NFCA Founder & President
How Can We Get to the Finnish Line?
Poor physician knowledge is an ongoing challenge for the celiac community. Few doctors know the various clinical presentations of celiac or the appropriate diagnostic tests, and research indicates that diagnosis can take anywhere from two to 11 years in North America. But it doesn’t have to be that way.
Last month, I had the honor and pleasure of having lunch with Dr. Markku Maki, a world-renowned Finnish researcher. In Finland, about 60 percent of celiac cases have been diagnosed—an impressive statistic, especially compared to the U.S, where detection is a mere 5-10 percent.
I asked Dr. Maki for insight on how we could improve the rate of diagnosis among celiacs still needlessly suffering. His answer turned out to be quite simple: Media, media and more media. He suggested that Oprah air a show on celiac disease/gluten sensitivity. A lofty goal, but imagine the impact!
Should the talk show queen come across this newsletter, there’s plenty of reason to join the charge. Raising awareness of celiac disease not only will help millions regain their health, it can also save money!
At a recent luncheon, NFCA Medical Advisory Board Member Dr. Alessio Fasano put a real price tag on detection. According to Dr. Fasano, each 1st or 2nd degree celiac relative who goes undiagnosed costs the healthcare system about $150,000. With an estimated 2.8 million people undiagnosed, there are likely billions (even hundreds of billions) of healthcare dollars we could save through better detection—dollars that could be put toward celiac awareness and research. (A blood test, by the way, costs only about $30 and can identify 80 percent of undiagnosed celiac sufferers.)
With more informed and empowered physicians, we could stop wasting time, money and energy on misdiagnosis. We could finally tip the scale from a disease-based model of care to one that upholds preventive health and wellness. It may seem just a dream, but who says we can’t reach for the stars (even a TV one) and make it a reality?
Of course, few of us have connections to Oprah and the like, but there is another influential group we can target: doctors. The NFCA is launching a brand new continuing education program for primary care physicians, and we need your help to spread the word. Led by celiac experts Dr. Dan Leffler of the Celiac Center at Beth Israel Deaconess Medical Center, Dr. Joe Murray of the Mayo Clinic College of Medicine and Dr. Michelle Pietzak of the Keck School of Medicine at University of Southern California, the course will give doctors a better understanding of celiac disease. Most importantly, the primary care community will learn how to identify at-risk patients and determine the best tests for diagnosis.
Whether you want to say “Thanks!” to the doc who told you about celiac or “Wake up!” to the ones who were clueless, get the message across by sending a link to the new Celiac CME Central at www.celiaccmecentral.com.
Danny the Dragon and Author Tina Turbin Share “Yummy Gluten-Free Tid Bits”
Keeping Your Celiac Child Safe at School
Now that your child has been diagnosed with celiac disease, you probably have an idea of how much work you have ahead of you in establishing a gluten-free diet for him. One of the most important steps in creating a gluten-free lifestyle for your child (http://glutenfreehelp.info) is making sure his gluten-free diet stays truly gluten-free when he’s at school. As a gluten-free advocate and mother, I am often asked by parents for tips on how to make sure their celiac children stay safe at school. Here are a few suggestions to help keep your celiac child’s diet free of gluten during the school day.
First of all, you’ll need allies and who better than your child’s teachers? This means all of his teachers, including his physical education instructor or his homeroom teacher, with whom some children only meet periodically. I highly recommend meeting with each teacher individually. If your schedule won’t allow this, meet with as many as you can in person and speak with the rest by phone. Writing a note or e-mail is usually insufficient to communicate the seriousness of the condition and the details of the diet, including crucial issues such as cross-contamination and hidden sources of gluten.
There are a few things you should let his teachers know about during this meeting. First of all, it needs to be communicated that your child’s restricted diet is to preserve his health; tell them that if your child deviates from his diet in any way, he can become seriously ill. However, make it clear that your child is still “normal” and has interests and ambitions just like other children and shouldn’t be set apart from the others in any way except with respect to diet.
