Posts tagged ‘personal stories’
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.
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.
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.
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.
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!
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.
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 23rd at the Historic Strawbridge Building at 8th & 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 27th, 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.
On Sunday, July 29th, 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.
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.
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?
Celiac Disease Information, Please!
Even the slightest brush with celiac disease and other gluten-related disorders can bring questions to mind. Lots of questions. The first question usually is … where do I turn for the answers that I need right now?
Most of you know that all of the information on www.CeliacCentral.org is available free of charge and to all comers. The site covers lots of topics from “What is Celiac Disease?” to “Can I eat spelt on a gluten-free diet?” to getting the scoop on the latest research in the field.
But, from time to time, you just need to ask someone who can and will respond to you directly and personally. Enter the marvelous ladies who have volunteered to answer the questions coming to NFCA via info@CeliacCentral.org.
Last month while I was visiting my family in Virginia, I slipped away to Washington, DC, to have lunch with one of these amazing women. Gayle Wald has been ‘manning’ the info@CeliacCentral.org account for over three years, come rain or come shine. She has helped to train the new kids on the block and, undoubtedly, has dispensed answers and information to hundreds of writers with questions about their own situations.
When Gayle is not helping fellow celiac patients, she works as a professor at The George Washington University in Washington, DC, and is Chair of the Department of English there. She lives in the District with her husband and son.
At Gayle’s suggestion, we had a healthy and delicious lunch at Founding Farmers, a restaurant specializing in farm-to-table fare just a few blocks from the White House vegetable garden. And, yes, they serve gluten-free dishes.
Unbelievably, this was the first time that I had met Gayle personally. It was great fun getting to know the woman behind the email address. The National Foundation for Celiac Awareness (NFCA) is extremely fortunate to have the benefit of her experience, along with the true care and concern that all of the ‘Women of Info@’ bring to this program. I truly look forward to meeting each one personally, a neat trick as they live across the country from Pittsburgh to Wyoming to Iowa and beyond.
So, when you send NFCA an email, you will encounter one of these very special volunteers:
Rebecca Lownes Urbano
A huge thanks to them all –and to Joanne Gallagher for keeping their “on duty” schedules straight. They are maaahvelous!