Celiac Disease and Eating Disorders: My Story

As a professional in the field of patient advocacy, it is a natural fit to share personal insights and experiences that extend beyond the topic of celiac disease when given the right opportunity. So, during National Eating Disorders Awareness Week (NEDAwareness) I thought that I would join the country’s discussion of reducing the stigmas associated with disordered eating behaviors and body image issues.

According to the National Eating Disorders Association, an estimated 20 million women and 10 million men develop an eating disorder at some point in their life.  I am one of those 20 million women.

When I read that statistic, it is hard to wrap my head around the number of people living in discomfort and unhappiness with their bodies. After all, to quote Baz Lurhmann, who sang the infamous “Everybody’s Free (To Wear Sunscreen)” song adapted from Mary Schmich’s Chicago Tribune column, isn’t your body supposed to be “the greatest instrument you’ll ever own”?

As someone with a history of an eating disorder not otherwise specified (EDNOS), I found my diagnosis of celiac disease to be more than just a relief; it was incredibly apt, almost too coincidental of a solution. I could begin to heal my body through nutrition.

For years I lived in a fog where each day revolved around the same slew of preoccupations: food, exercise and weight. Almost immediately, my celiac disease diagnosis uprooted these thoughts and I began to view food as medicine, not the devil.

Perhaps my perspective is a sappy one. But for those living with celiac disease who still wrestle with the all-consuming preoccupations that only those with an eating disorder too often can understand, I gently encourage you to focus on the content and not the frame: it is possible to heal when food is your medicine.

To read more about celiac disease and eating disorders, check out this research recap.

You can also join the NEDAwareness conversation over on their website.

Questions? Comments? Please feel free to email me: kvoorhees@celiaccentral.org.

– Kristin

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Traveling Gluten-Free: What I’ve Learned in 3 Years

I’ve become quite an expert at traveling. As Director of Gluten-Free Industry Initiatives for the National Foundation for Celiac Awareness (NFCA), I’ve visited over 25 cities and worked in a dozen or more states within three years (my latest NFCA trip was to Atlanta, Georgia two weeks ago for the KeHE Summer Selling Show).  I can maneuver through airport security with ease and efficiency, flipping off shoes and jackets and pulling out bags of liquids and my laptop in seconds. And since I have celiac disease, traveling means “always being prepared and aware” so I’ve created a list of “must-haves” snacks, which airports have safe choices and how to find gluten-free friendly and not so friendly restaurants anywhere in the country. (I use the Find Me Gluten-Free app to sort out potential eateries. This is a dining locator not an endorsement of gluten-free options. You still need to investigate by reading the reviews, making a call and asking questions.) I’ve also had to be proactive and advocate for myself and others with gluten-related disorders when it comes to attending business dinners, conferences and events by identifying my dietary needs on conference registration forms, plus notifying event coordinators, hotel hospitality and general managers.

Udi’s Gluten-Free had lots of products on display at the KeHE Show.

This is all part of trip preparation. It takes a bit more time but I always feel it’s important to be an advocate for not only myself but for all people with gluten-related disorders. And while I’m traveling around the country, I feel it is my job and honor to be the voice for people with celiac disease everywhere by spreading education, awareness and understanding. (You may not want to sit next to me on a plane…you’ll get an earful.) I have learned that if we don’t politely ask, people may not think our dietary needs are necessary. If we don’t carefully express our needs, many may not think there are any. If we don’t calmly mention the mistake, serves and restaurants will never know there is a problem. If we don’t ask if they have completed NFCA’s GREAT Kitchens gluten-free training program, restaurant operators, chefs and servers may not think they need it. But, if we remain patient and plant the seed, the growth will come.

Enjoy Life staff were at the KeHE Show too.

