When Life Hands You Lemons…

The following is a guest post by Dhanu Thiyagarajan, a student at University of Pittsburgh and founder of Gluten Free My Campus, the university’s gluten-free student group.  Dhanu is also a Campus Ambassador for Udi’s Gluten Free Foods. 

Being gluten-free is difficult, but being a gluten-free college student is even harder. I found this out the hard way – from experience. I came to University of Pittsburgh unaware of the city, college-life and, worst of all, where to get safe gluten-free food.

I did come under one assumption that turned out to be very wrong; I believed that there would be a gluten-free club. So many people are gluten-free and especially on a college campus in the city, how could there not be a gathered group of people who know the best gluten-free restaurants and the inside secrets? Once I got there, I realized this club didn’t exist and that scared me a lot.  I wasn’t sure why there wouldn’t be a group on campus.  Was I the only gluten-free student?  Was finding gluten-free food so easy that there was no need for a special group or club?

I gave the situation some time, but finding gluten-free options was terribly difficult. This led me to think there couldn’t be any other gluten-free students, but statistically that made no sense. So, I decided to form the club myself.  It didn’t exist, but it needed to. The university needed improvements and I needed help finding gluten-free options. I talked to the nutritionist and the chef at the dining hall (among other people) and found ways that I could connect with other gluten-free people on campus. I was able to engage roughly 10 people and set up a casual meeting.

The day of the meeting came, and I was so excited to meet these other people and talk about the struggles of being gluten-free on campus.  To my dismay, nobody came.  Not a single person.  I figured they didn’t have any problems being gluten-free, and that this didn’t matter to them.

Thankfully, my parents and friends convinced me to try again, so I did. This time, fellow gluten-free students came to the meeting!  I am so glad they convinced me to give it a second try, because now Pitt has a fantastic gluten-free club: Gluten Free My Campus!

It all worked out in the end; meet the officers of Gluten Free My Campus!

Have you had a similar experience, or do you know a gluten-free student who did?  I’d love to know what their experiences are like on other campuses!

- Dhanu

I’m a Food Stylist for the Food Network, and I Have Celiac Disease

The following is a guest post by Jaqueline Yngvason, a freelance food stylist, culinary producer and host of an online cooking show. Jaquy has celiac disease and multiple food allergies and is determined to bring awareness to these special dietary needs.

Since I can remember, growing up meant weekly visits to the emergency room, handfuls of pain medications and strong shots. In my half Icelandic, half Ecuadorean world, this seemed normal, but I would grow up to find out otherwise. While my brother and sister were outside playing with their friends, I was forced to hide from the sun, spending a large portion of my time sick in bed with excruciating migraines.

At the age of 16, after years of going to countless doctors who couldn’t seem to figure out what was wrong with me, I finally found out that I was sensitive to gluten. It wasn’t until I was 24 that I was fully diagnosed as having celiac disease. After that, my relationship with food was forever changed. I had to turn away from all of the foods that I loved and savored; wheat, eggs and dairy had to go, or I would continue to feel sick all of the time.

When I was first diagnosed with gluten sensitivity, there wasn’t much information on the subject and I was pushed to experiment and learn how to cook for myself to avoid eating out and getting sick. It was then that cooking went from a hobby to a healthy obsession, finding inspiration in recreating dishes that I once loved and transforming them in to something I could safely eat.

Shortly after college, not being satisfied with the current state of gluten-free awareness, I started my own health company to teach others in need.  Feeling that I still had a lot to learn about proper handling of food and technique, I enrolled in culinary school at Le Cordon Bleu in Oregon. Looking back, for someone like me, going to a French culinary school may not have been the most logical choice. But, I was a newly diagnosed celiac, and I wanted to learn the only way that any chef does from cooking… by tasting.

If you don’t know much about French culinary schooling, let’s just say they didn’t understand how to deal with my multiple food allergies. I ostracized by my teachers and peers, and encouraged to drop out because I did not belong. But like all hurdles in my life, I pushed on and became stronger. Going into baking and patisserie classes wearing a breathing mask, goggles and latex gloves to protect myself and further my culinary knowledge was necessary. I would find a way to flourish no matter what they threw at me, all in the name of furthering my awareness of food. Living with severe food allergies is strangely similar to boxing; no one gets to the top without taking a beating.

