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Celiac Awareness Month 2015: Focusing on the Genetic Autoimmune Disease, Not Its Treatment
Sometimes I count my age in years BC and AD – Before Celiac and After Diagnosis, with Celiac Awareness Month in May each year serving as the benchmark for tracking the passing time. From where I stood in my BC years as an active girl and young woman, I never would have guessed that my life story would unfold as it has. The middle time, after the onset of my symptoms and before I got diagnosed with celiac disease, was a span of years that essentially left me in limbo. Life unfolded around me and I should have been in my prime, but I thought I was dying. Just look at NFCA’s Celiac Disease Symptoms Checklist - I coped with many of the symptoms.
I finally got diagnosed with celiac disease in 1993. Since then, I’ve worked to spread awareness of this serious and often devastating genetic autoimmune disease. In the last 23 years, I must have told my own story – that of a full-term stillbirth and three miscarriages along with a host of other problems – a thousand times. Maybe more. And I’ll keep on telling it. Sometimes, I still cry. Nothing is more powerful than a story, believe me, I know! And we at the National Foundation for Celiac Awareness (NFCA) will keep asking you to share yours. Only through our stories can we convey how serious celiac disease is.
At NFCA’s 2015 Research Summit in April, we introduced people with various celiac disease journeys from different walks of life to important and rising experts and professionals in today’s celiac disease research arena. Their stories – our stories – about the daily, constant burden of self-managing our disease were a real eye opener for some. The researchers got a new understanding of just how celiac disease takes over our lives. Our days are filled with uncertainties: Where to dine? Where to shop? How to manage/where to go on vacation? What to do about the office party or neighborhood barbeque? How to fit in, with family, with friends, with co-workers? It may not feel like it’s a burden all that much, but a number of people at the Summit realized that just because they’ve gotten good at managing it, doesn’t mean it’s easy or ever goes away. I am the first to admit that I like to turn lemons into lemonade… but, seriously!
That’s why we’ve been focusing our efforts on communicating that celiac disease is a serious genetic autoimmune condition. We need healthcare professionals to recognize our short and long-term health risks so we can have proper follow-up care after a diagnosis. We count. This is not a lifestyle we have chosen. We need researchers to understand our challenges so they can help find new solutions. We need our friends and family to take us seriously. I appreciate a good gluten-free pastry as much as the next gal, but the food isn’t the real story here; it’s merely the treatment for a disease that is largely undiagnosed. More importantly, I still feel overwhelmed with constantly having to be on call.
Now, more than 20 years AD and working in the field of raising celiac disease awareness, we know so much more than we once did, and yet there is so much more to do. Every biological family member of a person with celiac disease needs to understand the importance of getting screened. The general public should know that we aren’t just picky eaters. Restaurants should recognize that gluten-free is a medical necessity, not a nicety. We will not accept a “gluten friendly” menu. There is no such thing! People with celiac disease should have access to good, accurate information and an array of treatment options to help manage their disease, especially since so many of us either don’t fully recover or we get glutened (or fear we will) with every bite of food.
We are on this journey together, with more and more joining the ranks of AD every day. Let’s take time this Celiac Disease Awareness Month to tell at least one new person our story, encourage at least one additional biological relative to get tested, tell at least one waiter in a restaurant that we must eat gluten-free because of celiac disease, a serious genetic autoimmune disease, which is much different than a food allergy. Join me in speaking out. I need you to be part of NFCA’s Army so we can conquer celiac disease together. We can move past the pain of our stories and find strength in numbers as we tackle this serious condition and raise awareness together.
To our GREAT health,
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By Chef Oonagh Williams
This dip is great in a vegetable tray, spread in a wrap, with cheese and crackers, or spread on grilled fish or chicken to finish.
CORNMEAL WAFFLES: OPEN SANDWICH OR FAJITA BASE
I saw the original recipe for cornmeal waffles on the Jones Dairy Farm website (all their meats are certified gluten-free and I actually cooked with them back in my wheat days). The original recipe included sausage, cheese and hot spices in the cornmeal batter. We found that we preferred just the basic cornmeal waffle, and then topped it in different ways.
TROPICAL BREAD PUDDING
This started as a tropical waffle based on a menu line item description, then evolved into Tropical Bread Pudding with coconut, pecans and chocolate with caramel sauce. This recipe is very easy for Dad to prepare and then bake with the kids for Mother's Day.
About Chef Oonagh Williams
'Like' Chef Oonagh on Gluten Free Cooking with Oonagh on Facebook. Keep up with her television appearances, radio, talks to both Celiac groups and non-gluten-free-diet groups. Consult with her by Skype. Chef Oonagh also does Corporate Lunch ‘n’ Learns and speaks at celiac disease conferences.
Tell her at Gluten Free Cooking with Oonagh on Facebook what you would like to see her make on New Hampshire’s ABC station on Monday, May 18. Read her article on visiting Atlanta, Georgia, tourism and gluten-free options in the next issue of New England Celiac Organization magazine. See the article from State newspaper on her part of a food allergy panel in April.
By Gwen Smith
Just in time for Celiac Awareness month, a new campaign sends this critical message: If you have the disease, talk to your extended family about it, tell them how serious its long-term health effects can be, and emphasize – they need to get tested, too.
