Note from Alice
Why is Gluten-Free Still Our Only Option?
Cooking with Oonagh
Celiac Straight Talk
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2017 Philly Gluten-Free Expo Video
Expo attendees share what gluten-filled foods they miss the most.
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Some of you may have read the recent article by Jane Brody in the New York Times, Who Really Needs to Be Gluten-Free? It’s an accurate overview of the gluten-free landscape, but what’s being overlooked —at least for those of us suffering from celiac disease – is that the gluten-free diet is far from a complete treatment and nowhere close to a cure. And those who are not diagnosed or who are going untreated are at-risk for related serious health consequences, including other autoimmune diseases, osteoporosis, thyroid disease, and even certain cancers. We’ve known since 1952 that gluten is the culprit, and yet in the last 65 years, no additional therapies have been developed. We need to push the conversation beyond the gluten-free diet and advocate for treatment options, and yes, eventually a cure for this serious genetic autoimmune disease.
“You have celiac disease. Go gluten-free and you’ll be fine.” That’s the message that so many in our community – the minority that have received an actual diagnosis – hear when they get the news. For most of us, that’s it. We’re left to fend for ourselves even though research is showing that up to one-third of people with celiac disease continue to experience intestinal damage caused by the body’s immune response to gluten despite trying to adhere to a gluten-free diet. We feel so abandoned by the medical system that one-quarter of us haven’t bothered to go back to our doctor in the past five years. Those of us with celiac disease know that there’s a real need for alternative treatments to replace or supplement the gluten-free diet. And frankly, until there’s a treatment beyond the gluten-free diet, celiac disease will continue to be an under- or misdiagnosed, poorly managed public health issue.
Beyond Celiac recently changed its mission statement in response to input from the celiac disease community, medical and scientific advisors and its 13 years of advocacy experience. As an evidence-based organization, Beyond Celiac relies on credible science to drive the education of its community as well as advocate for changes that will improve the quality of life for everyone with celiac disease.
There is more than 10 times more NIH funding for inflammatory bowel disease (IBD) than for celiac disease research. In the pharmaceutical industry, research and development resources for celiac disease up until 10 years ago, were essentially zero.
The good news is that there are currently six types of treatments in varying phases of research seeking to find additional options for patients. Combined with, and perhaps one day in place of, the gluten-free diet, these could improve the health and quality of life for celiac disease patients.
But we are still some distance away from getting a celiac disease drug approved. If you’re a person affected by celiac disease, you can help by staying abreast of the latest news and volunteering for research studies. Beyond Celiac presents clear and relevant research news – You can sign up for the latest in research news to see what’s happening in the field and check out the easy-to-use clinical trials finder and an interactive drug development pipeline to illustrate the progress in the field. We are also building an on-line community, Go Beyond Celiac, to make sure that people with celiac disease are active participants in research efforts.
So the question shouldn’t be: Who really needs to be gluten-free? It should be: Why don’t we have something better than just gluten-free? It is possible. We have the will. Now we need to have our community step up and demand it from scientists and researchers. Our lives are depending on it.
To living life Beyond Celiac,
Beyond Celiac CEO
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Gluten-Free Lemon Poppyseed Cake
Use this delicious recipe for either a layer or Bundt cake! This recipe is very similar to the original milk and oil batter for poppy seed cake we all knew from our wheat flour days.
Devilish Ham Spread
A slightly sweet, slightly spicy recipe that's great for using up leftover ham. Think of serving it with gluten-free mini bagels at a party. Spread in a gluten-free wrap with salad, in a gluten-free sandwich with meats, or on a gluten-free English muffin with chips.
A bright and beautiful gluten-free dip that's sure to delight the eyes as well as the tastebuds. I first tasted this dip when I had lunch at Café Sofra, Ana Sortun's cafe in Boston. Then I went out and bought fresh beets at Russo's the same day and used half to create this dip recipe, using ingredients based on what was available
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
Babies who get frequent stomach infections may have a greater risk for developing celiac disease later in their lives, a new study shows.
The risk appears to be especially high when infants get repeated gastrointestinal infection before they turn one year old, according to the study published in the American Journal of Epidemiology and conducted by scientists in Germany. They analyzed data from nearly 300,000 infants born in Bavaria, Germany, between 2005 and 2007.
The risk seems to be associated with permanent inflammation of the gastrointestinal tract in early childhood, one study author said.
Yes, pure, distilled liquor, even if made from wheat, barley, or rye, is considered gluten-free. Most liquors are safe for people with celiac disease because of the distillation process. However, be on the lookout for hidden gluten in liquors that add flavorings or other additives after distillation. There is also a risk for gluten cross-contamination in facilities that process products containing wheat, barley, or rye. Read more at Answers from a Dietitian.
For more on the distillation process and the safety of liquors for those with celiac disease, as well as gluten-free alcohol labeling information, check out this helpful PDF from the Gluten-Free Certification Program.
By Alice Bast
On average, people with celiac disease wait up to 10 years to get an accurate diagnosis. When they do get one, they are often told to stop eating gluten and “Google it” for more information. For so many of us, the internet is our lifeline, giving us access to gluten-free recipes, and connecting us with others who share our experiences. Alongside this wealth of information, however, comes a wealth of misinformation...
READ MORE on Allergic Living.
Photo credit: Allergic Living/Thinkstock
Patients Managing the Disease on their Own
Research shows celiac disease patients are on their own when it comes to care. Most people who get diagnosed with celiac disease don't go back to their doctor for follow up care, shows a study done by Beyond Celiac and researchers from Columbia and Vanderbilt universities. Patients manage the diet and deal with whatever symptoms they suffer on their own. But what are the consequences?
We asked attendees of the 2017 Philly Gluten-Free Expo to share what gluten-filled foods they miss the most since going gluten-free.