Gluten-Free, Research-Full: Celiac Disease Updates from Oslo

While Alice had secured her participation in the 14th International Coeliac Disease Symposium (ICDS) earlier this winter, it wasn’t until just one month before ICDS that it was decided I would be attending as well. Once I got the green light to book all the necessary details, I was beyond thrilled to join the 500 plus people expected to attend ICDS in Oslo, the capital city of Norway, which is home to 17-18 hours of daylight during the summer months.

On Friday, June 18, Alice and I began our journey abroad. After a three-hour delay on the runway thanks to heavy rain, thunder and lightening and, as a result, a missed connecting flight in Frankfurt, I arrived in Oslo 30 hours later. (A big thanks to Lufthansa for a delicious gluten-free meal and plenty of safe snacks!)

While the official presentations weren’t set to begin until the morning of Monday, June 20, Alice and I arrived in time to attend a special presentation on gluten sensitivity (GS) Sunday evening. ICDS 2011 started out strong with a pre-conference workshop on gluten sensitivity sponsored by Dr. Schar, the European market leader in gluten-free. Alessio Fasano, MD, and David Sanders, MD, led the 2-hour workshop on the emerging condition. (More on this later).

To break it down for those who were unable to participate, ICDS 2011 was divided into two parallel meetings: the International Symposium and the Clinical Forum. The Symposium served as a platform for the field’s top physicians and investigators to present “state of the art” celiac disease research, and the Forum provided an opportunity for patients, families of persons with celiac disease and healthcare professionals to learn the real-life impacts of the latest research in jargon-free language.

Over the course of 3 days, ICDS presented a total of 17 sessions, with much of the content overlapping between the two meetings in an effort to ensure the patient community received the best information. The Symposium lasted the full 3 days, while the Forum took place on Monday and Tuesday.

As is the case with conferences like ICDS, Alice and I found some presentations to be more intriguing than others. And since many sessions had overlapping elements, I thought the best way to share our experience with the community was to outline five recurring themes from ICDS 2011.

NFCA Medical Advisory Board member Dr. Michelle Pietzak enjoys a boat trip during ICDS 2011

1. Non-Celiac Gluten Sensitivity/Gluten Intolerance

The medical and scientific community has long agreed that celiac disease is an autoimmune condition triggered by the consumption of gluten. In recent years, the term “gluten sensitivity” has been coined to describe those individuals who also cannot tolerate gluten and at times experience gastrointestinal symptoms similar to those with celiac disease. Gluten sensitivity has been clinically recognized as less severe than celiac, and has been defined as “not accompanied by the concurrence of tTG or autoimmune comordibities.”

It was very exciting to see this topic receive a great deal of attention between Dr. Schar’s pre-symposium conference with Doctors Fasano and Sanders and a 1 1/2 hour oral seminar during Tuesday’s International Symposium. Doctors Fasano and Sanders discussed the following key points about non-celiac gluten sensitivity:

• Gut inflammation is not present, which is unlike celiac disease.
• There is no diagnostic tool for non-celiac GS.
• Prevalence in University of Maryland’s Center for Celiac Disease Research ’s
  practice is estimated to be 1 in 17 (6%).
• Dr. Fasano explained that in order to diagnose a person with non-celiac GS, his Center uses a double blind gluten-free diet intervention lasting for 3 weeks.

Dr. Schar shared the success of their First Consensus Conference on Gluten Sensitivity held in London earlier this year, and also announced the establishment of the Dr. Schar Institute, which is a new point of reference for medical and healthcare professionals in the areas of celiac, gluten sensitivity and gluten-related disorders in general. All in all, it was great to see that the research field is catching up to the publicity of the non-celiac version.

Despite the agreement that a non-celiac version of a gluten-related disorder exists, it is clear that the medical community lacks consensus on the spectrum and terminology for this field. Perhaps the best example is this: the pre-conference workshop used the term “gluten sensitivity” while the ICDS session was entitled “non-celiac gluten intolerance.”

Great photo of Alice (left) at ICDS 2011! Courtesy of Jonas Meek and ICDS 2011 Local Organising Committee.

2. Strong Need to Develop Adequate Programs for Follow-up and Management

Dan Leffler, MD, MS, Director of Clinical Research from BIDMC and NFCA Scientific/Medical Advisory Board member, gave the opening lecture for Wednesday’s session on Clinical Presentation, Follow up and Imaging. Dr. Leffler began his talk by noting that original faith in the gluten-free diet halted research on therapeutic treatments. As he went on to recognize that lifelong adherence to the gluten-free diet ranges 40-75% (yes, a huge range!), my mind wandered to those whose compliance is so varied. Were these people without symptoms, thus not seeing the immediate need for the diet? Or individuals who could not afford the hefty grocery bill that comes with the diagnosis?

Combined with the fact that the blood tests are poor measures of the diet’s success, it’s evident that a better model of disease management be implemented among the celiac population. And Dr. Leffler’s call for the medical community to develop disease management guidelines couldn’t have been clearer. With its disease-related health no different than diabetes or inflammatory bowel disease, two conditions that have management protocols in place, it’s time for celiac to step up to the plate.

A final comment from an audience member led to the conclusion that education among primary care providers is still sorely needed, for both the diagnosis and management of celiac disease. In fact, ICDS attendees from across the world agreed: the lack of awareness and education among primary care physicians is what keeps millions of celiac sufferers in the dark and untreated for so long. [NFCA offers a first-of-its-kind continuing medical education (CME) program for primary care providers at www.CeliacCMECentral.com. Learn how you can encourage your doctor to complete this free online course.]

3. Epidemiology

Some of you may be familiar with the Swedish Epidemic, which occurred from 1973 to 1997 when there was a fourfold increase in symptomatic celiac in children younger than 2 years old. Anneli Ivarsson, MD, PhD, of Umea University and the Prevent Coeliac Disease initiative (and author of the just published study on the global mortality of undiagnosed celiac disease in children). For those who are not familiar with the Swedish Epidemic, here’s the background:

Before the Epidemic, a national recommendation was made to postpone introduction of gluten from 4 to 6 months of age, an interval during which breast-feeding was at large discontinued in the country as well. As a result, the National Swedish Guidelines for infant feeding practices were updated to the following: Babies should be breastfed for 4-6 months while avoiding gluten-containing foods before 4 months. Gluten should be introduced between the 4 and 6 month window, while still breastfeeding.

Dr. Ivarsson noted that in 1995 the disease’s prevalence returned to its original risk, which strongly suggested that prevention is possible. Today, it is estimated that 1 child in every Swedish class has celiac, with the majority undiagnosed. Talk about a resonating statistic!

In addition to the prevalence of celiac disease, the Epidemiology session included presentations on prevention strategies, such as breastfeeding and dietary intervention. One particular highlight was the overview of Prevent Coeliac Disease (CD), a multicenter initiative in 10 European countries whose objective is to “significantly reduce the number of people suffering from celiac disease in Europe, by developing primary prevention strategies for celiac disease.” To learn more about Prevent CD, check out their website.

I couldn’t fit all the information into one post, so stay tuned for the next installment of my ICDS coverage. On the agenda: Personalized Medicine, Quality of Life, and more!

See more photos in the official ICDS 2011 album.