Here is my list of must-have gluten-free snacks to take with me on the go:

• KIND bars
• Gluten-free crackers (If you keep these in a tin, they’re perfect for packing in a suitcase)
• Individual servings of hummus and nut butter
• Fruit
• Jerky sticks
• Cheese sticks
• Mix nuts, dried fruit, gluten-free pretzels or chocolate chips
• Go Picnic boxes (Not everything by Go Picnic is gluten-free, so be sure to check before purchasing)

Did I mention I “meet” some interesting characters on my gluten-free travels?

I’m always looking for new travel-friendly gluten-free foods. Comment below with your go-to travel snack to give me some fresh ideas!

– Beckee

Has a Special Someone Cooked Gluten-Free for You?

When I first started working at the National Foundation for Celiac Awareness (NFCA), I was terrified to cook for the team. I was still learning about the gluten-free diet, and there were two things I knew for sure: 1) There is a serious need to keep gluten-free food from getting contaminated; and 2) Avoiding that contamination can be challenging, especially when you have three gluten-eating roommates at home. So, I avoided making any offers to bring in homemade snacks for the group.

Then the team decided to have a potluck. I easily could have contributed some gluten-free products from the grocery store, but I felt this was an opportunity to get in the kitchen and make something from scratch for my co-workers.

Knowing that I wasn’t quite ready to dive into gluten-free baking, I opted for a simple, crowd-pleasing dish – what I call my Festive Fall Bake. It’s a combination of sweet potatoes, butternut squash and apples, splashed with some orange juice and baked until fork tender. Before preparing any food, I cleaned all the surfaces in my kitchen and thoroughly washed any bowls or utensils that I planned to use. I washed the baking dish and lined it with aluminum foil, just to make sure there would be no risk of gluten residue. As soon as it was done, I covered the dish with aluminum foil and stashed it on the top shelf of our fridge.

The next day, the staff raved about my Festive Fall Bake. Best of all, I was confident that I had made the food safely. Everyone enjoyed, and no one got sick.

Vegetable Spring Rolls – One of the gluten-free recipes in our “Cook for Your Love” campaign

My gluten-free cooking skills have become more and more helpful over the years, and it now hits even closer to home. Recently, one of my soon-to-be in-laws learned he has to avoid gluten for health reasons. When he came to dinner at our home, we served cheese and gluten-free crackers for appetizers; pork with mole sauce, roasted asparagus and homemade gluten-free cornbread for the main course; and ice cream with a gluten-free crumble for dessert. It was important to me that he got to enjoy the same complete meal as everyone else – no exclusions.

This month at NFCA, we’ve been hosting the “Cook for Your Love” campaign. It stems from our belief that everyone deserves a home-cooked meal, no matter what their dietary restrictions may be. You’re probably used to cooking your own gluten-free food each night, but every now and then you should be able to have someone else cook for you. So, this Valentine’s Day (or any day, really), take the opportunity to cook with a special someone and teach the ins and outs of gluten-free safety. It could be your mom, or your kids, or your best friend. Chances are, they’ll be eager to learn, and it could give them the confidence to cook gluten-free meals more often.

The gluten-free recipes on our “Cook for Your Love” campaign should be enticing enough to get your special someone in the kitchen, but if you need extra encouragement, sign up for the weekly giveaway. Nothing says “try me” like free products, right?

Has a special someone cooked a delicious gluten-free meal for you? Tell us about it (and include recipe links if you have them)!

– Cheryl

Healthy Times Ahead

[As you know, the National Foundation for Celiac Awareness staff members are big Phillies fans. So when one of our volunteers, Nadina Fraimow, told us she shared the same passion for sports, wellness and all things Phillies, we had to get her on board. Nadina will be sharing her gluten-free experiences as she follows the Phillies year-round.]

Healthy Times Ahead

A Phightin’ to Be Gluten-Free Blog

There are many reasons to love February, but Phillies Spring Training definitely tops the list.  While the excitement of team changes, athlete updates and ticket sales resonate for fans, the Phillies pitchers, catchers and position players are preparing for Clearwater, Florida in one week.  If healthy teammates translate into prospective wins, it is imperative the lineup stay off the injured list this season.  Be-Lee-ve it, healthy times are ahead for Chase Utley, Ryan Howard, Roy Halladay, Cliff Lee and the rest of the Phightin’ Phils.

