Conquering Celiac Disease

A Story of Generosity and Awareness

Originally Published in Advances Volume 5, Issue 5

The new celiac research lab in the University of Maryland’s Health Sciences Facility II has been named not after a prominent physician in the field, nor after a pioneer in celiac research, nor even after a respected faculty member. Rather, it has been named after a relatively unknown twelve year-old girl, who up until a year ago had never heard of the disease that has been altering her life.

After twelve-year old Melanie Rieder was finally diagnosed with celiac disease, her parents sought out the best celiac research and treatment center in the nation. Their inquiries led them to Alessio Fasano, MD, professor of Pediatrics, Medicine and Physiology, director of the Mucosal Biology Research Center at the University of Maryland School of Medicine and medical director for the Center for Celiac Research at the University of Maryland.

Dr. Fasano, a foremost expert in the field, met with the Rieders, shared with them his experience and knowledge of the disease and helped the family better understand the unwelcome disease affecting their lives.

Serious Health Threat

For decades this elusive and often debilitating disease was misunderstood by the general public and often misdiagnosed, sometimes taking as long as 10 years to be accurately diagnosed. It is also much more prevalent in our society than the medical community first realized. “We are only seeing the tip of the iceberg,” says Dr. Fasano, who in a recent study concluded that as many as one out of 133 Americans may have the disease. In fact, The National Institutes of Health (NIH) has recognized celiac disease for the first time as a serious health problem in the United States and estimates almost three million Americans are affected.

Individuals with celiac disease must avoid foods that contain gluten, which is found in wheat and other grains and is used as an additive in countless food products. The gluten sets off an autoimmune reaction and the affected individual produces antibodies that attack and destroy the villi in the small intestine causing damage and illness. Symptoms are broad and varied ranging from diarrhea, weight loss and abdominal pain to chronic fatigue, weakness and malnutrition. This is part of the reason the disease is so difficult to diagnose. In children, the symptoms may include failure to thrive — an inability to grow and put on weight. 

A Most Generous Gift

During one of the early meetings with Dr. Fasano, the Rieders articulated a keen interest in the research that was being done at the center. Dr. Fasano arranged a special tour of the center’s new laboratory space in the Health Sciences Facility II. He introduced them to some of the center’s research projects, including a promising medication that is taken prior to eating to offset the effects of the disease. The pill, now entering the clinical trial phase, is similar to treatments that are available for individuals with lactose intolerance. After several conversations the family decided to make a most generous gift to the center. In fact, this gift was so significant that the center named the new research laboratory The Melanie Rieder Laboratory for Celiac Disease Research.

“They are warm, sincere, wonderful people, and they seemed genuinely interested in the progress we were making with the disease at the center,” says Pam King, director of operations at the Celiac Center. The dedication is most appropriate, considering that Melanie, like most who suffer from celiac disease, was completely unaware of the affliction, but now that it has been diagnosed she is determined to increase public awareness, especially among children.

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