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Celiac in the News
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CHAT WITH NFCA:
NFCA Founder & President
The Top Celiac Disease and Gluten-Free Headlines of 2011
I want to thank everyone for another incredible year of progress in celiac and gluten-free awareness. When I think about how I used to special order my food and had never seen “gluten-free” written on a menu, I am amazed by what we’ve accomplished together.
December is always a time when people look back and take account of all that’s happened over the last 12 months. For us, let’s just say it was A LOT. So much, in fact, that I had a hard time deciding what to highlight in this note. I take that as a good sign.
In case you missed them, here are some of the Top Celiac Disease and Gluten-Free Headlines of 2011:
FDA Finally Takes Step in Gluten-Free Labeling
After 4 years of stalling, the Food and Drug Administration (FDA) finally resumed its efforts to set a standard definition of “gluten-free.” The FDA reopened the public comment period on the proposed regulations, which currently require that gluten-free products contain less than 20 ppm of gluten. A final rule is expected in late 2012.
Learn more about gluten-free labeling.
Novak Djokovic Reveals Gluten Allergy, Rises to No. 1 in World Tennis
Few could doubt the power of diagnosis and diet change after Novak Djokovic soared to the No. 1 spot in world tennis. The sports sensation revealed that he had been diagnosed with a gluten allergy earlier in the year and saw a dramatic improvement after going gluten-free. His incredible turnaround caught the attention of the Wall Street Journal and the New York Times.
Read about Novak Djokovic and his gluten-free turnaround.
Gluten Sensitivity Recognized as Health Condition
For years, a large segment of people suffered with gastrointestinal issues, migraines, joint pain and more, only to be told they didn’t have celiac disease. They fell into a gray area of having symptoms without any scientific evidence to explain why. This year, renowned celiac researcher Dr. Alessio Fasano identified a unique immune reaction that occurs in non-celiac gluten sensitivity – a reaction different from the one that occurs in individuals with celiac disease. An estimated 18 million Americans have gluten sensitivity, and interest is booming. A gluten sensitivity conference hosted by Dr. Ken Fine, pioneer in the field, in November drew international experts as well as patients looking to learn more.
Read about Dr. Fasano’s study.
Mouse Study Sheds Light on Celiac Disease Triggers
A much anticipated report from the University of Chicago identified two chemical signals as triggers for the autoimmune response in celiac disease. Researchers used a mouse model of the disease to test different factors and found that increasing the level of interleukin 15 in the intestine prompted early symptoms of celiac disease. This was an incredible discovery, as knowing the triggers for celiac disease is an essential step in preventing the disease.
Read about the mouse model study.
NFCA Earns Grant to Study Gluten in Medications
This one is biased, but getting a $50,000 grant from the Food and Drug Administration really is a big deal. There is a lot of attention on labeling of gluten-free foods (see above), but few realize that gluten in medications may pose a risk, too. NFCA has been working behind the scenes for years to raise this concern. Now, NFCA will be the first to conduct a study on this important topic.
Learn more about NFCA’s study.
ALV-003: The Celiac Drug
Alvine Pharmaceuticals announced that ALV-003, a drug designed to degrade gluten and block the immune response that occurs in celiac disease, has been effective in clinical trials. Researchers hope to move it to the next phase of clinical trials. The hope of a celiac drug received mixed reviews in the gluten-free community. Some welcomed it; others vowed that they wouldn’t try the drug, even as a safety net for cross-contamination.
Read a Q&A about the celiac drug.
See you in 2012!
Your Child Has Been Diagnosed With Celiac Disease: Now What?
By Tina Turbin
There’s nothing quite like the relief of having your child properly diagnosed with celiac disease, especially when the diagnosis comes after years of painful physical or mental symptoms. At the same time, eliminating gluten from your child’s diet can seem daunting at first, requiring a total lifestyle change. After leaving the doctor’s office, full of pamphlets and a bunch of verbal information you hope you’ll remember, you can’t help but wonder, “Now what?”
In my work as a gluten-free advocate, parents often ask me this question. I usually advise them to take some important first steps, as follows.
First, it’s important for parents to be well-connected with professionals and a local support group. You can find a local support group by contacting a national celiac disease support organization or conducting a search online. It’s also recommended that celiac patients meet with a qualified nutritionist for guidance on their gluten-free diet.
