Note from Alice:
I Said "Yes" to Celiac Disease Research
Though I didn’t know this terminology when starting Beyond Celiac in 2003, I have always championed patient engagement. I continue to give an enthusiastic “yes!” to patient engagement in celiac disease research every day at Beyond Celiac.
And how could I not? As a celiac disease patient who saw over 20 doctors in 10 years and finally received a diagnosis only after demanding the test from the twenty-third doctor, I became a sleuth tracking down the truth of my own condition. I’m not alone in this doctor-hopping and delayed diagnosis—it takes an average of six to 10 years for a celiac disease diagnosis. That’s nearly a decade of trying to figure out and treat a disease that even our doctors can’t tell us about.
Because those of us with celiac disease learned over years of stomach pains, rashes, neurologic problems and nutritional deficiencies that we are our own best advocates, we can be a bit stubborn when it comes to knowing what’s best for us. We are, in many ways, naturally inclined toward intense and proactive engagement with our disease treatment. To date, the gluten-free diet is the only treatment for celiac disease, and while there is no replacement for speaking with a registered dietitian and regular doctor’s visits, almost full responsibility for treatment lies in our hands. Patient commitment is a prerequisite to successfully treating celiac disease.
But make no mistake, the gluten-free diet is not a “cure” for celiac disease. It’s inevitable that we accidentally ingest gluten from time-to-time, even when being cautious, and the diet is expensive and impractical for many. Currently, there is no drug or medical treatment that can lessen our burden of disease or cure us.
I think it’s high time that celiac disease patients convert the commitment that is essential to getting a diagnosis of and living with the disease to engagement in medical research. Years of conversations with people diagnosed with celiac disease told me that patients truly want to be part of the research process, but can’t find a way to participate. So what’s stopping us? Put simply, the nature of research itself.
In the spirit of changing this, Beyond Celiac has spent years working with patients, pharmaceutical companies, and academia to encourage integrating the combined experiences, knowledge and hopes of all parties. It might feel unnatural to consider ourselves experts in celiac disease and a part of the field, but the reality is we are experts in living with this disease. Our own experiences drive knowledge that researchers simply don’t have because they aren’t living day-to-day with this autoimmune disease. The researchers in the field are amazing – they’ve made immense strides in understanding this disease. But, as patients, we fill in the missing pieces of the puzzle for them as they seek solutions for the challenges of celiac disease.
At the end of May, I spoke about how Beyond Celiac is creating innovative patient engagement strategies at the International Society for Pharmacoeconomics and Outcomes Research (ISPOR) 21st Annual International Meeting in Washington, DC. My panel focused on how the research industry can successfully engage patients in research to expand treatment options, improve disease management and find a potential cure.
I was especially well-positioned to speak on this topic following the Beyond Celiac 2015 Research Summit, which gathered together celiac disease patients and caregivers with clinicians, scientists, and the diagnostics and biopharmaceutical industries to discuss unmet needs in the field of celiac disease. Although it may seem natural to do this, directly including patients at the decision-making table and demonstrating meaningfulness of research to patients are actually quite new and radical ideas in the medical research world.
The challenges we need to overcome to create more robust patient-centered celiac disease research include quantifying the individual burden of having and treating celiac disease, establishing FDA outcome measures, debunking the myth that the gluten-free diet is a cure and demonstrating the market for new treatment options to researchers.
Change starts with us. I said “yes” to a long engagement with celiac disease research, and I know that this is just the beginning. I hope that you’ll say “yes” to being involved too. Sign up for the Beyond Celiac Research Opt-In to stay up-to-date on the latest in research and how you can get involved.
To living better, longer,
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Cooking with Oonagh
I came up with this dip after tasting the normal crab dip made of cream cheese, crab and garlic. I make outstanding crab stuffed mushrooms, so I adapted that recipe to a crab dip. This makes a truly addictive crab dip suitable for any type of party. For a formal party, bake the dip and then put beautifully formed scoops of dip on individual plates and serve with points of gluten-free toast. For a game day snack, just put it on the table and watch it disappear. You can also use this dip to fill cream cheese pastry tarts or to bake on top of cod, haddock or fresh salmon. Get the recipe here.
In the UK, we always had jars of malt vinegar pickled onions to go with bread, cheese and meats, which is often known as a Ploughman's lunch. Since I now eat gluten-free, and malt vinegar is made from barley, I use red wine vinegar or apple cider vinegar. I make this with Vidalia or other sweet onions. I find that Vidalia onions are as crisp as red onions in the vinegar, but more tender and less chewy than red onions. Make these onions overnight so that they are ready for next day. Get the recipe here.
