Celiac disease patients frequently exposed to gluten, especially on the weekends
 

Studies at DDW also show that symptoms don’t line up with intestinal damage

  By Amy Ratner, Medical and Science News Analyst Research presented at Digestive Disease Week in San Diego this week painted a complicated picture of celiac disease, including evidence that patients are frequently exposed to gluten, especially on the weekends, many have symptoms every day and symptoms are not a good indicator of whether someone has ongoing intestinal damage. Meanwhile, research led by Marie Robert, MD, Beyond Celiac chief scientific officer and professor of pathology and medicine at Yale University School of Medicine, found that neither results of blood work measuring celiac disease antibodies, symptoms, nor how well a patient was keeping to the gluten-free diet predicted whether follow-up biopsy results would show intestinal damage. Additionally, one study presented raised the possibility of a non-invasive test for celiac disease based on chemically defined gluten peptides in the circulatory system and ultimately measured in urine. Researchers had set out to determine whether analysis of chemical peptides in urine could distinguish people with celiac disease from people without the condition. Another study that stepped away from the research laboratory and into the kitchen showed that cooking classes helped adults and teenagers with celiac disease stick to their gluten-free diet and consequently improve their quality of life. These were among topics covered in lectures in the first session devoted to celiac disease at DDW. Details of a debate on whether broad screening for celiac disease is needed, studies presented in a session the second day and posters featuring investigations at various stages will be covered in additional research news posts. Symptom disconnect Researchers from the Mayo Clinic compared the frequency and severity of patients’ symptoms to the results of their celiac disease blood tests and intestinal biopsies. More than a third of 1,276 patients had gastrointestinal symptoms every day. When tiredness was included in the measure of frequency of symptoms, more than half reported having a symptom every day. When the relationship between positive blood tests and symptoms was reviewed, those with positive tests had slightly more overall symptoms and slightly more tiredness. Positive blood tests were not associated with the frequency or severity of any other symptoms. Diarrhea was the only symptom the predicted intestinal damage found when a biopsy was done. The study found symptoms of celiac disease are inconsistent in predicting the results of a blood tests and biopsies. This inconsistency led researchers to conclude symptoms should not be the only thing used to evaluate a patient’s response to a gluten-free diet. However, frequent and severe diarrhea should prompt a reevaluation of the condition of the intestine, they noted. Similarly, in Robert’s multinational study reviewing of patients who had biopsies at two different times, persistent symptoms were found in 78 percent of patients with damaged villi and 66 percent of patients who had normal biopsy results on follow up. More than half of the patients in the study who had a second biopsy had persistent damage. More than half of 184 patients in the study who had a second biopsy had persistent damage. In addition to the findings related to symptoms and damage, the study was designed to show physicians how to correctly take samples when a patient needs a second biopsy so changes are not missed   The gluten-free diet in real life Although celiac disease experts know that gluten regularly gets into the gluten-free diet, how often this happens in real life is not well understood. To get a better real world picture, researchers from universities in Canada and Argentina used urine and stool tests to measure gluten immunogenic proteins (GIP) from celiac disease patients following their normal diet. The availability of these tests enables researchers to quickly and accurately measure how much gluten has been consumed. They found that 96 percent excreted gluten in urine or stool at least once in four weeks. Forty five percent of all 92 urine samples collected and 26 percent of all 92 stool samples were positive for GIP. Researchers took samples in a way that allowed them to determine when gluten was consumed on weekdays versus weekends and found that 91 percent of study participants had gluten exposure on the weekend, possibly because they ate away from home more often. Patients with symptoms and without had a similar number of positive gluten tests, 3 times over the course of the study versus 2.5 times. The study concluded high frequency of consuming gluten was not influenced by whether patients had symptoms or not. The longer the study went on, the more evidence that study participants were eating gluten was found. Researchers attributed this to patients becoming more relaxed about their gluten-free diets. A change in behavior as a direct result of