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Financing a Revolution
We buy pricey food, fork over co-pays, and rack up hundreds in fuel expenses just to shop at specialty food stores. And we’re supposed to be lucky?
According to Dr. Dan Leffler, yes.
Dr. Leffler, a member of NFCA’s Medical Advisory Board and Director of Clinical Research at The Celiac Center at Beth Israel Deaconess Medical Center, presented new research at last month’s Digestive Disease Week about the role of socioeconomic factors and diagnosis. Basically, the higher your income, the more likely you are to get diagnosed. (See more in Celiac in the News)
According to the study, the disparity has a lot to do with access to quality health information. A blood test for celiac can cost as little as $30, but getting to that test is where the underlying costs lie.
Celiac disease is treated with a simple (albeit expensive) change in diet. No drugs or medication needed. It’s empowering, but it also means we get nothing in pharmaceutical support. And that’s a big void to fill.
Pharmaceutical companies spend big bucks making a drug – and the ailment it treats – known. There are television commercials, magazine ads and sponsored web content, all to tell the public about the drug and why they might need it. On the medical side, they sponsor educational programs and send reps to doctor’s offices, which raises awareness of the condition while pitching their new treatment. Even in Washington DC, pharmaceutical companies can afford the lobbying power that gets legislative action done.
In the end, patients are more aware of the disease, and doctors are more prepared to diagnose it. When people hear “Ask your doctor about ________,” there’s a tendency to listen.
But we don’t have that.
Instead, it’s up to the organizations, the advocates, the affected individuals, to do the grunt work. And we are. We created the Celiac Disease Symptoms Checklist (www.DoIHaveCeliac.org), so patients could learn their risks and start a conversation with their doctors. We launched a free continuing medical education program to teach primary care providers about celiac disease (www.CeliacCMECentral.com). By banding together with other advocates, we’re finally getting gluten-free food labeling the attention it deserves. And it’s all been done with limited resources.
Still, there’s a lot to be done. As Dr. Leffler’s study shows, we haven’t reached everyone yet, but we all would benefit from doing so. The more patients who ask questions, and the more doctors who know what to look for, the faster and better diagnosis will become. As more people learn that they have celiac disease or gluten sensitivity, the greater the demand will be for gluten-free options. In time, that could mean more items with lower prices andfewer miles to travel just to get a box of gluten-free pasta – not to mention the millions we’d save in healthcare dollars by preventing the long term effects of misdiagnosis.
So, really, supporting the cause now is like making an investment for a better, healthier, and cheaper future . And to prove it, I’m putting my money where my mouth is.
When I won the Philadelphia Award, the Independence Foundation offered me a $25,000 check. I told them to write it out to NFCA. I believe in the work we’ve already achieved, and I believe in our promise to continue those efforts. I ask you to do the same. Give what you can – we’ll squeeze every dollar to get the most value for you.
Enjoy a Gluten-Free Summer Vacation
By Tina Turbin
With school out and the sun shining, summer is a popular time for family vacations. In fact, I highly recommend a getaway for families with celiac children as a fun way to build togetherness while demonstrating that just because they’re gluten-free doesn’t mean they can’t be like “normal” kids. Thanks to various helpful resources, gluten-free families don’t have to be left out of this American tradition.
Your gluten-free vacation doesn’t have to be long and extravagant. Even just a weekend trip to a nearby attraction, such as a lake or theme park, can satisfy your family’s urge to “get away from it all.” However, if you have the means and the interest in traveling far, don’t worry about your gluten-free diet getting in the way. Whether you elect a short getaway locally or a week-long tour of France, there are resources you can rely on and tips you can follow to make your gluten-free vacation simple and fun.
The key to a successful gluten-free family vacation is planning. You’ll want to plan ahead with respect to accommodations, dining out, and even the trip to your destination. I suggest, when possible, staying in a vacation home, condo or hotel room with a full kitchen so that you can prepare your own food if necessary. This is especially convenient on camping trips or vacations where you won’t find a variety of restaurants around. It can also save you time and money, even if you just make breakfast on your own.