You should read up on the details of the diet, learn tips on how to deal with some of the challenges of the gluten-free lifestyle, such as avoiding cross-contamination, and bookmark some gluten-free recipes. Once you feel that you understand enough about celiac disease and the gluten-free diet, it’s time to have a talk with your child and explain everything in simple terms and with a positive attitude.
It’s important to familiarize yourself with sources of gluten and to learn how to read ingredient labels for gluten. How much you choose to teach your child about these specifics depends on his or her age and maturity level. I recommend obtaining a list of safe and unsafe foods for your child and to carry this list at all times. Make sure you’re aware of hidden sources of gluten, which can be found in your child’s gravies, toothpaste, soups, medications, and even Play-Doh.
It’s time to go shopping for gluten-free foods. Many health food stores offer gluten-free choices, and some supermarkets also sell gluten-free products. It may be wise to leave very young celiac children at home while you go shopping to avoid upsetting them by not picking out their usual favorite foods. You can also order gluten-free foods online at sites such as GlutenFreeMall.com. You’ll also need to learn how to call companies to find out about the gluten content in their products. Practice making some gluten-free goodies, such as gluten-free chocolate chip cookies, with your child so he or she can see how delicious gluten-free cooking can be.
Tell your family, friends, and your child’s teachers and administrators about your child’s diagnosis. Due to the genetic factor behind celiac disease, it’s critical to tell your family about your diagnosis so they can get tested for the disease as well. You can find form letters to teachers and administrators in NFCA’s Guides for Parents. I recommend sending letters or emails along with print resources, such as informational booklets. Follow this up with a phone call or face-to-face meeting.
Finally, it’s time to learn how to dine out gluten-free and to practice this with your child. Several websites offer search tools for finding restaurants in your area that are gluten-free or gluten-free-friendly. For tips on eating out gluten-free, see NFCA’s Getting Started Guide (PDF | HTML | TEXT) and Gluten-Free Dining Tips.
It’s important to understand that mastering the gluten-free diet takes time and practice. Everyone makes mistakes at first and challenges arise, such as cross-contamination. Be thankful that your child is one of the few celiacs who have been properly diagnosed, and remain optimistic about your family’s future of healthy, gluten-free foods.
RECIPE: Gluten-Free Cashew Flour Cookies
About Tina Turbin:
Tina Turbin 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. Tina is an award-winning children's book author (DannyTheDragon.com) and donates her current children's audio book profits to celiac disease research. To stay updated on her projects, sign up for her newsletter at www.TinaTurbin.com.
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Traditional Christmas Recipes Go Gluten-Free
By Chef Oonagh Williams
From my family to yours, here are some of my favorite classic Christmas recipes with a gluten-free twist:
ENGLISH SHERRY TRIFLE
In British households, the English Sherry Trifle is traditionally made at Christmas (along with other desserts such as mince meat pies and Christmas cake). There are two versions: The “everyday,” made with a store-bought jelly roll, canned fruit, gelatin and packet-made custard; and the scratch version, made with fresh cake, fresh fruit and freshly made custard. This is a gluten-free version that falls somewhere in between.
Classic Tiramisu is normally made with ladyfingers or sweet biscuits. Some variations call for making a thin whisked sponge cake cut into two layers to fit the serving bowl. This version uses my Gluten-Free Ladyfingers recipe as the base.
AMERICAN POPOVERS (OR BRITISH YORKSHIRE PUDDING)
This recipe goes by several names. In England, it’s called Yorkshire Pudding and is traditionally cooked in the same pan as the roast beef once the beef is removed from the pan and left to rest. In America, they’re referred to as popovers and tend to be cooked in muffin pans. When cooked in a pie plate, it’s known as volcano pancake. No matter the name, it’s important to serve these straight out of the oven while they’re hot.
About Chef Oonagh Williams
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.
To learn more, visit Chef Oonagh’s website at RoyalTemptations.com or ‘Like’ her at Gluten Free Cooking with Oonagh on Facebook.
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By Gini Warner, Clinical Nutritionist
It is important to bring healthy gluten-free snacks when traveling by car or public transportation. The most frustrating thing is to be in a situation where you are hungry and there is nothing safe to eat. Drops in blood sugar can cause mood swings and result in making sudden and poor food choices.