being in a clinical trial is called the Hawthorne effect. In other clinical trials in which gluten exposure was monitored, the opposite has occurred with patients becoming stricter about what they ate because their diets are being observed. When patients learned that evidence showed gluten was getting into their diets, they often responded that they were following a strict gluten-free diet. “’ I am doing my best,’’ Juan Stefanalo, the author who presented the study, quoted them as saying. One person in the study who consumed gluten only once was perplexed by how it could have happened, until she recalled the she had gone to Mass in a different church from the one where she normally got a gluten-free communion host. She realized the communion wine she did drink was cross-contaminated, Stefanalo said. Peter Green, MD, director of the Celiac Disease Center at Columbia University, asked whether the study evaluated whether the gluten transgressions being detected with the urine and stool tests had caused the study participants any real harm. “We are concerned we are driving these people crazy,” he said in a question and answer period following the lecture.  Green noted that researchers are increasingly looking at the effect anxiety about the gluten-free diet has on patients.   Chemistry and celiac disease monitoring Stanford University scientists have discovered chemically-defined gluten peptides that might lead to a new way of monitoring celiac disease. The study they presented marks the first time a chemically defined gluten peptide from the circulatory system was identified in a living organism. About 40 percent of people in the general population have the genes for celiac disease, leading to the question of why only 1 percent develop celiac disease. Some other factor clearly contributes to the onset, said study author and presenter Nielson Weng. Many chemical transformations are part of disease development, he noted. When wheat is eaten it goes through mechanical and chemical digestions leaving partially digested peptides, some of which are seen as toxic by the immune system of those who have celiac disease. In the small study based on 16 samples, researchers found that urinary gluten peptides in those with celiac disease had different biological and chemical properties compared to those who don’t have the condition. Now they are evaluating the potential use of the peptides as a non-invasive biomarker of celiac disease status. Urine samples were collected from patients who wanted to know if they have celiac disease. The patients fasted overnight, then urine samples were collected. Next, study participants were challenged by eating a gluten-containing bagel after which another urine sample was collected. Patients also had biopsies of the small intestine done to determine if they had celiac disease. Scientists were able to differentiate urine from patients with celiac disease from urine from those without celiac disease based on the chemical structures of the peptides.   Cooking up a better way to follow the gf diet Adults who took cooking classes that emphasized healthy, naturally gluten-free grains subsequently did a better job following the gluten-free diet and had an improved quality of life, according to a pilot study by Columbia University researchers.  Twelve men and women with celiac disease who were beginner to intermediate cooks took two cooking classes conducted by a chef and dietitian.  The classes focused on providing motivation for cooking, then giving the study participants the tools to follow through on that motivation. The classes detailed the risks of a gluten-free diet that lacked healthy gluten-free whole grains and included too many processed gluten-free products. Cooking at home was presented as a way to achieve a healthy diet, rich in gluten-free whole grains and variety. Participants in the study provided their medical history, information on their quality of life, symptoms, anxiety and depression and how well they followed the gluten-free diet. After the classes, participants reported significantly improved overall celiac disease quality of life, fewer social limitations and concerns about their future health. They also had better diet adherence and less depression, but anxiety increased, something the study noted needs to be further explored. They also had more positive expectations of the benefits of home cooking, more confidence in their ability to cook for themselves and others, and increased ability to identify whole grain and gluten-free foods. The study could serve as a model for cooking classes in other places, perhaps beginning at other celiac disease centers, said Randi Wolf, PhD, Columbia Teachers College, the study author who presented at DDW. “We should also look at the effects of cooking-based education interventions on long-term diet adherence and quality of life, as well as long-term measures of mucosal healing and the development of other autoimmune diseases,” Wolf said.
Organization announces Early Career Research Award in the field of celiac disease