After culinary school, I headed to another place that left me feeling isolated: the Food Network. Again, I pushed through and went from being an intern to producing some of the Food Network’s top shows and food styling major commercials all in under one year.

Currently I live in New York City, working as a freelance food stylist, culinary producer and allergy friendly cooking show host (see one of my videos above!), always working to share my knowledge and learn from others along the way. Looking back at all of the pain and suffering I subjected myself to, I now know that it wasn’t all for nothing. Being gluten-free and having celiac disease isn’t a curse or a fad; it’s a blessing, and with the proper knowledge and understanding, you can live an extremely fulfilling life using food in a positive way.

My goal in life is to spread celiac and food allergy awareness to those similar to me who feel isolated and alone. The world can be changed through food, making it a better place not just for those with celiac disease, but for everyone.

- Jaquy

Gluten-Free Campus Carnival: A Success Story

The following is a guest post by Dhanu Thiyagarajan, a sophomore at University of Pittsburgh and founder of Gluten Free My Campus, the university’s gluten-free student group.

October 16, 2012 was a great day for Gluten Free My Campus, University of Pittsburgh’s Gluten Free club. With tons of planning since the month of May, the club was able to host a wonderful Gluten-Free Awareness Carnival for the entire UPitt campus. The carnival consisted of more than 20 gluten-free related companies/organizations either in attendance or providing materials, and several gluten-free related carnival games for the students to enjoy while learning what gluten-free means! Between learning about various gluten-free companies, gaining gluten-free knowledge from the games, enjoying the free food and earning raffle tickets for our wonderful raffle prizes, the carnival was a great success with more than 500 Pitt students and faculty in attendance.

The officers of Gluten Free My Campus

Planning started with brainstorming a list of companies and organizations on and off campus that we thought would enjoy being a part of our event and would help our goal to spread awareness – and of course, those companies have great gluten-free options! After contacting all of these companies/organizations, we got many replies and of course some rejections as well. It was a great honor to have all of these companies trusting a club on a college campus to host this kind of event, and we were glad to build contacts with such people, too. Susannah Faulkner from Udi’s Gluten-Free Foods was also a great contact who put us in contact with several other gluten-free companies that helped us out greatly.

Our first Gluten-Free Awareness Carnival was a big success!

This event could have not been such a great success without the support of other campus organizations and the members of the club. Getting companies to attend is one very important aspect, but getting people to come and enjoy the carnival is the biggest and most important part of this kind of event. We were able to get many organizations and companies to post our carnival’s flyer on their website along with local companies posting the flyer in their stores. We also posted flyers all over UPitt’s campus and had club members spread the word in person and through texting. We also had a Facebook event inviting much of Pitt’s campus. We had many campus organizations helping us out, specifically Sigma Gamma Gamma, a service sorority that provided us with most of the volunteers needed for the event.

Thank you to all the companies that donated prizes for our raffle!

For the future, we hope to expand our array of companies/organizations, and of course increase our attendance by spreading the word even more! With the support of these companies, campus organizations and of course all of our attendees, we were able to host our first Gluten-Free Awareness Carnival of hopefully many, and it was a great success. This was a day that Gluten Free My Campus will never forget!

- Dhanu

Why This Gluten-Free Entrepreneur Caught Our Eye

Last week, I received an email from Benny Solomon, the founder of celiac and gluten-free resource website called OnTrackCeliac. The website is still in its infancy, but the goal is to include restaurant listings, product recommendations and other tools for living gluten-free. Nothing out of the ordinary, but here’s what caught my attention: Benny is only 14 years old.

After reading Benny’s email, I just had to find out how a teenager decided to shelve some of his social time and spend it developing a gluten-free resource.

NFCA: What inspired you to start OnTrackCeliac?

Benny Solomon: I was diagnosed with celiac disease in late 2009, and immediately switched to a completely gluten-free diet.  Within days, I noticed that many people knew what eating gluten-free was, but had no knowledge of cross-contamination.  I did not feel comfortable eating out and not knowing what was happening in the restaurant’s kitchen.  I realized that most places did not fully understand celiac disease.