Some airlines offer gluten-free options. Make sure to contact them at least 24 hours before your flight to request a gluten-free meal. Always pack some gluten-free food just in case the meal they serve is not what you ordered or contains something you do not like to eat. Beans are a great option to take on an airplane. You can put fresh or canned beans into a Tupperware container and pack them in your carry-on bag. They do not need to be refrigerated to taste good.
If you are taking a long trip by car or train, it is helpful to pack a cooler of healthy gluten-free foods. Fresh fruits and raw vegetables make excellent snacks. You can also bring some raw, unsalted nuts and seeds for a light source of protein. I like to bring raw carrots and hummus dip on long car rides.
Call restaurants in the area you are visiting to find out if they offer a gluten-free menu or if they will accommodate your needs. Make sure to speak to a manager or someone in charge. You can also look online for recommendations of gluten-free restaurants in the area. The most important thing to remember is: Don’t be afraid to speak up and get what you need! Your health comes first.
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.
To learn more, contact Gini at www.healthbygini.com or firstname.lastname@example.org.
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Children and teens living with celiac disease have unique needs, so the National Foundation for Celiac Awareness (NFCA) has teamed up with the Center for Celiac Disease at The Children's Hospital of Philadelphia (CHOP) to answer your questions about helping your child manage celiac disease and live gluten-free.
Ask the Pediatric Gastroenterologist brings you answers directly from CHOP's pediatric celiac experts, including physicians, nurses and dietitians.
Find this new resource in the Parents section of Kids Central. Our experts are ready and waiting, so submit your question today!
Note: Ask the Pediatric Gastroenterologist is intended for general questions about celiac disease, gluten sensitivity and/or the gluten-free diet related to kids and teens. The information is not intended to establish a patient/provider relationship. Consult your child's pediatrician or nutritionist regarding specific individual health needs.
Responses to approved questions will be posted on Ask the Pediatric Gastroenterologist. Please allow 1-2 weeks for responses to be posted.
More from Kids Central:
Have you been following our Gluten-Free Holiday How-Tos? We’ve already unveiled 11 days of survival tips for the holiday season, and there’s plenty more to come. Here are a few gems we found particularly helpful:
Prepare yourself for the rest of the holiday season by signing up for our remaining Gluten-Free Holiday How-To eblasts. By signing up, you’ll be entered to win that week’s gluten-free giveaway and be in the running for the Grand Prize - $100 cash plus $40 worth of free Crunchmaster crackers!
The gluten-free diet doesn’t have to rule your life, but there are a few gifts and gadgets that can make it a lot more fun!
We’ve thought of some crafty and trendy gifts for the gluten-free someone on your shopping list. See our 2011 Gluten-Free Gift Guide for ideas and links to find out more.
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!
Pleased to Tweet You
Name: Melissa McLean Jory, MNT
Follow her at: @GFMelissa
1. How long have you been gluten-free?
Since around 2000, so over a decade.
2. What do you like to tweet about?
Gluten-free awareness, celiac disease, events, conferences, nutrition, health, food, exercise, yoga, sports, my current blog posts.
3. Why do you follow NFCA (@CeliacAwareness)?
Because we're all in this together. Raising awareness of celiac disease and helping people heal and thrive are goals of mine. I believe in what Alice is doing at NFCA. I'm on the same wavelength (body, mind, and spirit health). I went to Alice's first Gluten-Free Cooking Spree in NYC, all the way from Colorado! She's wonderful.
4. What's your favorite gluten-free dish?
I'm a nutritionist (plus exercise science nerd and yoga person), so I favor whole foods, especially vegetables. Anything leafy and green are favorites. And beets (power smoothies).
5. What's one thing you can do now that you couldn't do before going gluten-free?
I feel blessed that I have celiac disease, so I guess I'd say I can advocate for healthy living in a more vocal way now. I have medical street cred. =)
6. In 140 characters or less, why should others join the gluten-free community on Twitter?
If you follow the right people it's quick, fun, educational, enlightening, and entertaining. I’ve made some great connections via Twitter.
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!