For those of us Phightin’ to be gluten-free, the food we eat determines how healthy our season will be.  When it came to our wedding menu, my husband and I made no exception.

Jennifer Childress Photography

Criteria:  Kosher, gluten-free and lactose-free menu that incorporates our favorite foods and fresh ingredients.

Vision:  Beautiful presentation, delicious flavor and variety that is reflective of us and our enjoyment of healthy, delectable dishes.

Experience: Romantic, festive, memorable and a gourmet gluten-free culinary experience for our friends and family.

Our lineup for the big day included Jannette Axlerod of Food Designs and her chefs.  They had prior experience safely cooking gluten-free for affairs and were a great addition to our Fraimow-Bronstein all-star team.  Practices were rigorous with menu tastings, ingredient changes and creative food pairings.

Tuna rumaki with wasabi on pineapple and lox on gluten-free rice cracker. (We paired the tuna with a gluten-free rice cracker for our wedding day.)

Outcome:   Grand slam!  With the support of our strong, loving management team, we pulled-off a perfect win.  Our playbook now includes new dishes that we can replicate for healthy, fun times ahead.  Read below for a taste of our wedding bliss and ideas for your next party.

A sampling of Butlered Hors D’oeuvres:

• Tuna rumaki with wasabi on a gluten-free cracker
• Lox on a gluten-free cracker
• Cherry tomatoes stuffed with quinoa
• Sushi rolls

A sampling of Stations:

• Portabella bar
• Carving station, including oven roasted turkey and prime rib

 First Course:

• Spring vegetable soup with rice noodles

Intermezzo:

• Alternating strawberry kiwi and lemon sorbet

Entrees:

• Herb crusted baby lamp chops
• Grilled sea bass with mango salsa
• Vegetarian Napoleon

Accompaniments:

• Baby carrots and green asparagus
• Roasted russet potatoes

Herb crusted baby lamp chops, accompanied with baby carrots, green asparagus and roasted russet potatoes – Jennifer Childress Photography

Grilled sea bass with mango salsa, accompanied by baby carrots, green asparagus and roasted russet potatoes – Jennifer Childress Photography

About Nadina:

Nadina Fraimow began volunteering with the National Foundation for Celiac Awareness (NFCA) in April 2011.  In January 2013, Nadina was conclusively diagnosed with celiac disease by one of the nation’s leading gastroenterologists.  Prior to her diagnosis, Nadina was living gluten-free for over three years due to what was originally thought to be non-celiac gluten sensitivity.  Nadina enjoys having fun in the kitchen and creating recipes that are both tasty and healthy with her husband.  She is a Communications and Marketing professional living and working in Philadelphia.  Nadina is also a proud Penn State alumna and an avid fan of the Phillies.  She will be happy to answer messages sent to her attention at info@celiaccentral.org.

3 Tips for Coping with a Celiac Disease Diagnosis

Recently, I posted this question on the National Foundation for Celiac Awareness (NFCA) Facebook page: Do you agree that people with celiac disease or non-celiac gluten sensitivity (NCGS) can feel excluded from social life?  I posted the question after seeing an article on Celiac.com from a gluten-free college student who feels like celiac disease can isolate her from social activities.

I was blown away by the response on Facebook.  Obviously, this is a hot topic.  As of now, there are 81 comments in a thread that’s still active.  It’s so interesting to see all of these comments.  Some people adamantly disagree that celiac disease impacts their social life while others struggle to stay included in activities and events.  There were lots of parents concerned for their young children with celiac disease and the implications it has on them socially, both now and in the future.  It appears that many people believe the impact of a celiac disease diagnosis directly correlates with your attitude about the diagnosis.  Positive attitude, positive life with celiac disease.