Next, you’ll want to check out some helpful gluten-free resources, which abound both in print and online. I recommend GlutenFreeTravelSite.com, where you can find reviews on gluten-free-friendly hotels, resorts, grocery stores, restaurants, and cruise ships all over the world. Searching is easy on the website, and you’ll even be able to conveniently map the results. Triumph Dining’s The Essential Gluten-Free Restaurant Guide is a useful print publication that lists restaurants in all 50 states. Triumph Dining also sells cards in several languages for gluten-free diners to share with their servers and chefs, a product which is especially helpful for those who will be travelling to foreign countries.
You can also do research on your own about the area you’ll be visiting. You can look for celiac support groups, health food stores that sell gluten-free foods, and even gluten-free blogs that might mention local gluten-free-friendly businesses and eateries.
You’ll of course want to pack plenty of gluten-free snacks and foods that don’t require refrigeration. Call your airline ahead of time, if you’ll be flying, and ask about their policy regarding bringing food. If you’ll be driving to your destination, research gluten-free dining options along your route. Make sure you bring enough snacks and food in case of delays.
Although some gluten-free families like to have everything planned out for them and choose to take a trip arranged through gluten-free travel agencies, such as Bob & Ruth’s Travel Club, it is possible to plan a successful gluten-free summer vacation on your own. With some planning and research, your kids will be talking about your vacation for years to come.
Gluten-Free Recipes for a Warm & Wonderful June
By Chef Oonagh Williams
June is filled with celebrations like Father’s Day, graduation parties, weddings, and even just summer fun with friends. In England, June is the time for tiny new potatoes and fresh peas served with salmon and hollandaise sauce, as well as fresh strawberries and cream everywhere you go. As I’ve said before, I like cooking naturally gluten-free real food. Baking doesn’t always have to be involved, so embrace the warm weather with these recipes.
SHRIMP, MANGO AND TOMATO SALAD
NO-BAKE KAHLUA CHEESECAKE MOUSSE
British-born award-winning chef Oonagh Williams has a culinary arts degree and was trained in London and Switzerland. Based in New Hampshire, Chef Oonagh began adapting meals to gluten-free versions after her son was diagnosed with gluten and lactose intolerance two years ago. Chef Oonagh gives presentations and classes on gluten-free cooking and living, consults and guides people in adapting to a gluten-free lifestyle. She appears most months on her local New Hampshire ABC station, WMUR, as the featured chef.
Clumsiness and Imbalance
By Gini Warner, MA
Imbalance and clumsiness may not be the most common symptom of the nervous system related to gluten intolerance, but it is an area of research. Physicians use the term “Ataxia” to describe poor coordination and balance. It can affect your walking and your ability to stand. While many systems contribute to your balance, your cerebellum in the brain is the location that organizes all of the information and navigates your movements precisely.
Some doctors claim that ataxia is one of the most common disorders produced by gluten in relationship to our nervous system.Poor coordination and clumsiness does occur with gluten intolerance and affects children as well as adults. Evidence suggests that this is due to the immune system’s reaction to gluten itself.
In people who are genetically at-risk for gluten sensitivity, gluten induces an immune attack against the protein gliadin, and this antibody not only attacks gliadin, but also attacks tissues far away from the intestines. In this case, these antibodies travel through the bloodstream to the cerebellum and attack the Purkinje cells. As these cells become inflamed from the immune attack, the ability to coordinate all the “balance information” is impaired. Symptoms like poor balance and coordination can result.
A 2003 study in Britain examined 224 people with ataxia disorders. Some had an inherited disorder of ataxia, some had ataxia combined with other neurologic symptoms, and some simply had ataxia without known cause. Of those that were without known cause, 41% were found to have anti-gliadin antibodies, supporting gluten sensitivity as a cause. In another study, 10 patients with headaches and/or clumsiness were placed on a gluten-free diet. Over time, 9 of the 10 showed a beneficial response in all symptoms. Even more recently, a 2006 study found a possible association between progressive cognitive impairment and celiac disease. Of 13 patients, 10 had ataxia and 4 also had peripheral neuropathy. Cognitive function improved or stabilized in 3 patients after gluten withdrawal.
The connections are striking. The presence of gluten antibodies, shrinkage of the cerebellum and the dramatic response to dietary change all support gluten as the cause.
About Gini Warner
Gini Warner completed her master’s degree in Health Education and Nutritional Science at New York University in 1988 and has been working with families, individuals and corporations in the fields of celiac disease, immune dysfunction, diabetes, osteoporosis, weight loss and overall wellness. She has been a practicing nutritional counselor for more than 20 years. Gini recently co-authored The Gluten-Free Edge.
