“There are these finger-like projections called villi in your small intestine,” Soin said. “They work to absorb nutrients. With celiac disease, when someone with celiac ingests gluten, the body will initiate an immune response against the gluten, which causes the villi to get flat because the body will attack the villi. When they get flattened, they can’t absorb as much nutrients. And so it can lead to a lot of different symptoms. And while celiac disease was previously classified more as a digestive disease, more recently, it’s been classified as a multisystemic disease. Some symptoms of celiac are even depression, brain fog, and joint pain. It really affects your whole body.”

And so, especially in public, Soin has to be alert. While people with celiac disease can touch gluten, the problems begin when even a tiny bit is ingested.

“You really have to avoid all cross-contact,” Soin said. “It can be very challenging to eat out at restaurants because a lot of them don’t follow strict practices for keeping all gluten-free food actually separate from the food containing gluten. Even if something says that it is gluten-free, a lot of times it is not. So when going out to eat, you have to ask a billion questions to figure out if what you are going to eat is actually going to be safe or not, which is why I usually just go to the same few restaurants that I know actually take the right precautions. A lot of people don’t think a lot about the cross-contact aspect of it. But that’s really where the biggest challenge comes in with celiac disease, at least for me. I don’t think it is too difficult to find gluten-free food in general. There is an issues of gluten-free food being significantly more expensive than regular food. But you are able to find it. It’s just that when you go out to eat, a lot of times, it’s sort of a guessing game of whether or not it is actually going to be safe.”

And gluten can be found in the most unlikely places.

“Gluten can even be found in medication,” Soin said. “What’s frustrating is a lot of medications won’t declare whether or not they have gluten in it. So you have to do really extensive research to see if the medication that you are taking will make you sicker if it has gluten in it.”

While some may have shied away from public life due to their condition, Soin has used it to basically empower herself.

“One reason why I am so passionate about this is because I’ve been dealing with it since a young age,” Soin said. “I’ve spent my while life constantly advocating for myself and educating others on celiac disease. I’ve learned to really enjoy educating people on celiac disease because a lot of people haven’t heard of it before. They don’t know a lot about it. And so it’s really exciting that I can make an impact by preventing the spread of misinformation by telling people more about celiac disease.”

In high school, Soin did a research project on celiac disease.

“It was on public misconceptions on celiac,” Soin said. “That is something that I have been very passionate about especially because I’ve had doctors tell me misinformation about celiac disease since I was diagnosed. For instance, my gastroenterologist had suggested that I could outgrow celiac disease. But celiac disease is an autoimmune condition. It’s genetic. You can’t outgrow it. And I’ve had other doctors tell me that as well. And so something I want to work towards is spreading correct information about celiac disease. And so I did a research project my senior year in high school where I sent out a Google form to a bunch of people to sort of get information on their conceptions of celiac disease. In my research, I found that while a lot of people had heard of celiac disease or knew someone who had it, many people still held these common misconceptions. Some thought that celiac disease is an allergy or that it can be outgrown. My research was actually published in an international conference for celiac disease. It was really exciting to see that even when I didn’t even have my high school diploma, I could make a big impact on the celiac disease community.”

Soin has continued her fight into her college career.

“I’m currently a freshman at UW-Madison majoring in chemistry and biochemistry with a certificate in health quality,” Soin said. “I’m very passionate about furthering research and education of celiac disease.”

Since the disease is relatively not very common, it can be isolating.

“A lot of people are isolated,” Soin said. “I didn’t meet someone else with celiac disease until I was maybe 10-years-old when I started running support groups on celiac disease. There are times where it is very frustrating, especially because no one else in my family has it. Since celiac is hereditary, a lot of people have someone else in their family with it. It feels lonely sometimes because you don’t really have anyone to relate to.”

So during her freshman year, Soin began to reach out to others on campus. And if the organization doesn’t exist, bring it into being.

“There’s an old student bulletin board,” Soin said. “Last semester, I sent out an email on it about my club. I had so many people contact me saying they were interested in joining. It’s actually been an experience trying to make this all come together, especially coming up with a leadership board and everything, not really having done this before. But it’s all sort of coming together.”

She ended up revitalizing a group that was dormant.

