November-December 2012 Volume 22 Number 7
INSIDE
From FAAN to FARE: A New Chapter Begins
2 Message from the CEO
3 Update from Academy President
4 Nanny Jo’s Perspective Holiday Tips
5 This is Why I Walk FAAN Walk for Food Allergy in 2012: A Great Success
6 Ingredient Notices Epinephrine Auto-injector News
7 Allergy-Free Recipes
8 A Member Asks: Setting up a Safe Kitchen FAAN Debuts Anaphylaxis Awareness Videos
10 Research Update
11 Advocacy Update
12 Holiday Gift Ideas
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n Nov. 12, we proudly announced the completion of the merger between FAAN and the Food Allergy Initiative (FAI) and the new name for the merged organization dedicated to food allergy research and education— FARE. Building on the significant accomplishments of FAAN and FAI over the past two decades, FARE will be dedicated to ensuring the safety and inclusion of individuals with food allergies while relentlessly seeking a cure. The completion of the merger comes at a crucial time in the national discourse around food allergies, and FARE is committed to serving the food allergy community in all of its work. This will include funding world-class research that advances treatment and understanding; providing evidence-based education and resources; undertaking advocacy at all levels of government; and, increasing awareness of food allergies as a serious public health issue. We will be introducing the new FARE logo in early 2013, so for the remainder of 2012, you can still expect to see FAAN-branded events take place as planned. Beginning next year, you will start to see some exciting new changes as we grow FARE’s presence across the country and online. By early 2013, FARE will open new regional offices covering the Northeast, Midwest, Southeast, Southwest and West. Our new regional directors will focus on
our fundraising and education efforts. FARE’s headquarters will also move from Fairfax, Va., to nearby Tysons Corner, in addition to existing offices in New York City and Chicago. The FAAN Walk for Food Allergy will take on a new name in 2013 and will be expanded from 45 walks to more than 60 walks nationwide. We look forward to working with FAAN and FAI’s committed volunteers across the country to expand the Walk program and other fundraising events that will support research to advance a cure and educational efforts in our nation’s schools, restaurants and other venues. FARE’s Walk events will continue to be coordinated through www.foodallergywalk.org. We will launch the new FARE website in early 2013 at www.foodallergy.org. The redesigned site will continue to bring you the best and most current science-based New Chapter continued on page 9
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Message from the CEO By John L. Lehr
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Food Allergy News The Food Allergy & Anaphylaxis Network, Publisher Veronica Brown, Editor Nancy Gregory, Managing Editor Hugh A. Sampson, M.D., Medical Editor Sally Noone, R.N., M.S., Medical Editor John L. Lehr, CEO Chris Fanning, Chief Financial Officer Julianne M. Puzzo, Senior V.P. of Development Veronica Brown, V.P. of Communications Eleanor Garrow, V.P. of Education & Outreach Gina Clowes, V.P. of Member Relations
Operations Nancy Ammann, DeLois Blevins, Veronica Braun, Debbie Copan, Cindy Durant, Julie Forrest, Kendal Rauh, Beverly Ryan, Rachel Wissinger
Medical Advisory Board S. Allan Bock, M.D., Boulder, Colo. A. Wesley Burks, M.D., Chapel Hill, N.C. Glenn T. Furuta, M.D., Aurora, Colo. John M. James, M.D., Fort Collins, Colo. Stacie Jones, M.D., Little Rock, Ark. Todd Mahr, M.D., LaCrosse, Wis. Hugh A. Sampson, M.D., New York Wayne G. Shreffler, M.D., Ph.D., Boston, MA Scott H. Sicherer, M.D., New York F. Estelle R. Simons, M.D., Winnipeg, Canada Steve Taylor, Ph.D., Lincoln, Neb. Robert A. Wood, M.D., Baltimore, Md. Robert S. Zeiger, M.D., Ph.D., San Diego, Calif. ©2012. The material in Food Allergy News is not intended to take the place of your doctor. Food Allergy News or the Food Allergy & Anaphylaxis Network will not be held responsible for any action taken by readers as a result of their interpretation of an article from this newsletter. If you have any questions or concerns, ask your physician. Never change your child’s diet without the advice or help of a physician and registered dietitian. Food Allergy News is published by the Food Allergy & Anaphylaxis Network, Inc., 11781 Lee Jackson Hwy., Suite 160, Fairfax, VA 22033-3309. ISSN #1075-4318. Periodicals postage rate paid at Fairfax, Va. POSTMASTER: Send address changes to Food Allergy News, 11781 Lee Jackson Hwy., Suite 160, Fairfax, VA 22033-3309. Our office is open Mon.-Thurs. 9:00 a.m. to 5:00 p.m., and Fri. 9:00 a.m. to 4:30 p.m. If you have any questions, please call 703-691-3179. This material may not be duplicated without the expressed written permission of the publisher.
