Archive for June, 2012
I’m convinced that time speeds up between Memorial Day and Labor Day. Before you know it, summer is over and you’re not quite sure what you did all those months.
This year, kick off the summer with a gluten-free bucket list. Set a few goals, plan a trip or two, and see how many things you can check off your list before the season ends. Here are 8 activities to get you started:
- Host a backyard barbecue. Invite friends or family members over for a gluten-free cookout. Instead of the standard hot dogs and hamburgers, try grilling a whole chicken or making kebabs. Looking for inspiration? Check out the 4th of July Fun Guide our staff put together for party tips and a dip recipe.
- Visit a ballpark. What better way to enjoy a warm summer night than watching the game with a gluten-free hot dog? Gluten-Free Philly has a list of ballparks that now serve gluten-free concessions. If you’re in the Philadelphia area, grab a ticket to Celiac Awareness Night at the Phillies on July 20 and spend the night with gluten-free fans.
- Make your own ice cream sandwich. Grab two gluten-free cookies and a tub of your favorite flavor of ice cream. Drop a scoop of ice cream onto one cookie and place the other cookie on top. Best enjoyed surrounded by family and friends.
- Go camping. Surprising as it sounds, camping may be one of the most gluten-free friendly ways to travel. And it’s one of my favorites! Bring your own food and cook it in tin foil packets over a campfire. No concerns about cross-contamination here!
- Go for a walk. Take a stroll for a good cause by joining one of the many celiac walks this summer. If there are no awareness events in your area, consider launching your own like Athlete for Awareness Peter Bronski(50-mile run not required).
- Take a class. The kids may be out of school, but the summer is a wonderful time for your own enrichment. Treat yourself to a wellness retreat or a gluten-free cooking class. No time? Carve out 1 hour to watch one of NFCA’s webinars.
- Try a new recipe. You know all those gluten-free recipes you’ve pinned on Pinterest? Now’s the time to make them. Make it a goal to cook one new recipe per week, or host a cooking party with gluten-free friends so you can test several recipes in a single afternoon.
- Root for gluten-free Olympians. A number of gluten-free athletes are vying for the gold this year. The U.S. Olympic teams are still being decided, but we’re keeping an eye returning Olympians Dana Vollmer and Jenn Suhr.
As a newbie in the world of celiac disease, I’ve been relying on Celiac Central’s Printable Guides to help me begin navigating all the information that’s out there. From “What is Celiac Disease” to “The Gluten-Free Athlete Q&A,” the printable guides cover all the bases.
I thought I’d share my take on NFCA’s Top 5 Printable Guides:
What is Celiac Disease?
This might be an obvious choice, but this guide gives an overview of celiac disease and the gluten-free diet. Not only is the guide great for the newly diagnosed, but it also can help them explain celiac disease to family, friends, coworkers, etc.
Getting Started Guide
If you just found out you have celiac disease or non-celiac gluten sensitivity, this guide breaks down what gluten is, where it’s typically found and where it can be hiding. Alice Bast, President and Founder of NFCA, offers tips on gluten-free alternatives so you can still make your favorite recipes.
Navigating the Gluten-Free Diet in College
Moving away to college for the first time is stressful even when you don’t have to worry about finding something that is safe to eat on campus. Students going off to college have social concerns too- what about drinking at parties? How do I avoid awkwardness when a new flame tries to kiss me? This guide candidly helps new students figure out how to not miss out on any part of the college experience just because they’re gluten-free.
Gluten in Medications
Medications are a source of hidden gluten, so it’s important to talk to your pharmacist and doctor about the potential to get glutened by your meds. This guide tells you what to look for and where to go to learn more about your medications and their gluten status.
Should You Be Gluten-Free? Celiac Disease and Gluten Sensitivity Fast Facts
This guide gives you ten fast facts about celiac disease and non-celiac gluten sensitivity. This is another great guide to help people with celiac explain their autoimmune disease to others.