Last month, the Gluten-Free Food Labeling Summit gathered leaders from celiac organizations, the food industry and government. Representatives from Congress and the Food & Drug Administration acknowledged the need for clear and standardized gluten-free labeling.
Now the question is: What’s next? With countless other items battling for government attention, labeling could easily fall by the wayside. So, we asked 1in133.org Co-Founders Jules Shepard and John Forberger to share some tips to keep gluten-free labeling on the agenda.
1. Sign the 1 in 133 online petition, which will be presented to the FDA once 10,000 names are collected (currently at more than 9,500). Anyone who eats or purchases gluten-free food (or supports those who do) can sign: www.1in133.org/you/
2. Make appointments with your local congressmen if you are visiting Washington, DC. After all, you hired them to represent your concerns!
3. Write your state representatives, asking them to endorse or sponsor a resolution designating May as Celiac Awareness Month in your state. (Ohio, New York, Oregon, North Carolina and, most recently, California have already taken this step.) Now is a great time to start working toward a resolution for May 2012!
4. Write your Congressional representatives and ask that they cosponsor H.Res. 246, which supports May as National Celiac Awareness Month. The bill is sponsored by Rep. Nita M. Lowey (NY) and already has 5 co-sponsors: http://thomas.loc.gov/cgi-bin/bdquery/z?d112:HE00246:@@@L&summ2=m&
5. Spread the word about the need for proper gluten-free food labeling to all manufacturers you meet at expos, cooking demos and facility tours.
6. Don’t be afraid to ask manufacturers what they are doing to provide the cleanest and safest foods. Do they clean their production lines? Test every batch of foods? Recall unsafe items? Call their customer service lines and ask. You have a right to know, and by asking those questions, it clues them in to the need for clean (and gluten-free) manufacturing practices.
7. Encourage manufacturers to become certified gluten-free and verify their safety practices through a third party.
8. Speak out about gluten-free! The more people hear your experiences and why you follow a gluten-free diet, the more seriously restaurants and manufacturers will approach gluten-free food safety. Plus, you will be educating others who may not yet know they have celiac or gluten intolerance!
By Jennifer Fugo, CHC, RYT
The package says ‘gluten-free’ so it must be healthy, right? Think again. Though you might think labels like this mean healthy, food companies rely on marketing that uses labels and often confusing wellness jargon to entice you to buy their products. Assuming it’s healthy, you end up buying cabinets full of seemingly healthy gluten-free junk food. But, by learning the simple keys to reading nutrition labels, you’ll have the confidence to read and actually know how healthy your product choices are.
Until a few years ago, I wasn’t aware of how much sugar, sodium, fat and other added junk was hidden in my food. I assumed that certain organic and gluten-free brands were healthy. Like me, many others are misinformed about what’s actually important on a label, since reading food labels isn’t a skill we’re taught growing up.
Your answer to buying healthier gluten-free products begins by learning to read the nutrition label. Here are five simple tips you can start using now.
1. A label doesn’t always mean “nutritious.” Phrases like “gluten-free” or “organic” explain important aspects about a product, but they don’t dictate how healthy a product actually is. Review the nutrition label and ingredient list to determine if it’s healthy.
2. Be cautious when reading health claims placed on the packaging. “Heart healthy” would be an example of a health claim. When choosing a gluten-free product, look for a certification seal.
3. Look for products that are a good source of fiber. Many gluten-free products have very little fiber, making them less than ideal choices.
4. Beware of excess sugar. It adds up fast, especially when it’s hidden or from natural sources like fruit. As a reference, consider that 4.2 grams of sugar equals 1 teaspoon of sugar.
5. Low sodium is best. Products like soups, dips, frozen and pre-packaged meals are loaded with enough sodium to get your daily recommended allowance in one meal.
About Jennifer Fugo
Jennifer Fugo is certified Health Coach who works with busy individuals seeking balanced dietary changes. Named by PhiladelphiaMagazine as a “Gluten-Free Guru,” Jennifer knows firsthand the challenges of overcoming food sensitivities as she is intolerant of gluten, casein and eggs. For more information on how to read food labels as well as recipes and events, visit www.evolvingwell.com.
Researchers at The Celiac Center at Beth Israel Deaconess Medical Center (BIDMC) are looking for people 18 or older who have biopsy-proven celiac disease that have experienced celiac-related symptoms within the last 3 months.
