For a celiac sufferer, serendipity sheds light on poorly understood disease

Hallie C. Falquet
Posted: 9/28/06

Vanessa Maltin grew up feeling like she had food poisoning every time she ate. Until well after she turned 21, stomach cramps, diarrhea and gas were routine parts of her life.

Then as an intern reporter for the Palm Beach Post in 2004, the George Washington University student was assigned to cover a conference on celiac disease at the National Institutes of Health.

She left the conference with the makings of a thorough article, and also a self-diagnosis.

“I was like, ‘oh my goodness, this is me, this is crazy!'” Maltin said, recalling the moment she realized she had the disease she was reporting on.

Sufferers of celiac disease cannot fully digest the protein gluten, preventing their bodies from absorbing other nutrients. Gluten is found in wheat, rye and barley – basically any food containing flour.

When carriers of the condition eat even small amounts of gluten, the effects are physically painful and can be painfully embarrassing. Maltin was lucky not to have suffered from the disease’s more serious symptoms, such as osteoporosis, depression and infertility.

And while the treatment may sound easy – it does not involve any drugs, needles or hospital visits – sticking to a gluten-free diet can be an intimidating prospect for celiac sufferers.

“Honestly, it’s so great to be healthy, you don’t really care about ‘no-pizza,'” Maltin said of the need to give up certain foods.

But for a college student, “no-beer” can make for an awkward party situation.

Perhaps even more difficult than giving up two staples of college life was the lack of understanding she received from peers.

“I was at a party once with friends and a guy found out I had celiac disease and said, ‘oh, is that like gonorrhea?'”

It was that kind of comment, coupled with the seemingly impossible task of cutting all gluten from her diet, which inspired Maltin to write her first book, Beyond Rice Cakes: A Young Person’s Guide to Cooking, Eating and Living Gluten Free.

Maltin held a nationwide cooking contest to collect the best gluten-free recipes, and after making and tasting every one of them, she selected over 150 for the book.

Also included are Maltin’s personal tales of coping with gastrointestinal problems. Her stories are sure to draw knowing smiles from people familiar with the disease, and they offer hilarious insights to those who are not.

Alice Bast, fellow celiac sufferer and executive director of the National Foundation for Celiac Awareness, edited the book while stressing its positive message of living with the disease “with a smile.”

Bast started the foundation with the goal of raising awareness and money to fill the gap she saw in research on the disease.

An estimated one in 133 people suffer from celiac disease, but only one in 4,700 are diagnosed, according to the Web site of the University of Chicago Hospitals. Celiac can be detected with a simple test, but doctors cannot always be counted on to recognize its symptoms.

In fact, most college and university health centers do not have programs to raise awareness of the disease – or even a staff aware of it themselves.

Isabel Goldenberg, director of the George Washington University Student Health Service, said that she and her staff will do a clinical assessment of students who may have celiac disease and refer sufferers for specialty care.

But Maltin had what seemed like a “permanent room” at George Washington University’s hospital during her four years at the school. She was not diagnosed until she took her own research to her physician and requested the specific blood test.

As the director of outreach and programming for the National Foundation for Celiac Awareness, Maltin is working to make sure that others with the disease are properly diagnosed.

The 2006 National Consumer Awareness Campaign launched by Maltin and Bast focuses on “education throughout the whole system,” Maltin said. “We want to make a test for the disease part of a routine physical and talk to medical students to educate them early in their careers.”