For about a year and a half, I refused to go to more than about four different restaurants that I felt comfortable in, simply because I didn’t know which ones I could trust.  It was at this time that I realized that those with celiac needed a place to go to be sure that there was no need to worry.

Many websites have huge, outdated lists of restaurants with gluten-free menus.  If you were to go to about half of the restaurants on those lists, you would find that most of the staff has no familiarity with celiac.  People with celiac disease needed a place to find gluten-free options that were reliable and where they did not have to worry about cross-contamination.  In February of 2011, I started OnTrackCeliac to satisfy this need.

NFCA: Why did you decide to do a restaurant and food finder?

BS: I wanted to work with restaurants and foods since they are the base of starting a gluten-free diet.  My plan was to develop more resources around these two categories over time.

This was not my first time making a website or app, but it was the first time that I seriously took on a technology-related task.  For a few years I worked on a few iPhone games, and later I ran a small website that featured “the best videos on YouTube.”  OnTrackCeliac truly felt like an idea where I could apply my computer experience to something I am passionate about.

NFCA: How do you choose the restaurants that you feature?

BS: My policy is that any restaurant that is safe for people with celiac disease should be listed on OnTrackCeliac.  I don’t exclude any restaurants for quality of the food, or any other reasons.  I try to provide as many options for restaurants as possible, as there are very few that have a strong knowledge of celiac.  Although the main focus is on gluten-free safety, I will be starting a new star system, so that restaurants that have exceptional food and go above and beyond expectations will be recognized.

NFCA: How do you create your list of gluten-free foods on the website?

BS: When creating a list of gluten-free foods, I generally start by exploring the company’s website.  I try and ask myself if the company looks reliable, and if they are promoting gluten-free foods.  If they actively publish a list of gluten-free foods, that becomes a strong indicator of the company’s reliability.  If not, I generally call companies to find out if they have a list of gluten-free foods, but do not publish it online.

The company must show significant knowledge to pass the test and make it onto the site, and if they do not have any apparent efforts for showing which products have gluten and which do not, they do not make the cut.

NFCA: How do you juggle this project with school and other activities?

BS: Working OnTrackCeliac development into my schedule is certainly difficult.  I generally don’t work on the site every day (after homework is done); instead, I find that I work best when a large chunk of time is available.  On a break from school, for example, I sometimes sit down and work on the website for 3-4 hours a day.  I do give OnTrackCeliac a quick check every day though, just to make sure nothing has gone wrong, and that everything is working smoothly.

NFCA: Some people get discouraged about having to live gluten-free. You seem to have a passion for it. How do you stay so positive?

BS: I have mixed feelings towards having celiac disease.  At times, I like having it, because it gives me something that I feel is unique to me in the way that I deal with it. At other times, I do experience frustration, such as on trips and when I go to a restaurant at a last minute’s notice.  The way that I stay so positive is by knowing that OnTrackCeliac helps other people.  By encouraging people to stay informed about celiac, we can only encourage progress for the future.

For the first year I worried about having celiac, but realized that worrying wasn’t getting me anywhere.  By educating others, I hope that someday celiac will not be a burden at all on my lifestyle, and I am motivated to teach others to have the same outlook on eating gluten-free.

NFCA: What advice do you have for teens who feel tempted to cheat on their gluten-free diet?

BS: To any teens with celiac that want to cheat, I would say it’s simply not worth it.  After having spent the first part of my life eating gluten without knowledge of celiac, I can assure anyone that the best substitutes for gluten-free are just as good as regular food.  The trick is you have to find the best (I cannot stress that enough) brands. For example, there are hundreds of gluten-free breads out there, but in my opinion, only about two of the brands taste like “normal.”

Cheating might not initially seem like a big deal, but the long-term consequences are extremely serious.  There is nothing to gain from eating gluten.  Set a goal for yourself to not eat gluten, and reward yourself when you reach points along the timeline (but not with eating gluten!).  If you ever need advice on the best foods, check out OnTrackCeliac’s food page!

NFCA: Is OnTrackCeliac something you’d like to turn into a career?

BS: At this point in development, I hope for OnTrackCeliac to become even more of a resource for people with celiac disease.  I would like my career to be somewhere along the lines of what my website strives to accomplish, but I just can’t predict what lies ahead.  I hope that OnTrackCeliac has a long future, and I want people to have the mindset that it encourages:  To embrace celiac, find reliable ways to live your gluten-free life, and educate others.