No matter which side of the fence you fall on, there’s no denying that celiac disease changes your life once you receive the diagnosis.  Here are my top 3 tips for coping with a diagnosis of celiac disease or NCGS:

Read. Then read more.

There is no better way to navigate the gluten-free diet than to learn and understand all the ins and outs of the lifestyle.  The more you know, the more you can keep yourself in good health.  Learn what gluten is, how it affects the body in people with a gluten-related disorder, where gluten can hide and how to prevent cross-contamination.  It might sound intimidating at first, but NFCA is here to help.  Browse www.CeliacCentral.org to get started.

Get support.

Do you know one of the great things about being gluten-free?  The online community is amazing!  There are so many advocates on the internet who can help with everything from delicious gluten-free recipes to lifestyle tips.  NFCA is always around to answer questions and provide resources on Facebook, Twitter and the new Celiac Central community on Inspire.com.  Check them out to connect with other people who are living gluten-free.

Get more support.

The gluten-free diet can be confusing at first.  There are a lot of gluten-containing products out there that you might be surprised to find out actually have gluten in them.  (I was probably most surprised to find out soy sauce and some chicken broths have gluten.)  With so many things to look for on a product’s ingredient label, it can be really frustrating at first.  I highly recommend seeking support from a registered dietitian that fully understands the gluten-free diet.  They’ll help set you up with the tools and knowledge you need to get started.

If you don’t have access to a dietitian (or even if you do), check out the book Gluten-Free Diet: A Comprehensive Resource Guide by Shelley Case, RD.  It’s one of the most helpful gluten-free resources available.

Feel free to comment with some of the difficulties you’ve faced after the diagnosis and how you’ve learned to overcome them.  You’ll certainly be helping out the newly diagnosed reading this post!

– Alicia

A Great Gluten-Free Day!

Two northwestern sections of Philadelphia were jumpin’ on Saturday, January 26^th.  Weavers Way, the fabulous community owned co-op that has made a name for itself in the Philadelphia region, held its annual Gluten-Free Day from 12 until 4 p.m.

This year, the savvy folks at Weavers Way expanded the event to include both their Chestnut Hill and Mt. Airy stores.  Bettina de Caumette, Outreach Coordinator at Weavers Way, put the day together to everyone’s delight.  Frigid weather aside, the day seemed just right to explore the wonderful world of gluten-free goodies.

Thank you Bettina for putting together such an amazing day!

The National Foundation for Celiac Awareness (NFCA) was on hand in both locations to discuss the gluten-free diet and to go beyond that to the underlying need for this special approach to the menu: celiac disease and other gluten-related disorders.

The NFCA team was pleased and proud to have two long-time, stalwart and extremely knowledgeable volunteers distribute literature and answer shoppers’ questions. Becky Lownes Urbano  returned to the post she manned last year in Chestnut Hill.  Annsley Klehr took a brisk walk from home to spread the word in Mt. Airy.  Tema Esberg, a new member of the NFCA volunteer team, joined Becky in Chestnut Hill.

Big thanks to Becky and all of NFCA’s volunteers for supporting us in raising celiac disease awareness!

Chestnut Hill store manager Dean Stefano and Mt. Airy store manager Rick Spalek each donated an enormous basket of gluten-free products for a raffle benefiting NFCA. One lucky winner from each store went home with a bounty of delicious treats that will have them trying out new items and enjoying old favorites. For our part, NFCA is grateful for the donation that will go toward our educational programs.

On a normal Saturday, about 1,100 people pass through the doors of Weavers Way in Chestnut Hill. That number swells significantly on Gluten-Free Day and this year was no exception. I don’t know how many came to the Mt. Airy store but it certainly was a steady stream of eager shoppers, many with questions about gluten-free food and celiac disease.

In short, it was great!  The NFCA team is looking forward to Gluten-Free Day 2014 at Weavers Way!

– Nancy