Posts tagged ‘kristin’
As a professional in the field of patient advocacy, it is a natural fit to share personal insights and experiences that extend beyond the topic of celiac disease when given the right opportunity. So, during National Eating Disorders Awareness Week (NEDAwareness) I thought that I would join the country’s discussion of reducing the stigmas associated with disordered eating behaviors and body image issues.
According to the National Eating Disorders Association, an estimated 20 million women and 10 million men develop an eating disorder at some point in their life. I am one of those 20 million women.
When I read that statistic, it is hard to wrap my head around the number of people living in discomfort and unhappiness with their bodies. After all, to quote Baz Lurhmann, who sang the infamous “Everybody’s Free (To Wear Sunscreen)” song adapted from Mary Schmich’s Chicago Tribune column, isn’t your body supposed to be “the greatest instrument you’ll ever own”?
As someone with a history of an eating disorder not otherwise specified (EDNOS), I found my diagnosis of celiac disease to be more than just a relief; it was incredibly apt, almost too coincidental of a solution. I could begin to heal my body through nutrition.
For years I lived in a fog where each day revolved around the same slew of preoccupations: food, exercise and weight. Almost immediately, my celiac disease diagnosis uprooted these thoughts and I began to view food as medicine, not the devil.
Perhaps my perspective is a sappy one. But for those living with celiac disease who still wrestle with the all-consuming preoccupations that only those with an eating disorder too often can understand, I gently encourage you to focus on the content and not the frame: it is possible to heal when food is your medicine.
To read more about celiac disease and eating disorders, check out this research recap.
You can also join the NEDAwareness conversation over on their website.
Questions? Comments? Please feel free to email me: email@example.com.
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
You may recognize Dr. Jonas Ludvigsson from NFCA’s Research News. A renowned researcher in the celiac disease field, Dr. Ludvigsson has co-authored some of the most cutting edge studies on this topic.
Currently, Dr. Ludvigsson is on a Fulbright Scholarship at the Mayo Clinic in Rochester, MN. NFCA Healthcare Relations Manager Kristin Voorhees asked him a few questions about his impressions of celiac disease research in the U.S. compared to his home country, Sweden.
NFCA: How is Swedish celiac disease research different from U.S. celiac research?
Dr. Ludvigsson: Several things are different. The awareness of celiac disease is very high in Sweden (together with Finland, we have perhaps the highest awareness in the world). This means that patients are likely to be diagnosed at an earlier stage, since general practitioners test frequently for celiac disease. Hence, a larger proportion of the Swedish celiac community has been diagnosed (compared to the U.S. population).
Another big difference, however, is the existence of the personal identity number (or National identification number).
This number is assigned to all Swedish residents and is unique for each individual. This means that we can trace every individual’s health for the last 30-40 years, and often longer. It also means that people are not “lost” from research, and that we can study thousands, sometimes millions of patients at the same time. For instance, I carried out a study on the risk of preterm birth in children born to mothers with celiac disease where we could compare the risk of preterm birth in 2,000 mothers with celiac disease, to the risk of preterm birth in 2.8 million Swedish women without celiac disease.
Through the personal identity number I have been able to identify about 29,000 patients with celiac disease in Sweden, and we now compare them with almost 150,000 individuals without celiac disease. This has allowed us to calculate the risk of death and cancer in patients with celiac disease. Celiac disease, even in those with a diagnosis, increases the risk of death, but the risk increase is very small. In 1,000 individuals without celiac disease, 7 will die in the next year (0.7%), while in 1,000 celiac patients, 10 (1%) will die next year. 10 is more than 7, but still the risk increases are very small.
NFCA: How can we improve celiac disease awareness in the U.S.?
Dr. Ludvigsson: I think the general awareness of celiac disease is increasing in the U.S.; to a large extent due to the high quality research done in this field in the US, both clinical research and experimental research. If there is one thing that I believe could help American research (and indeed research all over the world) it would be to agree on the definitions of celiac disease and related disorders such as non-celiac gluten sensitivity. Our latest paper was a collaboration between researchers in America and elsewhere, and we feel this could be the beginning of even more international collaborations. (Read more about this paper on celiac disease terminology.). Another thing could be to establish collaboration between celiac centers and share experiences. I also think that the work of the NFCA is great – being present at meetings, on the Internet, on Facebook, etc.
NFCA: Where do you think celiac disease research is headed?
Dr. Ludvigsson: I think there are three areas where progress is really needed:
1) Is undiagnosed celiac disease dangerous? And if it is, how dangerous is it, and in what regards?
2) How important is the dietary treatment? I think it is important, but it will not prevent all complications and associated disorders.
3) What is non-celiac gluten sensitivity? Is that dangerous to the individual?
Do you agree with Dr. Ludvigsson’s three points? How do you think the U.S. can improve celiac disease diagnosis?
One day last week, NFCA’s Vice President Jenn walked into our shared office with an outstretched hand that was holding a special delivery and said, “This is for you. Mike Savett asked that I give it to you.”
Any takes on what the “special delivery” entailed? Well, if you guessed Dogfish Head’s new gluten-free beer, Tweason’ale, you’re right!
Back in January when Mike of Gluten Free Philly broke the news that the craft brewery would be coming out with a new gluten-free beer, I was ecstatic.
I was diagnosed just 2 months after completing my Bachelor’s degree from James Madison University in 2007, at the exact time I was beginning to discover the taste of real beer. (And, no, that wasn’t a dig at gluten-free beer. Let’s just say the quality of beer you consume during college is not always premium.) So needless to say, my desire to expand my taste in beer was halted, and as far as I knew, it was halted forever.
