Where Are My Groceries?
NFCA IN ACTION
CONNECT WITH NFCA:
13 Ways to Celebrate Celiac Awareness Day
Celiac Awareness Day? Isn’t that in May? Well, yes and no. While the 31 days in May are all devoted to spreading the word about celiac disease, September 13 is also a day of recognition. That’s the birthday of Dr. Samuel Gee, a physician and pediatrician who gave us the first full clinical picture of celiac disease back in 1888. In previous years, the Senate has passed a resolution to designate Sept. 13 as “Celiac Awareness Day,” and this year is no different. S. Res. 219 was introduced in June and now sits on the Senate floor. (Update! The Senate passed this resolution on Sept. 7.)
At NFCA, we devote every day to celiac awareness, so there’s always a reason to celebrate. Whether it’s on September 13 or any other day, here are 13 ways you can take celiac awareness one step further:
1. Share the Celiac Symptoms Checklist. Send the checklist to 10 friends. Odds are, at least one of them will have an “Aha!” moment and recognize the symptoms in a family member, neighbor or friend.
2. Play a role in research. The Celiac Center at Beth Israel Deaconess Medical Center (BIDMC) is looking for relatives of celiacs to test a new self-administered blood test. It’s your chance to finally convince your mother, brother, or another family member to take the test once and for all. (Update: Study has been filled. Thank you to all who signed up!)
3. Go for a run. Restoring health isn’t just about making the dietary switch to gluten-free; it’s also about embracing your new lease on life. I’ll be here when you get back.
4. Or, support a fellow celiac while he runs. On September 24, Athlete for Awareness Peter Bronski will run 50 miles and scale 10,000 feet for the 2nd year in a row – all to raise money for NFCA. Donate to help him reach his goal.
5. Tell your doctor “Sorry” isn’t good enough. How many doctor appointments did you waste complaining of symptoms before you finally got diagnosed? End the cycle of misdiagnosis once and for all: Print the Celiac CME postcard from our website and urge your doctor to take NFCA’s free course on celiac disease.
6. Expand your dining options. If you know a restaurant that needs gluten-free training, now’s the time to act. Print the GREAT Kitchens information sheet from our website and bring it to the restaurant. As an incentive, tell the manager how many friends and support group members are just waiting to find a new gluten-free hot spot.
7. Be a part of something big. Sign 1in133.org’s Letter to the FDA regarding the proposed gluten-free labeling rule. It’s one way to tell the FDA to keep moving and stop stalling when it comes to gluten-free safety.
8. Have a party. Bake some gluten-free cupcakes. Put out a bowl for donations. Voila! Instant Cupcake Party Fundraiser. (It’s really that easy.)
9. Head to class. Ask your child’s teacher if you can have a special Celiac Awareness Day at school. Read a celiac disease children’s book, then take questions from the kids. If your child’s school allows it, bring in gluten-free snacks for everyone to try. While you’re there, encourage the cafeteria staff to get gluten-free training through NFCA’s GREAT Schools program.
10. Sharpen your cooking skills. You never stop learning, so take advantage of NFCA’s library of free gluten-free cooking videos. The videos not only have step-by-step instructions, but also give you helpful tips, like how to sneak veggies into a dessert.
11. Make a new friend. If you’re not on Facebook or Twitter yet, get moving! The staff and I have met tons of new people through social media, and there’s sure to be a lot of exciting chats and activities for Celiac Awareness Day.
12. Try something GREAT. NFCA’s GREAT Business Association members are huge supporters of the celiac and gluten-free community. Encourage their continued involvement by picking up one of their products. (Make sure to tweet about it!)
13. Prepare future advocates. We’ve made incredible progress, but it’s up to our kids to keep that going. Teach them the joy of volunteering and advocacy by helping them contribute to Kids Central. They can sign up for the Letter Writing Fundraiser, share a gluten-free recipe, or submit a product review for kids.
Sleepovers and Your Celiac Child
By Tina Turbin
With school back in session and your celiac child making new friends, don’t be surprised if he or she gets invited to a sleepover or begs to host one in your home. After all, kids of all ages find sleepovers irresistible, and who could blame them? With delicious snacks, movies, games, and gossip, it’s the ultimate social event.
You may or may not know how to keep your child gluten-free at friends’ houses, depending on how long your child has been diagnosed with celiac disease. Make sure to speak directly with the parents hosting the sleepover before leaving your child with them. Just as you’ve done with your child’s teachers and administrators during back-to-school preparations, provide these parents with helpful books, pamphlets and lists of foods and ingredients that are off-limits and those that are okay. Trade phone numbers and email addresses, and let them know they can call you at any time, even late at night.
For the sleepover, provide a variety of gluten-free goodies and foods for your child, and some extra food for his or her friends. I recommend packing extra-special treats so your child doesn’t envy his or her friends’ foods. You can also ask the host parents for a specific list of what will be served and provide gluten-free alternatives for each of the items.
