Gluten and Allergy Apps
That understanding is why many people with celiac disease, food allergies or asthma log onto social media sites, such as Facebook and Twitter.
“There are a lot of people out there struggling,” Mitchell says. “It’s really powerful to be connected with others and know that you’re not alone.”
Gina Clowes, founder of AllergyMoms.com, enjoys connecting with other moms on Facebook and Twitter. The food-allergy advocate and coach says she loves the interactivity.
“Parents and patients benefit from these conversations because we’re in touch with a community of others who live in our allergy world,” she says. “Allergy families often face ignorance, disbelief, even outright hostility. So it can be a great comfort to know that you aren’t the only one encountering this.”
Bajowala uses Facebook and Twitter to dispense evidence-based medical information. In 2009, she created her blog, “Allergist Mommy.” Writing as both an allergist and the mother of children with allergies and asthma, she blogs about her own experiences with her children’s allergies and her own allergy to blueberries, as well as discussing medical news that might not yet be mainstream, such as Chinese herbal medicine. Posting her blog on Facebook and interacting with people on Twitter allows her to reach more people, she says.
“I view my role as a medical specialist to be predominantly that of an educator,” Bajowala says. “The Internet allows me to disperse accurate information as widely as possible.”
She cautions that online interactions aren’t meant to replace face-to-face meetings with doctors.
“Technology isn’t going to supplant your relationship with your physician,” she says, adding that information gained through reliable Internet sources can promote open communication with primary care physicians and specialists.
Hahne, who consults Facebook and Twitter each day along with the other allergy and asthma apps she uses, says she takes some information on social media sites with a grain of salt. But the product postings are helpful, she says, because they alert her to new allergy-friendly products and she can often determine if companies have changed ingredients. Hahne also follows certain allergists on Twitter to see what they recommend for patients with conditions similar to hers.
Over the past couple of years, the number of board-certified allergists interacting with patients through social media websites, blogs and support groups has increased. Over 100 allergists were on Twitter during the 2012 American Academy of Allergy Asthma & Immunology (AAAAI) meeting, with 30 simultaneously posting thousands of tweets tagged #AAAAI, according to an “Allergy Notes” blog post by Ves Dimov, M.D., an allergist/immunologist and assistant professor of medicine and pediatrics at the University of Chicago. These tweets meant that information presented to the 5,000 medical professionals at the meeting was dispersed to 250,000 people via Twitter, according to tweetreach.com.
Social media has helped Paul Antico better understand the food allergy and celiac communities. Recently, he learned that several people had been “glutened” at restaurants with gluten-free menus. Looking into it, he found that some of these eateries hadn’t properly trained their staff, yet they were advertising as gluten free.
Antico would like to see restaurants post certificates that show they’ve been officially trained to safely serve people with food allergies, celiac disease and other special diets. On AllergyEats, he includes a logo for restaurants trained by Kitchens with Confidence, an organization that offers the program AllerTrain to teach food service organizations how to safely serve diners with special diets.
“All this helps me figure out how to better serve the community,” says Antico, who sits on the boards of the Asthma and Allergy Foundation of America and the AAFA New England chapter.
As millions of people navigate life with celiac disease, food allergies and asthma, they’re turning in increasing numbers to apps and social media for help. Fortunately, this growing demand is being met with quick, easy-to-use ways to locate recipes and restaurants, track medical conditions and find an understanding shoulder to lean on. It all makes life easier for those on special diets.
“Keeping kids safe who have food allergies is already a full-time challenge,” says Brooke Adams. “Anything that helps with that task is a great thing.”
Wendy Mondello (tasteofallergyfreeliving.blogspot.com) has two children, one with multiple severe food allergies. She lives in North Carolina.