Last month several members of the National Foundation for Celiac Awareness (NFCA ) team participated in the 15^th International Celiac Disease Symposium (ICDS), the most comprehensive celiac disease meeting in the world. Held September 22-25, 2013, in Chicago, ICDS was a whirlwind conference with a chance to meet with NFCA’s distinguished Scientific/Medical Advisory Council and catch up with fellow colleagues from all walks of the celiac disease field. We also enjoyed the opportunity to meet new people and, finally, put faces to names of individuals we regularly work with remotely.

In her October 2013 newsletter note, NFCA President Alice Bast shared some highlights from NFCA’s experience at ICDS 2013. But this was just a sneak peek! Some of our NFCA staff have compiled an informal list of discussion topics and statistics that resonated the most. To give you an idea of individual interests, we’ve categorized the meeting highlights by staff member.

Nancy Ginter, NFCA Director of Operations

• Among the older population with celiac disease (age was not defined in the talk), there are more men diagnosed.
• In general, women have more symptoms than men and men are sicker than women when diagnosed.
• Only 50% of patients are getting biopsies, with males and non-whites among the lowest number of patients undergoing biopsy.
• A reminder that proper biopsy protocol is to take four to six tissue samples, but currently most only take two.

Beckee Moreland, NFCA Director of Gluten-Free Industry Initiatives

During the session “Debunking Myths About Celiac Disease,” experts including Dr. Stefano Guandalini, Melinda Dennis, MS, RD, LDN and Dr. John Zone discussed the following:

• Coffee does not cause a cross reaction with gluten antibodies.
• There is no evidence that corn gluten elevates antibodies in patients with celiac disease or Crohn’s disease.
• GlutenEase or supplements like this do not break down gluten enzymes and should not be used by celiac disease patients.
• Do only skinny people have celiac disease? Will a gluten-free diet help you lose weight? NO. In fact, 40% of people are overweight when diagnosed, while 4-5% are underweight. Obesity is increasingly seen as a symptom of celiac disease. Regarding the effects of a gluten-free diet on body mass index, weight is usually regulated once on the gluten-free diet. You can gain weight because you are absorbing food now and eating larger amounts.
• An update on point-of-care tests: These tools could be helpful to check for gluten ingestion, as well as for a preliminary celiac disease diagnosis but not for a final diagnosis. Both reading the test accurately and reading the test within the appropriate window of time (5-10 min.) are important.

Jennifer North, NFCA Vice President

• There was a lot of discussion about gluten sensitivity and a debate about whether or not gluten sensitivity is truly a response to the gluten protein or if there are other properties in wheat (and possibly other foods) that cause symptoms similar to celiac disease. For example, possible food components may include gluten, FODMAPs, dairy, caffeine, and food additives.
• The drug Olmesartan can mimic celiac disease. Physicians should test for and rule out celiac disease before prescribing the drug.
• A continued emphasis that all people with IBS should be tested for celiac disease.

Kristin Voorhees, MA, NFCA Healthcare Relations Manager

During a debate about potential celiac disease, researchers and physicians threw out the following thoughts and questions to be considered:

• Is potential celiac disease a disease in itself or is it a type of celiac disease? For example, will all persons with potential celiac disease eventually develop celiac disease or will the abnormal antibodies return to normal?
• Males are at a higher risk for developing potential celiac disease.
• After 9 years of studying patients with potential celiac disease, an estimated 63% still had normal mucosa.
• Celiac disease is polygenic, essentially meaning that each patient has a unique disorder.
• Findings from The Environmental Determinants of Diabetes in the Young (TEDDY) Study included that among the U.S., France, Germany and Sweden, Sweden had the highest risk of celiac disease.

During a discussion focused on the findings from a study on families at an increased risk for celiac disease, we learned that:

• Girls are twice as likely to develop disease.
• Among persons with homozygous DQ2, there is a 14.6% risk of developing celiac disease.
• The majority of pediatric patients develop celiac disease before 3 years of age.

To learn more about NFCA’s role at ICDS 2013, head to the Celiac Disease in the News Feed.