Archive for July, 2012
Last February, I received a random phone call on my NFCA line. It was a mother, Jenny Tierney, who seemed pretty devastated. Her teenage twin daughters had just been diagnosed with celiac disease. (All of the staff at NFCA answer all kinds of calls from newly diagnosed patients and others in the food industry or healthcare field. It’s a great opportunity to walk them through the resources available at CeliacCentral.org.)
After a review of NFCA’s resources, Jenny felt a bit better and she agreed that she could handle adapting to the gluten-free diet at home and working with the school, but her biggest fear was sending the girls off to camp. The girls had gone every year since they were very young to this amazing camp for most of the summer. The solution was easy. I shared information about GREAT Schools, Colleges, and Camps and suggested she have the camp contact me.
A month later, I received an email from a college girlfriend Sara, who lives near Kansas City. Sara told me about her neighbor, Kathy Dix. Kathy and Sara had been chatting, and the topic of gluten-free foods came up. Sara is always telling people about her gluten-free college pal and my job with NFCA. She thinks it’s amazing how 20 years ago when I was diagnosed with celiac disease, it was considered a rare disease and food availability was scarce. Over the years, Sara has referred me to anyone interested in anything about gluten-free. She also cuts out articles related to celiac disease and gluten-free from newspapers and magazines and sends them with a note saying, “Reminded me of you,” or “Hey isn’t this cool?” or “Wow, this gluten-free stuff is everywhere.” Gotta love her for it.
Well, it just so happens that Kathy needed gluten-free training for her camp. She’s the director of a girl’s camp in upper Minnesota called Camp Ogichi Daa Kwe. A conference call was set up to talk to the staff to understand their needs and how NFCA’s GREAT Camps program could help. On the call, I perceived the compassion and love the staff seemed to have for their mission at the camp, and how vested they were in giving all their campers a complete experience. They were ready to sign up and complete the course.
Toward the end of the conversation, they revealed that their interest in learning about gluten-free protocol for the camp staff had to do with twins that returned every year. These twins had been diagnosed with celiac disease recently, and Camp Ogichi Daa Kwe wanted to live up to its “Strong Spirited” name and ease the girls’ mother’s concerns about sending them to camp while they were still learning the gluten-free diet. Kathy’s goal was to ensure that these young women would continue their “growth in self esteem, deep seeded friendships, and memories to last a lifetime,” and the first step in achieving this goal was becoming GREAT trained, allowing the girls to continue their summer tradition of attending Camp Ogichi Daa Kwe.
Small world, isn’t it?
Citizens Bank Park (home of my beloved Philadelphia Phillies) is my happy place; there is nothing better than hanging out at the ballpark, rooting for my team and trying to catch hot dogs from the Phillie Phanatic’s surprisingly powerful hot dog launcher. So you can imagine my excitement when I joined the NFCA team and was told to grab a ticket for Celiac Awareness Night at the Phillies game. Raising celiac awareness and watching the Phils? Count me in!
Fun Fact! The Phillie Phanatic was voted #1 mascot in the country by Forbes Magazine in 2008 and 2011.
On the day of the game, Cheryl, Suzanne, Nancy and I made our way to the ballpark to set up our display tables. We were fully equipped with brochures, flyers, and giveaways and ready to talk to people about celiac disease and the gluten-free diet. We set up near the gluten-free concession stand and were joined by two enthusiastic NFCA volunteers, Cecilia Bonaduce and Rebecca Urbano. Despite gusty winds and the strong possibility of rain, we managed to stay dry and keep our flyers on the table…well, mostly. It was an unseasonably cold night (everyone was wearing jackets in July!), but over 600 NFCA supporters still came out to celebrate Celiac Awareness Night.
Fun Fact! A portion of ticket sales for the game benefitted NFCA and will be used to help continue our programs and services.
While the tables were getting set up and the gluten-free hot dogs were cooking on the grill, Cheryl had the chance to take a tour of Citizens Bank Park with Michael Savett of Gluten Free Philly and his family. With “Celiac Awareness Night” lighting up the scoreboards and NFCA Board Member Joe Jacovini gearing up to throw out the first pitch, Cheryl and the Savetts hung out on the field and watched the Phillies’ batting practice. Michael’s son even got to meet the Phillies’ center fielder, Shane Victorino!
Fun Fact! While on the tour, Cheryl learned that the baseballs that line the walls of the Hall of Fame Club are screwed in the wrong way so they say “Rawlings,” not “Major League Baseball.”