You’ll probably find that hosting a gluten-free sleepover in your own home is less of a challenge than sending your child off to one in another home. For dinner, bake your own gluten-free pizza and let the kids top them with their favorite toppings. I recommend making gluten-free cupcakes or cookies as the central activity of the night. Kids love decorating these, and your celiac child will love to see how much his or her non-celiac friends love gluten-free goodies. Here’s a recipe for cookies to bake during your sleepover:
This recipe was donated at the 2009 Tampa Bay Celiac Group Cookie Exchange.
1. Beat butter and sugar until creamy. Add vanilla and mix well.
2. Add dry ingredients. Stir until a soft dough is formed, then add chips.
3. Shape dough into a flat square, wrap in plastic and refrigerate for 30 minutes.
4. Preheat oven to 350 degrees. Lightly grease cookie sheet.
5. Using a thick, sharp knife, slice dough into 5/8-inch slices and place on greased cookie sheet. Sprinkle with granulated sugar. Chill again until cold before baking.
6. Bake 8-10 minutes until centers are cooked.
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 the Celiac Disease Center at Columbia University Medical Center. To stay update to date on her projects, sign up for her newsletter at www.TinaTurbin.com.
Gluten-Free Recipes to Ride Out the Summer
By Chef Oonagh Williams
It may be back-to-school time for some, but for many of us, that no longer applies. It is, however, the end of summer, when those lazy, hazy days of relaxing and grilling start to fade.
In the days of kids, work and “What time’s dinner?”I used to make a large quantity of at least two meals over the weekend. I’d store the leftovers in the freezer. Then, during the week, I would prep tomorrow night’s meal while tonight’s meal reheated in the oven.
If you are cooking for a mixed family (meaning gluten-eating and gluten-free) I suggest that you cook up a batch of gluten-free pasta and freeze it in bags ready to top with sauce. That way, you have a quick meal when you walk in the door. Use two colanders – one for gluten-free pasta and one for wheat pasta – and make sure they look totally different. The starch from wheat pasta too easily gets clogged in a colander and can contaminate gluten-free food.
LAZY GLUTEN-FREE LASAGNA
HOMEMADE TOMATO SAUCE
GLUTEN-FREE QUINOA BANANA (OR APPLE OR PEAR) BREAD
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.
By Whitney Ehret, NFCA Director of Communications
How well do you know your thyroid? That little butterfly-shaped gland in your neck plays a critical role in your whole body’s health, and celiac disease could put it at risk.
People with celiac disease are nearly four times more likely to develop an autoimmune thyroid condition. On the reverse side, many people with autoimmune thyroid disease may have celiac disease and not even know it!
To bring you up to speed, the National Foundation for Celiac Awareness (NFCA) has created an overview of the two autoimmune thyroid conditions most commonly linked to celiac disease. You’ll learn the symptoms, diagnosis and treatment protocols, and the risks of going undiagnosed. It’s an important read for anyone affected by autoimmune disease!
By Nancee Jaffe
Every person with celiac disease knows: You are never supposed to ingest gluten.
We do everything we can to stay safe at home, at restaurants, at parties and when we travel. We know all the questions to ask, what to look for on food labels and that “when in doubt, go without.”
But let’s be honest, it happens: accidental ingestion.
Most of the time, it is minor. We might have no symptoms, develop a slight stomachache, experience a little bit of diarrhea, or notice a few bumps on our elbows, jaw line or knees.
But then there are the times when we get ambushed and accidentally ingest an amount that results in a serious outbreak. What do we do then?
My ‘Celiac Attack’
It felt like my insides were liquefying. That is how I would describe my recent (and luckily first) major bout of accidental gluten ingestion.
I was diagnosed with celiac disease a little over 4 years ago and have been incredibly fortunate not to have had any serious issues with accidental gluten intake…until recently. After I was diagnosed, I learned how to cook my favorite meals in a gluten-free way and have an amazing support system that helps me stay healthy. I also have a few favorite restaurants that I frequent once or twice a month, where they know me and my gluten-free needs.
Unfortunately, this lifestyle bred a bit of laziness, and the last time I went to one of my favorite Mexican restaurants, I placed my order without asking the usual questions:
Something went wrong, and 2 days later I experienced some of the worst pain I have ever felt, pre- or post-diagnosis. The damage seemed significant, and it took me more than 2 weeks to get back to normal.
In particular, my symptoms associated with this accidental gluten intake were an explosion of dermatitis herpetiformis on my right elbow, severe abdominal cramping that ranged from my stomach to my rectum, and constant diarrhea. I called this a “celiac attack,” and I thought my symptoms would never end.
What to Do?
It has or will happen to all of us. Being my first time experiencing such an onslaught, I felt fear and a sense of shame. I should have known better, I thought. Not only have I known about my celiac diagnosis for over 4 years, but I am also a dietetic student at California State University Los Angeles, specializing in chronic gastrointestinal disorders. I know the damage I caused in my small intestine, and the increased risk for future diseases like osteoporosis and cancer that gluten ingestion poses.
But, I also realized that “celiac attacks” are inevitable if we continue to be social creatures in a world where socializing is almost always synonymous with food. So, what do we do to help ourselves during an attack? As a recent survivor and a dietetic student, I have a few helpful tips that worked for me and may work for you:
How Did You Cope?
