Spring Travels: Around the World with Celiac Experts and Dietitians
In my last post, I described where the first half of my spring travels took me – Orlando, Manhattan and Washington, DC. Now, I’m going to fill you in on an international trip and other domestic travels!
It was an honor to share findings from NFCA’s collaborative study with the Celiac Center at Beth Israel Deaconess Medical Center (BIDMC) and Lankenau Institute for Medical Research (LIMR), “The Use of Disease Symptoms Checklist in Self-Initiated Diagnoses of Celiac Disease and Non-Celiac Gluten Sensitivity,” as a poster presentation at an International Meeting on Coeliac Disease in Florence, Italy this past March.
Together, NFCA, BIDMC and LIMR aimed to understand the diagnostic experiences of patients who use the web, specifically NFCA’s Celiac Disease Symptoms Checklist, to prompt a self-initiated diagnosis of celiac disease or non-celiac gluten sensitivity. NFCA’s Celiac Disease Symptoms Checklist was designed to be a patient education tool that drives awareness of celiac-associated symptoms and conditions. Our ultimate goal was (and remains to be) that patients would use this tool to start a conversation about celiac disease with their healthcare providers. As a result, the Checklist provides the ample opportunity to study health behavior. You can learn more about the study, including the ability to view the poster itself, by heading over to NFCA’s Research News feed.
Of course, I realize that most people don’t have the opportunity to travel to Italy for work. What can I say, I’m a lucky girl and I know it.
For those of you who don’t know, I studied abroad in Florence during my junior year of college (pre-celiac days), so I know the city quite well. It was my first return trip since 2006 and the experience wasn’t anything short of awesome! Between attending presentations from some of the finest celiac experts in the world and enjoying gluten-free pasta and pizza in the country from where pizza and pasta hail, it was wonderful.
What’s more, Alice and I were beyond impressed with how the Italian foodservice industry understood celiac disease and handled gluten-free menu options. Here’s an example: more than once we were turned away from a restaurant who knew what gluten-free required, but were honest about not being able to control cross-contamination. The restaurateurs and servers understood that the gluten-free diet is a form of medical nutrition therapy and not the latest fad diet.
Case in point number two: On my last night in Florence I visited one of my favorite gelato spots, Festival Del Gelato, for an after-dinner treat. After suggesting that I pick a different flavor because of the risk of cross-contamination (chocolate hazelnut is popular!), the clerk asked if I would like a gluten-free cone instead of the normal cup and proceeded to grab an individually wrapped cone from a rack. How fun!
After Italy, my next stop was Little Rock, AR. Talk about night and day, huh?
In an effort to raise awareness of celiac disease and non-celiac gluten sensitivity among Arkansas dietitians practicing in the long-term care, foodservice and clinical settings, NFCA partnered with the Arkansas Dietetic Association (ArDA) and the Arkansas Dietetics in Health Care Communities (ArDHCC) to participate in their 2012 Annual Meeting & Expo.
After spending many months coordinating educational lectures, preparing a delicious gluten-free food sampling and organizing materials for the exhibit hall, I traveled to Little Rock where I spent 3 days. It was great to finally meet the ArDA and ArDHCC team with whom I had spent countless hours emailing and talking via the phone. I also had the pleasure of spending some time with Anne Lee, MSEd, RD, LD, Schar USA’s Director of Nutritional Services, and Dr. Lucy Gibney, President and CEO of Lucy’s, a GREAT Business Association Member. You can read more about my experience in Arkansas here.
Just two days after returning from Arkansas I made my way north to Boston to attend a presentation by Claudia Dolphin, a graduate student from Emerson College’s Master’s in Health Communication program, on a research project titled, “Screening for Health: Attitudes and Beliefs of Non-Participants in Disease Testing.” As an alum of Emerson’s Health Communications program, which is in collaboration with Tufts School of Medicine, I was honored to serve as a co-preceptor to Claudia over the past 6 months as she completed her Applied Learning Experience (ALE) project, the equivalent to a Master’s thesis. Here’s another twist to the story: the other preceptor providing guidance to Claudia was my own preceptor from my grad school days – Dan Leffler, MD, MS, the Director of Clinical Research at the Celiac Center at BIDMC in Boston. It has been pretty neat experiencing things come full circle.
