December 2011 Subscribe today
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
Novak Djokovic Reveals Gluten Allergy, Rises to No. 1 in World Tennis
Gluten Sensitivity Recognized as Health Condition
Mouse Study Sheds Light on Celiac Disease Triggers
NFCA Earns Grant to Study Gluten in Medications
ALV-003: 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.
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.
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
AMERICAN POPOVERS (OR BRITISH YORKSHIRE PUDDING)
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.
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.
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!
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
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:
Awareness All -Stars Kids Fundraiser: Halfway to Goal!
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!
FREE Webinar: December 15, 2011