Living without knowing
September 1, 2011
Research doesn’t get more personal than this. After having written a research proposal for her James Monroe Scholars Program research project, Taylor Hurst ’12 was diagnosed with Celiac disease over the winter break of her sophomore year. This would not only change the direction of her research project, but would come to mark a significant shift in the way she lived.
“That was a big turning point for me,” Hurst said. “As I learned more about what I had, all these questions kept popping up.”
What with the questions Hurst faced after being diagnosed, she decided to use her Monroe research project as an opportunity to gain a better understanding of the social implications of Celiac disease, both in its direct impact on the people afflicted with the disease and the significance of society’s perceptions of Celiac disease.
People with Celiac disease have trouble absorbing gluten, a protein found in wheat products and an additive in many other foods. According to the Celiac Research Center at the University of Chicago, one in 133 people are affected by the disease. There is no cure for Celiac, although it is one of the few diseases for which a dietary change can completely eliminate all symptoms.
While Hurst interviewed a number of medical professionals, her focus was on learning more about the disease from those who suffer from it firsthand.
“My goal was to get a holistic view of what it means to have a disease that can essentially alter everything you do,” Hurst said. “You can’t just go to a restaurant anymore, you can’t just eat anything you want or something someone made for you. So it’s interesting to see how people adjust to that and what challenges they face depending on their situation.”
Not only did Hurst gain insight into the disease, but she also was able to bond with people who also have it.
“It’s reassuring to see that people struggle the same way I do,” Hurst said. “It’s a really nice feeling to be able to sit down and talk with people and say, ‘Yeah, it’s hard sometimes.’”
While Hurst focused on the social effects of Celiac, she also became fascinated with how society’s views on a gluten-free diet impact those with Celiac’s disease.
“Society now is recognizing gluten-free, but I think it’s interesting to see how many people actually know gluten-free is linked to Celiac disease, versus gluten-free as a weight loss diet versus gluten-free as a healthy lifestyle,” Hurst said. “Society determines what it means to be gluten-free and the way we decide to [be gluten-free] determines the health of those with Celiac, as ‘gluten-free’ can mean a variety of things.”
While Hurst explored the intersection of society and disease, one issue that she found frustrating was the problem of diagnosis, due to the fact that Celiac can induce a range of symptoms.
While the average time for diagnosis has recently dropped from nine to 4.4 years according to the Celiac Research Center at Columbia University, Hurst expressed concern about people having the disease their whole lives and never knowing, and consequently never knowing what it felt like to be completely healthy.
“What I want to voice with this research is that many people are under the radar,” Hurst said. “I had it for six years before I ever even known—so I was sick for six years.”
While recognizing and diagnosing Celiac’s disease is a problem, another problem exists where people will self-diagnose themselves with Celiac’s disease.
“Some people go off gluten and they feel better,” Hurst said. “I talked to a lot of people who had never been diagnosed and you ask them and they say they have Celiac.”
The problem with self-diagnosis is that in order to get an accurate diagnosis, a person must start including gluten in their diet for about six months, which will consequently make them feel sick for that six month period. Hurst described that an official diagnosis is important because it has implications for insurance coverage, and people with Celiac are more prone to diseases such as colon cancer, so with an official diagnosis people will get regular screening for diseases such as that.
“What I think would be ideal is that if we were able to get enough awareness that people don’t have to self-diagnose,” Hurst said. “No one wants to make themselves sick again, so if we can catch them early when they first come in and physicians and dietitians are prepared, then people can get that official diagnosis that they need.”
While it is a major adjustment to transition to a gluten, Hurst mentioned that the College of William and Mary has been working to incorporate gluten-free sections in the dining areas.
“The Caf has done a great job,” Hurst said. “They’ve been really trying hard to incorporate it.”
With a need for more awareness, the prevalence of the disease came across in the response Hurst got for her project. Originally hoping for around 30 interviews, she received around 90.
“Even today I’ve gotten more interviews back saying thank you so much for finally bringing some sort of attention to something that affects so many people,” Hurst said.