About Chef Oonagh Williams
Chef Oonagh Williams has a culinary arts degree, celiac disease and other food allergies. You can follow Chef Oonagh at Gluten Free Cooking with Oonagh on Facebook, where she posts recipes, products, places to eat, advice on following a gluten-free diet and her TV appearances. Chef Oonagh next appears on WMUR’s Cook’s Corner on Wednesday, July 9 during the noontime news. Connect with her on Skype for help in following a restricted diet. Have Chef Oonagh teach a cooking class or cook a dinner party with real food everyone will enjoy for a girls’ or couples’ night out this summer. Chef Oonagh's public cooking classes and demos will resume in September, but summer is a great time for in-home parties. Chef Oonagh is currently booking conferences, expos and classes for Fall 2016 and into 2017.
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Newly Diagnosed and Living with Celiac Disease in New England? Advance Research in One Simple Step
Researchers are working on an experimental new drug for celiac disease.
As an important first step, researchers are currently collecting blood samples from two types of patients (as outlined below). All study participants must have been formally diagnosed with celiac disease by a doctor and must be able to provide documentation. The blood draw and collection are being held in Fall River, Massachusetts, 02720 and this one-time visit will take 30 minutes.
You may qualify to participate in this study if you are:
- At least 18 years old
- Have been diagnosed with celiac disease in the last 90 days and have been on a gluten-free diet for no longer than 90 days
- Have been diagnosed with celiac disease and have been on a strict gluten-free diet for the last 12 months with no symptoms
If you qualify and provide a blood sample, you'll receive at no cost:
- Confirmation of your celiac disease gene type(s) (HLA-DQ2 or HLA-DQ8)
- $20 for your time
There are other requirements to participate in this study. There's one easy step to get started.
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Partners of Celiac Disease Patients Experience Caregiving Burden
In the first study to look at the burden placed on partners of celiac disease patients, researchers found that when celiac disease patients report increased symptoms and lower quality of life, their partners also experience increased burden and relationship strain. In addition to a patient’s symptoms, the partner’s rating of relationship quality and sexual satisfaction predicted whether that partner felt burdened by the patient’s celiac disease; partners who reported lower relationship quality and lower sexual satisfaction were likely to feel a greater caregiving burden. Surprisingly, partners in longer relationships (of over 10 years) were also significantly more likely to experience a mild to moderate caregiving burden, a finding that researchers tied to partners’ increased fears about how the disease would affect the patients in the future.
Because the partners of celiac disease patients in both shorter- and longer-term relationships experience an emotional caregiving burden, it is vital that celiac disease patients and their doctors educate partners about the disease and gluten-free diet, as well as include partners in medical counseling and treatment decisions. Read more.
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FDA Issues Warning about Serious Heart Problems Associated with Overuse of Imodium
The US Food and Drug Administration (FDA) has issued a warning about serious heart problems caused by taking too much loperamide, also known as Imodium. This warning applies to both prescription and over-the-counter Imodium.
When taken more than directed, Imodium can cause severe heart rhythm problems, which can lead to death. The FDA noted that the risk does apply to both those who are intentionally or unintentionally consuming more than the recommended dose.
This is critical information for the celiac disease community, as many can deal with digestive distress following exposure to gluten. Always take Imodium as directed by your doctor, or follow the dosing directions provided on the package. If you have any questions about the dose, be sure to speak with your doctor or pharmacist to get clarity before taking the medication. Continue reading.
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Caption This! Photo Caption Contest
Follow Beyond Celiac on social media to participate in our annual Caption This! contest. Each week in July, we will post new photos on social media and ask for your funniest captions referencing life with celiac disease or on a gluten-free diet. If your submission gets the most laughs out of our team, you will be published on the Beyond Celiac website and win a gluten-free prize pack from Crunchmaster.
Thank you to Crunchmaster for sponsoring Caption This!
Follow Beyond Celiac on Social Media
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Tips to Keep You Safe during the Summer
Yes, traveling on the gluten-free diet has its challenges, but that shouldn’t keep you trapped in the house all summer long. Beyond Celiac has the tips and tools you need to get out there while staying safe from gluten exposure.
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Allergic Living Sneak Peek:
Celiac Disease Feeds My Art, Advocacy and Cooking
By Sema Dibooglu
I awoke with a smile as the delicious scent of waffles drifted into my bedroom. Racing to the kitchen, I found my grandmother pouring batter onto the hot iron. The neat stack of heart-shaped waffles that she had already prepared looked perfect, almost too perfect for someone with little gluten-free experience.
“Are these gluten-free?” I asked. She placed a waffle in my hand. “A little wheat won’t hurt you, dear.” Silencing my disbelief, I calmly put the waffle back and said, “No Grandma, I can’t eat these.”
“Well then I’ll just make you some pancakes,” she concluded. Read more.