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t’s the beginning of a new era for the food allergy community in the United States and around the world. As you read in our cover story, we proudly announced the creation of FARE this fall, the result of an historic merger between FAAN and the Food Allergy Initiative (FAI). As the CEO of FARE, I am pleased to have an opportunity to welcome you into our new organization and thank you for your ongoing commitment to our cause. The merger of FAAN and FAI is a tremendous win for the food allergy community. FAI has long been the leading private source of funding for food allergy in the world, and FAAN has been the trusted source of educational resources and information about food allergies for two decades. Combining the strengths of these organizations not only creates a single, powerful voice for the community, but also will greatly accelerate research, education, advocacy and awareness on food allergies. For the past few months, the FAAN and FAI teams have been collaborating as we prepared for our merger to be finalized. With the merger now complete and our new name unveiled, we have hit the ground running. We’re establishing a presence in various regions throughout the U.S. and we’re increasing the number of Walk for Food Allergy events across the country. Along the way, you’ll see new logos, new events, and updated educational resources. You’ll also see us taking our awareness efforts to the next level, with a focus on raising awareness of food allergies as a serious and growing public health issue—one
Food Allergy News
for which there currently is no cure. Approximately 15 million people in the U.S., including 5.9 million children, have a food allergy. Our focus is to ensure the safety and inclusion of these individuals while relentlessly seeking a cure. With your support, we are growing our funding of world-class research that advances not only treatment, but understanding of food allergy. As we embark on this new chapter, I want to offer my profound appreciation to Maria Acebal, who has devoted herself to FAAN for the past three years, most recently as its CEO. You need only talk to Maria for a few seconds to be struck by her passion and commitment. I know you will join me in thanking Maria for the tremendous work she has done for FAAN, including her creation of the popular Safe@School resource—which was adapted into the AllergyReady.com online tool—to her work on Capitol Hill to advocate for stock epinephrine in our schools, to her training on food allergy safety of countless individuals. We are so pleased that Maria will remain a vital member of the FARE family as a senior adviser and spokesperson for FARE. You’ll soon be hearing about how you can become a member of FARE. We look forward to your continued participation and support as we continue FAAN and FAI’s legacy as the world’s leading food allergy organization. Wishing you and your family a happy and safe holiday season,
Awareness
Advocacy
Education
Research
An Update From Academy President Wesley Burks, M.D.
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esley Burks, M.D., is currently president of the American Academy of Allergy, Asthma & Immunology. Burks serves as a member of FAAN’s Medical Advisory Board and is the chair of the University of North Carolina’s Department of Pediatrics and Physician-in-Chief of the North Carolina Children’s Hospital. He recently spoke with Gina Clowes, FAAN’s Vice President of Member Relations about the latest in food allergy research.
Would you give us an update on food allergy treatment? Yes, today we are much, much closer than we were 10 years ago. And we’ll go much further in the next few years. In the next five years, we should have the first generation of treatment available. It will change how we take care of kids with food allergies.
What have you learned in the last few years that you did not know? We know we can use different types of immunotherapy to achieve a desensitization effect: oral immunotherapy (OIT, which is tiny amounts of food protein measured in grams), sublingual immunotherapy (SLIT, which involve drops placed under the tongue with food protein measured in milligrams), and the “patch,” which delivers food protein through the skin. We know that the threshold for these children will go up during treatment and that we can achieve a desensitization effect in most patients. What we haven’t shown is the long-term tolerance after treatment. We have a few studies, but no blinded studies and not enough data right now to say more.
Is there a difference in treatment depending on what food is used? For example, is it more difficult or do you see more reactions with milk vs. egg, wheat or peanut? Not with the different foods. Really there are only minor differences. We do see differences in reactions and symptoms with different dosing schedules. When the doses are escalated too quickly, it can cause more symptoms.
What differences to do you see in treatment using OIT vs. SLIT? About 10 percent of the kids in the OIT studies will need to stop the treatment, mostly due to gastrointestinal symptoms. The doses with OIT are measured in grams and are much larger than what is used in SLIT. However the desensitization is higher in OIT than in SLIT. With SLIT, the doses are measured in milligrams and it is uncommon to have anyone needing to stop. The reactions tend to be milder— very minor swelling or skin symptoms. But even with SLIT, you have raised the threshold to above 100 mgs of protein in most studies. So there may be protection from an accidental reaction.
How long would it take to get that effect with SLIT? The desensitization effect with SLIT is lower in that the threshold doesn’t increase as much as with OIT. The effect of SLIT to raise the threshold, though, occurs within six months of beginning treatment.
Could someone who could not tolerate OIT try SLIT? Yes, theoretically they could. We have not studied that though.
What have you learned in the past few years that has surprised you? Immunologically, we are seeing that OIT and SLIT have a similar effect on the immune system as the traditional allergy injections.
Do you believe that immunotherapy is the most promising treatment for food allergies? I can’t say that because there are other treatments that are also promising such as the Chinese herbs (FAHF-2), treatments with Omalizumab [Xolair] and more. Certainly the allergy-specific studies are very promising though.
What needs to happen so that treatment with OIT and SLIT becomes available? We need to go through the normal FDA paradigm and we’re in Phase 2 right now. For Phase 3, we need larger placebo-controlled trials. We encourage families to be open to participating in these trials. To learn more about food allergy research, please visit www.foodallergy.org. To participate in clinical research, visit www.clinicaltrials.gov. u Food Allergy News
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Nanny Jo’s Perspective: When Family Members Don’t Get It
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e are delighted to feature Jo Frost, best known for her television show “Supernanny,” in this special holidaythemed question-and-answer column. Jo, who is allergic to peanuts, tree nuts and shellfish, has recently spoken publicly about her food allergies and is eager to raise awareness about food allergies as a serious public health issue. She took the time to provide some advice about an issue many food allergy families grapple with during the holidays—how to handle family get-togethers, where food is a focus, when other family members just don’t get it.
