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Celiac Awareness Month and Push for More Research
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"Mom, am I ever going to be able to go back to school? Am I ever going to be able to go to college?"
That’s what Mitchell Gaer asked his mom Courtney one day. When Mitchell was 10, he developed severe back and leg pain, headaches, sore throat, mouth sores and fatigue in an odd pattern that started at Sunday night and then lasted until Friday like clockwork. At first it was suggested he was trying to avoid going to school. There was even one doctor that concluded that his problem was psychological and refused to treat him after that. He missed 90 days of school his freshman year. All this, despite never having classic gastrointestinal celiac disease symptoms and his original celiac disease blood test coming back negative. It took four years of debilitating symptoms before Mitchell got his diagnosis. For a disease that affects an estimated 3 million people, this is unacceptable.
What I Wish You Knew is our theme for Celiac Awareness Month 2017. For the month of May, Beyond Celiac has taken the opportunity to work with our community to raise awareness about a serious genetic autoimmune disease that affects nearly 1% of the population in the United States.
The Call for More Research
We need better. But there simply has not been enough research about the disease. The medical, biomed and research communities do not know enough yet. This lack of knowledge is at the heart of the struggle.
That is why Beyond Celiac is building an on-line community to make sure that people with celiac disease are at the table in research efforts. Our goal? Improving quality of life, accelerating potential treatments beyond the gluten-free diet, and potentially discovering a cure.
Beyond Celiac is fostering a community where research scientists, medical professionals and people with celiac disease have the same focus and respect for each other’s roles in moving the field forward. Until science has advanced an effective treatment beyond the gluten-free diet for celiac disease, Beyond Celiac will remain vigilant. We will continue to push for increased access to safe, gluten-free food options to help people manage their celiac disease. We will continue to offer in-depth and evidence-based information and free resources on this site. A we will continue to be a trusted resource for our community until we find a cure.
I’m happy to report that Mitchell is doing much better, now that he has a diagnosis and is on a strict gluten-free diet. You can hear his whole story, plus others in our Celiac Straight Talk podcast series.
We invite you to participate in the “What I Wish You Knew” campaign using the #WIWYK hashtag. You can share information with the broader community through social media and on-line resources that include a series of podcasts, an infographic, an ecookbook and more. Please help us raise awareness about celiac disease. Our lives are riding on it.
To living life Beyond Celiac,
Beyond Celiac CEO
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A light and refreshing salad, an easy special treat for Mother's Day.
This is really a cracker made just from Parmesan cheese. In my local regular grocery store , a 1.76 oz packet of these parmesan crisps was $2.99, almost $27 per pound. Store brand, ready shredded parmesan in cold case was only $5 per pound. And specialty food stores are even more expensive. You can make lots of small crisps or make a large one and just break it into pieces.
When we were in Mexico in January a few years ago, I tried a Margarita cheesecake for dessert. Unfortunately tasteless but I have a recipe for a Margarita ice cream cake that is unbelievable. The recipe came from a student from her mother in May of 1998 with the comment ‘this is your kind of dessert, Oonagh! Two liquors! So I took my refrigerated unbaked cheesecake recipe and made it into a Margarita cheesecake. From this same basic recipe I have made chocolate peanut butter, white chocolate raspberry, white chocolate hazelnut, dark chocolate kahlua as well as ordinary cheesecake with fruit topping. Unbaked is so simple and the cheesecake sets like a mousse.
British Born, 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 food allergy diets as well as cooking classes, dinner parties and 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 was the only 'food' speaker on stage at the 1 April all day Boston Celiac Symposium with top doctors from Beth Israel, Mass General and Harvard Medical School - all with CEU's. Chef Oonagh's demo and talk with samples on almond flour cake and cashew nut hummus, with nutritional info, advice on how to cook so they will eat, eating gf in restaurants and showing how to cook gluten free to motivate people not to cheat on the gfd.
Chef Oonagh's 6 hour demystifying gluten free baking class included gf breakfast pastries, gf pizza/focaccia bread made by class for lunch with soup and salad, lecture on flours, starches etc and baking labs comparing different flours, blends, mixes for chocolate chip cookies, bread dough and yellow cake.
Buy her Delicious Gluten Free Cooking e-book, over 200 pages, full color photos, only $20.
Like her at Gluten Free Cooking with Oonagh on FB where she posts recipes, links to her NH ABC appearances and products she's found and tasted. Connect with her on Skype for help in following food allergy diet.
The Beyond Celiac GREAT Kitchens and GREAT Schools, Colleges and Camps are gluten-free training programs designed to teach the ins and outs of safe gluten-free food preparation to foodservice professionals. GREAT has a couple of free-of-charge educational opportunities coming up:
For Parents in the mid-Atlantic Region: Accommodating K-12 Kids
With support from the Ravitz Family Foundation, join GREAT Program Director Beckee Moreland for an educational forum and discussion for the South New Jersey Celiac Support Group in Moorestown, NJ on May 21, 2017 2 - 4 pm. Attendees will learn about the process and procedures for accommodating students with celiac disease in K-12 schools in the cafeteria and classroom. Learn more here.
For Foodservice Providers: Free Webinar: Sorghum, A Super Food: Increasing Healthy Options for All by Substituting Ancient Grains
This webinar will introduce sorghum to foodservice directors, chefs, nutrition professionals and others in the food industry as a gluten-free alternative and substitution for gluten-containing grains. Utilizing sorghum in various ways (flour or grain; meal or snack) can not only meet the needs of special diet students/customers but also offer an on trend, versatile, nutritious plant-based option that satisfies all students/customers. In addition, cooking with sorghum can save staff time and energy in the kitchen. Panelists include: Chef Michael Albright, Registered Dietitian Megan Coats and GREAT Program Director Beckee Moreland.