When my symptoms hit, I didn’t know what to do. The pain was blinding, and the diarrhea made me feel embarrassed. I went online to my favorite celiac sites and had trouble finding any information or discussion about what to do when a celiac takes in a large amount of gluten.
As a community, it is important we talk about this unfortunate aspect of being a celiac.
Of course, the experience will be different for every person. Some may have no symptoms, while others may have symptoms far worse or different than I described. By sharing these experiences, we can collectively come up with some quick tips for surviving accidental gluten ingestion.
Have you had a ‘celiac attack’? What were your symptoms? How long did they last? What helped you feel better? Visit NFCA’s Facebook page to share your tips.
About Nancee Jaffe
Nancee Jaffe is a dietetic student currently training to become a registered dietitian, as well as earning her master’s degree, from California State University Los Angeles. Nancee was diagnosed with celiac disease in May 2007 and has been an avid student of nutrition ever since. Her studies focus on chronic gastrointestinal disorders such as Crohn’s disease, ulcerative colitis and celiac disease.
By Chef Dan Kohler of Renegade Kitchen
I usually eat salad for breakfast. But today, I’m coming to the normal-people-breakfast-party.
Rudi’s Gluten-Free Bakery sponsored the new episode of “Alternative Appetites” featured below, and they wanted a few back-to-school recipes. I knew immediately that I’d share my recipe for homemade mayo (the best way to brighten your sandwich), but puzzled over the second recipe.
When I was in high school, I swore by a meal of three eggs, over-easy, with some toast. But my audience, for the most part, isn’t 6 1/2 foot tall men. Which brings me back to the normal-people-breakfast-party. Breakfast is essential for anyone in school, and I want to give you a little sweet spread that will keep you full of good stuff, not just sugar and chocolate (nothing wrong with sugar and chocolate, but not the best for test-takers).
I thought of making a peanut-based spread, something with protein and morning-time appropriate, which made me think of other nut butters. Cashews have the distinct honor of blending up creamily with a rather unpronounced flavor, a perfect base for my experiments.
This spread delivers protein from the nuts and some hefty vitamins and minerals from the coconut cream, a potent combination for early mornings. And now that I’ve had a few pints of it slathered on toast I can say with conviction that I understand how the other half lives. I may still eat salad for breakfast, but I’ll keep this on hand for emergency cravings. Beyond breakfast, this spread will make a charming cake filling the next time I make something with layers. Who has a birthday coming up?
About Chef Dan Kohler
Dan Kohler is an actor and founder of Renegade Kitchen: Serious Food for the Allergy Bound, a blog chronicling his food adventures in the kitchen and on the street. Dan is also the host and producer of “Alternative Appetites,” NFCA’s online gluten-free cooking series.
By Teresa DeMarcos
“I can’t believe they only have one type of gluten-free pasta,” I said to the empty grocery aisle. I was at a local health food store, expecting to hit the gluten-free jackpot. I almost gave up in complete frustration. My error became clear when I spotted the “Gluten-Free” sign in the back corner of the store. Baking mix, chips, cookies, bread and – to my shock – at least half a dozen brands of gluten-free pasta. So thiswas where they were hiding the gluten-free food!
Awareness of celiac disease and gluten intolerance is increasing, and with it the availability of gluten-free foods. Those of us who eat gluten-free couldn’t be happier to finally have al dente pasta and other long forgotten foods. Still, this presents a growing problem for grocery stores: where to put this stuff.
Life was easy enough when gluten-free was a specialty market designated to one small corner of the store. Gluten-free options were limited. In earnest we bought them, telling ourselves they were kind of the same. At least that’s what I hear. It seems I switched to gluten-free at just the right time because there are lots of choices! My party guests this summer couldn’t even tell the finger sandwiches were gluten-free – the bread got compliments! It’s a gluten-free Renaissance, but I can’t help notice my local grocery stores seem stuck in limbo.
Traditional logic says to expand the gluten-free section, but what about naturally gluten-free products? What about big companies who already have established shelf space? Not to mention the refrigerated and frozen products! Most stores seem caught somewhere between that old gluten-free shelf and the rest of the store.
As a shopper, I’ve had plenty of time to think while trying to locate the gluten-free ranch dressing. I’ve narrowed the possible solutions:
It sure is tempting to rally for our own section of the grocery store full of all the things we want and need. Better yet, why not plan ahead and start building whole gluten-free stores? Well, there are some advantages to getting rid of the gluten-free section for good:
Next stop: Customer Service. Bring that list of items you never get around to requesting, but this time, request them! If enough customers speak up, stores will listen.
Let your local stores know if you’d prefer your pasta in the pasta aisle. Of course, if you’d like gluten-free foods to stay in their hard won grocery territory, stores should know that too! Share your preferred grocery store layout on NFCA’s Facebook page.
About Teresa DeMarcos
Teresa DeMarcos has seen a dramatic improvement in her health since going gluten-free 6 months ago. While not a writer by trade, Teresa enjoys taking health into her own hands and sharing her discoveries with others.
Peter Bronski Looks To Race & Raise Funds for NFCA!