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New Disease, New Challenges

Ashburn woman dedicates self to getting information to celiac disease patients.

When Ashburn resident Genevieve Hneich was diagnosed with celiac disease four years ago, she did not sink down into depression, she did not wonder "why me?" Instead she began doing research on her disease and became armed with information.

"My way of coping was to learn as much as I could about celiac," she said.

Now the Venezuela native is doing what she can to pass the information on to those who need it. As a master's candidate in George Washington University's public-health program, Hneich is specializing in health promotion, learning how to implement health plans and increase patient advocacy in the medical profession.

"I want to help people," she said. "I want to work with people," she said.

CELIAC DISEASE is a genetic digestive disease that damages the small intestine and makes it difficult for the board to absorb nutrients from food. Patients with celiac disease cannot properly process a protein called gluten, which is found in wheat, rye and barley. When they eat foods with gluten, their immune system responds by damaging the small intestine and the tiny, fingerlike protrusions on the lining of the small intestine, called villi, are destroyed. Because villi absorb nutrients from food into the blood stream, celiac patients become malnourished even while eating normal amounts of food.

"I remember the first time I had to call Starbucks and make sure their soy milk was gluten free," Hneich said. "You really have to decipher the labels of everything you eat."

Hneich said celiac disease is one of the most misdiagnosed diseases. Symptoms can appear to resemble everything from Crohn's disease and ulcerative colitis to irritable bowel syndrome, which was Hneich's first diagnosis.

"All the symptoms a very easy to confuse with something else," she said. "You can also be asymptomatic"

ONE OF THE biggest problems facing celiac patients today is the lack of information available to them, Vanessa Maltin, director of outreach and programming for The National Foundation for Celiac Awareness, said.

Approximately 2.2 million people across the country have been diagnosed with the disease, with another 500,000 expected to be diagnosed within the next five years as awareness rises.

Maltin said some of the reasons doctors do not think to test patients for celiac disease is that they are not very familiar with the disease. Maltin said raising awareness can be as simple as going to doctors' offices to leave brochures.

"A majority of cases being diagnosed is patients going to their doctors and asking to be tested," she said.

The reason behind the lack of information available to medical professionals could be the fact that there is no real medical research going on to find a cure.

"There is no pharmacy behind the disease," Maltin said. "There is no pill I can take to get better. Gluten free food is my medicine."

TO HELP RAISE awareness, Hneich is dedicating every part of her graduate work to celiac disease.

"Every time I can get celiac involved in a class project, I do it," she said. "I would like to really use [my work] because I feel like it is needed."

In her public-health marketing class, Hneich is coming up with a strategic plan to get information to health-care professionals at George Washington University's hospital. Hneich is working on a grant for the National Foundation for Celiac Awareness for her class in planning and implementing health promotion programs. The grant would provide funding to implement programs to teach health-care professionals about the disease. In her qualitative methods class, she is running two focus groups for local people who are living on a gluten-free diet. In the focus groups Hneich is trying to get a feel for where patients get their information, where they shop for food, what local resources they use and how their lives have changed since going gluten free.

"Even after a patient is diagnosed, resources are really limited," Maltin said. "It can be very hard for new patients."

Hneich's partner in two of her projects, Amanda Davis, a dietician also in George Washington's health promotion program, said she joined Hneich's projects because she knows how hard it is for someone without the disease to help a celiac patient.

"As a dietician I can see there is big need for information," Davis said. "I only had about two hours of training on it. It was when I got my first celiac patient that I had to do all the footwork to find out what it really was."

HNEICH SAID it can be difficult to get people unfamiliar with the disease to take her seriously.

"Sometimes I feel like people are thinking I just came up with a new disease," she said.

With all of the struggles to get information about celiac disease to the people that need it, Hneich said her work has also helped her come to peace with her own diagnosis.

"We study a lot of theory, which helps me understand why I would want to cheat on my diet, even though I know what effects it would have on me," she said. "I understand why people work the way they work."

Nowadays, Hneich said food rules her life, between making sure she always has something with her that she can eat, to having to plan ahead of time in order to eat at a restaurant or shopping for food.

"I am constantly thinking about food, I am always thinking about it," she said. "For me food is a must. But I learned you can be in complete health if you learn to stick to your diet and you take charge and learn about it."

It is her own experience that gives Hneich the motivation to keep working on raising awareness and making sure information is out there for newly diagnosed patients.

"I know now that this is what I am supposed to do with my life," she said.