International Celiac Disease Symposium

skylineIn rare U.S. meeting, experts discuss a cure, labeling & more.

The world’s top scientists and physicians will meet in Chicago in September to discuss the latest advances in treating celiac disease and gluten-related disorders.

But don’t be intimidated. Organizers promise that the 15th International Celiac Disease Symposium also will offer plenty of valuable information for average patients, caregivers and consumers.

The conference, being held Sept. 22 to 25, is designed for two different audiences, with a common goal: to improve quality of life for all until a cure for celiac disease is found. Attendees will learn about everything from cuttingedge treatments to the truth about widely circulated rumors regarding celiac disease.

The symposium is being hosted by the University of Chicago Celiac Disease Center. Co-chair Stefano Guandalini, M.D., founder and medical director of center, has high hopes for the event.

“I’m trying to put on the best conference on celiac disease and gluten intolerance ever,” he says. “If you don’t think big things, you won’t do big things.”

The conference’s scientific forum is for leading celiac disease experts, who will discuss the latest research. Meanwhile, the clinical forum will offer information and activities for dietitians, nurses and other clinicians, along with patients and their families.

Guandalini hopes to draw 1,200 people to the event, which will feature a lineup of 70 prestigious speakers at the Sheraton Chicago Hotel and Towers. Parents of children or teenagers with celiac disease will find the conference especially helpful, he says. “If they really want to know how long their kids will still be affected by celiac disease and how long until a cure comes to fruition, this is the place to go,” he says.

The conference is held in a different location around the globe every other year. The Chicago meeting is a great opportunity for people who live in the United States to attend an international conference without incurring significant travel expenses, Guandalini says.

The meeting was last held in the U.S. in 2006 and won’t return until 2019 at the very earliest. Future conferences are set for Prague (2015) and India (2017).

“This is a unique opportunity for those who want to be abreast of what’s new and relevant in their lives,” Guandalini says. “It won’t be here again for many years.”

The patient-friendly clinical forum will be broken into 12 informative sessions, which will run Monday morning through Wednesday evening. Topics and speakers will be the same as those for the scientific forum, Guandalini says, but information will be presented in a way that patients and their families can easily understand.

“The quality will be of the highest standard possible and presented in a very accessible way,” he says.

Conference organizers surveyed members of leading patient and industry groups to help determine discussion topics, Guandalini says. The sessions are designed to be highly interactive, he says, and attendees should come prepared to participate. “We’ve left ample time for questions and answers at the end of each session,” he says. “We really expect this experiment to be successful.”

Highlights include sessions that will cover topics of high interest to consumers, including insurance, labeling, schools, restaurants and acceptable standards for gluten-free foods. Presenters will review consumer protections already in place and what further steps can be taken to make sure gluten-free standards are followed, Guandalini says.

An entire two-hour session will be devoted to debunking myths that can surround celiac disease.

“So many things are being said, thought and taught on celiac disease … (including incorrect) information that can be truly misleading,” he says. “Even books have been published disseminating misinformation.”

Researchers looking for new celiac disease treatments will share their progress in a round-table discussion. A gluten-free diet is currently the only available treatment, Guandalini says, but sticking to it full-time can be demanding. “Alternate forms of treatment really are needed,” he says.

In the past few years, researchers have made remarkable progress toward finding new treatments, he says. The session will look at potential new approaches and when they might be available to patients.

“It could range from a pill to allow a little gluten now and then to curing this condition once and forever,” Guandalini says. “It will be very interesting to discuss.”

A session on the future of the glutenfree diet will include the latest information on how probiotics may be helpful for people with celiac disease. Very limited studies have been published to date, according to Guandalini. “This is an interesting and developing area,” he says.

A gluten-free diet is not effective in 100 percent of cases of celiac disease. A significant number of people who strictly follow the diet may still experience symptoms, Guandalini explains. One session will look at possible explanations for why some people do not fully respond to treatment. Another session will cover innovative research on how gluten also could negatively affect people who don’t have celiac disease. Other presenters will unveil the results of a lengthy, intensive study on the best way to handle infant nutrition in families at risk for celiac disease.

The meeting will wind down with a halfhour crash course for patients, who will hear research highlights from the scientific forum, presented in down-to-earth language.

Organizers left Tuesday afternoon entirely free, so attendees can network or see the Windy City’s sights. Conference attendees can sightsee on their own or sign up for organized bus, boat and Segway tours, or a trip to the Art Institute of Chicago.

“People will have the chance to mingle, interact with each other, to ask questions,” Guandalini says.

Attendees also can check out a wide range of food and other specialty products in the Gluten Free Marketplace.

There’s one more reason to attend: The registration fee includes worry-free meals, beverages and snacks. “There’s not a milligram of gluten entering the whole area,” Guandalini says. “I want people to feel safe and not have any hesitation about it.”

Mary Beth Schweigert is a newspaper reporter covering health, food and other lifestyle topics in Lancaster, Pa.

Registration for the 15th International Celiac Disease Symposium is $549, with any proceeds benefiting the University of Chicago Celiac Disease Center. For more information on how to register, hotel reservations, program schedules and other information, visit icds2013.org. A DVD of highlights will be available for purchase after the conference.

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