Note from Alice: What I Learned at Harvard
Last month, I attended and graduated from Harvard Business School’s week-long Strategic Perspectives in Non-Profit Management executive education program. Working together with CEOs, executive directors and presidents of non-profit organizations from across the globe, I learned both practical and innovative leadership skills necessary to continue and expand the work that Beyond Celiac does on behalf of you, the members of our community.
Attending conferences and educational events are just a few of the many ways that the Beyond Celiac team stays sharp and learns how to best drive our mission of helping you. For this particular program, I left with three main takeaways:
- Every now and again, I take a step back and look at the bigger picture. I ask myself, “What else does the celiac disease community need?” The course gave me the opportunity to think expansively and differently about how we can keep on making life better for those with this autoimmune disease. Dedicating time for this allows for creative insights about how to lead our community in living life to the fullest and gives hope to a brighter future.
- The course taught me to take a complex problem and drive towards a new outcome. I think we can all agree that the unknowns in the celiac disease field are quite complex. By tackling challenges from new angles, we can have a very exciting impact on the field of celiac disease and accelerate solutions towards a cure.
- An organization can't have vision without actually making things happen. Working with my peers and my professors, I learned that a combination of passion and skill is essential for Beyond Celiac to continue to excel and work tirelessly on behalf of our community each and every day.
I owe a huge “thank you” to the Harvard Business School Club of Philadelphia, which gave me a scholarship for this program after an extensive application and interview process. To be accepted to the program, I had to demonstrate that Beyond Celiac already had a positive and measurable impact on the community and that we would apply the knowledge gained during the program to implement transformational changes at Beyond Celiac in order to improve the quality of life for our community.
As you know, Beyond Celiac is an evidence-based organization in everything from the research we share to the strategies we deploy to make an impact. This program not only gave me the opportunity to learn from top leaders in the non-profit arena, it also reinvigorated my conviction that Beyond Celiac must continue to lead and blaze a trail towards accelerating solutions towards a cure for celiac disease.
To living better, longer,
Beyond Celiac CEO
Back to top
Cooking with Oonagh
These are recipes that don’t require turning on the oven. Here in New Hampshire, we're getting too many days in the 90s. I know I shouldn't complain, but I hate putting the air conditioner on. My plants are very sad, and since my yard backs into conservation land and I have no pets, I’m fighting chipmunks, squirrels and other wildlife for my tomatoes.
Coconut crusted shrimp are wonderful, but they’re such a pain to keep the coconut on and to deep fry. We preferred this coconut crust on salmon, but I've also made it with tilapia for tacos and with chicken for salad. Increase the ingredients for the amount of food you're cooking. Make my Apple and Cucumber Salad with hot pepper jelly as the perfect side dish. Get the recipe.
To make the crust of this no-bake cheesecake, use your favorite gluten-free graham crackers, Oreo look-alikes or shortbread cookies. It doesn't matter how accurate you are when making the spider web pattern for the raspberry jelly topping, it will always look stunning. Watch Chef Oonagh create this cheesecake on Cooks Corner. Get the recipe.
About Chef Oonagh Williams
Chef Oonagh Williams has a culinary arts degree, was trained in London and Switzerland and has celiac disease and other food allergies. Connect with her on Facebook at Gluten Free Cooking with Oonagh, where she posts her recipes, products she's tried, appearances on ABC television, classes and conferences. Her public classes will start again in September, or you can contact her for private cooking classes and dinner parties. Remember that many real foods are naturally gluten-free until it goes through the manufacturing process. Her eCookbook, Delicious Gluten Free Cooking, has over 200 pages and full-color photos. Connect with her on Skype for advice on how to live a gluten-free and allergen-free life.
Back to top
Gluten-Free Olympics: How Do Your Favorites Stack Up?
In the spirit of the Olympic Games, we’re pitting lunchbox recipe against lunchbox recipe to see which one comes out on top. In our lunch Olympics, though, YOU get to be the deciding vote! After you vote for the best lunchbox favorites, you’ll be able to get the recipes in our Gluten-Free Back to School Toolkit, which has everything you need to get your little guys geared up for the year ahead. If you vote, you’ll be entered to win a gluten-free prize pack from Rudi’s Gluten-Free Bakery.
Back to top
New Study May Explain Gluten Sensitivity
Researchers may have uncovered a biological reason for non-celiac gluten sensitivity ('gluten sensitivity').
A study led by researchers at Columbia University may have found the biological reason some people who do not have celiac disease still get intestinal and other symptoms when they eat gluten-containing foods.
The study, published in the medical journal Gut, details the differences in immune system reactions between those who have celiac disease and those who react to gluten even though they do not have the blood, tissue and genetic markers of celiac disease. The study suggests that those with gluten sensitivity may have a weakened intestinal barrier, which leads to a body-wide inflammatory immune response.