After Joe tossed a great first pitch to the Phillie Phanatic, the park played a public service announcement on the jumbo-tron featuring pro-golfer Sarah Jane Smith talking about celiac disease. The PSA wasn’t the only gluten-free action on the jumbo-tron; check out these kids who hoped to get their fifteen minutes of fame on the big screen.
Fun Fact! Weighing in a 84,420 pounds and7,372 square feet , the jumbo-tron is so big you can see it from the highway!
Not surprisingly, the gluten-free concession stand was a major hot spot throughout the game. Unfortunately, some fan favorite foods were missing this year, so we are working with Aramark and Citizen’s Bank Park to improve gluten-free options for next year’s Celiac Awareness Night and throughout the season.
Although so many exciting things were going on at the ballpark, my favorite part was getting to meet the people who came out to show their support for NFCA. Every day, I get the opportunity to talk to the celiac community through social media, but this was the first time I had the chance to physically meet the people on the other side of the computer.
I was particularly struck by a woman who came up to the table just as we were about to leave. She started talking to me and Suzanne and told us her story of diagnosis. It turns out she had only been diagnosed with celiac about a week before the game. She was still unsure of what the gluten-free diet entailed and was barely eating for fear of becoming sick. We talked to her for a little while and loaded her up with brochures, information and other free resources. She was so grateful for the information. Meeting her was such a strong reminder of why NFCA is here, doing what we’re doing. To know that we were able to help her on the path to learning the gluten-free diet was an amazing feeling. Ironically, she bought tickets to the game before she was diagnosed, not knowing that it was Celiac Awareness Night. I guess sometimes, you’re just in the right place at the right time.
A few years ago, I caught wind of a place called Pure Tacos that serves incredible food – all gluten-free. It’s based right on the boardwalk in Ocean City, NJ, and has become a hit among the general population and those looking specifically for gluten-free eats. Now, the beachside stand has an urban outpost, with a new location that just opened in Center City Philadelphia.
Kristin and I were there for the soft opening (like a dress rehearsal) of Pure Tacos in Philadelphia, which gave us the chance to taste the tacos before anyone else. There, we met up with Michael Savett of Gluten Free Philly and Claire Baker of So, What Can You Eat? and enjoyed a carefree, finger-licking, tortilla chip dipping meal.
What’s on the menu? First, there’s your usual chicken, bean and ground beef option. Then it kicks up with Cheeseburger and Chicken & Bacon Ranch. But it’s the Premium Flavors like Orange-Chili Fish, Chipotle Beef Brisket and – my surprise favorite – Seared Mushrooms, that draw in the crowds. Each of these include two tacos on corn tortillas (you can also opt to have them over salad, nachos or rice) and topped with things like sour cream, citrus guacamole, cilantro and homemade salsa.
Now, what about that gluten-free claim? Well, one of the co-founders has celiac disease, so they went to great strides to ensure a safe place to eat. There is no gluten allowed in the facilities; in fact, employees are instructed to eat the gluten-free food that is provided at Pure Tacos or go out to eat lunch. And as is standard for restaurants, employees must wash their hands before returning to work.
When you’re used to asking question after question at restaurants, it’s a relief to find a place where you can just order what you want. For it to be tasty and under $10? That’s gold. Our group gave nods of approval as we worked our way through the tacos, dripping salsa and all. We even shared a side of guacamole, which had a light, creamy texture and a flavor I still have yet to put my finger on. Whatever, it was good.
I’ve already recommended Pure Tacos to a few local friends, and I hope to see them at Appetite for Awareness this September. I’ll remind them to bring the guac.
Tickets to Appetite for Awareness 2012 are now available. Get Early Bird pricing »
As the National Foundation for Celiac Awareness (NFCA) revs up for Appetite for Awareness in Philadelphia, we asked our local volunteer Annsley to share a few places that make this city great. Annsley is a teacher, a mom, and owner of Gluten Freedoms, a gluten-free consulting business. She also is an avid Philadelphian!
My daughter is not one to sit still (and neither am I). So, summer is the perfect time for us to play in the sun and share precious outdoor moments that don’t involve gluten.
- Go Fruit or Veggie Picking – If you’re looking for Organic, Integrated Pest Management (IMP), or just run of the mill fruit, this is the season. Strawberries have come and gone, but there are still blueberries, blackberries, raspberries, and peaches to come. At Longview Center for Agriculture, you can pick fresh veggies like kale, collards, basil, mustard greens, and thyme as well as blueberries. (They happen to also make AMAZING gluten-free smoothies). Call ahead to see if what you want to pick is still in season.