Top 5 Things To Know About Being Gluten-Free Before Applying to Colleges

The following is a guest post by Dhanu Thiyagarajan, a sophomore at University of Pittsburgh and founder of Gluten Free My Campus, the university’s gluten-free student group. Dhanu is studying bioengineering and hopes to go to medical school to become an OB/GYN doctor. She has been gluten-free since December 2010.

Applying to college is a hard decision on its own, but it’s even harder being a college student on a gluten-free diet. These are five things that I found to be really important regarding the gluten-free diet when applying to colleges.

1. On-Campus DiningThe dining halls and areas on campus should have safe gluten-free options available for you. It is very important to know that those who are cooking your food know how important it is to avoid cross-contamination.  If the college can’t offer this for you, make sure you can cancel your meal plan.
   

   Ask if there’s a gluten-free student group on campus.

2. Student Health CenterTalking to the dietitian is helpful, so they can help with your diet and can inform you accordingly of any updates regarding the gluten-free options on your campus. Make sure the health center accepts your insurance and can help you in case you get sick from accidental gluten ingestion or in general.
3. Living in a DormIt is good to know what appliances are allowed in your dorm room.   A fridge with a freezer is your best friend!
4. Campus SupportHaving a gluten-free club on campus is wonderful because you know there is support on campus, and people to help you with this adjustment.  Also, knowing if there is a decent amount of people on a gluten-free diet will allow you to be more confident that gluten-free living there is possible.
5. Off-campus restaurantsSocializing with friends is a huge part of a college lifestyle and a lot of that is done during meals.  It is good to make sure that there are restaurants around where you can go, eat and socialize safely.

Different people have different needs for college, so it is important to prioritize your needs and choose your colleges accordingly.

- Dhanu

Celebrate Celiac Awareness Day

Celebrate Celiac Awareness Day

Today is National Celiac Awareness Day, and I for one am incredibly excited.  Our mission at NFCA is to raise awareness of celiac disease and other gluten-related disorders, so a day dedicated solely to our mission is pretty exciting.

We are celebrating Celiac Awareness Day by announcing the Grand Prize winner of our first-ever Gluten-Free Pantry Raid.  (Meet the winner here.) Our friend Jehangir Mehta who was a finalist on “Next Iron Chef” and will compete again in the upcoming season, is hosting a Celiac Awareness Day dinner at his New York City Restaurant, Mehtaphor.  You can join in on the celebration, too!  Stuck for an idea?  Check out these ways to do your part to raise celiac awareness.

Share the Celiac Disease Symptoms Checklist

This one is simple.  Head to NFCA’s website and download the Celiac Disease Symptoms Checklist.  Print it out and give to your friends and family, or share the link through e-mail, Twitter, Facebook, Google+ or whatever social networking site you prefer.  An estimated 3 million Americans are living with celiac disease, but 85% of them remain misdiagnosed or undiagnosed.  By sharing the symptoms checklist, you can make a huge difference in the lives of people who may still be undiagnosed!

Bake a Gluten-Free Cake

Or cupcake.  Share your gluten-free creation with your friends, family, coworkers, neighbors, whoever!  Your delicious cake will be a big hit and will open up the door to talking to people about celiac disease and the gluten-free diet.

Wear Green

Green is the official color for celiac disease, so sport a green shirt, tie, dress, shoes, or whatever green accessory you can get your hands on.  Be sure to tell everyone why you’re rocking your green gear.

Change Your Profile Pictures

Change your Facebook or Twitter photo to the NFCA logo (you can grab it from our Facebook page) or upload a picture of yourself decked out in your green gear.  Then…

Update Your Status

Tell all your friends that it’s Celiac Awareness Day by updating your status and telling them so.  You can even toss in a few facts to help people understand the autoimmune disease:

• Celiac disease affects 1 in 133 Americans, but 85% of them are misdiagnosed or undiagnosed.
• There are no pharmaceutical cures for celiac.  The only treatment available is a gluten-free diet.
• On average, it takes 6-10 years for a person with celiac disease to get an accurate diagnosis in the United States.