You can find all of the Printable Guides on CeliacCentral.org. Be sure to share them with a friend!
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.
This past spring was jam packed with business travels. There were times when I felt as if my “out of office” auto response would be up forever! So, it’s safe to say that I have good reason for being MIA on the staff blog. Let me backtrack so I can keep everyone in the loop.
Starting in February, Alice and I traveled to Orlando to participate in the American College of Preventive Medicine’s (ACPM) 2012 annual meeting. When we weren’t exhibiting at NFCA’s booth, where we explained the importance of patients not going gluten-free before being tested for celiac disease and clarified that yes, gluten sensitivity is real, we sat in on lectures from leading preventive medicine experts like Dr. Mark Hyman and learned how media outlets determine what news gets covered.
After that, it was back to the Northeast for another round of conferences. Cheryl joined me in attending Columbia University’s Intestinal Immune-Based Inflammatory Diseases Symposium where we snacked on fresh rolls from Free Bread Inc. (a personal new favorite!). The Celiac Disease Center at Columbia University continually organizes meetings that are educational and fun, allowing for the providers and patients to mingle. And, of course, it’s always a pleasure catching up with experts like Dr. Jonas Ludvigsson. You can read a recap of Cheryl’s experience and catch an interview I held with Dr. Ludvigsson after we parted ways in March.
Special note: While listening to some of the world’s finest celiac experts discuss topics such as the emergence of non-celiac gluten sensitivity and the role of the PillCam in the diagnosis and management of celiac disease, I learned the exciting news that an abstract from the NFCA was accepted for a poster presentation at the International Meeting on Coeliac Disease, Mastering the Coeliac Condition: From Medicine to Social Sciences and Food Technology. After months collaborating with the Celiac Center at Beth Israel Deaconess Medical Center and the Lankenau Institute for Medical Research on the data collection and analysis of the study “The Use of Disease Symptoms Checklist in Self-Initiated Diagnoses of Celiac Disease and Non-Celiac Gluten Sensitivity,” it was great to hear that our work would be recognized. (And judging from the theme of this post, if you think that my spring travels also involved a trip to Florence, Italy, you are correct. Watch out for my recap later this week).
The very next morning after returning from NYC, I hopped on a train to Washington, DC, to meet up with Alice and participate in the Digestive Disease National Coalition’s (DDNC) 2012 Public Policy Forum. This was my second time joining in the annual meeting where patients, industry representatives, healthcare providers, lawmakers and their legislative staff come together for two days of educational programs, legislative updates and advocacy training. Each year, the Digestive Disease National Coalition (DDNC) briefs participants from around the country on Federal healthcare legislation and policy and provide the opportunity to educate Members of Congress on issues of concern to the digestive disease community. In essence, it provides an opportunity to see the government in action.
This year, our colleagues from The Children’s Hospital of Philadelphia’s Center for Celiac Disease joined the Public Policy Form. It was great to have NFCA Scientific/Medical Advisory Board Member Dr. Ritu Verma and Patricia A. Bierly, CRNP, on hand to share the clinical perspective of celiac disease with legislators.
Stay tuned for more tales from my spring travels, including:
- Mastering the Coeliac Condition: From Medicine to Social Sciences and Food Technology in Florence, Italy
- Arkansas Dietetic Association’s (ArDA) Annual Meeting and Expo and the Long-Term Care Seminar in Little Rock, AR
Research presentation from graduate student of Emerson College’s Health Communications program in Boston, MA
- 2012 Digestive Disease Week in San Diego, CA
Celiac Disease Information, Please!
Even the slightest brush with celiac disease and other gluten-related disorders can bring questions to mind. Lots of questions. The first question usually is … where do I turn for the answers that I need right now?
Most of you know that all of the information on www.CeliacCentral.org is available free of charge and to all comers. The site covers lots of topics from “What is Celiac Disease?” to “Can I eat spelt on a gluten-free diet?” to getting the scoop on the latest research in the field.