Organization announces Early Career Research Award in the field of celiac disease

10/18/2018

October 18, 2018 – [Philadelphia] – Beyond Celiac is announcing the creation of the Society for the Study of Celiac Disease - Beyond Celiac Early Career Research Award, a joint venture to attract exceptionally promising early career academic investigators to the field of celiac disease research. The award will provide a clear and bold opportunity to expand the scope of research in this field that, to date, has been underfunded and underexplored. Beyond Celiac is funding this two-year grant, and SSCD is managing the grant application and research program.

The award aims to correct a significant gap in the gastrointestinal and autoimmune disease research portfolio. Celiac disease consistently received the lowest amount of federal research funding over a five-year period compared to other gastrointestinal conditions, as noted in a review published as a commentary in the journal Gastroenterology by Emma Clerx, Sonia Kupfer and Daniel A. Leffler. In general, NIH support is seen as essential for improving the understanding of health and disease. Key reasons for the disparity in NIH funding include a lack of investigators in the field – precisely because of historically poor funding – and the sometimes narrow expertise of peer review panels on NIH review committees. This SSCD-Beyond Celiac award is targeted to address this gap.

“This partnership is natural fit for our organizations. We at Beyond Celiac recognize that advancing science by creating incentives for those early in their careers is playing the ‘long game,’ but one that will ultimately get us across the goal to find treatments beyond the gluten-free diet, and hopefully, a cure,” noted Beyond Celiac Chief Scientific Officer Marie Robert, MD.

“The support of Beyond Celiac for this important grant encourages and facilitates the research initiatives of an early career investigator in the field of celiac disease. The project will comprise basic, clinical, translational, behavioral, or epidemiological research in celiac disease,” said Elena Verdú, MD, PhD, SSCD President.

“Our community is living with the burden of this disease every day. We live in fear of food. The gluten-free diet is not enough. The need for research funding is now. While we hope the NIH will increase its investment, we are doing what we’ve always done – helping our community live life to the fullest and fighting for people with celiac disease through any means necessary,” Alice Bast, CEO of Beyond Celiac added.

Those interested in applying for this important grant can learn more by visiting www.theceliacsociety.org/celiac_research.

About Beyond Celiac

Beyond Celiac unites with patients and partners to drive diagnosis, advance research and accelerate the discovery of new treatments and a cure.

A 501(c)(3) non-profit organization, Beyond Celiac envisions a world in which people with celiac disease can live healthy lives free from social stigma and fear of gluten exposure – A world Beyond Celiac. For more information, contact Claire Baker: [email protected] or (215) 325-1306, ext. 111.

Beyond Celiac celebrates Celiac Awareness Month with launch of new “Monster” video, sharable content

Beyond Celiac celebrates Celiac Awareness Month with launch of new “Monster” video, sharable content

5/1/2018

Ambler, PA – April 30, 2018 – May is Celiac Awareness Month, and Beyond Celiac is commemorating it with a month-long campaign: #ItsTimetoCeliACT. The organization has created sharable content that will enable those diagnosed with celiac disease to be actively involved in raising awareness about this serious genetic autoimmune disease that affects an estimated 3 million Americans. The community will be invited to share, shop, support, and add their voice to drive research for treatments and a cure.

New content includes:

  • Celiac Disease is a Monster video: This fast-paced and edgy animated video succinctly conveys the seriousness of celiac disease. Produced by Crosby Marketing Communications, the video captures the urgency and importance of patient-participation in research for treatments and a cure.
  • Infographics, buttons, icons and more: The Celiac Awareness Month site at Beyond Celiac has loads of sharable content made easy.

“May and celiac disease awareness month gives us a great platform to increase engagement,” said Alice Bast, Beyond Celiac CEO. “Our community has demonstrated that when we speak up, we can be heard. The gluten-free diet has overshadowed the seriousness of celiac disease. We need more and we need better. When we all pull together, we can increase awareness about celiac disease and its challenges, that accurate diagnosis is vital and that we can drive research for treatments and a cure.”

Other Celiac Awareness Month Happenings:

Party City Celiac Disease Research Fundraising Campaign: This past January, Party City aired an insensitive commercial which poorly portrayed celiac disease and the gluten-free diet. After the celiac disease community erupted on social media, Party City acted quickly to discontinue the ad and to apologize. The party goods retailer also took the extra step to learn more about celiac disease and made donations to support celiac disease research. Now, they're taking it a step further during Celiac Awareness Month with a register donation drive, the first national campaign of its type to support celiac disease research. Those shopping at Party City in May will be asked if they’d like to donate $1, $3 or $5 at checkout to support the cause.

Greater Philly Gluten-Free Expo: Beyond Celiac is a sponsor of the 3rd Annual Greater Philly Gluten-Free Expo. 90+ local and national vendors will be on hand, with seminars, door prizes, samples, products for purchase and more. Admission for youth 12 and under is free with adult.

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About Celiac Disease
Celiac disease is a serious, genetic, autoimmune disorder that affects an estimated 1 in 133 Americans, 83% of whom are still undiagnosed. The disease causes debilitating symptoms, and if left untreated, can lead to serious long-term health problems including infertility and some types of cancer.