- Go Hiking or Camping – It’s easy to get caught up in the busy city life. One of the most peaceful and relaxing things we do is find a trail where we can stop, look, and listen to nature. Philadelphia has one of the largest urban park systems in the world, spanning about 10,500-acres! You can find trails close at the Horticulture Center or at the Wissahickon Valley Park, (our favorite place), that has over 50 miles of trails that follow the Wissahickon Creek. There are plenty of state parks and the Pocono Mountains have no shortage of campgrounds and cabins.
- Engage in Water Play – You can stay right in front of your home with a hose and a squirt bottle or within the neighborhood at spraygrounds, swimming pools, and creeks. In Philadelphia we are lucky to have a newly created urban wet zone called Sister Cities Park.
- Visit Frog Ponds – A city is full of wildlife; you just have to know where to find it. It’s pretty cool to watch the tadpoles swim, the camouflage frogs leap in the air, and the croaks reverberate all around. The Schuylkill Environmental Center, Wissahickon Creek at Mt. Airy Ave., Pastorious Park all have ponds with croaking frogs.
- Create a Frozen Treat – There is nothing better than a cool, sweet treat on a hot summer’s day. Once my daughter and I have picked our delicious berries, we often make them into frozen popsicles. In a pinch, we will use fruit juice or frozen fruit to make popsicles. Ice cream is also a delicious summer treat. If you don’t have an ice cream maker, there is always the fun plastic baggie method!
- Make and Play with Bubbles – Need an afternoon activity for the summer heat? Mix your own bubble mixtureand/or make your own bubble blowers out of pipe cleaners or old hangers. Of course, the store bought method is also excellent!
- Preserve or Can Fruit– I learned how to do this while spending summers with my grandma in Alabama. When we have leftover berries, we preserve them to keep that summery flavor all year round.
- Drink Tea at The Japanese Garden – Here you can come in and have tea and learn about the Japanese ritual, which is considered an art form, a spiritual discipline, and a way to socialize. In the Japanese culture, tea ceremonies have been practiced for over 450 years. Shofuso is the Japanese Garden next to Fairmount Park’s Horticulture Center in Philadelphia and it offers tea ceremonies and tea classes.
- Plant a Garden– You can plant in pots or in the ground, with seeds or buy a baby plant. Either way, it’s fun to get your hands a little dirty and to watch as your plant blossoms before your eyes. We like to plant things we can eat like herbs, tomatoes, and peas!
- Create a Lemonade Stand – Remember those youthful summer days when you made your own lemonade stand? You can squeeze your own lemons or have a quick fix with the frozen kind. It’s the perfect, refreshing, gluten-free drink.
- Bike or Rollerblade – It’s great to get out and enjoy the fresh air on your bike, scooter, or blades. Here in Philly we have a path along the Schuylkill River banks where you can bring your own set of wheels or rent them right in front of Lloyd Hall on Kelly Drive.
- Go Geocaching or Letterboxing – Both are outdoor treasure hunting games where X marks the spot. If you’re an adventurous soul who enjoys a compass and a map, Geocaching using GPS might be for you. If you’d prefer following clues, than your adventure game is Letterboxing.
- Watch the Trains – Some towns have garden railways, which are miniature worlds set up in gardens through which weather resistant model trains abound. If you are local to Philadelphia, you can watch them at Morris Arboretum or the “real” big commuter and Amtrak trains at 30th Street Station.
- Interact with Sculptures – Sculpture gardens meld the outdoors with art. All ages can interact with them, and they really spur some great conversations. We went to one at the Abington Arts Center, and my daughter stuck her hand through the mouth of the sculpture. Then she promptly told me that they were saying, “No, you may not do that!” (Wonder where she got that from!)
- Watch Outdoor Concerts and Movies – Most cities hold (FREE) outdoor concerts and outdoor movies, where you can pack a picnic and share with friends. It’s a great way to go relax, be outdoors, and enjoy the cooler night air. In Philadelphia there are multiple venues all over the city (to list a few): Pastorious Park (Chestnut Hill), Schuylkill Banks (Center City), Philly at the Movies (rotating Center City venues), Moonlight Movies in Mt. Airy, Bicycle Coalition of Greater Philadelphia’s Bike-In Movies (Center City South Street), The Awesome Fest Film Series at Liberty Lands Park (Northern Liberties), Gorgas Park Movie Night (Roxborough), Screenings Under the Stars at Penn’s Landing.