Q. How do I handle skeptical relatives who don’t understand the severity of food allergies? A. It is not a matter of being skeptical, it is a matter of being educated. This medical condition is not a myth, it is a fact. The more you can educate your family, through literature and books, videos and trusted online resources, the more you end up changing a person’s belief system. A lack of empathy has no room in an environment of a person who has an allergic condition. The severity of this condition can be fatal! Unfortunately you cannot change the way someone chooses to behave, you can only choose to change how you respond to their apathetic behavior. This is done through enlightening them with more education, and then we hope that this will change how they see things.
Q. How do I get family members to cooperate and accommodate life-threatening food allergies when it comes to family gatherings such as dinners? A. I think it really is quite simple. The family needs to recognize that if there is to be a joint meal shared by family members, then they must
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be cautious with what they cook, or they can cook something separate for the allergic person. It is important for the person who is preparing the meal to let everybody know what is in the food. Alternatively, you can give them safe recipes or offer to cook the safe meal and bring it over. The final alternative is to kindly let them know that you would be regretful to miss one of these family occasions, as this is a life-threatening situation.
Q. I have been very tactful in the past with relatives who tease my son about his food allergies, but they continue to make light of it. Please give me some advice on how to make it stop. A. It stops when you make it very clear to your family members that you will have zero tolerance to the verbal bullying and teasing of your child who has an allergy. It is incredibly important to let them know how it makes you and your child feel, and that with this continued behavior, it only threatens and damages the relationship you have with them moving forward. It is not okay by any means or measure, and they need to know that it is a form of bullying in a different context. What you do expect from them is support and encouragement. Put a boundary in place and let them know that if the behavior continues, it will force you to decide whether to be in their company and presence at all.
Q. How can I give my kids coping skills and teach them to speak up for themselves when it comes to their food allergies? A. I believe you help your children cope with their allergies every day when you teach them the importance of being able to present, without apology, the allergies they have to whomever is necessary and when
Food Allergy News
need be. I do feel to some extent that adults and children can be made to feel that they need to apologize for such inconvenience; which doesn’t help the child with the allergy to be more forthcoming with their medical condition. Give your kids the facts. With respect to food, teach them to give other people the facts. As a rule of thumb, it should be the first information you exchange in a restaurant, at someone’s house, or simply on a play date. Teach them to always feel okay with asking whether food is safe for them to eat. Teach them to have the facts before they eat (if they’re not sure, then they shouldn’t eat the food). Teach them to respectfully say thank you, but no thank you. As they get older, teach them to read ingredient labels, and to be observant. All of the above is taught through repetition and practice. Role-play with your kids so that you can set different scenarios at hand, and in real life they will be practiced to do the same. Jo’s new television show focusing on families will soon be premiering on TLC. u
Holiday Tip “We started planning for our Christmas visit at the end of August. Prior to our arrival at my in-laws, we send a package of safe nonperishable food, including pasta, cake mix, cookie mix, nonstick cooking spray, etc. for us to have for our daughter when we arrive. We also include a special Christmas tree cake pan to bake a cake when we arrive. This cake has become a favorite of the holidays with the whole family. We find sending the food box a lot easier than going from store to store or having my in-laws search for things we need.”
~Lisa G.
Awareness
This Is Why I Walk
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ast year, Amy Gruber, whose son Jonas has multiple food allergies, was the top FAAN Walk for Food Allergy fundraiser in the U.S. This year, it looks like she may do it again, singlehandedly raising more than $25,000 for the Walk in Philadelphia. We asked Amy to share a little bit about her start with the Walk program and the keys to successful fundraising. Honestly, I only started doing the allergy walk because another mom introduced me to it. Our sons became friends and they both have food allergies, so she asked me to do it with her. It never really occurred to me that there even WAS an allergy walk, despite the fact that I’d often utilized the FAAN website since my son’s diagnosis. I hadn’t thought about the need for food allergy advocacy until he started school. Only then did it become apparent that advocacy and education were so necessary. Now, I do the walk because I think it’s important for my son. I want him to meet other people with allergies. I want him to know he’s not alone. And I want him to know that we’re doing
Advocacy
Education
Research
something about it. Maybe the money we raise won’t help him directly, but it will help someone with a food allergy. On fundraising… I think the most important thing is to write something meaningful and interesting on your fundraising page. And I know that’s not easy, but I feel like I owe it to the people whom I’m asking to donate to give them something funny and poignant and informative to read. Also, I have a lot of Twitter followers, so I link to my page on there. I’m in an unusual situation in that my husband runs a fairly popular technology blog, so he always links to my walk page. He has a lot of friends and readers who have been very generous every year. And although we get a lot of big donations, we raise most of the money on just the sheer volume of small donations. I think that’s important to emphasize. Those $10 donations add up! Highlights of the Walk I love the walk day and spending time meeting other kids and parents who are dealing with food allergies. I love the way it makes the allergic kids feel special. But something that really stands out to me is the feedback I get from people who have read my walk page and donated. So many people aren’t aware how serious food allergies can be. For many, it’s not just an upset stomach or a few hives. It’s a serious, life-threatening condition. Lots of people don’t know that. It makes me so happy when someone tells me I’ve enlightened them a bit. Hopefully, it cuts down on the sighs and eye-rolling that a lot of food allergy parents experience.