Anyway, back to the presentation…
Claudia’s ALE project focused on conducting research on the perceptions of celiac disease among families where a member has been medically diagnosed. Her research sought to uncover the attitudes and beliefs of at-risk family members who have not been tested for the disease.
You may have noticed recruitment notices for research participants this past March and April and wondered what would become of the research. Well, now you know! Together with BIDMC, we are currently gearing up to implement Claudia’s work on CeliacCentral.org and into NFCA and BIDMC programming. Check back soon for an update on how you can help persuade your family members to take getting tested for celiac disease seriously.
In late May, my business travels ended with a trip out to sunny San Diego to attend Digestive Disease Week 2012, otherwise known as DDW, the world’s largest gathering of physicians and researchers in the fields of gastroenterology, hepatology, endoscopy and gastrointestinal surgery.
Many of you may have trouble staying awake just reading this meeting’s subject matter, but as a self-proclaimed nerd, it’s the one conference I look forward to each year. In addition to learning the latest and greatest research, it’s always a pleasure to catch up with the field’s different thought leaders, many of whom are members of NFCA’s Scientific/Medical Advisory Board. In addition to attending the lectures, DDW attendees also have the opportunity to visit the poster sessions in the exhibit hall and even speak with the study’s researchers if they happen to be standing at their poster. Each day, the posters are changed to reflect a new topic. Saturday, May 19th was designated for celiac disease.
Here are a few highlights from this year’s conference:
- Dr. Sveta Shah from BIDMC presented findings from the Boston group’s study “Celiac Disease Has Higher Treatment Burden Than Common Medical Conditions.” A notable conclusion included that “despite high treatment burden, celiac disease patients reported high disease specific health state.” As a result, Dr. Shah and her colleagues suggest that, “the burden of following the gluten-free diet may be a reason why adherence is limited and argues for the need for adjunctive therapies.” I personally think that this an important finding given what seems to be continually emerging research on the importance that quality of life plays in celiac disease management.
- Using data of 7,798 persons observed from the National Health and Nutrition Examination Survey (NHANES) 2009-2010, Jinjuvadia et al. discovered that an estimated 1 in 111 individuals in the U.S. population has celiac disease. The group also noted that celiac was more common among men than women. While the disease prevalence is certainly not “new” news, I thought their method was an interesting way to capture celiac disease in the U.S. And, given that we currently believe more females are diagnosed than males, I found their other discovery to be interesting, too.
- In the world of celiac disease, we are programmed to believe that gluten is evil. Judging by the work of a group of researchers led by Dr. Schuppan (the scientist who led the way in identifying tTG as the celiac disease autoantigen), gluten may not be the only “evil” protein involved. On Saturday the 19th, Alice and I had the privilege of meeting Dr. Zevallos, lead author of the abstract “Isolation of Alpha-Amylase/Trypsin Inhibitors From Various Plants and Their Ability to Activate Innate Immunity in Celiac Disease.” Zevallos explained that they recently identified non-gluten components of wheat, the family of alpha-amylase/trypsin inhibitors (ATIs), as powerful activators of innate immunity. This time, they took it one step further and defined three classes of grains, including naturally gluten-free grains, and their substitutes according to their ability to fuel innate immunity activity. Stay tuned for more details as their research continues.
- The North American Society for the Study of Celiac Disease (NASSCD), the U.S. national society of medical, scientific and allied health professionals in the field of celiac disease, held its first General Assembly meeting during DDW. Although I wasn’t able to participate since I’m not a clinician, I attended the reception following the meeting and can attest to the establishment being an exciting development. The new group will provide leadership in advancing the fields of celiac disease and gluten-related disorders by fostering research and by promoting excellence in clinical care, including diagnosis and treatment of patients with these conditions. It’s the first time that the U.S. thought leaders have come together to form a clinical and research focused collaboration.