The National Foundation for Celiac Awareness: Our summer intern Rachel Fox has been helping a fellow sorority sister who was recently diagnosed with celiac. Camille is still struggling with the transition - Let's give her some words of encouragement! Meet Camille: Newly Diagnosed and Gluten-Free in College
Samantha 'Sammy Elle' Murphy: I was diagnosed when I was a freshman in College. Keep your head up girly, you can make the transition and I promise it will be worth all the ups and downs!
Rebecca Boyle: When my hubby was first diagnosed, he couldn't have dairy or corn and eventually those intolerances went away. Maybe you'll be just as lucky. Just remember to take care of yourself because feeling miserable is no fun. There are also lots of options for GF ingredients/readymade items now on Amazon.com that might help give you more variety :)
Allie Marie Love: I was just diagnosed on Halloween. I got the blood test results while at my college program. I was at lunch when my doctor called me with the results. I am happy to know why I have been so sick in the last year. The last couple of weeks have been really hard with the change of diet, but my family has been really supportive. My friends at school have also been really supportive in helping me pick out the food at our cafe that I can eat. They also buy food that is gluten-free to support me and help me to stay on my gluten-free diet. I am starting to feel better and not getting as sick as I was with the gluten in my diet.
Our volunteers have been doing fantastic work across the U.S. Here are just a few stories and updates:
We are more than halfway to our goal of raising $10,000 in NFCA’s Awareness-All Stars kids-only fundraiser. Our young participants have proven to be fundraising dynamos, with Noa S. leading the pack (as of press time). Right behind her is Jack Simpson, who is doing some offline work to support his online fundraising page. Jack has created ornaments bearing his town’s name and is selling them to benefit NFCA. Other fundraising champions are Madison Pilavin, Alex Levinson and Jillian Freedman. Keep up the great work!
There’s still time to launch your own fundraising page with your child. That means you can be in the running to win our Grand Prize or one of many other prizes. NFCA’s Awareness All-Stars kids fundraiser ends Dec. 31, 2011, so start fundraising today!
Turning Celiac into Service: Unleashing Your Passion and Life Purpose
Join Alice Bast, Founder and President of the National Foundation for Celiac Awareness (NFCA), as she shares how her own personal experience with celiac disease ignited her passion to help the 3 million Americans living with celiac disease receive a prompt and accurate diagnosis.
During the 90-minute webinar, Alice will discuss her transformation into a widely regarded celiac disease expert and her experience founding NFCA. Using her journey from patient to advocate, Alice will demonstrate how others can take charge and embark on a path to Restore Health and Reclaim Lives!
When: Thursday, Dec. 15, 2011
Time: 9-10:30 p.m. ET
Where: Your computer
To register: Visit the registration page
*For more gluten-free and celiac awareness events, visit our Upcoming Events page.
NEW GREAT Kitchens In CO, FL, KS, NC, OH, NY, PA & TX
NFCA would like to congratulate the following establishments that have recently completed NFCA’s GREAT Kitchens program. Stop by for a gluten-free meal today!
Quiero Arepas Food Truck – Denver, CO
The Target Weight – Weston, FL
Village Presbyterian Church – Prairie Village, KS
Charlotte Country Day School – Indian Trail, NC
La Rosa’s Pizza – Oxford, OH
Maple Knoll Village – Springdale, OH
Worthington Hills Country Club – Columbus, OH
O’Toole’s – Queensbury, NY
Fox’s Pizza – Ridgeway, PA
TaMolly’s Mexican Restaurants – Texarkana, TX (11 locations)
NFCA Recognizes Delaware Valley GREAT Kitchens and Retailers in Gluten-Free Awareness Month PSA
To celebrate November as Gluten-Free Diet Awareness month, NFCA aired public service announcements throughout the Delaware Valley dedicated to the restaurants that have undergone GREAT Kitchens training. Learn more about this exciting promotional effort.
GREAT in the News
To learn more about GREAT Foodservice, contact Beckee@beyondceliac.org.
By Cheryl McEvoy, NFCA Online Content Manager, and Kelly Clayton, NFCA Volunteer
Say the name out loud. Sounds a lot like “ginger,” right? Well, that’s exactly what’s in this drink, plus cayenne pepper, green tea and lemon. As I was warned before trying this product, it has a strong bite, so sip carefully. That being said, I quickly became accustomed to the flavor and found myself using it to glaze sweet potato wedges, sauté plums and pour over ice for a zippy drink. It tastes like very strong, flat ginger ale, and like ginger ale it has soothing digestive benefits. Grab a bottle and you’ll find yourself pouring a splash into stir fries, soups and just about anything.