Amy, we salute you and your family, and thank you for your amazing efforts and support. u
The FAAN Walk for Food Allergy: A Great Success for 2012 With nearly $2.4 million raised for food allergy research and education programs, the FAAN Walk for Food Allergy was a big success. Your fundraising efforts enable us to fund research studies to advance a cure for food allergy and continue to develop educational resources for the newly diagnosed as well as schools, restaurants, the food industry and others. We’d like to thank all of our supporters and our Walk for Food Allergy sponsors for their commitment to our cause.
National Presenting Sponsor
National Media Sponsors
National Platinum Sponsors Multi-Site Sponsors National Gold Sponsors
National Silver Sponsor
WOWBUTTER Gimbal’s Fine Candies Skeeter Snacks TruSweets Home Free Wegmans Barney Butter Cherrybrook Kitchen Dr. Lucy’s Ian’s Natural Foods Divvies Happy Baby Food Galaxy Foods Allergic Traveler Pirate Brands
We are looking forward to another incredible season in 2013 and we hope to see you at one of our walks! Food Allergy News
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Ingredient Notice Nestlé USA Nestlé USA would like you to know that they have added the precautionary statement “may contain wheat” to labels of Nestea® 100% Tea Unsweetened Iced Tea Mix and Nestea® 100% Tea Unsweetened Decaffeinated Iced Tea Mix. This new packaging entered the market beginning in late September, early October 2012. Consumers with questions can call Nestlé USA at 1-800-637-8535. Kellogg Company Kellogg Company would like you to know that Kellogg’s FiberPlus® Berry Yogurt Crunch cereal will now include peanut, almond, pecan and walnut ingredients, and may contain other tree nuts along with wheat, milk and soy ingredients due to a product production change. Peanut, almond, pecan and walnut ingredients have been added to the ingredient listing, and peanut, almond, pecan and walnut ingredients and may contain other tree nuts to the allergy contains statement. The new recipe and packaging entered the market beginning in mid-August 2012. Consumers with questions can call Kellogg Company at 1-800-962-1413 or visit www.kelloggs.com. The Pringles Manufacturing Company The Pringles Manufacturing Company would like to inform its consumers that Pringles Light (Fat Free) Potato Crisps (Original, Sour Cream and Onion, and BBQ flavors) have been reformulated and will contain wheat starch. These products began to show up on grocery shelves starting in August 2012. Wheat starch will appear in the ingredient list and wheat is included in the allergen statement for products that contain this ingredient. As with any product, we encourage consumers with food allergies to read the product ingredient list and any allergy warning statement before consuming the product.
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Flowers Foods Flowers Foods would like you to know that it is adding the following allergen advisory statement, “Manufactured on shared equipment that also processes products containing tree nuts and peanuts” to the packaging of snack cakes and pastries that are made at a bakery that is now producing items containing peanut butter. These products are sold under the following Flowers brands: Blue Bird, Broad Street Bakery, Derst, Mountain Farms, Mrs. Freshley’s, and Our Special Touch. This is a voluntary advisory statement. Packaging with the updated statement began appearing on store shelves in late September 2012. Flowers Foods strongly recommends you read all product labels for the most accurate allergen information. For more information, please contact Flowers Consumer Relations Center at (866) 245-8921. PowerBar/Nestlé Nutrition PowerBar/Nestlé Nutrition would like you to know that all retail packaging for PowerBar products is being redesigned. As part of the redesign, we have also updated our ingredient listings and changed the format of the allergen declaration on our labels. Beginning with the redesign and going forward, PowerBar will no longer include a “Contains:” allergen statement on our labels. Allergens will be declared in the list of ingredients and, as applicable, in a crosscontact statement, e.g., “manufactured on equipment that also processes…” In addition, the following PowerBar Recovery Bars will now declare wheat on the label: • PowerBar Recovery Bar—Cookies n Cream • PowerBar Recovery Bar—Chocolate Crisp With the exception of the above two bar products, the allergen profile of PowerBar products has not changed, only the way allergens are declared on the label. The redesigned product packaging entered the market in October 2012. Nestlé Nutrition encourages its consumers to read the product label for all allergen information. For more information, contact PowerBar Service Center at (800) 587-6937.
Food Allergy News
Epinephrine in the News Mylan Provides Free Epinephrine AutoInjectors for Schools Mylan Specialty announced a new program that will enable qualified schools to receive up to four free epinephrine auto-injectors. As FAAN CEO John Lehr said in a news release about the EpiPen4Schools™ program, “It is critically important for schools to have epinephrine auto-injectors on hand to treat anaphylaxis should it occur.” In addition, Mylan also offers discounted auto-injectors for schools. For more information, visit www.epipen4schools.com.