Participants will take a week-long series of surveys, taking about 10 minutes per day. Participants will be compensated for their time.
If you’d like to learn more about the BIDMC study, please contact:
By Dan Kohler of Renegade Kitchen
This white bean dip can be built a thousand different ways depending on what herbs you have in your fridge or garden. Once you roast the garlic, it’s a quick blast in the food processor and the dip is done. Looking for some inspiration on your next sandwich? Spread some of this on your favorite gluten free bread and you’ll never turn back. Once you master roasting garlic (an admittedly easy party trick) you’ll start throwing it in everything. Scrambled eggs, pasta, salads, the uses are endless. Thanks to our sponsor Crunchmaster for making gluten-free crackers that are perfect for entertaining!
Yield: ~1 Pint
Prep. Time: 40 minutes
Lest you think Hummus is the only dip to emerge from the Middle East, I present you with this:
Muhammara.(Say it with me.)
Tired of serving hummus every time you host? Muhammara is a dip made from roasted red peppers and walnuts. It’s creamy, sweet and spicy, and a gorgeous splash of red on your counter. Don’t bother buying jarred roasted peppers; making them at home is good, cheap fun. Special thanks to our sponsor Crunchmaster for making a gluten-free cracker that can stand up to this dip.
Yield: ~1 pint
Prep. Time: 15 minutes
Yield: 2 roasted red bell peppers
Total Time: 15-20 minutes
Eggplant is strange. It’s the odd uncle of the vegetable kingdom. See it at a dinner party and you’re likely to avoid it out of fear of the unknown. And you might be right to do so. When prepared poorly, eggplant is little more than a bland watery sponge. But sometimes you end up in a conversation with that weird uncle and find out he’s the most fascinating man in the room. That, my dear friends, is the story of the misunderstood eggplant.
I hope with this recipe to demystify the vegetable for you, however slightly. When roasted and bathed in tomatoes, basil and caramelized onions, eggplant makes a perfect casserole. Delicate without being watery, hearty without being heavy, it’s a wonderful side dish and filling entree. Serve it hot or at room temperature, it’s fantastic for entertaining. Eggplant, you are indeed a most fascinating uncle of vegetation.
Special thanks to our sponsor, Crunchmaster, for providing the inspiration and supplies for our crisp casserole topping. It’s a splendid way to finish this dish!
Yield: 1 8×8 dish
Prep. Time: 1 hour (mostly caramelizing onions)
*Watch more cooking videos starring Dan Kohler.
By NFCA staff
Knowledge of gluten-free food usually begins at diagnosis. Our ears perk up in a way they didn’t before, and we catch news that used to fly under the radar.
But what about all the things that happened before we started paying attention? When was the gluten-free diet introduced as a medical treatment? What did people eat before then? And are “ancient grains” really that ancient?
These are all points on NFCA’s “GREAT Moments in Gluten-Free History ,” an interactive timeline that highlights the landmark moments that got us where we are today.
Scroll through the timeline, then share it with family and friends. It’s another step in promoting awareness!
You can never have enough tips. Now, you can share them with family and friends. NFCA has added new items to our Printable Guides section, and many of them are good tools to use when talking to your loved ones about celiac disease or the gluten-free lifestyle. Check them out:
These new publications and other print-outs can be found in the Printable Guides section of beyondceliac.org: https://www.beyondceliac.org/Resources/Printable-Guides/373/
Alice will chair a session titled “Living with Coelic Disease.” As chair, she will introduce speakers and facilitate discussions after each lecture. NFCA is proud to represent the U.S. celiac and gluten-free community at this important event.
To learn more about ICDS, see the event listing.
Each month, “Pleased to Tweet You” highlights an individual who chatted with @CeliacAwareness on Twitter. If you’d like to be featured, follow @CeliacAwareness and say hello!
Name: Caroline Karasik
1. How long have you been gluten-free?
Not even one full year! I went gluten-free on September 26, 2010, and haven’t looked back. I can truly say my celiac disease diagnosis has been one of the most life-changing events that has ever happened to me.
2. What do you like to tweet about?
My gluten-free lifestyle is just one of the aspects that makes up the healthy life that I work to maintain on a daily basis. Therefore, my tweets include not only gluten-free information (galore!), but fitness tips from some of my favorite experts, news about a particular health issue, and very often the exchange of information between me and another Twitter user who shares a similar interest. Twitter has been one of the top ways for me to spread not only my own message, but also that of others who are working toward the same cause.
