Note from Alice
Happy Celiac Awareness Month!
Beyond Celiac will spend this Celiac Awareness Month looking at the invisible nature of celiac disease. Whether it’s the high rate of undiagnosed patients, the difficulty of navigating social situations while eating gluten-free, or the constant worry that food will make us sick, people with celiac disease face unique challenges to being seen and acknowledged.
We all have a story to tell about this invisibility. Celiac disease feels invisible when a friend or colleague says, “you don’t look sick,” even though you must be extremely diligent about everything you eat. The seriousness of our disease seems invisible when it’s mislabeled as an eating preference, rather than an autoimmune disease we have to self-manage for life. The challenge of following the only current treatment, the gluten-free diet, is made invisible when we tell ourselves that food “is probably fine” because we’re tired of causing a fuss or there are no other options available. And when we want to sink into our seats to make ourselves invisible each time we hear a joke about “the gluten-free fad diet” that once again turns us into a punchline.
These are just a few situations that make celiac disease an invisible illness. Everyone has experiences in navigating a world that doesn’t yet understand the realities of living with celiac disease. That’s why Beyond Celiac is taking a deeper look into the invisible nature of the disease and bringing some of those realities to light. Because it’s Celiac Awareness Month, we’re also providing you with tools to help family, friends, coworkers and anyone in your network understand the seriousness of celiac disease and the everyday realities you face while managing it.
At Beyond Celiac, we don’t limit our awareness efforts to just one month. We are acutely aware of the everyday burdens patients face, so we work year-round to ensure that those of us with celiac disease live full, healthy lives. Here are just three main areas of year-long importance to Beyond Celiac:
Community: We offer a space for individuals in our community share their diverse experiences, engage with each other through our social media pages, where people around the country (and beyond) can share, discuss, inform and lend support. We believe that building community is not just about putting people in touch with one another, but building trust. Our website serves as the go-to place for trusted information and offers a range of resources for patients throughout their lives.
Social Life: Many of us have made the decision to avoid eating outside our home no matter what the scenario. Our GREAT Kitchens and GREAT Schools programs are currently educating a wide range of staff working at restaurants, universities, schools and hospitals on how to properly make and serve safe gluten-free meals. That means increased awareness of what celiac disease is and how to safely cater to patients without sacrificing on nutrients, taste or creativity. As more places recognize the market for and importance of serving gluten-free meals, the less we have to worry about limiting our social lives.
Research: Continued research is an essential path to finding new treatments beyond the gluten-free diet. In addition to working directly with researchers, we keep the community updated with the latest research news, offer webinars to help you learn about emerging research on a deeper level and show you how to get involved in research through the Research Opt-In.
Take time this Celiac Awareness Month to reflect on how celiac disease may be an invisible illness in your life and share our video, infographics, or website with anyone who may benefit from knowing even just a little more about the hidden truths of living with celiac disease.
To living better, longer,
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Cooking with Oonagh
LEMON, ALMOND AND POPPY SEED BELGIAN WAFFLES
This recipe was inspired by a menu item, to which I adapted my regular gluten-free Belgian waffle recipe. I was always taught to use a flavor combination from a magazine, cookbook or television show and adapt one of your recipes that you know works. These waffles are great to cook for Mother's Day or anytime. They also reheat well in the toaster.
MEXICAN STYLE EGGS BENEDICT
Feliz Cinco de Mayo! This has several steps, but a lot can be done in advance. Before Easter, an online food magazine had a piece on different Eggs Benedict versions. I make a regular version and a smoked salmon version with mascarpone and roasted red pepper sauce – evil, but delicious. So I combined some of my recipes and came up with this. My husband, who is slim, ate two, so I was happy with one.
About Chef Oonagh
Chef Oonagh Williams has a culinary arts degree, celiac disease and other food allergies. She spends her time speaking and writing nationally on food for gluten-free and other specialty diets. Recently, she advised three celebrity chefs in Boston.
Chef Oonagh has various gluten-free (and other food allergy) cooking demonstrations and talks at a Health and Wellness Fair on May 14. Watch Chef Oonagh on WMUR.com on Wednesday, May 11 during the noontime news, when she will be making a quinoa tabbouleh. She will also demonstrate her quinoa tabbouleh during her gluten-free talk at the Health Fair on May 14.
