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Celiac Disease


The University of Chicago Celiac Disease Program

Our Story

When Dr. Stefano Guandalini came to the United States in the early 1990’s, he was shocked at how little awareness, education and research existed in the area of celiac disease. As an internationally respected expert in the field, Dr. Guandalini knew that the prevalence of celiac disease in the United States would be expected to be very similar to that of his own country, yet his new pediatric practice had few celiac patients.


He wanted to do more. He knew he must do more to diagnose children and families who were dealing with undiagnosed celiac disease and its consequences. He began work to start a center, located at the University of Chicago, with a primary focus on celiac disease research and education.


In 2001, Robin Steans and Leonard Gail joined with Dr. Guandalini to form the University of Chicago Celiac Disease Program. Their daughter Leah was diagnosed with celiac disease, and through their experience, they learned how many families did not have access to information and resources that would lead to a diagnosis and a sound gluten-free diet for themselves or a loved one.  Most importantly, the Steans-Gail family was concerned about the limited knowledge of the medical community and the lack of research focusing on celiac disease that could truly address the critical issues facing families.


Taking a key leadership role, Robin Steans mobilized an advisory board that formed the organization and helped shape its strategic direction, and built the foundation of a program that at its core still has a mission to “raise diagnosis rates for celiac disease and to meet the critical needs of people affected by this condition through education, research and advocacy.” Serving as our board chair for our first three years, Robin dedicated countless hours to building our organization. We would not be the organization we are today without Robin's invaluable contributions.


From the beginning, our advisory board has represented a wide swath of the celiac community, engaging people with celiac disease and their families, as well as involving medical professionals, members of the local support group, and businesspeople with a special passion for celiac disease awareness. This dynamic and talented group engages the organization in a broad range of activities and focuses the mission on a strategic outcome, one that differentiates this organization from any other.


The University of Chicago Celiac Disease Program’s Advisory Board continues to partner with Dr. Guandalini to lead the organization and ensure that we remain true to our mission to meet those critical needs, to raise diagnosis rates, and to ensure, through research that those at risk for celiac disease have more to hope for in the future. We are grateful for their dedication and leadership.


UCCDP 2007 Advisory Board


Susan Blumenfeld

Mark De Meo, MD Rush University Medical Center

Lara Field, MS, RD University of Chicago Medical Center

Leonard Gail

LuEllen Giera

Deborah Gordon

Stuart Gordon

Andrea Hosbein

Brian Israel

Bana Jabri, MD, PhD University of Chicago Medical Center

Kim Koeller, Gluten-Free Passport

Mary Lassila

Margaret Mochel, RN

Sara Star Nussbaum, MD

Gail Pierce

David Rubin, MD University of Chicago Medical Center

Scott Schwefel

Carol Semrad, MD, University of Chicago Medical Center

Stacey Slomka

Sueson Vess

Peggy Wagener, Living Without

Wendy Weil, DPM


Medical Director

Dr. Stefano Guandalini (Founder and Medical Director)

Dr. Guandalini is the section chief of gastroenterology, hepatology and nutrition at the University of Chicago Comer Children’s Hospital. He is the director of the University of Chicago Celiac Disease Program, which serves children and adults throughout the United States. An international expert in celiac disease, Dr. Guandalini has studied the condition and diagnosed patients for over three decades.


Program Director

Carol McCarthy Shilson (Program Director)

Carol comes to us from Imagination Publishing where, since January 2000, she rose to the #2 position in the 50+ person firm and had P&L responsibility for revenues in excess of $10 million, established the firm's online publishing division, created and led the implementation of a public relations and marketing plan, and was instrumental in a major reorganization. Prior to joining Imagination, Carol worked at Chicago magazine as both Public Relations Director and Associate Production Director. Born and raised in Detroit, Michigan, she graduated from the University of Michigan in 1992, is the youngest of 12 and is herself a celiac.


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