It was Pur Gum’s tagline that first caught my eye: “Kick Aspartame!” Yes, the gum is indeed aspartame-free, and free from gluten, too. The gum uses xylitol, a sugar alcohol sweetener that is a more “natural” alternative to aspartame. The gum is similar to the breath-freshening kind that requires you to bite through a candy-like shell before you can chew. All four of the flavors were intense from the outset, but not long lasting. The gum also gets hard to chew rather quickly – a common problem with those pop-pack gums. Personally, I prefer stick gum, but this is a great option for a quick burst of mint. I recommend the Pomegranate-Mint for an unusual fruity-yet-refreshing flavor.
Fig Salami. Rosemary Lavender Crisps. Pumpkin Seed Granola. These are not your typical snacks, but a playful use of flavors. The Fig Salami looks like meat, but is sweet, dense and studded with mini chocolate chips. The Crisps are similar to raisin bread sliced thin and toasted to a crisp. The lavender flavor is unusual at first, but I came to like it after a few bites. The Granola was salty, sweet and went nicely mixed in yogurt. It could also work well over ice cream or mixed with peanut butter and spread over gluten-free toast for a protein packed snack. The products are certified gluten-free, but the granola does contain oats, so choose according to your dietary needs.
Snyder’s of Hanover Gluten Free Pretzel Sticks
There is something so remarkably timeless about pretzels and their incredible snack-ability. Snyder’s of Hanover Gluten-Free Pretzel Sticks are by far the most delicious gluten-free pretzels I have tasted thus far. The pretzel sticks are made of corn and potato starch and have a great crunch to them. They are perfect for pairing with peanut butter, dressings and other gluten-free dips. The pretzels are even light on calories: only 120 calories for a serving of 30 sticks. When compared to gluten-filled Snyder’s pretzel sticks, these gluten-free ones contain only 10 calories more per serving but 40 mg less sodium than regular pretzels!
*Get Hot Products updates from NFCA every week!*
Visit our Gluten-Free Hot Products blog >>
NY Times Article Asks: Should We All Go Gluten-Free?
The Nov. 27 edition of New York Times Magazine included a lengthy feature article by Keith O’Brien about the gluten-free lifestyle. Titled “Should We All Go Gluten-Free?” the article highlights the success General Mills has seen in its gluten-free products and website. Beyond that, the article reveals the challenges of living gluten-free for medical needs and the overwhelming joy that a simple thing like gluten-free pancakes can bring to those who have gone so long without them. The article received hundreds of comments online, including many personal stories from readers in the gluten-free community.
Read the article
US Foods Helps Colleges Meet Increasing Student Demand for Healthy and Gluten Free Foods
In Dallas, US Foods Corporation hosted a special educational forum for colleges and universities from across the country to share challenges and best practices for meeting the dietary needs of students. With celiac diagnoses on the rise, US Foods felt it was important that the issue of on-campus cafeterias be discussed in order to create a healthy gluten-free menu. US Foods is the 10th largest private company in America, offering nearly 500 healthy and delicious gluten-free food items for students.
Read the press release
Celiac Awareness Tour Opens Discussion in Rocky River, OH
On November 19, the Celiac Awareness Tour stopped at the Don Umerley Civic Center in Rocky River, OH. The Tour is a series of national events dedicated to providing information for those who live with celiac disease to inform, entertain and inspire by way of lectures, personal stories and delicious gluten-free meals and snacks. At the Ohio event, Good Greens, a local company specializing in healthful nutrition bars, gave away samples and offered wisdom on the topic of the gluten-free diet.
Read more about the event
Actress Jennifer Esposito to Open Gluten-Free Bakery
Actress Jennifer Esposito is planning to open a gluten-free bakery, according to reports. Esposito, who starred in the movie “Crash” and has a leading role in the CBS show “Blue Bloods,” has previously shared her passion for gluten-free baking. Now, reports say she is looking to open up shop in New York City. No details on the potential location or name.
Read more about this story
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