Researchers from the Celiac Center at Beth Israel Deaconess Medical Center in Boston have published a new paper on the gluten challenge. Late last week NFCA covered the recent publication in our Research News Feed – you can check out the post here.
Many are familiar with the gluten challenge as it relates to the current hot topic (or dare I say, trend?) of self-diagnosis and the implications that come along with going gluten-free before being tested for celiac disease. People often equate the words “gluten challenge” with the sentiment, “Why would I put my body through torture if I know what unpleasant symptoms to expect?” I can certainly understand this perspective as I tend to suffer from a range of unwelcome digestive disturbances when gluten has a found a way into my diet.
But, I thought I’d take this opportunity to also share my personal views on why I believe an official diagnosis of celiac disease is so crucial, both for an individual’s health and the greater field of gluten-related disorders at large. I’ve actually covered this topic before, in the early days of Celiac Central: Bits and Bites. As you can see, I feel strongly about this particular subject.
1. Expert guidance!
Celiac disease is an autoimmune disorder requiring expert management and follow-up by a knowledgeable physician. Clinicians can closely monitor a patient with celiac disease to ensure that their celiac antibodies (blood work) return to normal and can keep an eye out for unrelenting symptoms that may indicate a need for additional testing or require supplementary treatment. A dietitian skilled in the gluten-free diet can ensure that individuals with celiac disease are meeting all of their nutritional requirements and can also assist in weight management, a challenge that in recent years researchers have identified as an important topic to discuss in celiac disease management. Registered dietitians or nutritionists can also use their expertise to determine if a patient is being accidentally exposed to gluten through routes such as misinterpreted ingredient labels or cross-contamination in the home or when dining out. (Did you know that gluten exposure is the most common cause of non-responsive celiac disease?) It’s important that people understand that the gluten-free diet is complicated and requires guidance. Relying on the internet and library books alone is no replacement for a healthcare provider.
2. More expert guidance.
What’s more, if celiac disease is not properly treated or managed, a person is at risk for developing other health complications involving their bone and reproductive health, as well as some cancers. Of course, there is also the chance that a person who has implemented a gluten-free diet because they think celiac disease is the culprit, may actually not have a gluten-related disorder at all and instead have a different underlying (and untreated) condition. Just as celiac disease can mimic the symptoms of other conditions, so too can other conditions mimic the symptoms of celiac disease. For more information on this, see this handout from Quest Diagnostics: Why Not Just Go Gluten-Free?
3. It applies to your family, too.
Further, celiac disease is genetic, which means that it often runs in families. Persons who have a first or second-degree relative (i.e. parents, siblings, aunts, uncles, cousins, grandparents) diagnosed with celiac disease need to be tested for the autoimmune condition as well. It’s particularly important that family members of people with celiac disease understand that they don’t have to have the same symptoms as their relative, or in fact, any at all, in order to have celiac disease.
4. We need collaboration.
Research in the field of celiac disease and other gluten-related disorders has grown exponentially in the last decade regarding subject matters such as disease signs and symptoms and the role of the gluten-free diet. However, one puzzle piece that remains missing is the number of undiagnosed versus diagnosed patients. Sure, many estimates abound but let’s face it – these are only estimates. It is difficult to ensure that persons are accurately diagnosed and managed if they are treating a disease on their own. In order to successfully advance treatment and testing, we need the assistance of the patient population.
It’s great to see people taking responsibility for their health and implementing what they believe to be a healthy lifestyle, but I think that it’s just as important that patients recognize the important role medical providers play in the management of their health. If your current physician has refused to test you for celiac disease, don’t stop there. You can share NFCA’s free Primary Care CME with them or seek out an experienced clinician. Ask support group members for a referral and read local articles about celiac disease to see which healthcare providers are considered experts in your area.
If I haven’t convinced you to consider an official diagnosis, then I at least ask you to understand the reality of having to undergo a gluten challenge if and when you decide to consult with your physician. In other words, know what you’re getting into before you go gluten-free on your own.
I welcome an improved gluten challenge like the approach Dr. Leffler and his colleagues have studied. I expect that this new approach will bring about improved patient compliance and willingness to undergo a gluten challenge, and hope that other clinicians begin implementing this approach too.