“I run a club on campus called ‘The Gluten-Free Badgers Club,’ Soin said. “It’s a support group for people with celiac disease and gluten intolerance. I restarted the club. It started for the first time in the early 2000s. But by the time I came to UW, it wasn’t there anymore. I’m currently the president of the club and I restarted everything. We actually have a guess speaker coming tonight for one of our events, which is very exciting. But the club is a support group, so we do social events and stuff for people with gluten intolerance and celiac disease to connect. We have advocacy events and education events and volunteer opportunities. On our email list, we have about 60 people.”

And Soin isn’t content with just getting support. She has a magnificent obsession with doing something about it.

“ I am very passionate about my fundraiser on celiac disease called The Emerald Benefit,” Soin emphasized. “This is our second year running it. Last year was our first. It is through the Celiac Disease Foundation program called Team Gluten-Free where everyday people can fundraise for celiac disease research and treatment. Last year, we raised $15,000 and had 70 people attend the event, which was really exciting. And we featured a fully gluten-free tasting showcase with a ton of gluten-free food from a few local restaurants. And it was really cool because it was buffet style. And a lot of people who have to follow strict gluten-free diets can’t usually eat at buffets because of all of the cross-contact. It’s a buffet where you don’t have to worry at all. You can eat whatever you want. We also had prize drawings and silent and live auctions. I was able to share my experience with celiac disease. We also had a guest speaker, Dr. Daniel O’Connell.”

Soin and her team of volunteers are looking to outdo their previous fundraising effort this year.

“The event will by May 16^th, which is a Saturday,” Soin said. “It will be 6-10 p.m. at the East Side Club in Monona. This year, our goal is to raise $50,000 and have 200 people attend the event. Right now, we’re really working on getting sponsorships and donations so that we can reach our goal. We’re also focusing on getting attendees for the event and sell tickets.”

When Soin graduates from UW-Madison, there are so many avenues through which she could continue the fight against celiac disease.

“Previously I had been thinking maybe pre-med or something like that,” Soin said. “But I’m really leaning towards becoming a professor because I really enjoy teaching and educating others. I also really want to do research. And I’m also passionate about doing health policy and advocacy stuff on the side. There are a lot of policy changes that need to be made for celiac disease such as group required testing for it. About 70-80 percent of people with celiac remain undiagnosed or misdiagnosed. The average time it takes to get diagnosed with celiac disease is 6-10 years. By requiring testing — requiring the blood test on the blood panel for children — we would be able to catch a lot of people a lot sooner, which would prevent further damage.”

Ultimately what Soin wants is a cure.

“For celiac disease, there are a couple of different ways scientists are looking into for a potential cure,” Soin emphasized. “One of them is more of a treatment. One of the things that scientists are looking into are gluten-degrading enzymes. They are called glutenases. They would be able to degrade the gluten further before it reaches the small intestine to decrease the immune response. This would allow for some cross-contact. It wouldn’t completely replace the gluten-free diet. But it would allow a lot more freedom. If you are going out to eat at a restaurant, you can sort of take the gluten-degrading enzyme before you eat so that if you get something off of the gluten-free menu and you’re concerned about cross-contact, you can take that enzyme beforehand. It would prevent it unless there was a total mix-up. Even if it has a little bit of gluten in it, you’ll be okay. That’s something that is very promising. There is currently a lot of research on it.”

But what Soin really wants is a cure.

“Other things we are looking into is inhibit different things in the autoimmune reaction because there is a certain enzyme called Tissue Transglutaminase that alters the gluten, which is what initiates the autoimmune response,” Soin said. “If we can somehow inhibit that enzyme from doing that, we could either dampen or completely stop the immune reaction. It’s also promising for other diseases because the Tissue Transglutaminase enzyme also plays a role in different diseases and disorders.”

Kimaya Soin has not let celiac disease diminish her life. She has become empowered to make a difference in not only her life, but also in the lives of everyone who is inflicted with the disease. Don’t be surprised if one day in the future you read that a cure for celiac disease has been found. And right there in the list of authors of the study would be Kimaya Soin. With Soin’s focus and enthusiasm, it feels like it could just be a matter of time before a cure is found.

For more information about The Emerald Benefit, visit www.emeraldbenefit.org.