Auvi-Q: A New Epinephrine AutoInjector A new epinephrine auto-injector has been given FDA approval and is expected to be available by prescription in pharmacies this winter. The Auvi-Q features audio and visual cues to guide users through the process of administering epinephrine during a reaction and is the size and shape of a credit card and has the thickness of a smartphone. For more information, visit www.auvi-q.com. u
Awareness | Advocacy | Education | Research
Allergy-Free Recipes
We’re delighted to bring you some old favorites from our holiday cookbook, as well as what is sure to be a new favorite, from FAAN Celebrity Ambassador Who Cares Cybele Pascal. Happy holidays
Gingerbread Coffee Cake M, E, P, N
u ¼
cup sugar u ½ cup water u ¼ cup light molasses u ¼ cup milk-free margarine, melted; plus 1 T. for topping u 2 T. honey u 1 ½ T. water, 1 ½ T. oil, 1 tsp. baking powder; mixed together u 1 cup flour u 1 tsp. ground ginger plus ¼ tsp. for topping u 1 tsp. ground cinnamon plus ½ tsp. for topping u ¾ tsp. baking soda u ¼ tsp. salt u ¼ tsp. ground cloves u 3 T. dark brown sugar (for topping) Preheat oven to 350 degrees. Grease 8x8-inch baking pan. Set aside. In large bowl, combine sugar; water; molasses; margarine; honey; and water, oil, and baking powder mixture. Stir until smooth. Add remaining ingredients. Mix well. Pour batter into prepared pan. Bake 25 minutes, or until toothpick inserted in center comes out clean. While warm, top with Gingerbread Topping. To make gingerbread topping, combine 3 T. dark brown sugar, ¼ tsp. ground ginger, ½ tsp. ground cinnamon and 1 T. melted milk-free margarine in a small bowl and stir until well blended.
Tinsel Treat Cookies M, E, P, N
u 1
¼ cups flour u 3⁄8 tsp. salt u ¼ tsp. baking soda u ¼ cup milk-free margarine, softened u ¼ cup shortening u ½ cup sugar u ½ tsp. vanilla extract u 1 ½ T. water, 1 ½ T. oil, 1 tsp. baking powder; mixed together u 1 T. water u Coarse red sugar Preheat oven to 400 degrees. Grease cookie sheets or line them with parchment paper. Set aside. In medium bowl, sift together flour, salt, and baking soda. Set aside. In large bowl, using electric beater, cream together margarine and shortening. Gradually add sugar and continue beating until light and fluffy. Beat in vanilla extract; and water, oil, and baking powder mixture. Add flour mixture; beat until smooth. Add water and mix well. Drop dough by teaspoonfuls about 3 inches apart onto prepared cookie sheets. Wet bottom of drinking glass and press into coarse sugar. Use glass to flatten each cookie. Bake 12 minutes, or until edges are lightly browned.
Key to Symbols: M – Milk-free W – Wheat-free E – Egg-free P – Peanut-free
S – Soy-free N – Nut-free
Note: Recipes calling for margarine will be coded as containing soy, although milk- and soy-free margarine is available at some grocers.
Chicken and Sausage Paella M, E, W, P, S, N u 1
cup long grain basmati rice cups low-sodium chicken broth u 1 lb. chicken tenders, cut crosswise into 1-inch pieces u 3/8 tsp. smoked Spanish paprika u Salt and freshly ground pepper u 3T. olive oil u 1 cup chopped yellow onion u 8 oz. chorizo, andouille, linguica, or kielbasa, cut into ¼-inch-thick rounds u 1 red bell pepper, diced u 3 cloves garlic, minced or pressed u ¼ tsp. saffron, crushed u ½ tsp. dried oregano u 1 (14.5-oz.) can diced tomatoes u ¾ cup frozen peas u 1T. chopped fresh parsley, plus more for garnish u 2½
Combine the rice with 1½ cups of the chicken broth in a microwave-safe container. Cover and microwave for 10 minutes. Meanwhile, sprinkle the chicken tenders with the paprika and some salt and pepper. Heat 2 tablespoons of the olive oil in a large heavy pan or Dutch oven over medium-high heat until starting to shimmer. Add the chicken and cook for 2 minutes per side, until lightly browned. Transfer to a plate and set aside. Add the remaining 1 tablespoon olive oil to the pan. Add the onion and sausage and cook for 5 minutes, stirring often. Add the bell pepper, garlic, saffron, oregano, and 1/4 teaspoon of salt and cook, stirring, for 2 minutes more. Add the remaining 1 cup chicken broth, bring to a boil, and deglaze the pan by scraping up any browned bits along the bottom, 1 minute or so. Stir in the tomatoes, partly cooked rice, and chicken, bring to a simmer, reduce the heat to medium, and cook, loosely covered, for 8 minutes more or until the liquid is absorbed. Add the peas and heat through for 2 minutes. Add salt and pepper to taste, toss with the parsley, and serve hot, sprinkled with a little more parsley. Reprinted with permission from Allergy-Free and Easy Cooking: 30-Minute Meals Without Gluten, Wheat, Dairy, Eggs, Soy, Peanuts, Tree Nuts, Fish, Shellfish, and Sesame by Cybele Pascal, copyright © 2012. Published by Ten Speed Press, an imprint of the Crown Publishing Group. Photo credit: Chugrad McAndrews. Cybele’s new book will be available Dec. 4, 2012.