The campaign, called “Seriously, Celiac Disease” has launched with an affecting video, which has already received thousands of shares and news coverage.
But Alice Bast, the president and CEO of the National Foundation for Celiac Disease, which has created the program, says that social media sharing alone is not enough. She stresses that people with celiac disease need to use the video and the related NFCA materials to start a one-on-one conversation with relatives – from siblings, to grandparents (or grandchildren), aunts, uncles and cousins. The intent is to make them aware of the risks, and how easy it is to do the initial blood-test screening.
Continue reading the Q&A with Alice Bast.
Photo credit: AllergicLiving.com & Thinkstock
NFCA is proud to unveil the expansion of our three-year family testing program through the launch of Seriously, Celiac Disease! This new campaign will teach you how to have a successful conversation with your relatives about their celiac disease risk through a new research-tested approach.
Watch the video below to learn how to have the right conversation with your family at the right time and place. Then, download NFCA’s free Dos and Don’ts guide for specifics on how to have an in-person, one-on-one conversation with your relatives.
Important note! Do not forward this video to your relatives. Our research shows that family members want to learn about their risk through a one-on-one, in-person conversation – not an online conversation. Sharing the video with them can prevent them from taking action and pursuing celiac disease screening. Please feel free to share this with others living with celiac disease using the hashtag #TalkTellTest!
TALK to your family. TELL them the facts. URGE them to test.
We can show you how.
NFCA thanks Dr. Schar for their support and sponsorship of Seriously, Celiac Disease
When you’re living with celiac disease, sometimes just knowing that you are not alone is enough to help you get through the day-to-day challenges. That’s why we’ve gathered stories from community members who have experience with family screening – even stories from those who had no symptoms at all but were diagnosed through screening.
NFCA is offering a free eCookbook to celebrate Celiac Awareness Month! Download it today for over 35 recipes from our sponsors.
We share our gluten-free finds every weekend through our “Best Gluten-Free Find” Facebook post, but throughout May, we’re highlighting a gluten-free product every day. That’s right! We’ll feature a product right here on beyondceliac.org so you can find new gluten-free favorites. We’ll tell you where the flavor inspirations came from, give you a snapshot of the nutrition facts, plus suggestions for how to eat them.
Follow the action on Facebook and our Product of the Day page daily!
As someone diagnosed with celiac disease, you know how important it is to get an accurate and prompt diagnosis. You have the power to help others restore their health and reclaim their lives. Because celiac disease runs in families, you are the natural link to help your genetically at-risk family members get screened.
NFCA’s mission is to secure early diagnosis and effective management for all people living with celiac disease. To do this, we drive diagnosis through the education and screening of at-risk blood relatives.
Learn about the research-tested approach and strategic formula, as part of NFCA's Seriously, Celiac Disease campaign, you should be using so that you can have the most impactful conversation from NFCA’s Director of Healthcare Initiatives, Kristin Voorhees, MA.
NFCA’s Patient Advisory Council member and Health Psychology Fellow, Christina Gentile, will also join us to talk about the importance of having the confidence to open this conversation.
Sponsored by Hain Celestial, this webinar is free of charge!
Join the National Foundation for Celiac Awareness (NFCA) as we host the #TalkTellTest Twitter chat about family screening with Christen Keogh, an actress in NFCA’s new video public service announcement (PSA), Seriously, Celiac Disease. The goal of this Twitter chat is to help those of you diagnosed with celiac disease understand what type of information you should share with your family members to help get them screened for this condition.
Have questions about understanding a person’s risk for celiac disease and the testing process? Get them answered right from the expert! National Foundation for Celiac Awareness (NFCA) Scientific/Medical Advisory Council Member Daniel Leffler, MD, MS, Director of Research, The Celiac Center at Beth Israel Deaconess Medical Center (BIDMC) will be the expert in NFCA’s first-ever Reddit Ask Me Anything (AMA).
Celiac Awareness Day with the Philadelphia Phillies is back! This year, it's happening right in the middle of May - Celiac Awareness Month. Come out to support the National Foundation for Celiac Awareness (NFCA) and help us raise awareness of celiac disease, non-celiac gluten sensitivity ('gluten sensitivity') and the gluten-free diet.
Just like in years past, there will be a dedicated gluten-free concession stand and the NFCA gang will be on the 200 level by the Hall of Fame to provide educational materials to game attendees. Stop by NFCA's table to meet the NFCA team and enter a free raffle to win a basket of Phillies memorabilia and other fun surprises. Our friends at Aramark also will offer a free raffle for your chance to win four tickets to a regular season game in section 118, a complimentary food coupon (valued at $40) and a free parking pass. Sweet Christine’s Gluten-Free Bakery will also be at the ballpark handing out samples of their delicious gluten-free baked goods.
Grab your tickets before they're sold out! A portion of ticket sales benefit NFCA's free programs and services.
Get the full scoop on Celiac Awareness Day with the Philadelphia Phillies and buy your tickets today!
Come chat with the National Foundation for Celiac Awareness (NFCA) and Dr. Anne Lee, EdD, RDN, LD, Professionals Manager of Dr. Schar USA about what it’s like to navigate the celiac disease testing process. Anne is living with celiac disease and has experienced family screening firsthand. Whether you have already talked to your family about celiac disease screening or if you’re just starting out with the process, you’ll learn a lot from the combined experiences of the community!
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