Beyond Celiac:

A 501(c)(3) non-profit organization, Beyond Celiac envisions a world in which people with celiac disease can live healthy lives free from social stigma and fear of gluten exposure – A world Beyond Celiac.

Beyond Celiac unites with patients and partners to drive diagnosis, advance research and accelerate the discovery of new treatments and a cure.

Media Contact:

Claire Baker, Beyond Celiac, 267-419-2111, [email protected]

Kim Pacini, Beyond Celiac, 267-419-2103, [email protected]

Beyond Celiac Hiring Chief Scientific Officer Marie Robert, MD

Beyond Celiac Hiring Chief Scientific Officer Marie Robert, MD

2/6/2018

PHILADELPHIA (February 5, 2018) – Beyond Celiac has announced the hiring of Marie Robert, M.D. as Chief Scientific Officer. Dr. Robert will lead the development and implementation of a transformational patient-centered research agenda focused on accelerating solutions toward new pharmaceutical treatments and a cure for celiac disease. She will develop and establish research and funding priorities and will translate the Beyond Celiac Research Consortium findings to impact patients in areas including clinical decision-making about diagnosis, disease management, treatment, and eventually a cure.

“Beyond Celiac is uniquely positioned to engage patients and scientific partners in a synergistic effort to further clinical, basic and translational research on celiac disease. I am eager to work with this extraordinary organization to realize that vision,” notes Dr. Robert.

Professor of Pathology and Medicine at Yale University School of Medicine, Dr. Robert is a nationally recognized gastrointestinal, liver, and pancreatic surgical pathologist with 25 years of experience in clinical diagnosis, teaching, and collaborative scientific endeavors across a wide spectrum of diseases. Specific areas of expertise include inflammatory and neoplastic conditions of the gastrointestinal tract. Dr. Robert has served as the Director of the Program in Gastrointestinal Pathology and Director of the Fellowship in Gastrointestinal Pathology at Yale University. She is an author of guidelines in the practice of gastrointestinal pathology diagnosis (American Gastroenterology Association, North American Society for the Study of Celiac Disease and Rodger Haggitt Gastrointestinal Pathology Society). She has served on numerous national boards and committees and is a past president of the Rodger Haggitt Gastrointestinal Pathology Society.

Dr. Robert has studied celiac disease throughout her career. During residency at UCLA she performed a study of the biopsy findings in refractory celiac patients, in which collagenous sprue was identified as a common histologic change. Additional work on celiac disease includes contributions on inflammatory conditions of the small intestine in the Odze, Goldblum and Crawford (eds) textbook “Surgical Pathology of the Gastrointestinal Tract, Liver, Biliary Tract and Pancreas,” considered the definitive text in gastrointestinal surgical pathology worldwide. She is the lead author of an upcoming best practices statement on the use of duodenal biopsy in the diagnosis of celiac disease, as well as a study on diagnostic approaches to refractory celiac disease. Dr. Robert is frequently invited to speak on celiac disease nationally and internationally. She is slated to begin her official duties with Beyond Celiac in April 2018 and will also continue in her role at Yale.

“Investing in our scientific expertise will enable Beyond Celiac to directly impact the direction and focus of celiac disease research, amplifying the patient’s voice as we look for much-needed answers for this burdensome disease,” adds Alice Bast, Beyond Celiac CEO. “As a non-profit advocacy organization, we are launching this patient-driven science model, proven in other areas such as cystic fibrosis, to further our mission of uniting patients and partners to drive diagnosis, advance research, and accelerate the discovery of new treatments and a cure for this serious, genetic autoimmune disease.”

In addition to the recruitment of Dr. Robert, Beyond Celiac has retained consultant Marla Gold, MD, FACP. With an extensive background in research strategy and public health, Dr. Gold will support research collaborations, corporate programs and the development of the Go Beyond Celiac patient registry. Dr. Gold is currently Dean Emerita and Professor of Health Management and Policy with the Dornsife School of Public Health at Drexel University. An infectious disease specialist, she has long served on the Beyond Celiac Scientific/Medical Advisory Council and has a personal interest in the organization’s mission because celiac disease affects her immediate family.