Food Allergy News
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For the Newly Diagnosed: A Member Asks
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uestion: My 1 yearold daughter has been diagnosed with multiple food allergies. I also have a 3 year-old. I’m overwhelmed with how to keep my kitchen safe and cook for my family. Where do I start? Gina Clowes, Vice President of Member Relations, answers: First, let me assure you that with nearly 6 million children with food allergies in the U.S., you are not alone in this challenging task. My second child also has multiple food allergies and my children’s pediatrician felt it was important that my older son eat plenty of milk, wheat and egg, so we did not remove these foods from our home. Kitchen safety can be divided into cooking, storing and serving, and I can share a few tips for each area. Cooking—Most meals that I prepare are basic dishes that are safe for my son (who is allergic to milk, wheat, egg, peanut, nuts, sesame and more) but other family members can add to them. For example, start with beef or turkey tacos. Family members can add soy or dairy cheese, and wheat or corn tortillas. We also have family pizza night. We use regular and gluten-free crusts, a variety of toppings, and even different baking sheets. It’s a little more work for mom but none of this has stopped us from enjoying this occasion! Coming from a big Italian family of cooks, “tasting” was always a big part of the kitchen experience. With food allergies, you need to be especially careful. When you sample the food, use
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the spoon only once. Next, the tradition of dunking a piece of bread into the sauce is also unsafe due to milk, wheat, soy, sesame or other ingredients. Storing—When you have a child with multiple food allergies, prepared meals may be out of the question. You can make your own prepared meals by cooking large batches of “safe” foods (mock mac & cheese, chili and rice, beef stew) and freezing them in Pyrex bowls. When you’re ready to use, simply remove the lid, cover with waxed paper and microwave until hot. These are also great to take along to parties and other occasions where “safe” food may not be available for your child. Safe Shelf—Before my son could read labels, I wanted him to be able to help himself to some safe cereals and snacks. So I moved his “Daniel-safe” snacks to one of the cupboards set away from the others. He knew that he could grab anything from these shelves and it would be safe for him. As an additional layer of protection, I used green stickers to show that I had read the ingredients and deemed the product “safe” for him. Medicine cabinet—Most food allergic reactions happen after eating, so it makes sense to keep your epinephrine auto-injector and liquid antihistamine in the kitchen along with your child’s Food Allergy Action Plan. We’ve always kept my son’s plan above his “safe” foods. It makes it much easier when handing off child-care duties to a baby sitter or relative. Serving—When my sons were young, we used a color-coded system. I let my sons each pick a color. My allergic son picked
Food Allergy News
green, so his plates, bowls and cups were always green. This system extended upstairs where even his bathroom cup and toothbrush were green. This saved us a lot of confusion and anguish over the years at home and when traveling. My kids claimed their spots at the kitchen table years ago, and they continue to sit at these same seats. Since I still have to cook separate foods for my allergic son, this makes it easy to make sure that only his “safe” foods are served to him. It may seem overwhelming, but every seasoned allergy mom will tell you that you do adjust to the “new normal” of life with food allergies. Focus on what you can have: healthy foods, home-cooked meals together and love. u Gina Clowes is the Vice President of Member Relations at FAAN. Her advice and parenting tips have appeared in numerous print, radio and television features including CNN, People, and ABC World News Tonight. Gina is the author of “One of the Gang: Nurturing the Souls of Children with Food Allergies” and writes a regular column, "The Parenting Coach," for Allergic Living magazine.
Holiday Tip “We celebrate Hanukah in our house, but year after year the crazy high prices for ordering/shipping specialty nut-free Hanukah gelt for my children was adding up. Plus, after a not-so-good experience with dark chocolate from a nut-free (but not milk/egg-free) vendor, I started to think twice about ordering from companies that also make and sell milk chocolate. What I did instead was order chocolate coin molds online. We melted nut- and milk-free chocolate chips in the microwave and then poured the chocolate into the molds. You can even decorate the back with safe sprinkles, sugar, etc. while the chocolate is still warm. Best of all? We’ve now come up with our own Hanukah tradition we now look forward to every year.”
~Suzie F.
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FAAN Debuts Anaphylaxis Awareness Videos
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his fall, FAAN launched two PSA-style videos on its website and YouTube channel aimed at raising awareness about anaphylaxis and the need to be prepared. Featuring Kenton Duty and Brian Hom, the videos were produced last May thanks to a partnership with Pfizer. Duty, age 17, is an actor best known for his role on Disney’s “Shake It Up.” As a FAAN Celebrity Ambassador Who Cares, Kenton has been raising awareness of food allergies as a serious public health issue and encouraging food-allergic teens like him to be prepared to manage their allergies and avoid reactions. Kenton, who is allergic to cocoa and wheat, was a featured speaker at FAAN’s
past two Teen Summits and has appeared at the FAAN Walk for Food Allergy in Los Angeles. Hom has become known to many in the food allergy community through his role as a passionate advocate for food allergy education. Hom’s son, BJ, died in 2008 during a family vacation in Mexico to celebrate BJ’s 18th birthday and high school graduation. BJ, who was allergic to peanuts, suffered a fatal reaction after eating from the hotel buffet. Hom, who is chair for the FAAN Walk for Food Allergy in California’s Bay Area, has channeled his grief into the cause, and has chosen to speak publicly about his son’s tragic death in the hopes of preventing other fatalities.
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information about food allergies, and advances in research, education and advocacy. The new website will be a one-stop shop for information on food allergies, incorporating the content previously found on our kid, teen and college network sites into the main site. In January, you also will receive information about becoming a member of FARE. FARE membership will include a continued subscription to Food Allergy News, which will move to a quarterly, digital-only format in 2013, as well as a host of new benefits. Be sure to visits the website early next year for all of the details. More than 20 years ago, FAAN founder Anne Muñoz-Furlong created an organization that raised the profile of food allergy and ultimately effected change that is felt in our schools, restaurants, and in the food manufacturing industry.
