/20/21)
While Gunther launched the group primarily to share her personal recipes and experiences, the group has evolved quickly in response to the needs of individuals across the spectrum of gluten sensitivity and intolerance. Interviewed by Messenger, a member believes the group welcomes all levels of experience and familiarity with the disease.
Here, everyone shares what works for them. Celiac disease and our experiences with it vary so much, so it takes a lot of trial, error, and pain or discomfort from the errors. I got diagnosed 5 years ago, so I’m more familiar with what recipes or foods will get me the nutritions I need without literally or metaphorically killing me. However, my niece just got diagnosed last week. I recommended the group and we both love it. I get to see and try all the new recipes I never would have thought of while she learns through others what to look out for and what is safe. (Female age 26, 04/17/21)
Threads quickly spiral beyond recipes. When one member asked: “Does anyone know of any certified gluten free dried split peas?” the comment section included secondary questions and answers like “I’m new at this — why would they contain gluten?”, “They wouldn’t normally but cross contamination is the worry,” and “I just rinse them well before cooking. I’ve never had a problem.”
Commenting via Messenger, another newly diagnosed member said the group has helped her navigate life with Celiac Disease.
Often when some people say oh no that’s an unsafe food, I don’t really understand why. I just got diagnosed recently and I came home with a pamphlet of dos and don’ts from my doctor, but it’s not quite helpful. He may be good at diagnosing the disease and be able to tell me in general terms what I can and can’t eat, but my doctor’s never had celiac. He can’t tell me what to eat when I’m going out to eat or what food substitutes are available when I want some nice Italian food. Did you know that some candy and lip balms have gluten? See, it’s the little everyday things that only someone with celiac disease would know. I get more useful information for the day to day here than from my providers. (Female age 19, 04/06/21)
The recipe exchanges central to members’ interactions in Celiac Recipe Inspiration Location provide a wealth of tips, tricks, and recipes for making meals and selecting dishes inside and out of the home. Taste is another important topic for the group.
I love that the recipes recommended or shared are often ones people have tried. There are some gluten-free foods out there that make my gut happy, but they taste horrible. I couldn’t stand it. It’s just awful because what you can eat is limited by celiac disease, so if you don’t like what you can eat then it takes the joy out of eating and can lead to a whole host of other food related issues. (Female age 27, 04/15/21)
Both recently diagnosed and veteran members with Celiac Disease continue to gain and share knowledge about eating in a manner that excludes gluten while also providing adequate nutrition and great taste.