Study co-author Peter H. Green, MD, director of the Columbia Celiac Disease Center, said in a press release that the study shows symptoms of gluten sensitivity “are not imagined, as some people have suggested.”
The study findings may lead to ways to identify patients with gluten sensitivity and to monitor their response to treatment, said study leader Armin Alaedini, PhD, assistant professor of medicine at Columbia.
You can read more about the study here.
Back to top
Back to School Resources from Beyond Celiac
Notebooks yet to be covered in doodles, pencils still topped with usable erasers, sneakers that are slightly too large (you’ll grow into them!). Back to school preparation begins this month, and parents with children on a gluten-free diet have a few extra items on their checklists, like speaking with administrators about dietary needs and stocking up on gluten-free foods to pack in lunchboxes. Our Back to School Toolkit gives you the refresher you need before the school year begins.
The toolkit includes:
- Gluten-free lunchbox checklist
- 504 Plan overview and roadmap
- Combating nutritional deficiencies in the gluten-free diet
- Lunchbox recipes
Prepping for college is stressful for any student, but when you throw a gluten-free diet into the mix, things can feel downright intimidating. Beyond Celiac created the Gluten-Free in College Toolkit to help students prepare for the year and faithfully follow the diet in a challenging environment.
Here’s a glimpse of what students will find in the toolkit:
- Where to go for support on campus
- Registering with the Office of Student Disabilities
- Knowing your rights: The Americans with Disabilities Act and what the Lesley University settlement means for you
- Living with a roommate who is not gluten-free
- Dorm-friendly food
There's a lot to think about before heading off to college. Don't get overwhelmed! Let Allergic Living keep you on track with their College To-Do List.
Photo credit: Thinkstock: Dolgachov
College dorm rooms are notoriously lacking in kitchen cooking equipment. When your only source of hot food outside of the dining hall is a microwave, you have to get creative to cook anything beyond popcorn. Here’s a guide to microwaving your way to a culinary masterpiece.
Back to top
Get the Beyond Celiac Getting Started Guide
Beyond Celiac is now offering hard copies of our comprehensive Getting Started Guides for healthcare professionals. This resource is full of over 40 pages of easy-to-read information on celiac disease and how to manage it through the gluten-free diet. Here's a sneak peek of what's inside:
- Gluten-free diet 101
- Specialty gluten-free manufacturers
- Gluten-free food labeling
- Gluten-free certification
- Guidelines for dining out
- National medical centers
- Beyond Celiac resources
- A clickable Table of Contents for easy navigation
People living with celiac disease can access the Getting Started Guide for themselves here. Be sure to tell your doctor that this resource is available for their other patients!
Back to top
Ask Sophia: How Kids Can Keep Themselves Gluten-Free at School
By Sophia Kagan, 12-year-old Beyond Celiac volunteer
Hi! I am here this August to talk to you about going back to school. The most important three things to consider are:
- Telling your teacher that you’re gluten-free
- Preparing for school parties
The most important thing to do before school starts again is to ask your parents to contact your teacher about your celiac disease. The teacher needs to know about your gluten-free diet because some materials you may work with in class could contain gluten, like glue or pasta in art class. In addition, if the teacher hands out candy on a holiday, they should know you about your dietary restriction. They could then check to make sure the candy is gluten-free and if not, substitute something else. You should always check it, too.
Another thing you could do is bring your own food to school parties. For example, if your classmates are having a birthday party, you should either bring your own candy/dessert or ask the teacher if the candy she/he is bringing is gluten-free. If the teacher doesn’t know, then having your own goodies will keep you safe. This way, you can enjoy class parties without worrying about getting sick.
Finally, you should be aware of gluten at lunchtime. Buying lunch can be tricky in many schools because the lunches are not gluten-free and cross-contact could have happened in the kitchen. I also would recommend avoiding the salad bar. Even though it may look gluten-free, it might have come in contact with gluten-y utensils or crumbs. One of the safest approaches is to pack your own lunch. Also, don’t forget to grab a napkin to wipe off any crumbs on the table from previous meals. Then, wash your hands with soap and water. Most importantly, do not trade food with anybody else; their food could contain gluten.
Thank you so much for checking out my blog! I hope you enjoyed reading it and learned something that will keep you safe and happy. I will see you in September with my next blog!
