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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,
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.
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.
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.
Email: [email protected].
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.
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’tsguide 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.
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.
Free Webinar: The Right Time, the Right Place, the Right Conversation: Talking to Your Family about Celiac Disease Screening