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The Gluten-Free Certification Program Receives a Vote of Confidence from the Safe Quality Food Program
When it comes to food safety, the Gluten-Free Certification Program (GFCP) can’t be beat. Today, specific regulations govern the use of the term “gluten-free” across the food and beverage industry. This means that commercial manufacturers need effective management systems and quality control measures to ensure the integrity and compliance of gluten-free products. That’s the basis behind the GFCP.
Unlike other gluten-free certifications, the GFCP does not rely solely on end product testing as its only means for gluten-free certification. Rather, the program uses a set of requirements founded upon proven, globally recognized and science-based food safety protocols. The certification looks at a commercial manufacturing facility, its production practices and its management systems in order to identify, evaluate, control, continually improve and manage the overall risk of cross-contact at the manufacturing level. The long-term outcome of the GFCP is to encourage a management systems approach that prevents food safety failures that could harm the public. The resulting effect will ensure that gluten-free brands meet all government regulatory requirements, while promoting transparency for stakeholders and safe, reliable gluten-free products for consumers.
Beyond Celiac endorses the GFCP, which is owned and operated by The Allergen Control Group. The GFCP recently formed an alliance with the Safe Quality Food (SQF) Program, a division of the Food Marketing Institute (FMI) that is recognized by the food industry around the world as a rigorous and credible food safety management system. This vote of confidence comes with a promise to recommend the GFCP to manufacturers seeking gluten-free certification.
So what does this mean for you? We talked to Allen Rekunyk at The Allergen Control Group to find out.
Can you briefly tell us what your role is at The Allergen Control Group?
As Vice President of Business Development, I am responsible for the overall planning and implementation of the Allergen Control Group’s global business development strategies and growth plan. I work closely with Beyond Celiac in the United States and Canadian Celiac Association (CCA) in Canada to deliver the GFCP message to the retail grocery industry and brand manufactures about the value, benefits and opportunities GFCP can create for their businesses. When consumers see the GFCP trademark on product packaging, they are assured that the products are safe, trustworthy and reliable.
Why should people with celiac disease choose products certified through the GFCP?
There is a plethora of gluten-free symbols in the market. Many are unsubstantiated and self-declared gluten-free claims, while others use gluten thresholds that are not based on science. For consumers with no other choice but to follow a gluten-free diet for life, the GFCP provides assurance that the products with the GFCP trademark have met stringent requirements for the manufacturing of gluten-free products. This sets those products apart from all other products displaying “gluten-free” symbols. The GFCP aims to ensure food supply is safe by preventing cross-contact, rather than responding to it. The GFCP helps brands reach consumers with celiac disease and gluten sensitivity by reducing label reading and enhancing the gluten-free shopping experience.
Why is your alliance with SQF big news for the celiac disease community?
Today’s gluten-free consumers are educated about the food they provide their families and want more information about food quality. Consumers want assurances of food safety from retailers, which then leads retailers to ask suppliers for verifiable proof that robust food safety control systems have been implemented. This is where the Safe Quality Food (SQF) Program comes in. The SQF is recognized by retailers and foodservice providers around the world as a rigorous, credible food safety management system from farm to fork. It is the only major system recognized by the Global Food Safety Initiative (GFSI) that offers third-party accredited certification for primary production, food manufacturing, distribution and agent/broker management. GFCP’s alliance with SQF lets brand owners and manufacturers combine the SQF Food Standards and the Gluten Free Certification Program under one audit conducted annually by ISO accredited independent auditing organizations. This means that brand owners and manufacturers committed to producing safe, reliable and trusted gluten-free products can become GFCP certified. It also gives the celiac community access to more gluten-free products that taste great, provide necessary nutrients and are reasonably priced – a true benefit for consumers!
In just 3 bullet points, can you show how the GFCP differs from other certification programs out there?
- It is the only standard founded on globally recognized, preventative food-safety approaches for managing the production of gluten-free products.
- The GFCP is the only North American on-packaging consumer trademark endorsed with the name of the two leading celiac disease organizations – Beyond Celiac and Canadian Celiac Association.
- GFCP certification can be implemented independently or harmonized with globally accepted food safety standards such as SQF.
What would you like the celiac disease community to know about this new partnership with SQF?
The Allergen Control Group (ACG), which owns the GFCP, continually strives to support the celiac disease community by providing the “gold standard” for gluten-free certification. Partnering with SQF is just one of the many ways we continue to support and accomplish the following objectives for gluten-free consumers:
- Help consumers to make clear and informed safe, gluten-free product choices
- Increase ease of access to gluten-free products
- Broaden the scope of available gluten-free products
- Be trusted by consumers seeking gluten-free products
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Pizza: A Slice of Life Infographic
If you’ve ever wondered how much pizza Americans eat, the length of the world’s largest pizza or how much money the pizza industry rakes in each year, then take a look at our infographic, "Pizza: A Slice of Life." Some of the numbers are shocking! Given the average American’s love of pizza, it’s no surprise that many people miss pizza more than anything else after starting the gluten-free diet. But all is not lost! Gluten-free pizzas do exist!