Attendees can receive CEU's for American Culinary Foundation and the Academy of Nutrition and Dietetics. Learn more and register here.
By Amy Ratner, Beyond Celiac Medical and Science News Analyst
If you have celiac disease, you might be more likely than most people to question the health value of the gluten-free diet for those who don’t. You are probably aware of the potential nutritional shortcomings of the diet because it can lack in heart-healthy whole grains.
In a study of more than 100,000 men and women, researchers found that gluten in the diet is not associated with heart disease risk in those who don’t have celiac disease. At the same time, limiting whole grains as part of a low-gluten diet may increase their risk of heart disease, the study published online in the BMJ journal, suggests.
“Gluten is clearly harmful for people with celiac disease,” lead study author Benjamin Lebwohl, MD, director of clinical research in the Celiac Disease Center at Columbia University, said in a press release. “But popular diet books, based on anecdotal and circumstantial evidence, have pushed the notion that a low-gluten diet is healthy for everyone.”
Dr. Lebwohl said the study showed gluten restriction has no benefit, at least in terms of heart health, for people without celiac disease, and it may cause some harm because whole grains, many of which are restricted on the gluten-free diet, appear to have a protective effect against heart disease.
By Amy Ratner, Medical and Science News Analyst
If you’ve gone on a gluten-free diet before being diagnosed with celiac disease, you have to go back to eating wheat, barley or rye for an extended period of time, and possibly suffer consequent symptoms, for tests for the condition to be accurate.
But the possibility that a very short, single gluten challenge would be enough to determine whether someone who is on the gluten-free diet has celiac disease was raised in research presented by ImmusanT today at Digestive Disease Week (DDW).
“Patients on a gluten-free diet who seek a diagnosis of celiac disease often refuse or cannot tolerate a gluten challenge of the duration usually needed for serological (blood) and histological (tissue) markers to become abnormal,” the ImmusanT study says, noting that it usually takes more than four weeks.
“A faster and more tolerable diagnostic is needed,” the Massachusetts biotechnology company focused on celiac disease said in a press release.
In the study, adult patients who were following the gluten-free diet were given either vital wheat gluten flour or a gluten-free flour drink in a double-blind, placebo controlled challenge. Blood samples were collected both before the challenge and at one to two hour intervals after. Additionally, adverse reactions were recorded for six days.
By Amy Ratner, Medical and Science News Analyst
Over-the-counter tests that detect gluten in stool or urine could be on store shelves in the United States by the end of the year.
Called GlutenDetect, they work like a pregnancy test with a stick that shows a positive or negative result when a sample of urine or stool is applied to one end. The at-home tests will offer consumers a quick and easy way to determine if they’ve been exposed to gluten, the protein that can trigger symptoms and intestinal damage in celiac disease patients and cause problems for gluten sensitive patients as well.
A version of the test that measures the amount of gluten consumed and gives a numerical result could also be available by the end of the year, according to the company distributing the tests, but it would have to be sent to a central laboratory for analysis.
Beyond Celiac is ramping up its efforts to accelerate celiac disease research. The truth is that the gluten-free diet alone is not enough to truly treat celiac disease. As many as 70% of people with celiac disease are still exposed to gluten, despite their best efforts to stay gluten-free. We're pushing for treatment options so that patients can decide what's right for them and their families; at the end of the day, people deserve choices in their treatment and not a once-size-fits-all approach.
In the coming weeks, we'll be offering a unique opportunity for people to get involved in driving research forward in a new way, right from the comfort of your own home. Sign up for the Research Opt-In and you'll receive an email alert when we launch a new campaign that will give you the ability to directly influence the research field.
By Lisa Fitterman in Celiac
MAYBE you have just been diagnosed with celiac disease, or maybe you were diagnosed several years ago. You’ve been told what it is so many times, you can dutifully recite it by rote: an autoimmune condition in which the body reacts to the presence of gluten, a protein in wheat, rye and barley, by damaging the villi in the intestine that are essential for absorbing nutrients.
It may have taken years for you to be diagnosed with celiac disease as you were treated for other conditions. And now that you know what you have and that you need to follow a strict gluten-free diet to feel well, you find that’s not so easy. You have questions about everything from what nutrients you need, to how much damage accidental glutening does, to what the future holds for treatments. Or, you may want to know why you are still experiencing symptoms, even though you have been eating gluten-free.
To help with these issues, Allergic Living consulted three professionals – gastroenterologists Dr. Joseph Murray of the Mayo Clinic and Dr. Alessio Fasano of Massachusetts General Hospital, and Shelley Case, a registered dietitian who is an authority on the gluten-free diet. Their thoughtful and commonsense responses should help you understand and manage your celiac disease better than ever.
Continue reading in Allergic Living.
Photo credit: Getty & Allergic Living
We're getting real about living with celiac disease. Many people are grateful for finally having their diagnosis, but that doesn't mean everyday living is always a (gluten-free) piece of cake. With the help of our friend Christopher Snider, we're talking to real community members about real life experiences with this serious genetic autoimmune disease.
We have two great episodes available for download now!
What Do You Wish People Knew About Your Celiac Disease? Check out our Celiac Awarenss Month page - full of content for you to read and share!
What Do You Wish People Knnew About Your Celiac Disease? Tell Us! Dial 215-325-1306 x120 and let us know. Your message may be chosen to be featured on Facebook or on a future podcast!
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