The Beyond Celiac science team also includes Kate Avery, MPH, Director of Research and Patient Engagement. Avery earned her MPH in Health Behavior at University of North Carolina at Chapel Hill. Avery has been leading the development, launch, enrollment and patient engagement for the Beyond Celiac interactive digital community and patient registry, Go Beyond Celiac , since March 2017. She previously published on the topic of patient perspectives in disease management.

Also a member of the Science Department is Medical and Science News Analyst Amy Ratner. Through her reporting, Ratner curates the latest in celiac disease research and shares it in patient – and community – friendly language.

Beyond Celiac has worked with experts in the field of celiac disease through its Scientific/Medical Advisory Council since its founding. Established in 2003, the Beyond Celiac Scientific/Medical Advisory Council has played an integral role in establishing and maintaining evidence-based standards for the organization and represents the very best in scientific and medical practice. Dr. Robert will work closely with the established Council and strengthen ties between staff and our external advisors.

Media Contact:
Claire Baker, Director of Communications and New Media
Beyond Celiac
267-419-2111
[email protected]

Beyond Celiac Announces Addition of New Board Members

Beyond Celiac Announces Addition of New Board Members

1/29/2018

Philadelphia, PA, Jan. 25, 2018 -- Beyond Celiac, a leading patient advocacy organization serving the 2.5 million Americans with celiac disease, announced the addition of two new members to its Board of Directors. These board members will help further the organization’s mission of uniting with patients and partners to drive diagnosis, advance research, and accelerate the discovery of new treatments and a cure for this serious, genetic autoimmune disease.

Chad P. Shaffer, MD, FAAFP, Assistant Professor of Medicine, Retired, University of Missouri-Kansas City School of Medicine.Dr. Shaffer was a practicing family physician with more than 25 years’ experience until becoming ill with refractory celiac disease. In addition to bringing extensive medical experience and a first-hand patient perspective to this board position, Dr. Shaffer participated in the groundbreaking Beyond Celiac 2015 Research Summit and served as a co-chair of the very successful inaugural Step Beyond Celiac Kansas City 5K and Auto Show, raising $60,000 for Beyond Celiac in 2017. Dr. Shaffer joins the Beyond Celiac Board from Overland Park, KS.

Jennifer Platzkere Snyder, Partner, Dilworth Paxson LLP.Ms. Snyder represents employers in addressing all aspects of labor and employment law, including employment discrimination litigation, wage and hour compliance, restrictive covenants and trade secrets, and traditional labor-management relations. In 2017, Ms. Snyder was inducted into the College of Labor and Employment Lawyers, and she currently serves as the Employer Co-Chair of the American Bar Association’s Committee on Practice and Procedure under the National Labor Relations Act. A graduate of the Wharton School of Business and Villanova University School of Law, Ms. Snyder lives with her husband and three children in Bala Cynwyd, PA. In addition to her business and legal expertise, Ms. Snyder joins the board with a personal family connection to celiac disease, gluten sensitivity, as well as a variety of other related conditions.

“We are proud to add these respected professionals to our leadership team. Their support and participation will help us advance celiac disease awareness, diagnosis and treatments,” noted Alice Bast, Beyond Celiac CEO.

Alan M. Ehrlich, MD , Executive Deputy Editor, DynaMedand Assistant Professor of Family Medicine, University of Massachusetts Medical School. Dr. Ehrlich joined the Beyond Celiac Board of Directors in 2016 and assumed the role of Board Chair in November 2017. Dr. Ehrlich brings personal knowledge of celiac disease to this position. He joins the Board from Westborough, MA.

About Beyond Celiac
Beyond Celiac, a 501 (c)(3) non-profit organization formerly known as the National Foundation for Celiac Awareness, is advancing research for treatments in addition to the gluten-free diet, which is difficult to manage and often incomplete and insufficient. In 2017, Beyond Celiac launched Go Beyond Celiac, an online patient platform and registry designed to bring patients and scientists together to speed research. For more information, please visit www.beyondceliac.org.