Get more fast facts here.

Buy a Ticket for Appetite for Awareness

Appetite for Awareness is NFCA’s signature gluten-free event hosted at the Historic Strawbridge Building in Center City, Philadelphia on September 23.  The event is packed with gluten-free food, live chef demos, giveaways and free samples from local vendors.  If you don’t live in the Philly area, you can still support NFCA with a donation (even a dollar helps!) or sign up for the newsletter so you can stay on top of all the latest celiac and gluten-free news.

Make a Celiac Advocate a Health Hero

Our founder Alice Bast is a semi-finalist in the Be Well Philly Health Hero Challenge.  It’s a voting contest from Philadelphia magazine’s health blog that honors people making a contribution to health in the Philly area.  Even if you don’t live in Philly, you can still vote.  A win for Alice would help launch celiac into the spotlight even more.  Voting only takes a minute and you can vote for her once daily until Monday, September 17.

Experiment with New Gluten-Free Ingredients

Think outside the box with your recipes and try using a different ingredient that you’ve never tried before.  There are a lot of delicious and nutritious gluten-free recipes out there that go beyond plain ol’ chicken and veggies.  NFCA has entire recipe boxes dedicated to giving you some gluten-free cooking inspiration.  Invite your friends over to share in the cooking experiment and use it as a chance to talk to them about celiac disease.

So what will you do for Celiac Awareness Day?  Leave a comment or tell me on Facebook.

Happy Celiac Awareness Day!

-          Alicia

Two Gluten-Free Parties with GREAT Gals

In July, I had two golden opportunities to celebrate the generosity of personal friends and friends of the National Foundation for Celiac Awareness (NFCA).

We all love a party but some of us are really good at throwing one of the biggest parties in town. Meet Chris Auman, a member of the NFCA Team who has worked on our events since the day she walked in the door years ago. Chris has been a huge part of the energy and organizational power behind Appetite for Awareness as this fun-and-food-filled event has grown from an intimate evening in a private home to the festival that we enjoy today.

Right now, Chris is organizing the Marketplace for Appetite for Awareness 2012 being held on September 23^rd at the Historic Strawbridge Building at 8^th & Markets Streets in Philadelphia. If you want to have loads of gluten-free fun, come on down. Chris will be ready for you.

On July 27^th, we held a party of a different kind when we celebrated Chris’ birthday.  Alice Bast, Chris and I headed to Cantina Feliz in Fort Washington where we enjoyed a delicious gluten-free Mexican meal. The gazpacho with watermelon, tomato, cucumber, a house specialty, was a big hit at the birthday table.

Alice, Chris and me after our delicious gluten-free Mexican meal. That’s Chris on the right.

On Sunday, July 29^th, I made my way from my home in Blue Bell, PA to the absolutely fascinating home of Jennifer and Ken Arters in Downingtown, PA. Jen was holding an in-home shopping spree benefiting NFCA. Featuring jewelry from Stella & Dot, along with fabric purses and bags of all kinds from Thirty-One, this trunk show was like Christmas in July, as far as I was concerned. Temptation was everywhere.  Yes, I succumbed!

Jen prepared delicious gluten-free treats from tasty miniature meatballs to fabulous mini red velvet cupcakes. And, yes, I succumbed.

A big thank you to Jen for hosting the party benefiting NFCA!

Jen and Kenny showcased these delightful gifts in their 1850s house lovingly being brought back to its former glory.  Restoration is hard work designed for talented and skilled people with a passion for making things better. Jen and Kenny have an equal passion for raising awareness of celiac disease. All of us at NFCA are grateful for their spirit of volunteerism and their dedication to the celiac cause.  You will see them at Appetite for Awareness – helping out, of course.

So many celiac resources!

- Nancy

Get tickets to Appetite for Awareness »

A GREAT Coincidence

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.

The camp sure looks like fun!
Photo credit: Camp Ogichi Daa Kwe Facebook page

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?

- Beckee

15 Cheap Gluten-Free Things To Do This Summer In and Around Philadelphia

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.

1. 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.
   

   My daughter and I picking blueberries.

2. 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.
   

   Hiking the Wissahickon Trail

3. 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.
   

   The girls cooling off in their ducky float.

