When Judy Thorne, an Indianapolis grandmother who’d spent her life cooking meals for four children, received a diagnosis of celiac disease in 2009, she was completely over-whelmed. The disease is just one reason that many people are now living gluten-free — but the diet can be challenging.
“From the moment you get that phone call with a diagnosis — there’s no more wheat, oats, rye or barley. You go to the grocery store, and you say, 'Well what can I eat?’ It is extremely overwhelming,” Thorne says.
Three years later, Thorne considers herself still on a learning curve, and looks forward to next weekend’s Gluten Free Living Now Expo, a two-day event in Carmel featuring workshops with world-renowned experts on celiac disease and gluten sensitivity, plus demos and samples from over 80 gluten-free vendors.
Tina Duncan and Shelia Cafferty, co-founders of the Expo, now in its second year, met each other through GIG (Gluten Intolerance Group) of Indianapolis. Duncan's son was diagnosed with celiac after doctors struggled for five years to find the source of symp-toms that caused failure-to-thrive and a misdiagnosis of autism. Her son has lived glu-ten-free now for over four years and has seen almost all of his previous symptoms dis-appear.
Cafferty was diagnosed with gluten sensitivity after struggling for years with symptoms of fatigue, bloating, and “brain fog.”
About 2,000 people from all over the country came to last year’s event. “The main rea-son people come is that we have the world’s leading researcher and director for the University of Maryland's Center for Celiac Research, Dr. Alessio Fasano. He’s the most knowledgeable expert — so if you hear something from him, you know it’s correct,” Duncan says. “His center is the source for the most current data on celiac, and facili-tated the research that determined one in 133 people are now affected by the disease, a lifelong genetic autoimmune disorder where even a small amount of ingested gluten causes destruction of the villi in the small intestine.”
“A lot of people are diagnosed with irritable bowel syndrome, depression, and anemia when they actually have a gluten intolerance or celiac,” says Duncan, who shares with Shelia a passion for getting the word out about these increasingly common disorders. One of their main concerns is in making the Expo affordable — so they set admission to $5, with children under 10 admitted for free.
“We don’t want anyone not to be able to come because they can’t afford it,” Duncan says. Admission gives an attendee access to all of the speeches and demos taking place each during the 2-day conference (a full schedule and list of speakers can be found at GlutenFreeLivingNow.org).
In addition to speakers ranging from medical experts (some local professionals will pre-sent as well, including Charles Vanderpool, assistant professor of pediatrics at Riley Hospital for Children) to gluten-free stars (the reigning Mrs. Alaska, a nurse practitioner, and 2011’s Mrs. USA), the conference offers the rare opportunity to sample and watch cooking demos of gluten-free foods from over 80 vendors.
“We like to think of this as a gluten-free Costco on steroids — you can eat your way across this room,” Duncan laughs, adding that the advantage to having this many sam-ples is it gives attendees a chance to try expensive foods before they buy.
Judy Thorne loves the Expo so much, she’s now volunteered twice for the event. For her, it’s not just about having a wealth of information and product samples all under one roof, it’s about the encouragement that can be given to many people who face a gluten-free life and feel very alone.
“I consider the Expo to be a megadose of encouragement and information — but it’s also about connecting with others who are going through the same thing. You can come out of there with hope,” Thorne says.
The event is for anyone who knows someone affected by celiac or gluten sensitivity. Last year’s festival saw several school teachers coming to learn more about the needs of their gluten-free students.
Duncan reminds, “The holidays are coming, and for those who will be having gluten-free people in their homes, it’s nice for them to come and hear how to avoid cross-contamination and see what’s available to accommodate a holiday menu.”