Beyond Celiac Announces Innovative Collaborative Research Effort: Go Beyond Celiac digital community

Beyond Celiac Announces Innovative Collaborative Research Effort: Go Beyond Celiac digital community

9/5/2017


PHILADELPHIA (SEPTEMBER 5, 2017) – Beyond Celiac today announced the launch of Go Beyond Celiac, a digital community that will enable Beyond Celiac to accelerate treatment options by engaging people with celiac disease, creating an online portal to amass critical data that are not uniformly collected and curated today, including qualitative data about the experience of living with celiac disease, the path to diagnosis and disease management. Go Beyond Celiac is designed to make it easier for people with celiac disease to share their stories at a population level with researchers and participate in research, including clinical trials.

"Each person's experience of celiac disease is unique, from the symptoms a person has before diagnosis to how the disease responds to the gluten-free diet. A rich dataset of patients' journeys would help researchers focus on the important questions whose answers could ultimately improve the lives of those with the disease," notes Jake Hughey, PhD, a researcher at Vanderbilt University Medical Center who has celiac disease himself.

When diagnosed with celiac disease, a patient is typically told the gluten-free diet is a cure for the autoimmune disease. However, that’s far from the truth. In fact, the gluten-free diet is an unreliable and incomplete treatment. In a recent Beyond Celiac survey, 20% of survey respondents said they have symptoms of gluten exposure at least once a month. Ciaran P. Kelly, MD, Beyond Celiac Board Member and the Director of the Celiac Center at Beth Israel Deaconess Medical Center/Professor of Medicine at Harvard Medical School notes, “At least 10 percent of those with celiac disease who follow a gluten-free diet have ongoing or recurrent celiac disease-related symptoms or signs and physicians are not sure why that is whether it is continued exposure or other causes.” Further, people with celiac disease report a very high burden of disease, comparable to end stage renal disease. In one study, 25% of patients stated that the diet is so burdensome they regretted being diagnosed and would rather have continued having symptoms.

Go Beyond Celiac will capture patient data, including:

  • Experiences before, during and after diagnosis
  • Past and current symptoms
  • Psychosocial and economic impacts of living with celiac disease

Go Beyond Celiac also provides personalized interaction between community members and creates opportunities for dialog to identify unmet needs and opportunities for improved diagnoses, treatments, and to help our community live life to the fullest.

“My son Mitchell was diagnosed with celiac disease after four years of being told that he had a very rare condition called Periodic Fever Syndrome. He suffered needlessly from the ages of 10-15 and missed out on so much. We had been all over the country searching for answers for him, even after doctors gave up and labeled him a psych case because they couldn't figure it out. Finally getting a definitive celiac disease diagnosis was such a relief. Your organization was one of the first we turned to for information. Support for research that will be accelerated through Go Beyond Celiac will spare other families from many hours and much heart ache.”

Go Beyond Celiac will also include a secure, one-of-a-kind celiac disease registry that will keep the community up to date on the latest in medical research and available clinical trials for which they qualify and in which they may wish to participate. In addition, the Go Beyond Celiac registry will be used to assist researchers in pre-screening and recruiting potential participants, reducing a barrier to successful research, accelerating opportunities to improve diagnosis rates, and helping people with celiac disease cope with this serious genetic autoimmune disorder.

In addition, Beyond Celiac also announced that on November 9th, the organization will host the first ever Bold Beyond Research Symposium , bringing together noted researchers, clinicians and community members to explore the current state and future directions of celiac disease research. The Symposium, which will be held on the Drexel University campus and also webcast to a live audience worldwide, is planned to spur dialogue about research-community partnerships and drive celiac disease community involvement through Go Beyond Celiac.

The Bold Beyond Research Symposium, moderated by Alice Bast, Beyond Celiac CEO, will consist of a live panel presentation and discussion, featuring:

Ciaran P. Kelly, MD, Director, Celiac Center and Director, Gastroenterology Fellowship Training, Beth Israel Deaconess Medical Center; Professor of Medicine, Harvard Medical School

Anthony J. DiMarino, Jr., MD, Chief, Division of Gastroenterology & Hepatology, Thomas Jefferson University Hospital

Ritu Verma, MD , Section Chief, Gastroenterology, The Children's Hospital of Philadelphia; Associate Professor of Clinical Pediatrics, Perelman School of Medicine at the University of Pennsylvania

“The gluten-free diet is an incomplete and unreliable treatment, and yet it’s all we’ve got,” says Alice Bast, CEO of Beyond Celiac. “No other options have been developed since gluten was identified as the culprit in celiac disease some 70 years ago. We deserve better. We need a 21st century research agenda and Go Beyond Celiac and the Research Symposium are designed to speed our community’s progress.” People with celiac disease are invited to join Go.BeyondCeliac.org to participate in advancing research in the field. For more information about attending the Bold Beyond Research Symposium either in the live audience or via webcast, visit www.BeyondCeliac.org/BoldBeyondSymposium.