Back to top
Give Your Gluten-Free Child S.P.A.C.E. This Year
By Julie Terrana, Certified Health and Wellness Coach
Labor Day, cooler nights and football games are right around the corner. And with those comes another familiar event: Back to School. Some parents consider it the best time of the year, while other parents dread the thought of beginning homework, after-school activities and carpooling all over again. But if you are a parent with a child who has celiac disease, the most stressful task of all is packing a school lunch. Parents, always remember to give your child S.P.A.C.E. by making lunches that are: Safe, Portable, Appetizing, Child-Friendly, and Easy.
Safe: If you have several children and only one is gluten-free, you may run the risk of cross-contact when making their lunches.
Using the same knife to apply peanut butter to their gluten-free sandwich that you used for a non-gluten-free sandwich can make them ill. Using different knives, but cutting on the same cutting board without washing it before cutting the gluten-free bread can also cause cross-contact.
One way to avoid cross-contact while making your child’s gluten-free lunch is to create a drawer that is just for them. Use colored tape to give their utensils flare and have a designated color twist-tie for their bread to match. They can even have their own “Lunch Drawer” with their lunch box or brown paper bag, napkins, utensils, snacks, etc. to ensure the proper safety precautions are taken when preparing their lunch.
Portable: What is the best method to transport these lunches?
Sure, plastic baggies are great for sandwiches, but what about containers for veggies, fruit, dips or crackers? My go-to place to find such devices for transporting food is The Container Store. They have all shapes and sizes of containers that hold the smallest of dips to the several-compartment-required lunches. Make sure to get enough to last you at least 5 days and color code them for your gluten-free child to separate them from your other children’s containers. If you don't have The Container Store near you, Amazon.com and other online retailers could be helfpul too.
Appetizing: Not all gluten-free breads are created equal.
Let’s face it, while the gluten-free world has recently become far more palatable, some bread still tastes like cardboard. Not everyone likes the gluten-free versions of bread, pasta, crackers or pizza. So if your child fits into that category, what do you serve them for lunch? A go-to power lunch for me is fresh veggies cut up with some hummus, natural peanut butter or almond butter. It is crunchy, full of healthy fats, satiating and fun to mix and match different spreads with various veggies. You can even pack veggies with hummus and fruit with peanut butter as sweet treat. Kids love choices, so offering several fruits and veggies with two or three spreads will allow them the creativity to make their own favorite combinations.
Child-Friendly: Who remembers trading something from your lunchbox for something from your friend’s lunchbox?
Your child may not be able to share their lunch with classmates, so it is important to provide them with options that are kid-friendly and as close to what the other children have as possible. One of my favorite brands is Annie’s Homegrown, which has numerous gluten-free options. They have great gluten-free fruit chews, crackers, cookies and more.
Easy: There is no contest when packing lunch for your child.
It does not have to be a 4-part meal that includes fruit shaped like animals or anything that involves reheating. Keep it simple, and your child will love it. Gluten-free lunchmeat rolled with cheese and lettuce, an apple and mini bag of almonds is the perfect combination of protein, carbohydrates and healthy fats your child needs to power through the rest of the day without feeling hungry or sluggish.
Following these easy steps to create S.P.A.C.E. for your child’s lunch will start the school year off on the right foot and allow your child to be full, satisfied and, most importantly, healthy!
Julie is a Certified Health and Wellness Coach in Philadelphia. She has been a volunteer for Beyond Celiac since 2013. Living with Crohn’s Disease, Julie has had a goal to reach remission since 2009. Despite trying numerous medications, she continued experiencing severe flares that led her to being hospitalized and eventually having surgery. In the summer of 2013, Julie went gluten-free and it changed her life. She has since experienced fewer flares and was able to run a half marathon in November 2013. Julie’s journey adjusting to a gluten-free diet has led her to develop a passion for helping others adapt to a similar lifestyle changes. She shows her clients that living with dietary restrictions does not have to be difficult and teaches them to navigate the obstacles of gluten-free living with ease and grace. Physical and emotional health are the main focal points in working with clients, which has led Julie to committing to her motto, “It is not about being skinny. It’s about being your best whole self.”
Back to top
GREAT Schools Program Makes a Splash at the
National Conference for the School Nutrition Association
Being a parent of a child with celiac disease is a tough job. You have to make sure that they’re staying safe from gluten, while still teaching them how to manage the diet themselves. You worry that they’ll feel left out of social functions and you dread the day your child might give in to temptation and cheat on the diet. You worry about their health and if they are healing from the damage of undiagnosed celiac disease. The last thing you need to worry about is if your child will be exposed to gluten in the place where they spend the majority of their time: at school.
It’s this very reason that the GREAT Schools, Colleges and Camps program exists. Beyond Celiac believes every kid should have safe options when away from home. The GREAT Schools program trains all foodservice professionals in the school sector how to safely make gluten-free meals for kids with celiac disease.
