In 1994 I was diagnosed with celiac disease, which led me to create Celiac.com in 1995. I created this site for a single purpose: To help as many people as possible with celiac disease get diagnosed and living happy, healthy gluten-free lives. Celiac.com was the first site on the Internet dedicated solely to celiac disease, and since then it has become an invaluable resource to people worldwide who seek information about celiac disease and the gluten-free diet. In 1998 I created The Gluten-Free Mall, Your Special Diet Superstore! which was also another Internet first—it was the first gluten-free food site to offer a shopping cart-style interface, and the ability for people to order gluten-free products manufactured by many different companies at a single Web site.
The University of Chicago Celiac Disease Center (UCCDC) was established to develop and coordinate patient services, research activities, medical education and public awareness initiatives in order to increase the rate of celiac diagnoses and improve the lives of patients in the Midwest. Our efforts are focused on the Chicago area, but every UCCDC program is created with the intention of making it portable so that other medical centers can implement similar programs with proven results.
Created by Stefano Guandalini, M.D., an international expert on celiac disease, and Robin Steans, mother of a child with celiac disease, the UCCDC is a unique partnership between a dynamic external advisory board and a premier academic medical center. This endeavor is enhanced through a close working relationship with the Celiac Sprue Association of Greater Chicago and the Friends of Celiac Disease Research in Milwaukee, Wisconsin.
Since February, 2001, the UCCDC has launched activities in four program areas:
- Patient Services: Helping people who are at-risk for celiac disease to learn how they can be tested, and providing information and support to newly diagnosed patients and their families.
- Professional Education: Expanding the knowledge base of physicians and dietitians who come in contact with at-risk patients so that they can identify people in need of testing and provide appropriate nutritional counseling to newly diagnosed patients.
- Research: Contributing to the body of scientific knowledge on celiac disease, focusing especially on key unanswered questions regarding the prevalence of celiac disease in the U.S. and in special at-risk populations.
- Advocacy and Awareness: Heighten the awareness of the general public, most importantly on the symptoms of celiac disease so that persons found to be at risk may be tested, and advocate for better food labeling, increased research funding and improved public accommodation for people with celiac disease and their families.
Our Accomplishments:
- Developed a patient care package program that provides concrete tools like a listing of gluten-free foods, a grocery store guide, newsletters, and memberships to local and national celiac organizations, as well as donations of gluten-free foods for children newly diagnosed with celiac disease and their families. Parents who have received the care packages have said that they feel less overwhelmed about learning the gluten-free diet, and less afraid about what to feed their children. Families receive the care package at the time of diagnosis.
- Designed a clinical protocol to educate primary care physicians about celiac disease through an educational intervention and a year-long study that helps to identify current patients at risk for celiac disease in their practices. The protocol is being finalized and the program will begin to recruit participants shortly.
- Planned and implemented an educational event for parents, featuring noted author Danna Korn, speaking on celiac disease and the challenges of raising a child with the condition. During the parents presentation, children were kept busy nearby at a gluten-free carnival. Over 175 people were in attendance, and participants expressed great relief in finding other parents to talk with who were experiencing their same anxieties and fears.
- Featured in a Sunday Chicago Tribune health article on celiac disease, where the UCCDCs telephone number was listed as a resource for readers. Over 125 calls were generated, which led to 6 people getting tested (that we can confirm) and at least one woman, to date, receiving a diagnosis of celiac disease as a result of the article.
- Created a dedicated celiac disease clinic at the University of Chicago Childrens Hospital, staffed with professionals who are dedicated to the diagnosis and treatment of celiac disease.
We are so grateful for the support weve received from organizations, companies and individuals serving the celiac community and look forward to keeping you updated on our progress and upcoming activities.
The University of Chicago Celiac Disease
Center
at The University of Chicago Childrens Hospital
5839 S. Maryland Avenue, MC 4065
Chicago, Illinois 60637
Tel: (773) 702-7593
Fax: (773) 702-0666
E-mail: info@celiacdisease.net
Internet: www.CeliacDisease.net