About Beyond Celiac
Beyond Celiac, a 501 (c)(3) non-profit organization formerly known as the National Foundation for Celiac Awareness, unites with patients and partners to drive diagnosis, advance research and accelerate the discovery of new treatments and a cure. For more information, please visit www.beyondceliac.org.

Beyond Celiac announces new mission, strategic plan, and research initiative

Beyond Celiac announces new mission, strategic plan, and research initiative

4/28/2017

Ambler, PA – April 27, 2017 – Beyond Celiac developed its new the 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. Today, a medically-necessary gluten-free diet, which requires abstinence from wheat, barley, rye and their derivatives, is the only available treatment. Despite strict adherence to the gluten-free diet, recent research shows that up to one-third of people with celiac disease continue to experience intestinal damage caused by the body’s immune response to gluten.

Since its founding in 2003, Beyond Celiac has played a key role in increasing the rate of diagnosis, making more gluten-free foods available on mainstream store shelves and supporting the community in managing the disease. With mounting evidence that the gluten-free diet is not enough to stop persistent intestinal damage, which leads to a host of serious health issues, such as depression, anxiety, infertility, migraines, osteoporosis and even certain cancers, Beyond Celiac has turned its formidable influence to conquering the disease all together.

In 2017, Beyond Celiac is building an on-line community to make sure that people with celiac disease are active participants in research efforts aimed at improving their quality of life. This includes 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,” said Alice Bast, CEO of Beyond Celiac.

Until science has advanced an effective treatment beyond the gluten free diet for celiac disease, Bast says Beyond Celiac will remain vigilant in pushing for increased access to safe, gluten-free food options to help people manage their celiac disease. “We will continue to be a trusted resource to the community until a cure is found.”

Visit www.BeyondCeliac.org or www.facebook.com/beyondceliac

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About Celiac Disease
Celiac disease is a serious, genetic, autoimmune disorder that affects an estimated 1 in 133 Americans, 83% of whom are still undiagnosed. The disease causes debilitating symptoms, and if left untreated, can lead to serious long-term health problems including infertility and some types of cancer.

Beyond Celiac:

Beyond Celiac unites with patients and partners to drive diagnosis, advance research and accelerate the discovery of new treatments and a cure.

A 501(c)(3) non-profit organization, Beyond Celiac envisions a world in which people with celiac disease can live healthy lives with freedom from social stigma and fear of gluten exposure – A world Beyond Celiac.

Media Contact: Claire Baker, Beyond Celiac, 267-419-2111, [email protected]

Celiac Disease Screening Guidelines Should Be Clearer for At-Risk Individuals

Celiac Disease Screening Guidelines Should Be Clearer for At-Risk Individuals

3/30/2017

Philadelphia, PA - March 30, 2017 -On March 28, 2017, the US Preventive Health Services Task Force published a statement on celiac disease testing, announcing that there is insufficient evidence to “assess the balance of benefits and harms of screening for celiac disease in asymptomatic individuals.”

Leaders of Beyond Celiac agree with the Task Force that more research, including population-based studies, are needed to assess the value of screening the in the general US population, and in targeted populations at increased risk such as those with family members who have celiac disease and those with other autoimmune disorders. That research will then provide the Task Force with the evidence it needs to say definitively in what situations screening would – or would not – be valuable.

In the absence of that research, it is important to continue diagnosing people with celiac disease. “It is critical that the USPSTF statement be interpreted correctly,” says Alice Bast, CEO of Beyond Celiac. “People at increased risk because relatives have been diagnosed or with symptoms should strongly consider being tested. Waiting until definitive research is available to assess any benefits of screening can result in undiagnosed patients suffering needlessly.”