We thank our sponsor, Venice Bakery, for bringing gluten-free pizzas (and this infographic) into our lives.
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“Gluten-Free” Gaining Traction in the Restaurant Industry
Back in 2012, Beyond Celiac (then known as the National Foundation for Celiac Awareness) attended the National Restaurant Association (NRA) Show. While there, the team polled the many chefs and food industry professionals by asking them four basic celiac disease questions:
- True or False: Celiac disease is a genetic autoimmune disease triggered by glucose.
- Gluten is a protein found in what three common grains?
- What kids of oats can be used in a gluten-free dish?
- Find the ingredients that most likely contain gluten.
Beyond Celiac Director of GREAT Kitchens
Beckee Moreland at NRA 2016
At this 2012 show, many chefs and restaurateurs said they offer a gluten-free menu, yet only four percent of them answered all four questions correctly. Less than 50 percent of chefs were able to name a gluten-containing grain other than wheat.
Luckily, Beyond Celiac continues to head to the NRA Show and spread the facts about safe gluten-free cooking for people with celiac disease. This year, Beckee Moreland, Director of GREAT Kitchens, presented on Safe Serving: Handling Celiac Disease and Food Allergies, alongside Jennifer Jobrack of Food Allergy Research & Education (FARE) and Carlyn Berghoff, owner of the GREAT accredited Berghoff’s Catering & Restaurant Group. Together, the trio helped the audience of over 150 foodservice professionals to:
- Define food allergies, sensitivities, intolerance, celiac disease and other gluten-related disorders
- Understand regulatory guidelines
- Identify challenges and benefits of serving special diet guests
- Define best practices for menu statements
- Learn key elements for serving those with special diets
“This year’s polling of the foodservice industry was much better than in 2012,” said Beckee. “Many people showed a stronger understanding of celiac disease as a serious genetic autoimmune disease and recognized the gluten-free diet as a medical need. Attendees even talked about their own loved ones with celiac disease or non-celiac gluten sensitivity (‘gluten sensitivity’). It’s not perfect out there; many restaurants still need to seriously improve their offerings. But, this change in the conversation shows we’re taking positive steps in the right direction.”
The GREAT Kitchens and GREAT Schools, Colleges and Camps training programs contributed to this increase in awareness and knowledge. The two online programs are designed to teach all parts of the foodservice sector to safely prepare gluten-free food from ingredients sourcing to placing the plate on the table. With each restaurant, school, camp, daycare center, hospital, nursing home, etc. that take the GREAT courses, we get one step closer to creating safe options for people with celiac disease who are trying to stay healthy in a gluten-filled world.
GREAT can make a difference in your community. Learn more about the programs and how you can drive awareness and education in your own backyard.
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Celiac Disease in the News:
When the Wrong Information Hits the Airwaves
At Beyond Celiac, we get excited to see celiac disease making the news. But what happens when it’s the wrong information being broadcasted?
The conversation turned to celiac disease on the June 7, 2016 edition of Fox Red Eye. So much of the information shared in the segment is inaccurate. That’s why we decided to use this as an opportunity to bust some myths and share the facts.
Click “continue reading” to watch the video segment in question. We breakdown the inaccurate information and provide the science-based facts below the video. Continue reading.
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Gluten-Free Awareness Carnival
September 22, 2016 in Pittsburgh, PA
Don’t miss the 5th Annual Gluten-Free Awareness Carnival at the University of Pittsburgh! Hosted by the campus’ Gluten-Free Awareness League, this event offers free food, raffle prizes, speakers, games and more! Learn more.
International Tampere Celiac Disease Symposium – Measuring Treatment Outcomes
November 24-26, 2016 in Tampere, Finland
The University of Tampere School of Medicine warmly welcomes medical professionals to attend the international Tampere Celiac Disease Symposium – Measuring Treatment Outcome. Novel therapeutic approaches for celiac disease are at our doorsteps, and this scientific meeting will focus on ways to measure clinically significant gluten-sensitive readouts in celiac disease and in clinical drug/device/vaccine trials. In addition, the second Maki Celiac Disease Tampere Prize (€ 15,000) for significant contribution to the fields of Celiac Disease and Gluten-Induced Disease Entities is awarded at the symposium. The meeting takes place parallel to the Gluten-Free Life Expo 2016 organized by the Finnish Celiac Society. Learn more.
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In the Headlines:
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