Note from Alice
Celiac Disease Community: With and for Each Other!
Cooking with Oonagh
New Ways to Understand Celiac Disease Research
Three tools make it easier to follow clinical trials and participate
Is Celiac Disease on the Rise?
A review of current evidence
Celiac Straight Talk
New podcast episode!
What I Wish You Knew Video
Philly Gluten-Free Expo attendees share what they wish people knew about celiac disease
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A few months back, I made an appeal in my Huffington Post column for people to stop making light of the gluten-free diet. Our lives living with celiac disease are difficult enough without having to deal with slights and underestimations of our disease. One misstep, one misread label, one crumb can leave us debilitated for days. We don’t need people calling our diets a fad or poking fun of us for asking necessary questions about what we eat.
Today, I’m adding to that plea. Let’s actively work to create an empowered positive celiac disease community. It’s not always “outsiders” that make light of our plight, or judge us for how we eat or the decisions we make about dealing with our disease. Many come to our community feeling vulnerable and looking for answers to help ease the burden of living gluten-free. They’re sick of being sick, or watching their kids be sick, and they want to take action. Life as is, isn’t acceptable. Creating a safe and friendly place to share and learn is how we grow stronger. There is no one way to experience celiac disease. In fact, there are more than 300 symptoms to celiac disease, and they can vary from person to person. Some experience frequent bloating or abdominal pain, others have trouble gaining weight. There’s joint pain, depression, even infertility. Some have to run to the bathroom after the slightest exposure to gluten. While others of us are asymptomatic. Currently, 83 percent of people with celiac disease remain misdiagnosed or undiagnosed. And of those of us that are diagnosed, 27 percent have not seen a healthcare provider for follow up care in the last five years. Empowering each other can help to break down the barriers to accurate diagnosis and healthy living. It will also strengthen our community, our greatest asset.
The truth is, our lives are tough enough--with it taking an average of 6-10 years to even be diagnosed, then having to live a life in fear of food. Many of us already deal with our diets being made fun of, our disease not being taken seriously, and even family members not understanding. We’re at our best when we’re sharing how we deal with particular symptoms, giving helpful advice and referrals, participating in research, sharing the latest information, and offering support to those feeling down or frustrated. We need to encourage one another, collaborate, and create a safe space where we can learn. Positive connections are important. Amplifying our voices is also important. The community tells me that they don’t just want to talk--they want to take action. Meeting others who similarly struggle with the same experience, and being able to talk openly with them can be life-changing. We can also better manage our disease when we’re part of a support system. And if we’re all working together, we can utilize the latest research along with our own collective willpower and knowledge to conquer this disease.
As an informed and empowered community, we not only support one another but also can have a unified voice in our call for better diagnosis, treatment options, and ultimately, a cure. At Beyond Celiac, we bring the celiac disease community together to raise awareness and increase our collective knowledge through social media, with research news, our drug pipeline page, and our research opt-in list. The power to change today’s challenges of living with celiac disease are in your hands. Not just by championing research and awareness, but by being stewards of understanding and compassion—with and for each other.
To living life Beyond Celiac,
Beyond Celiac CEO
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Lazy Marinated Shrimp
I don't know about you, but far too often when I buy precooked frozen shrimp, they needed to be cooked just that little bit more, otherwise they definitely have the taste and texture of undercooked shrimp. This recipe came about when I had some store-bought cooked shrimp left over.
Coleslaw with Orange Vinaigrette
I grew up on fresh coleslaw and my father making homemade mayonnaise with a whisk for it rather than the regular buttermilk dressing in US. It tastes so good and is so simple, that I don't know how restaurants can serve some of their coleslaws. This dressing is tasty, tangy, simple and safe for those of you that can't eat eggs or choose not to eat eggs/mayonnaise.
British born Chef Oonagh Williams holds a culinary arts degree and spends her time cooking, writing, speaking, and educating the public on gluten-free and allergy-free diets. She herself has celiac disease along with other food allergies. When not writing or speaking nationally on food, she teaches cooking classes, hosts dinner parties, and offers one-on-one help. Locally, she teaches healthier food cooking classes including vegetarian cooking for everyone, as most real food is naturally gluten-free and free of many other allergens. Chef Oonagh had the honor of being a speaker at the Boston Celiac Symposium, alongside top doctors from Beth Israel, Mass General, and Harvard Medical School.
Buy her Delicious Gluten-Free Cooking e-book, over 200 pages, full color photos, only $20; like her Facebook page, Gluten-Free Cooking with Oonagh, where she posts recipes, links to her appearances, and gluten-free products she's discovered; and connect with her on Skype for help in following a food allergy diet.
By Amy Ratner, Medical and Science News Analyst
It’s easier than ever to be informed about celiac disease research with the launch of three new features on the research section of the Beyond Celiac website.
First, we've created an interactive page, called the Drug Development Pipeline, where you can see where celiac disease drugs are in the Food and Drug Administration (FDA) approval process. The FDA does not conduct drug studies itself, but requires various levels of clinical review before any drug can be sold to consumers, a process that can take years.
Drug testing begins in the pre-clinical phase, before they are tested on humans, primarily to determine drug safety and dosing levels. Results from pre-clinical trials are used by the FDA to determine if it is reasonably safe to proceed with clinical testing on study participants...
An overview of celiac disease, including a look at a global increase in its occurrence, was recently published by The Scientist magazine.
Titled The Celiac Surge, the story details researchers’ concern that prevalence of celiac disease seems to be increasing and their search for the reason why.
The article points to a recent study at the Colorado Center for Celiac Disease that found that by age 15, slightly more than 3 percent of Denver children followed for up to 20 years had developed celiac disease, a rate about three times higher than that typically cited for the overall U.S. population...
By Lisa Fitterman
Welcome to Finland, where locals know almost as much about celiac disease as heavy metal, and where diagnosis levels never fail to astonish.
READ MORE on Allergic Living.
Photo credit: Allergic Living/Visit Finland
Cheaters: Walking Away from the Gluten-Free Diet
When food is your only medicine, how do you manage? We talk to four people about the very taboo and very real subject of cheating on the gluten-free diet.
We asked attendees of the 2017 Philly Gluten-Free Expo to share with us what they wish people knew about celiac disease. Their answers are quite revealing, and may even surprise you.
Free Webinar: Sorghum, A Super Food: Increasing Healthy Options for All by Substituting Ancient Grains, Wednesday, June 14, 2017 at 3 pm EST.
Can Individuals with Celiac Disease Drink Barley-Based “Gluten-Removed” Beers such as Omission? A Gluten Free Watchdog Special Report