FAAN made an impact—but it would not have been possible without you. We thank FAAN’s members—those who have supported us since the beginning and those who recently joined us. We hope you will remain FARE members for years to come— because we have so much more to accomplish. Together with our Board of Directors, Medical Advisory Board and Research Advisory Board, we remain committed to serving the food allergy community. We look forward to continuing to work with all of the families that have been with both FAAN and FAI from the beginning, and to welcoming new families into the fold during this exciting time. As always, if you have questions, do not hesitate to call our offices at (800) 929-4040. u
Duty and Hom’s videos differ in style and tone, but both have the same message: stay safe and be prepared. To view the videos, please visit www.youtube.com/faanpal. u
FAAN Funds Phase of Peanut Study We are pleased to announce that FAAN is funding a final phase of a clinical study focusing on the safety and efficacy of oral and sublingual immunotherapy in children with peanut allergy. The study is led by Robert A. Wood, M.D., a professor of pediatrics and international health and director of Pediatric Allergy and Immunology at Johns Hopkins University School of Medicine in Baltimore. Dr. Wood’s team aims to better understand the complexities of the mechanisms of desensitization and long-term tolerance. This final phase of the study will enable Dr. Wood and his team to conduct additional laboratory studies that may help researchers understand which patients will respond to these therapies. FAAN’s Research Grant Program has awarded more than $5 million since 2004 to scientists advancing research in the field of food allergy. u
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Research Update Lower Income and Minority Households More Likely to Have a Child with an Undiagnosed Food Allergy More can be done to properly manage the care of American children with food allergies, especially when it comes to diagnostic testing and recognizing non-visual symptoms of severe allergic reactions, according to a new study funded by the Food Allergy Initiative. “Every child with a food allergy should be diagnosed by a physician, have access to lifesaving medication such as an epinephrine auto-injector and receive confirmation of the disease through diagnostic testing,” said lead author Ruchi Gupta, M.D., an associate professor of pediatrics at Northwestern University Feinberg School of Medicine (Chicago), “Not all children are receiving this kind of care.” The study was published online in the Journal of Allergy and Clinical Immunology. Data in this study is from a randomized online survey of U.S. households with children with symptoms consistent with food allergy. Key findings include: l 70 percent report receiving a physician’s diagnosis for their child’s food allergy. l Lower income and minority households were more likely to have a child with an undiagnosed food allergy. l Of the physician-diagnosed children, 32 percent did not receive diagnostic testing—such as a blood, skin or oral food challenge test. l A skin test was the most popular diagnostic test (46 percent); blood test was second (39 percent). l Only 1 in 5 reported that their child received an oral food
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challenge test—the gold standard of food allergy diagnoses. Here are key findings on the kind of reactions children had to the top nine food allergies (egg, finfish, milk, peanut, sesame, shellfish, soy, tree nut and wheat): l Cutaneous symptoms, such as hives, puffy eyes or lips, and eczema occurred in 80 percent of food-induced anaphylactic reactions. l During severe, life-threatening reactions, hives only occurred in 40 percent of the cases and puffy eyes or lips in 34 percent.
Eating Baked Milk Accelerates Resolution of Milk Allergy A new study shows that children who are able to eat baked milk products, such as muffins and cookies, outgrow their milk allergy faster than patients who practice strict avoidance of all milk products. The results of the study, which was conducted by researchers at New York’s Mount Sinai School of Medicine, were published in the August 2012 issue of the Journal of Allergy and Clinical Immunology. The high temperatures used in baking cause the proteins in milk to break down, reducing their allergenicity. Over an average of three years, 88 study participants underwent food challenges, moving from products cooked at high temperatures to unheated milk products. All activities were conducted under strict medical supervision. Children who passed the initial food challenge, which required them to eat a muffin, were instructed to eat baked products that contained small amounts of milk at home. As time went on, these children were challenged to eat cheese pizza, and if successful, unheated skim milk. Sixty-five children passed the initial muffin challenge. Of these,
Food Allergy News
39 (60 percent) are now able to tolerate unheated milk. Eighteen (28 percent) can eat baked milk and baked cheese. Eight children (12 percent) chose to continue avoiding milk products altogether. Most of the 23 participants who failed the initial muffin challenge must continue to practice strict avoidance of all milk products. The authors concluded that the ability to tolerate baked milk products helps predict that a child will outgrow his milk allergy. Most importantly, compared to strict avoidance, adding baked milk products to a child’s diet under the supervision of an experienced physician appears to help her outgrow her allergy faster.