Buy her Delicious Gluten Free Cooking e-book, with over 200 pages and full-color photos for only $20. Like her at Gluten Free Cooking with Oonagh on Facebook where she posts recipes, links to her New Hampshire ABC appearances and products she's found and tasted. Connect with her on Skype for help in following a restricted diet. Locally, she teaches healthier food cooking classes for everyone, as most real food is naturally gluten-free and free of many other allergens.
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Video: The Invisible Truth Behind Celiac Disease
It’s hard to live with a disease that others can’t see. Celiac disease is an invisible illness; its effects are often not easy to see. This can make it challenging to be taken seriously in day-to-day life.
Beyond Celiac wants to change all of that.
This Celiac Awareness Month, we’re launching the #60ForCeliac campaign to put a face on this invisible illness. Here’s how it works:
- Watch the video below, The Invisible Truth Behind Celiac Disease
- Share the video with your friends, family and others in your social network. Ask them to take #60ForCeliac by watching a one minute video to catch a glimpse of what it’s like to walk in your shoes.
If you share using the hashtag #60ForCeliac, you could be randomly picked to win an assortment of fun and useful gear from Beyond Celiac.
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Illustrating Celiac Disease
Did you know that 89% of people with celiac disease experience difficulty concentrating or are forgetful and groggy after gluten exposure? And that even among people following the gluten-free diet faithfully, 70% remain exposed to gluten? It’s no wonder that people with celiac disease report a higher negative impact on their quality of life than those with Type 2 diabetes, congestive heart failure, hypertension or inflammatory bowel disease.
Celiac disease is often invisible to those around us. With a series of infographics, Beyond Celiac illustrates just a few of the unseen difficulties of living with an invisible illness. Please share the truth about the invisible symptoms, pressures and burdens of living with celiac disease by sharing our infographics with others. Be sure to use the hashtag #60ForCeliac when you do.
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60 Things to Do to Raise Celiac Disease Awareness
It’s Celiac Awareness Month, and that means it’s prime time for raising awareness in your communities and networks. As part of our #60ForCeliac campaign, we’re sharing 60 ways you can raise awareness and support the cause in May and all year long.
- Watch and share our new video to show what it’s like to have celiac disease.
- Wear a green shirt – it’s the unofficial official color for celiac disease.
- Bring gluten-free snacks to work, school, etc. and talk about why you eat gluten-free.
- Tell a restaurant worker you have celiac disease instead of only asking for the gluten-free menu.
- Buy a celiac disease awareness bracelet from Bravelets (Beyond Celiac gets $10 for every purchase!).
- Leave brochures about celiac disease in your doctor’s office.
- Put a green ribbon magnet on your car.
- Share the Celiac Disease Symptoms Checklist on social media.
- Talk to your family about getting tested for celiac disease.
- Ask a restaurant, school, hospital or other foodservice establishment to take GREAT Kitchens online gluten-free training.
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Flavorful and Gluten-Free Spring Recipes
Turn Celiac Awareness Month into a celebration of delicious gluten-free meals with the Beyond Celiac free downloadable eCookbook. Keep an eye on our social media accounts throughout the month for photos of our favorite recipes.
Make the traditional Memorial Day barbeque totally gluten-free with recipes the entire family will enjoy. Here is just one menu suggestion: Crispy BBQ Chicken Wings to start, a refreshing Quinoa Cilantro Taco Salad for an extra kick of spice, Blackened Chicken with Grilled Peaches for the main dish and juicy Summer Berry Crisps to round off the meal.
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A Cure for Celiac Disease is Closer than You May Think
Many celiac disease experts agree that there could be a cure by 2025. Beyond Celiac is on a mission to drive research to forge the pathways to a cure. Until we get there, we want to ensure that you have access to safe gluten-free food and better treatment options.
Our Board of Directors has issued a fundraising challenge to last throughout May. Until May 31, all donations will have an extra financial impact.
- Any gift made will be matched dollar-for-dollar
- Any new donor (someone who has never made a gift to Beyond Celiac) will be matched $2 for every $1 donated
This Celiac Awareness Month, you can turn just $30 into $60ForCeliac with the doubling challenge. Please consider making a gift to support our work. To learn more about how your support can help and to make a donation, visit:
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Thank You to Our Sponsors!
Beyond Celiac thanks our sponsors for their year-round support, especially during this Celiac Awareness Month. Thank you for making safe gluten-free foods available to our community.
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Beyond Celiac Blogger Ambassadors Share their Experiences with Invisible Illness
Living with a disease other people can’t see can be challenging. Our Blogger Ambassadors are sharing their experiences to raise awareness throughout May.