Next, let the teachers know that if there will be a birthday party, snack time, or other event with food in the classroom, they should let you know ahead of time so you can prepare gluten-free items for your child to eat and share.
It may be important to mention that it’s okay to let your child’s classmates know about his condition, but only if it’s done in a positive way and when necessary. This will prevent other children from offering your child gluten-containing foods and will help your child feel more connected with the other kids because they’ll understand his condition and view it in a positive light.
Finally, keep communication as open as possible between you and your child’s teachers (and school administrators, nurses, and cafeteria personnel) by providing them with all of your contact information, such as your e-mail address and all phone numbers where they can reach you, including your cell, work, and home numbers. Give them phone numbers for relatives who are knowledgeable in celiac disease and the gluten-free diet or your child’s nutritionist, in case teachers need to ask a question about your child’s condition and aren’t able to get in touch with you. There may be an unexpected party, for instance, and a teacher may need to know right away if your child can eat the snacks. Encourage teachers to call you anytime, and make yourself available by keeping your cell phone on at all times, keeping it on silent or vibrate mode if you’re in a meeting, or checking your messages often.
In addition to communicating individually with teachers and the proper school staff, provide them all with written material on celiac disease. The National Foundation for Celiac Awareness has plenty of printable materials, and the Celiac Sprue Association offers printable letters for various school administrators, including the principal, school counselor, nurse, cafeteria staff and teachers. Also, recommend some books on celiac disease or gluten-free websites in case they want to refer to these resources themselves for more information. You may also consider donating a couple of books on these subjects to the school library and for the nurse’s office.
Finally, I can’t emphasize enough the importance of teaching your child about his own condition and his diet. Of course, how much your child can absorb depends on his age and maturity level. You’ll be surprised by how much a child is capable of understanding, though. Teach him to read labels and the synonyms for gluten. Even two-year-olds can practice “reading” labels with you at the grocery store. Practice with your celiac child at home how to explain his condition to others and how to say “No, thank you,” when he is offered gluten-containing products.
Learning how to meet the gluten-free dietary needs of your celiac child will involve some planning and a few adjustments, but in the end, it isn’t very tough to successfully adopt a gluten-free lifestyle. Successfully ensuring his diet will stay gluten-free when he’s at school is an important part of the process, but with these suggestions in mind you’ll be able to handle this step with flying colors.
With the new school year, there may be a new school and, more often, new teachers and new friends. Regardless, the topic at hand is important, and with the above points addressed, there is more assurance for a successful transition.
I wish every family all the success in the new school year.
More about Tina and the “Danny the Dragon” children’s book series:
Tina Turbin (http://TinaTurbin.com) became extremely interested and involved in the subjects of celiac disease, gluten sensitivity and gluten issues a number of years ago, after being diagnosed as celiac after many years of unresolved troubles. Since then, she has engaged in diligent research and writing about these topics, weekly radio shows, developing gluten-free recipes and reviewing companies for celiac consumer safety (http://GlutenFreeHelp.info)
Tina is an award-winning children’s book author
By Nicole M. Seitz, M.S.
The Internet has dramatically changed how people go about finding health information. In 2009, a Pew Research Center survey found that 61% of adults who use the Internet go online for health information1. And, a 2003 survey of people with celiac disease revealed that 70% used resources like the Internet, books, and support groups to find information about following a gluten-free diet, compared with 17% who received information from a medical doctor, and 13% who consulted a nutritionist2. There is no shortage of information online, from forum postings, blogs and health centers, to online retailers and organizations like NFCA dedicated to raising awareness.
Now, researchers are beginning to investigate how the Internet is providing support to members of the celiac community. A recent study analyzed an online exchange among members on a forum hosted by www.celiac.com3. (An online forum is like an electronic bulletin board where members can post questions to the community, and community members are free to respond and share in kind). The researchers were looking for patterns in the exchanges among forum members as a way to understand how online interactions may actually help individuals maintain a gluten-free diet.
