Kimaya Soin was diagnosed with celiac disease at age 4, but it took some pushing from her mother.
“My doctors actually weren’t really going to check me for it, so it wasn’t on their radars,” Soin said. “My mom had to research my symptoms. She looked them up, and based on the symptoms I had, it was either likely celiac disease or leukemia, and she had never heard of celiac disease, like most people haven’t.”
Now 16 and a freshman at UW-Madison, Soin is channeling a lifetime of navigating the condition into advocacy, research and a May 16 fundraiser she hopes will raise $50,000 for celiac disease research.
The Emerald Benefit, a gala-style event at the East Side Club in Monona, is in its second year. Last year’s inaugural event drew 70 attendees and raised $15,000 through the Celiac Disease Foundation’s Team Gluten Free program. This year, Soin is aiming for 200 attendees and has more than tripled the fundraising total.
General admission tickets are $50; VIP tickets are $100 and include raffle tickets, front-row seating and a gift bag. The event will feature live and silent auctions, a paddle raise and a fully gluten-free tasting showcase with food from local restaurants.
That showcase, Soin said, carries meaning beyond the menu.
“People who have to follow a strict gluten-free diet can’t really eat at buffets because of all the cross contact, so it was really cool for everyone to be able to eat whatever they wanted” at last year’s inaugural event, she said. “There was a girl there who was diagnosed with celiac maybe a year or two ago, and she had never met anyone else with it.”
Celiac disease is not a gluten allergy or intolerance, as is often thought. Rather, it’s an autoimmune condition in which consuming gluten damages the lining of the small intestine. The only treatment is a strict gluten-free diet. About one in 100 people have the condition, but Soin said 70 to 80 percent of those remain undiagnosed or misdiagnosed.
Misconceptions persist even among medical professionals, she said.
“I’ve had multiple doctors, including my (pediatric gastroenterologist) who diagnosed me originally, tell me that I could outgrow celiac disease. You cannot outgrow celiac disease,” Soin said. “When your medical professionals believe these myths, that’s where it gets frustrating.”
Proceeds from the Emerald Benefit go to the Celiac Disease Foundation to fund research, including clinical trials, improved diagnostic methods and development of gluten-degrading enzymes that could one day allow people with celiac disease to tolerate some cross contact.
“There are so many things we need to research about celiac disease, but there’s not enough money going towards those areas of research right now,” Soin said.
Soin arrived at UW-Madison through an unconventional path. Homeschooled on and off through middle and high school, she started pursuing her interest in chemistry early, taking high school chemistry in seventh grade at age 10. She had planned to start at Madison College and transfer, but applied to UW-Madison when she learned about a scholarship program that required incoming freshmen to apply.
“UW was the only school I applied to,” she said. “I was like, if I get in, I get in.”
She got in. She is now majoring in biochemistry and chemistry with a certificate in health policy, and she is joining a lab this summer that applies organic chemistry to disease therapeutics.
“Ultimately, I’m hoping to become a professor, to be able to do research on celiac disease, sort of combining organic chemistry research with celiac disease research,” she said.
On campus, Soin has also revived the Gluten Free Badgers Club, a student organization for people with celiac disease and gluten intolerance that had gone dormant. The club now has about 60 members and hosts social events, guest speakers and volunteer opportunities. Dr. Daniel O’Connell, a pediatric gastroenterologist at UW Health, is scheduled to speak both at a club event and at the Emerald Benefit.
The Emerald Benefit runs from 6 to 10 p.m. on Saturday, May 16, at the East Side Club in Monona. Tickets and donation information are available through the Emerald Benefit website.