4. 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.
   
   

   We spotted a frog!

5. 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!
   

   Homemade Popsicles

6. 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!
   

   Blowing bubbles

7. 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.
   

   Our preserved strawberries

8. 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.
9. 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!
   

   Planting peas in the garden

10. 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.
11. 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.
    
    

    Biking on the sidewalk

12. 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.
    

    Going letterboxing

13. 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 30^th Street Station.
    

    Watching the trains at Morris Arboretum

14. 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!)
    

    Interacting with the sculptures in the garden.

15. 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.

- Annsley

Spring Recap: Traveling for Celiac Disease Education and Advocacy

This past spring was jam packed with business travels. There were times when I felt as if my “out of office” auto response would be up forever! So, it’s safe to say that I have good reason for being MIA on the staff blog. Let me backtrack so I can keep everyone in the loop.

Starting in February, Alice and I traveled to Orlando to participate in the American College of Preventive Medicine’s (ACPM) 2012 annual meeting. When we weren’t exhibiting at NFCA’s booth, where we explained the importance of patients not going gluten-free before being tested for celiac disease and clarified that yes, gluten sensitivity is real, we sat in on lectures from leading preventive medicine experts like Dr. Mark Hyman and learned how media outlets determine what news gets covered.

NFCA’s booth at ACPM 2012

After that, it was back to the Northeast for another round of conferences. Cheryl joined me in attending Columbia University’s Intestinal Immune-Based Inflammatory Diseases Symposium where we snacked on fresh rolls from Free Bread Inc. (a personal new favorite!). The Celiac Disease Center at Columbia University continually organizes meetings that are educational and fun, allowing for the providers and patients to mingle. And, of course, it’s always a pleasure catching up with experts like Dr. Jonas Ludvigsson. You can read a recap of Cheryl’s experience and catch an interview I held with Dr. Ludvigsson after we parted ways in March.

Special note: While listening to some of the world’s finest celiac experts discuss topics such as the emergence of non-celiac gluten sensitivity and the role of the PillCam in the diagnosis and management of celiac disease, I learned the exciting news that an abstract from the NFCA was accepted for a poster presentation at the International Meeting on Coeliac Disease, Mastering the Coeliac Condition: From Medicine to Social Sciences and Food Technology. After months collaborating with the Celiac Center at Beth Israel Deaconess Medical Center and the Lankenau Institute for Medical Research on the data collection and analysis of the study “The Use of Disease Symptoms Checklist in Self-Initiated Diagnoses of Celiac Disease and Non-Celiac Gluten Sensitivity,” it was great to hear that our work would be recognized. (And judging from the theme of this post, if you think that my spring travels also involved a trip to Florence, Italy, you are correct. Watch out for my recap later this week).

Our Awareness All-Star fundraiser Jack Simpson and his mom Cheryl Lynne joined us at the DDNC Public Policy Forum.

The very next morning after returning from NYC, I hopped on a train to Washington, DC, to meet up with Alice and participate in the Digestive Disease National Coalition’s (DDNC) 2012 Public Policy Forum. This was my second time joining in the annual meeting where patients, industry representatives, healthcare providers, lawmakers and their legislative staff come together for two days of educational programs, legislative updates and advocacy training. Each year, the Digestive Disease National Coalition (DDNC) briefs participants from around the country on Federal healthcare legislation and policy and provide the opportunity to educate Members of Congress on issues of concern to the digestive disease community. In essence, it provides an opportunity to see the government in action.

This year, our colleagues from The Children’s Hospital of Philadelphia’s Center for Celiac Disease joined the Public Policy Form. It was great to have NFCA Scientific/Medical Advisory Board Member Dr. Ritu Verma and Patricia A. Bierly, CRNP, on hand to share the clinical perspective of celiac disease with legislators.

Stay tuned for more tales from my spring travels, including:

• Mastering the Coeliac Condition: From Medicine to Social Sciences and Food Technology in Florence, Italy
• Arkansas Dietetic Association’s (ArDA) Annual Meeting and Expo and the Long-Term Care Seminar in Little Rock, AR
• Research presentation from graduate student of Emerson College’s Health Communications program in Boston, MA
• 2012 Digestive Disease Week in San Diego, CA

- Kristin