Wednesday, April 05, 2006

MetroCeliacs March Meeting - U of C Michelle Melin-Rogovin

The MetroCeliacs were proud to have Michelle Melin-Rogovin from the U of C celiac disease program ( come speak to our group for our March meeting. The meeting was a wonderful success. The following information about the program is taken directly from their website and then the notes from the meeting were taken by Amy Rousseau (thanks SO much, Amy!)

The University of Chicago Celiac Disease Program ( is dedicated to raising diagnosis rates and meeting the critical needs of people affected by celiac disease through education, research and advocacy.

Their celiac disease information line provides expert help with questions regarding symptoms, testing, diagnosis and procedures.

Call Monday through Friday, from 9 a.m. to 5 p.m. central time (773) 702-7593. Most calls will be answered immediately, by a live person. Messages will be returned within 48 hours.

Michelle Melin-Rogovin is the Executive Director for the University of Chicago Celiac Disease Program. She received her Master’s Degree in health policy and administration from the University of Chicago in 1992. Ms. Melin-Rogovin feels that her mission is to serve as a bridge between patients and doctors, helping empower patients so they can actively participate in health care decision making.

Michelle has 15 years of experience working with children and families facing chronic and life-threatening illnesses. Ms. Melin-Rogovin worked in health care public relations and as a consultant for the Abbott Laboratories Fund before joining the University of Chicago Celiac Disease Program in 2001.

As Executive Director, Michelle works with Dr. Stefano Guandalini, the Program’s Board of Directors and volunteers to advance initiatives in research, medical education, patient services and public awareness. Ms. Melin-Rogovin also fundraises for every aspect of the program’s work and coordinates media outreach activities.

In 2003, Ms. Melin-Rogovin created an education program called Celiac Disease: Myths and Facts in order to educate the celiac community about the gold standard for diagnosing and treating celiac disease and encourage family members to be screened. She presented this lecture to audiences in 19 cities (14 states) and, as a result, the University of Chicago Celiac Disease Program reached over 1,500 people in the communities where they live.

In 2004, she developed Taming Temptation: Practical Strategies for Maintaining a Gluten-Free Diet. The program addressed the fact that many celiacs would like to eat food containing gluten and some do. It also reinforced the need for regular follow-up testing, which is offered infrequently by physicians. Michelle traveled to 22 cities in 11 states, reaching 2,000 people with this presentation.

U of C has one of two research teams in the world that is working to understand the nature of the immune system in the gut and the earliest response of the intestine to the presence of gluten. The principal investigators on this research project include Dr. Stefano Guandalini, founder of the University of Chicago Celiac Disease Program. Research is currently underway in their dedicated celiac disease laboratory, under the direction of Dr. Bana Jabri, a pathologist and world-renown celiac researcher. Patients who have biopsies for celiac disease at the University of Chicago may be eligible to participate in the research.

For more information about these programs, please call: (773) 702-7593. MIchelle is always willing to help answer questions and while we cannot summarize the meeting notes online, the hotline number is always an option. Please call her with any questions or wait for our meeting with the nutritionist coming up soon!

The meeting went really well. Michelle discussed some of the questions submitted in advance by our members. Many of the questions had to do with labeling and with specific ingredients and foods. Michelle mentioned that we will need to address the nutritionist (we are bringing someone in this summer) about some of those questions, but she still answered a lot of them using information about the labeling laws. Michelle also provided some really great handouts about these new laws, the work U of C is involved in currently and other helpful information. If you would like copies of the handouts, call the hotline and ask for them. We are also grateful to Whole Foods for sponsoring us again and to everyone who brought treats. Those are always welcome and ever so appreciated!

Quarterly gf magazine- Gluten Free Living is a great resource magazine that offers great info on living gf. Web site,

We had multiple questions about everything from liquor to our old favorite, modified food starch. Many of these can be answered by the new food labeling laws and the rest will be answered specifically in our meeting with the nutritionist this summer. Michelle really stressed how we all make our own choices and can believe what we choose to believe and are responsible for how we choose to live.

Thanks so much to Michelle and U of C for all they do and to Michelle for coming to speak to the MetroCeliacs. U of C has a really important event coming up soon, so please visit their website or click on the link to our calendar on yahoo to see all upcoming events. Thanks everyone for coming!

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