Oral Immunotherapy for Egg Allergy Shows Promise Giving oral immunotherapy (OIT) to egg-allergic children and adolescents may enable some of them to eat egg-containing foods without having allergic reactions, according to a study supported by the National Institutes of Health. The results were published by the New England Journal of Medicine. The study is one of several federally funded trials of OIT, an approach in which a person with food allergy consumes gradually increasing amounts of the allergenic food as a way to treat the allergy. The trial was conducted by the Consortium of Food Allergy Research (CoFAR) at clinical sites in Baltimore; Chapel Hill, NC; Denver; Little Rock, AR; and New York City. The goals of the study were to determine if daily egg OIT reduced or eliminated participants' allergic responses to egg protein and, if it did, whether or not the benefit persisted after therapy was stopped for four to six weeks. The study enrolled 55 children and adolescents aged 5 to 18 years Research continued on page 11
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Legislative and Advocacy Update FAAN Making Tremendous Progress with School Access to Epinephrine Bill Having championed the introduction of federal legislation to encourage schools to stock epinephrine, FAAN has worked tirelessly over the past year to push the bill forward. Forty senators and 90 House members have cosponsored the legislation (S. 1884/ HR 3627). While at least 12 states have stock epinephrine laws, only two of those require schools to stock epinephrine—Nebraska and Virginia. S. 1884/HR3627 creates an incentive for other states to do so. “Ninety-seven percent of school children with food allergies live in states that do not require schools to stock epinephrine — we want to change that,” said FAAN CEO John Lehr. In January, Virginia first-grader Amarria Johnson died at school of her first anaphylactic reaction. Four months later, the state enacted a law requiring all schools to stock epinephrine so that they are
prepared to treat anaphylaxis when a child doesn’t have access to his or her own auto-injector. Amarria’s mother, Laura Pendleton, played an important role in the passage of the Virginia law. Earlier this year, she joined FAAN representatives for a series of meetings on Capitol Hill to make the case for the federal legislation. Rhonda Adkins and 12-year-old Brianna Adkins, wife and daughter, respectively, of country music star Trace Adkins, also came to Capitol Hill to thank the bill sponsors and advocate passage of the bill. “Our message on Capitol Hill is that a child shouldn’t have to die before a state recognizes the need for stock epinephrine in schools and passes its own law,” Lehr said. Legislation to authorize or require epinephrine in schools is being considered in several states. Passage of S. 1884/HR 3627 would significantly boost the efforts of state and local groups advocating this policy. In addition to making a case for stock epinephrine as a matter of preparing schools to respond in
an emergency, a federal incentive becomes part of the argument in favor of such laws. Congress will have very limited time in session before the end of the year, so there may not be time for the bill to make it through the legislative process. However, efforts on school epinephrine legislation will continue in 2013. “Our goal is passage of the legislation, but the bill has already served a purpose,” Lehr said. “The level of Congressional awareness of food allergies and the importance of readily accessible epinephrine has increased dramatically over the past year.” FAAN members and local food allergy support groups have played a very important role in making Congress aware of the need for S. 1884/HR 3627. If you have not contacted your senator/ representative, you may obtain a model letter for download and address information at: www. foodallergy.org/page/school-accessto-emergency-epinephrine-act1. u
to have three oral food challenges, at 10 months, 22 months and 24 months, with the maximum challenge equivalent to one egg. After 10 months, none of the participants who received placebo passed the challenge, but 55 percent of those on egg OIT did. After 22 months of egg OIT, 75 percent of those on egg OIT passed the second oral food challenge. To determine if egg OIT had any long-term benefit, the participants who passed the 22-month test were completely removed from egg OIT for four to six weeks and then re-challenged at 24 months. Eleven of the original
40 children passed this challenge, and were allowed to eat egg or egg-containing foods in their normal diets as frequently or infrequently as they chose. At a one-year follow-up, they reported no symptoms. The authors concluded that most of the study children could be safely exposed to egg while on egg OIT, and that approximately onefourth were able to eat egg in their regular diets even after stopping OIT for four to six weeks. u
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who had egg allergy, one of the most common food allergies seen in children. Participants were randomly assigned either to the treatment group, which received egg OIT (40 participants), or to the control group, which did not (15 participants). Participants received a daily dose of egg white powder or cornstarch powder (placebo) at home. Researchers gradually increased the dose of egg or placebo powder every two weeks until the children in the egg OIT group were eating the equivalent of about onethird of an egg every day. Participants came to the clinic
Editor’s Note: Research summaries above originally published by the Food Allergy Initiative.
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Holiday Gift Ideas from FAAN Looking for a gift for a loved one? Check out FAAN’s online store for great deals on products—here are just a few ideas! The Food Allergy News Holiday Cookbook $8.00 Stuffed with more than 150 tempting recipes, this cookbook offers helpful tips for substituting foods, cooking, and hosting safe celebrations throughout the year. This cookbook features FAAN's most popular seasonal dishes, including meals for Christmas, Hanukkah, Thanksgiving, Easter, and other, more informal holidays. With many common allergens avoided in every recipe, this will be your first reference for festive, allergen-free recipes.
Alexander the Elephant Children’s Book Series - $20.00 Alexander the Elephant and his friends have taught thousands of children who have food allergies how to stay safe and that they're not alone. This 14-book collection teaches young readers about their own food allergies through the experiences of Alexander, Lenny, Sally, and the other loveable characters as they face everyday situations—having a babysitter, eating away from home, going to school, and more. This set is intended for children ages 2 to 7.
Cooking Together: Allergy Free Recipes, Parents and Kids $8.00 Filled with lots of fun activities in the kitchen, this award-winning cookbook provides a good way for parents to spend time with their kids while making tasty, allergen-free foods. Cooking with a favorite adult gives kids a sense of empowerment as they learn to take control over their special dietary needs. Stainless Steel Travel Mug - $5.00 Our 15-oz. stainless steel thermal travel mug has a black lid and base. This is a great item for raising awareness and gift giving. u
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