Cindy Gordon, Vegetarian Mamma
“Living with an invisible illness and caring for a child with an invisible illness can often be overwhelming. I have found that many people do not fully understand because what we are dealing with is not often able to be seen from the outside. Finding a supportive set of friends and community has helped our family. It has given us the knowledge and courage to continue to educate and advocate. Finding support has been key for my family.”
Annette Pugliese, Best Life Gluten Free
“There are "hidden illnesses" that may piggy-back on the already known symptoms of celiac disease. If I’m exposed to gluten, the result is manifested in severe skin irritations and rashes. The itching lasts for days, even weeks. Your skin irritation can make you have sleepless nights, and wonder when it will end! Sadly, the autoimmune disease fights our bodies, "turning" on us. Despite very strict dietary measures abd taking steps to ensure a safe daily life, it is difficult. It's a constant struggle to be vigilant and stay secure and healthy.”
Jackie Ourman, Celiac and Allergy-Friendly Epicurean (C.A.F.E.)
“I’m often asked what would happen if I ate gluten. I even accidentally tasted food with flour in it in culinary school and a couple of times at work in the Bon Appétit test kitchen. Each time, everyone who knew looked at me with fear, waiting for an immediate, visible reaction. When one didn’t come, I think they were confused and maybe even wondered why I avoid gluten so strictly. I knew the symptoms would come on eventually and would last for a while.
It’s hard to articulate what happens when your body’s reaction is mostly invisible to others. My first son was born early at 1½ lbs. because he was not nourished properly in utero before I was diagnosed with celiac disease. My other son, who was not growing for one year, gained four pounds in the first six weeks after being diagnosed with celiac disease and going gluten-free. If that is not evidence enough of the damage gluten can cause to our bodies, I don’t know what is. While this disease may be invisible, the effects are real and can be devastating.”
Erica Dermer, Celiac and the Beast
“When I was little, I wish I had the superpower of invisibility. I could go anywhere, do anything I wanted, and no one would see me. Now the problem is that everyone sees me - but not the real me. Celiac disease, hypermobility syndrome, thyroid issues and a whole host of autoimmune disease are invisible. But it's not what I imagined as a kid. Instead, people look at me and say "why are you always tired?" "why can't you go hiking with us?" or, "why do you never go out anymore?" They don't see the real me - the fear I suffer about eating food prepared by someone else, getting sick when I travel and feeling tired from what this disease has done to me. I no longer want to be invisible.”
Taylor Miller, Gluten Away
“As someone who is in the last of his teen years and now becoming a young adult, I’ve ventured through dealing with invisible illnesses at a young age. Celiac disease is just one of the many invisible illnesses that I have, but it was still hard to deal with as a teenager. In high school, it was hard to find friends to relate to or friends who understood. I would often get mistaken as “lazy” or someone who is “antisocial” on the days where I would be glutened or affected by celiac disease. Since it is an invisible illness after all, most people don’t see the actual effects celiac disease has on a person on the inside when they do consume gluten. I know this is hard for anyone at any age, but as a kid or teenager, it can make growing up a lot harder. I’m hopeful that the #60ForCeliac campaign can shed some light on what we all deal with as someone with an invisible illness. Whether it be celiac disease or something else, there’s no way to tell what someone is dealing with from the outside. We could all use a little awareness to help others understand, and I believe that this campaign is something to help with just that.”
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Blogger Force: Helping Others See Invisible Illness
Gluten-free bloggers are the heart and soul of the online celiac disease community. They advocate, offer advice and share tips for living the best gluten-free lifestyle possible. The bloggers remind us to laugh and they generously go through the gluten-free cooking trial-and-error process so others don’t have to. They keep up-to-date on the news and help get you the information you need. This May, they’re helping Beyond Celiac reach as many people as possible to show the faces of invisible illness: yours.
Beyond Celiac sincerely thanks our Blogger Ambassadors for their year round support:
We would also like to thank the bloggers who have teamed with us this May as the Celiac Awareness Month Blogger Force!
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Food Allergy Action Month 2016
It's also Food Allergy Action Month!
Food allergies affect 1 in 13 children and are increasing in prevalence. This May, Food Allergy Research & Education (FARE), the nation’s leading advocacy organization dedicated to food allergy, is encouraging Americans to “React with Respect” during Food Allergy Action Month to reinforce the severity of food allergy and foster respect and empathy for those affected. Learn more about food allergies and anaphylaxis and how you can get involved.
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Look for Beyond Celiac in Airports across the Country!