From July 10-13, 2016, Beckee Moreland, Beyond Celiac Director of GREAT Kitchens, hung out at the 70th Annual National Conference for the School Nutrition Association (SNA). There, Beckee and her fellow panelist Jessie Coffey, Lincoln Public Schools Special Diets Dietitian, presented on “Gluten-Free Food Handling: What’s Your Plan?”
Here’s what they covered:
- Understanding the medical need for gluten-free
- Recognizing common and hidden sources of gluten
- Identifying gluten-free ingredient substitutions
- Cross-contact hot spots and solutions for avoiding them
Together, Beckee and Jessie educated 150 school nutrition professionals on how to keep our gluten-free kids safe and healthy.
Want your child’s school to be educated through the GREAT Schools program? Learn more about the program and get resources for talking to the school here.
Back to top
Meet the Patient and Family Advisory Council
Beyond Celiac relies on the input from everyday people living with celiac disease to make sure we’re doing everything we can to help the community live better with celiac disease. Each month, we feature members of our Patient and Family Advisory Council (PFAC) so you can learn more about the people representing your voice.
Meet Frances Marie Ng
What’s your relationship to celiac disease?
For the last 30 years, a “silent killer” called celiac disease haunted my body, soul and mind. It’s a lifelong relationship in which I never agreed to be part of. I am in a marriage to a disease that was, and at times still is, unknown to me.
Can you tell us a little bit about your path to diagnosis?
The journey of getting a proper diagnosis was exhausting, lonely and maddening. Going back and forth from one doctor to another was frustrating to the point that I was losing hope. I underwent years of blood testing, multiple misdiagnoses, scopes, radiographs, etc., only to have my physicians tell me that everything is normal and that it was all in my head. I knew it was not all in my head and finally, I was able to prove them wrong.
Can you talk about your life after diagnosis and your experiences living with celiac disease?
After my diagnosis, every aspect of my life changed. I was happy to find out that I have celiac disease and I was able to help my sister and her family receive a similar diagnosis, thereby saving them from years of suffering. Starting a gluten-free diet was one of the most difficult challenges in my life, but I was able to target other food sensitivities such as casein, soy and grains. Not a day goes by that I don’t fear the possibility of getting glutened. Living with celiac disease changed my life and made me more attuned to my body. It has opened doors to meditation, holistic alternatives, being more patient, to loving myself and to leading a healthier lifestyle, which also made me a better cook.
In your opinion, what are the biggest flaws of the gluten-free diet?
The gluten-free diet is not inherently flawed. When done correctly, it can provide proper nutrition and improves eating habits. However, some of the gluten-free processed foods that are available in the market lack diversity in taste, texture, options and nutrients. One of the most difficult obstacles and benefits has been the growth of the gluten-free diet trend. It is a boon because it has raised awareness of what a gluten-free diet is. However, it is an obstacle for the celiac disease community because our serious genetic autoimmune disease is neither understood nor taken seriously.
What are your hopes for the future, and what changes do you wish to see in the celiac disease field?
The field of gluten-free dieting is rapidly expanding. There is increased awareness and there are more and more options every day. I am optimistic for some aspects of the future that would make it better for those of us that have celiac disease or non-celiac gluten sensitivity (‘gluten sensitivity’).
Here are four things I’d like to see:
- Rapid, simple and reliable food testing (something less expensive that can be used while traveling, while at home and in restaurants)
- Clearer guidelines from the FDA on gluten-free food labeling
- Increased funding to promote research about celiac disease
- I would like to see celiac disease screening in routine health checkups
Back to top
Gluten-Free Awareness Carnival
September 22, 2016 in Pittsburgh, PA
Don’t miss the 5th Annual Gluten-Free Awareness Carnival at the University of Pittsburgh! Hosted by the campus’ Gluten-Free Awareness League, this event offers free food, raffle prizes, speakers, games and more. Learn more.
International Tampere Celiac Disease Symposium: Measuring Treatment Outcomes
November 24-26, 2016 in Tampere, Finland
The University of Tampere School of Medicine warmly welcomes medical professionals to attend the international Tampere Celiac Disease Symposium – Measuring Treatment Outcomes. Novel therapeutic approaches for celiac disease are at our doorsteps, and this scientific meeting will focus on ways to measure clinically significant gluten sensitive readouts in celiac disease and in clinical drug/device/vaccine trials. In addition, the second Maki Celiac Disease Tampere Prize (€15,000) for significant contribution to the fields of Celiac Disease and Gluten-Induced Disease Entities is awarded at the symposium. The meeting takes place parallel to the Gluten-Free Life Expo 2016 organized by the Finnish Celiac Society. Learn more.
Back to top
In the Headlines:
On the Shelves:
Back to top