That is definitely not to say that I haven’t enjoyed any of the ciders or beers that abound in the gluten-free marketplace. The availability of Redbridge at every Phillies game is a serious plus; having the option to sip a banana-bread style gluten-free beer at the GREAT-trained Devil’s Den in South Philly is fabulous and truly delicious; I enjoy the occasions when my dad picks up whatever new limited edition Woodchuck Cider has for the current season just so we can have a taste test; and, of course, when the Crispins of the world send a special package to our very own NFCA office!
But, something has definitely been missing, which is why I was ecstatic to have Jenn hand me a Tweason’ale. I quickly stuck the single beer in our office’s minifridge and shot off a quick emailing thanking Gluten Free Philly for his gift.
The next morning I came into the office to find an email from him with no actual content, but a single word in the subject line – “So?”
For anyone that has not had the opportunity to sip on Dogfish Head’s newest gluten-free craft beer, I suggest you run to your local distributor. I’m happy to say that this fun, craft-like gluten-beer has my vote!
The National Foundation for Celiac Awareness has accomplished a lot in 2011, but I wanted to know what my fellow co-workers thought was their biggest breakthrough of the year.
For Beckee and Jennifer, our gluten-free industry team, the top highlight was adding NFCA’s GREAT Kitchens training to US Foods Resource Advantage Program. The program offers discounts and deals on various resources for the foodservice industry. Thanks to Beckee and Jennifer’s hard work, more foodservice operators, including restaurants and dining halls, can now have access to gluten-free training through GREAT Kitchens at a discount.
Beckee also is proud of the increased availability of safe, gluten-free options for students from K-12 all the way through college. NFCA’s GREAT Schools program is aiding that cause by teaching dining hall and cafeteria staff how to properly prepare gluten-free meals.
For Nancy, helping NFCA secure the landmark FDA grant for our upcoming Gluten in Medications study was her biggest accomplishment. The $50,000 grant provides much-needed funding to pioneer this new area of celiac disease research, and NFCA is thrilled to be leading the charge!
Alice echoed Nancy’s sentiments about the FDA grant, as it was a huge milestone in NFCA history. Alice also named the Philadelphia Award as her top achievement in 2011. “This is one of the most prestigious awards in Philadelphia, and it brought front page coverage to the NFCA and celiac disease,” she noted.
For Alice, the award wasn’t an end result, but a jumping off point to bring even more awareness to celiac disease and gluten-free needs.
Kristin pointed to the many collaborations and connections she formed in promoting NFCA’s Primary Care CME:
“In 2011, 306 U.S. primary care providers received training from NFCA’s Primary Care CME. Medical experts indicate that primary care physicians have the opportunity to diagnose 18 new patients per year. Based on this statistic, our records demonstrate that NFCA has had the opportunity to directly impact the lives of 5,508 patients. NFCA looks forward to continuing our professional education efforts in 2012,” she said.
Spreading the word about the CME involved a number of helpers in 2011. Quest Diagnostics disseminated more than 9,000 promotional postcards to primary care providers; individuals and support group leaders distributed 2,800 postcards to local healthcare professionals; and NFCA, along with physician advocates and celiac champions, sent 2,000 postcards to medical conference, clinics and lunch meetings extending as far as Hawaii and Norway!
Whitney cited her work with the Asheville Independent Restaurant Association (AIR) as her biggest accomplishment of 2011. She stepped up at a moment’s notice and flew to Asheville, NC, to lead a gluten-free training course for 25 foodservice professionals. More than 20 restaurants in this popular tourist destination are now GREAT-trained and ready to serve gluten-free food.
For me, Kids Central was my baby, and like a proud mama, I was happy to see it take flight in October. The new microsite accomplished much of what we originally set out to do, and I couldn’t have done it without the help of many, many friends in the celiac and gluten-free community. I’ve met wonderful parents, super kids and amazing teens who were willing to share their stories and gluten-free recipes. We’ll continue to add new articles and advice as we move into 2012. In fact, I’ll be posting our first Ask the Pediatric Gastroenterologist Q&As today!
Wishing a happy and healthy New Year to all of our friends and fans!
I’m always prepared to bring an appetizer, salad or main dish to social gatherings and holiday functions. Like many with celiac disease, I quickly learned that if I wanted to eat a safe gluten-free meal, it was up to me to tote along at least one item I knew I could eat.
But dessert? Despite my sweet tooth, more often than not I have opted to forgo dessert simply because baking and I are not friends. So fruit has served as my go-to pick, and the nutritional benefits are always a plus. Alas, sometimes a fruit salad, no matter how fresh the ingredients, just won’t cut it. This Christmas, I wanted to join my family at the dessert table with something more substantial than pineapple and berries, even if topped with whipped cream.
Enter these no-bake coconut balls.
I’m sure you can guess that a recipe with minimal ingredients and without an actual “baking” process were both requirements. Fortunately, I stumbled across this simple recipe while performing the perfunctory Google search: No Bake Coconut Balls
The recipe called for nut butter plus chocolate chips or nuts of your choosing, but I opted for a combination of the two. My secret ingredient? Justin’s Nut Butter. This brand has been a pantry staple of mine for the past 2 years so I knew that their Chocolate Peanut Butter flavor was delicious. (If you are not already familiar with their line of nut butters, please head to your local grocery store immediately).
Not only did they fulfill my sweet tooth, but my family was impressed too. Who said you need flour to “bake” Christmas cookies?