Researchers chose to focus on one individual’s posting. Here is a forum member named Drew whose frustration level with following a gluten-free diet had reached a saturation point. Drew wrote: “I am so fed up with this diet…Has anyone ever decided to bag it in and just go back to a gluten filled diet?…I have been strictly gluten-free since being diagnosed, but I am ready to quit.”3. Researchers then carefully studied all the replies to this initial posting, examining word choices, personal stories shared by other forum members, and other information to identify patterns in how the community responded to this individual in distress.
What they found was that, while sympathetic to Drew’s frustration and wish that the diet could just be abandoned, community members who replied let Drew know that quitting simply was not an option. Community members shared personal stories about times when they knowingly or accidentally ingested gluten and the unpleasant consequences experienced. Nearly everyone who responded concluded that discontinuing a gluten-free diet was simply not a viable alternative for anyone interested in maintaining their health as a celiac. The researchers go on to suggest that compliance with the gluten-free diet is a “collective phenomena rather than a mere individual accomplishment.”3
It makes sense that having support helps people with celiac disease maintain a gluten-free lifestyle. This study contributes an insightful examination of how, by sharing our individual stories, we help to create a culture of compliance with gluten-free living within the celiac community.
Lee, A., & Newman, J. (2003). Celiac diet: Its impact on quality of life. Journal of the American Dietetic Association, 103(11) 1533-1535.
Veen, M., Molder, H., Gremmen, B., and Woerkum, C. (2010). Quitting is not an option: An analysis of online diet talk between celiac disease patients. Health, 14(1), 23-40.
About Nicole Seitz
By Cheryl McEvoy
Have you heard of community-supported agriculture (CSA)? It’s a growing trend in food distribution that links consumers directly to farmers for the freshest produce possible. In this hyperlocal exchange, community members pay for a membership or “share” of crops before the harvest. In exchange for their dues, members receive produce from the farmers throughout the season. Farmers benefit from a more stable income, and members get to enjoy fresh (and often unusual) fruits and vegetables, plus the satisfaction of promoting agriculture and sustainable living.
In Season Now
Experiment with new flavor combinations, or bring a new dish to a barbecue for everyone to sample. (Follow our Recipe of the Week blog for ideas). To stretch your comfort zone, try an unusual item like beets, boysenberries, chard, figs and fennel—all of which are in season now.
To avoid waste, consider the following options for your surplus:
Easy Freezy. Fruits and vegetables can be frozen while fresh, but make sure to properly store the goods in airtight and moisture-proof containers before popping them in the icebox. Poor storage can lead to freezer burn, which makes for soggy or darkened food once it defrosts. If the fresh route is too daunting, make a large batch of soup or a casserole and freeze for a quick weekday dinner down the road.
In a Jam. Make your own jam with a few simple ingredients. Most recipes call for combining fruit with sugar and lemon juice (for marmalade, add a little rind). Toss on the stovetop and simmer until it cooks down into a goopy texture. When stored in an airtight container, homemade jam can last for about 3 weeks; proper canning requires more skill, but yields a longer shelf life.
Embrace the Present. Why not gift your extra goods? Make a fruit basket for your parents’ anniversary, or drop off a veggie platter to a neighbor (complete with homemade gluten-free dip, of course).
For more information about CSAs, visit the U.S. Department of Agriculture’s website.
Wondering how the gluten-free diet will affect your college experience?
Thanks to our generous sponsor, Blue Diamond Growers, this webinar is available free of charge and the only requirement is a working Internet connection!
Join NFCA as Rebecca Panzer, MA, RD, LD, offers professional guidance for college-bound celiacs!
Rebecca will be on hand to:
Celiac advocate Deb Mailand, a senior at Tufts University, will also join us to share her firsthand experience and explain how gluten-free can be a success away from home and on campus!