But, from time to time, you just need to ask someone who can and will respond to you directly and personally. Enter the marvelous ladies who have volunteered to answer the questions coming to NFCA via info@CeliacCentral.org.
Last month while I was visiting my family in Virginia, I slipped away to Washington, DC, to have lunch with one of these amazing women. Gayle Wald has been ‘manning’ the info@CeliacCentral.org account for over three years, come rain or come shine. She has helped to train the new kids on the block and, undoubtedly, has dispensed answers and information to hundreds of writers with questions about their own situations.
When Gayle is not helping fellow celiac patients, she works as a professor at The George Washington University in Washington, DC, and is Chair of the Department of English there. She lives in the District with her husband and son.
At Gayle’s suggestion, we had a healthy and delicious lunch at Founding Farmers, a restaurant specializing in farm-to-table fare just a few blocks from the White House vegetable garden. And, yes, they serve gluten-free dishes.
Unbelievably, this was the first time that I had met Gayle personally. It was great fun getting to know the woman behind the email address. The National Foundation for Celiac Awareness (NFCA) is extremely fortunate to have the benefit of her experience, along with the true care and concern that all of the ‘Women of Info@’ bring to this program. I truly look forward to meeting each one personally, a neat trick as they live across the country from Pittsburgh to Wyoming to Iowa and beyond.
So, when you send NFCA an email, you will encounter one of these very special volunteers:
Rebecca Lownes Urbano
A huge thanks to them all –and to Joanne Gallagher for keeping their “on duty” schedules straight. They are maaahvelous!
Whenever this time of year rolls around, I get this feeling. It’s the feeling that I’m forgetting something like a birthday, anniversary, or special occasion. It just so happens that this year the feeling is especially strong and I remember what’s coming. June 13.
On the 13th, I will be celebrating 20 years of gluten-freedom and the day that was literally life changing. Not only did my diagnosis with celiac disease save my life, but it changed it as well.
After giving birth to my healthy baby boy, Cole, my body fell apart and I displayed the classical celiac symptoms – weight loss, fatigue, vomiting, depression, and weakness. I wasn’t even able to climb stairs or turn a faucet.
Eventually, I was hospitalized, had a small bowel biopsy, and a positive diagnosis. With Dave holding my hand and Cole in my arms, Dr. Dalke described celiac as a “rare” disease affecting 1 in 2,500 people. Dave whispered, “I knew you were special but not that special.” Turns out, I’m not really that special with 1 in 133 people living with celiac disease. But I was lucky and the gluten-free diet renewed my health, energy, and disposition.
Usually on special anniversaries, gifts are in order. On my special anniversary, I’d like to share a few of many exceptional gifts I’ve received over the years as a result of my diagnosis.
GIFT 1 – Love of Cooking
One of the greatest gifts you can give yourself is learning to cook well. You’ll never go hungry and you’ll always have friends.
Learning to cook from scratch was a challenge, but I loved the process. Before gluten-free products were everywhere and labels read “GF,” I learned to season with fresh herbs, spices and pure ingredients to make sauces and dressing from scratch. I learned which herbs and spices produce which flavors and enhance certain foods. My spice cupboard is more like a pantry!
GIFT 2 – Share the Love.
Hosting dinner parties and sharing meals with friends and family gives me a chance to show that gluten-free doesn’t have to be horrible, difficult, or medicinal. Clean, fresh, pure and easy are my approaches to cooking. Hostess tips include set a beautiful table, involve guests, and have plenty of wine.
GIFT 3 – Friendship – 2 GF BFs
My two gal pals, Jill and Mary, also have celiac disease. These great women have my back in crisis, tragedy, sickness, and gluten episodes. They share my frustration over gluten-free labeling, restaurant mishaps, and family dynamics. We celebrate the GREAT gluten-free life over amazing dinners, annual holiday cookie baking, and family milestones. I cherish them.