The Beyond Celiac public service announcement (PSA), Seriously, Celiac Disease, will be playing on the CNN network in airports around the US. The campaign shows people who are diagnosed with celiac disease how to have the right conversation with their relatives about their genetic risk for celiac disease. Let us know if you see it! Take a picture and share it using the #TalkTellTest hashtag.
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Share Your Concerns about Arsenic in Rice
Have you been following the issue of arsenic in rice? It’s a hot topic in the celiac disease community. It’s been found that rice contains varying amounts of arsenic, depending on a variety of factors. Arsenic is a naturally occurring metal that is harmful to people.
Why is it an issue? There is a concern about the quantity of arsenic being consumed by people in the gluten-free community. That’s because rice is a staple in the gluten-free diet and many of the alternative products are rice-based, so people with celiac disease tend to eat more rice than the average American.
Kristin Voorhees, MA, Beyond Celiac Director of Healthcare Initiatives is collaborating with researchers and other celiac disease advocacy groups:
- Dartmouth College
- Dr. Daniel Leffler, of the Celiac Center at Beth Israel Deaconess Medical Center and member of the Beyond Celiac Scientific/Medical Advisory Council
- Tricia Thompson, MS, RD of Gluten Free Dietitian
- Marilyn Geller of the Celiac Disease Foundation
Researchers are looking to understand your concerns about arsenic in rice and incorporate your concerns into a future study about its effects on the celiac disease community. Please take the survey below to share your concerns about arsenic in your own diet. This is an important opportunity to tell researchers which studies are important to you and your family.
Allergic Living Sneak Peek
Celiac’s Evolution: The Mind-Boggling Rise of Non-Gut Symptoms
On a crisp October morning in 2014, Betsy Robbins waited impatiently in the hospital recovery room with her still-groggy husband, who 30 minutes earlier had undergone an intestinal biopsy. She looked up, expectant, when the gastroenterologist entered the room.
“Your husband either has intestinal cancer or celiac disease,” he said bluntly. “The odds are that it’s celiac disease. We have to wait for the lab results, though.”
Celiac what? Betsy was completely thrown for a loop by the news.
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Greater Philly Gluten-Free Expo
Saturday, May 21, 2016, Oaks, PA
The first annual Greater Philly Gluten-Free Expo will take place at the Greater Philly Expo Center in Oaks, PA. It will include local and national exhibitors, educational presentations, door prizes and gluten-free samples. The Expo will be open to the public from 10:30 a.m. to 4:00 p.m.
Speakers at the event include Gluten Free Philly website publisher Michael Savett, Wegmans nutritionist Marda Heuman, author Jennifer Fugo and Beyond Celiac CEO Alice Bast. Alice will speak at 11:00 am, so be sure to get to the Expo early. Beyond Celiac will also have a booth – be sure to stop by and meet the team!
Third Annual Silly Acts for Celiacs
Saturday, June 4, 2016, Woodstown, NJ
Join Mikayla Morell at the 3rd Annual Silly Acts for Celiac fundraising event, which will take place on June 4 at 2 Lamplighter Drive, Woodstown, NJ. Come on out for a fun day to see talented local acts perform their silly acts to raise money for celiac disease awareness! Silly Acts for Celiac resembles a talent show in which local performers showcase their talents to raise money for an amazing cause.
Donate or come out to this event and get more people diagnosed with celiac disease. Admission is only $7.00 by cash or check at the door. However, there will be additional items being sold and other activities you may want to participate in so come prepared.
Register here today.
2016 Canadian Celiac Association Conference
June 24-26, 2016, St. John's, Newfoundland and Labrador, Canada
Canada’s breathtaking east coast beckons! The Canadian Celiac Association’s 2016 national conference will be held June 24-26, 2016 at the Holiday Inn in St. John's, Newfoundland and Labrador, on Canada’s eastern tip.
The keynote speaker is leading celiac disease researcher Dr. Daniel Leffler, Beyond Celiac Scientific/Medical Advisory Council member and Director of Research at the Celiac Center at Beth Israel Deaconess Medical Center. The conference also will welcome numerous other fascinating presenters, including Erin Smith (the Gluten-Free Globetrotter), speaking about her many years of gluten-free travel and offering advice and useful pointers. Other pertinent topics to be addressed at the conference include celiac disease and osteoporosis, the pediatric and family doctor perspectives on celiac disease, a dietetic presentation and the lighter side with Patrick Ledwell, a celiac stand-up comedian who has appeared on Canada’s national public radio.
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