Deb Mailand :
Rebecca Panzer, MA, RD, LD:
GREAT Aids University of Nebraska Staff During Special Olympics National Games
The University of Nebraska at Lincoln (UNL) recently had an opportunity to showcase their GREAT gluten-free training during the 2010 Special Olympics National Games! The university hosted over 40,000 athletes, families, volunteers and fans during the July 18th-23rd games, which not only featured competition in 13 different sports, but health and wellness educational seminars for athletes and their families.
The Lincoln Journal Star reports:
“Competition takes a lot out of a person. Athletes need healthy diets, enough water and plenty of sleep. That’s a lot to manage for more than 3,000 athletes, but it’s what Brett Broek signed up for as 2010 Special Olympics Director of Participant Services.
Food service workers will serve tens of thousands of meals to athletes staying at the University of Nebraska-Lincoln this week. They’ll pay attention to food variety and the restrictions some athletes have because of medical conditions, including diabetes and celiac disease which require gluten-free meals.
The theme: Keep it healthy and balanced.
The word getting back to Broek so far:
‘They have been thrilled with the meals. All in all, it’s been a very smooth process.’
Ron Burke, director of UNL dining services, said his staff of about 170 is accustomed to serving lots of meals. They do it all year for students.”
“Thanks to NFCA’s GREAT training, we were confident in our ability to accommodate their needs,” said UNL Associate Dining Services Director Pam Edwards of the gluten-free athletes participating in the National Games.
Back in April, 26 members of the UNL Dining Services staff representing seven campus facilities completed GREAT training. To read more click here.
GREAT in the News:
RC Fine Foods Sponsors Gluten-Free Webinar for Food Management Magazine and Restaurant Hospitality Readers. Click here.
NATIONAL FOUNDATION FOR CELIAC AWARENESS
APPETITE FOR AWARENESS:
Sunday, October 24, 2010
PHILADELPHIA CRUISE TERMINAL AT PIER ONE
Get ready for a fabulous time! Appetite for Awareness 2010will be spectacular! The National Foundation for Celiac Awareness (NFCA) is preparing an extraordinary event full of fun, food and gluten-free delights!
This annual fest and Philadelphia tradition has something for everyone!
Appetite for Awareness: a Gluten-Free Cooking Spree is moving to a new and fabulous venue. The amazing Philadelphia Cruise Terminal at Pier One offers 40,000 square feet of space for our celebration of the gluten-free lifestyle.
As always, Appetite for Awareness will feature delicious gluten-free food from well-known area restaurants, and Philadelphia’s premier chefs will cook up a storm, accompanied by top docs from local hospitals. Watch these skilled food artists prepare delectable treats for your enjoyment.
Early Bird Pricing
Tickets at the Door
For more information, visit www.beyondceliac.org. We will be looking for you on October 24th!
Be sure to visit the NFCA website, www.beyondceliac.org, to get the news about other events in your area. Go to the Events tab and check it all out!
Real Foods Corn Thins
Arico Cassava Chips
Dr. Schar Gluten-Free Cheese Bites
Clean Cravings Gluten-Free Pizza Crust
Researchers Pinpoint the Trigger for Celiac Disease Immune Reaction
“Anderson, and fellow researchers recruited more than 200 celiac disease patients for their study. Participants ate servings of bread, rye muffins or boiled barley for three days. Six days after the experiment started, the researchers drew blood samples. They tested the samples to see how strongly immune cells in the blood reacted to more than 2,700 different gluten peptides (relatively short chains of amino acids). Ninety of the peptides elicited some response, and three in particular generated the biggest reaction.”
Pinpointing these peptides is a huge advance and could very well lead to advances in therapies used to treat celiac disease.
General Mills Releases Gluten-Free Bisquick and Hamburger Helper!
Danny the Dragon Meets Jimmy – iPad App Coming Soon
Chelsea Clinton’s Gluten-Free Wedding