4. Why do you follow NFCA (@CeliacAwareness)?
I think of NFCA (@CeliacAwareness) as a fellow team member. In other words, @CeliacAwareness provides a message to its followers that I am certain is aiming to inform others about celiac disease (and gluten intolerance), which is something I hope I do within my own Twitter stream. @CeliacAwareness is not only providing daily information and tips in regard to celiac disease, but it is generating conversation by asking questions that cause people to think or share their own anecdotal information. It has been a hugely helpful resource on a personal level, and I can only imagine it does the same for its other followers.
5. What’s your favorite gluten-free dish?
Ah, that is so tough! Since going gluten-free, I have learned so many things about cooking, baking and dining out. To be honest, my husband and I eat out very rarely. We enjoy cooking at home, and we also maintain a budget that only allows for so much wiggle room. In addition, I’ve found that when someone is dealing with a food allergy or intolerance, there really is nothing that beats eating at home.
So, short story long — It’s tough to pick just one dish, so I will name a few (starting with dessert because it’s my absolute favorite): Grasshopper Brownies, Mushroom Risotto, and a Wild Wood SprouTofu burger between two slices Rudi’s Gluten-Free bread.
6. What’s one thing you can do now that you couldn’t do before going gluten-free?
I am going to sound like an 80-year-old woman, but if I had a dollar for every time I went to bed sick or had to leave an event because of stomach pain, then I would have a nicely padded wallet right about now! One of the greatest things I can now enjoy is a meal … and sit … and relax … and chat without running to the bathroom or leaving early so I can go home to lie on my bed, doubled over in pain. I feel lucky to have discovered my celiac disease and only wish I would have sooner! I only hope I can help more people feel as good as I do since going gluten-free.
7. In 140 characters or less, why should others join the gluten-free community on Twitter?
The Twitter GF community is unmatched. The info & support from various resources and tweets can make a GF diagnosis feel like a blessing!
*Follow NFCA on Twitter @CeliacAwareness*
Each month, “Face It” highlights a popular post from NFCA’s Facebook page, including a sampling of the responses. “Like” NFCA on Facebook and join the conversation today!
Alicia Weber Williams: Relax and enjoy whatever is going on after eating a meal instead of being miserable and sick.
Diana Swiatek: Live my life again! I can go out and not always feel like I need to lie down and rest, and I can sleep through the night without pain.
Angela Carlson: My daughter can feed herself. Diagnosed and went gluten-free when she was 2 1/2. Bone/joint pain so bad some days she wouldn’t eat unless I fed her because it hurt so badly. She is 10 now and neither one of us misses that!
Jessica Dukin Murray: Follow through with all plans. Not having to cancel at the last minute every time because I wasn’t feeling well!
Christy O’Sullivan: I wake up energized instead of feeling like the life has been sucked out of me. I think with clarity. I move freely without the pain. I think about goals and a future without hesitation.
Karyn English: I’m doing a 5k on Sunday! Going gluten-free really improved my asthma…I wasn’t able to run at ALL since grade school.
Ann Jackson: Wear a sleeveless shirt!
Brenda Lenarz: Have better Whoopie because I am not in a brain fog.
Mary Jo Lundin : Enjoy and be part of after dinner conversations instead of running off to, well, you know…
Andrea Teague: Live 🙂
Ruth Ann Mitchell-Pearsons : I can say “ditto” to every statement above. Plus, I was able for the first time in my life, at almost age 50 (diagnosed 1 1/2 years ago) to bike 50 miles in the Tour de Cure and raise $1,600 for the fight against diabetes. It is so AWESOME to be able to help others after being so very sick for so very long.
Samantha Wallace-Mitra: I have enough energy to look after my kids. I no longer obsess about when I can take a nap or go to sleep. I no longer experience widespread bone and joint pain. I’m no longer fatigued and, best of all, I can think clearly. No more brain fog!
Tess McEnulty: I’m getting choked up (in a good way) reading all of the comments. Cheers to everyone’s health!
Quinn Stuart: Eating a banana split for the first time since I was 12 and not getting sick. Being able to relive that part of my childhood was priceless.
*Join the daily discussions on NFCA’s Facebook Page*