Not only will patients and their families benefit, but their healthcare providers, employers and health insurers will benefit as well. People who have been diagnosed and who then avoid gluten, improve the quality of their health, their life and their ability to study or work. They lower their chances of suffering from other serious disease complications, including miscarriage, osteoporosis, malnutrition and cancer.

Patients and clinicians should note that the Task Force statement is not a recommendation against targeted screening of higher risk individuals. It is merely stating that the benefits and harms are unknown due to a lack of data. As such, the decision to screen or not screen patients at increased risk for celiac disease should be made on a case-by-case basis.

Individuals at higher risk for celiac disease – those with other autoimmune diseases such as thyroid disease or type 1 diabetes, related conditions such as anemia, which can often seem “silent” to patients, and those with a family history of the disease should discuss screening for celiac disease with their doctors. In addition, those with any of the many symptoms should be tested as well.

“Doctors need to have a low threshold for testing symptomatic patients for celiac disease because the symptoms of this serious autoimmune disease overlap with many more benign conditions”” notes Alan Ehrlich, MD Clinical Associate Professor of Family Medicine at University of Massachusetts Medical School and Beyond Celiac Board Member. “Both patients and their doctors need to know that early identification and treatment of celiac disease can prevent many years of health damage that cannot be reversed.”

Bast is concerned that these recommendations will be misinterpreted to suggest the USPSTF is recommending against screening, rather than simply pointing out there is a lack of data to allow them to make a recommendation, and this may make it difficult for patients to get appropriate diagnostic tests. Experts estimate that roughly 83 percent of people with celiac are undiagnosed – an alarming statistic given the rate of celiac disease is doubling every 15 years.

“I know that I share the celiac community’s sincere hope that the day will come when being diagnosed quickly is the norm, and people no longer suffer for years with no answers,” added Bast. “A research plan to address the questions raised by the Task Force and others is important. We also need good guidelines for testing and better physician education and adherence to those guidelines to be sure no one suffers the consequences of undiagnosed celiac disease.”

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About Celiac Disease

Celiac disease is a serious, genetic, autoimmune disorder that affects an estimated 1 in 133 Americans, 83% of whom are still undiagnosed. The disease causes debilitating symptoms, and if left untreated, can lead to serious long-term health problems including infertility, osteoporosis and some types of cancer.

About Beyond Celiac

Beyond Celiac, formerly known as the National Foundation for Celiac Awareness, is a leading advocacy organization committed to improving awareness and understanding of celiac disease as a serious genetic autoimmune disease; accelerating innovation to support those with celiac disease to live life to the fullest; and forging pathways to a cure. We aim to inspire hope, build a strong community and serve as a trusted resource on celiac disease. For more information, please visit www.beyondceliac.org. Beyond Celiac is a 501(c)(3) non-profit organization.

Media Contact:
Claire Baker
267-419-2111
[email protected]

Beyond Celiac Announces Addition of New Board Members

Beyond Celiac Announces Addition of New Board Members

12/1/2016

Philadelphia, PA (December 1, 2016) – Beyond Celiac, a leading patient advocacy organization serving the 2.5 million Americans with celiac disease, announced the addition of new members to its Board of Directors.

“We are proud to add these respected innovators to our leadership team. These accomplished professionals will help us move the needle on the state of celiac disease awareness, diagnosis and treatments,” noted Alice Bast, Beyond Celiac CEO.

Robert J. Beall, PhD

Dr. Beall served as the President and CEO of the Cystic Fibrosis Foundation for 19 years. Under his leadership, the CF Foundation became one of the most respected voluntary health organizations in the country and recognized for its innovative approaches to bring new therapies to patients with the disease. The CF Foundation and its success have been the subject of articles in Business Week, Forbes, The New Yorker and other major publications. In addition, the foundation has been the subject of two Harvard Business School case studies. During Dr. Beall’s tenure, innovative medical programs contributed to a dramatic rise in life expectancy in CF patients, and a pipeline of nearly 30 drugs in development to treat all aspects of the disease, including the underlying cause of cystic fibrosis. When Beall joined the Foundation in 1980, the median predicted age of survival for a person with the disease was 18 years of age -- today it is more than 40 years. For the first time ever, more than 50 percent of people with CF are over 18 years of age. CF is no longer a pediatric disease. Dr. Beall resides in Potomac, MD.

Glenna M. Crooks, PhD

As Founder of SageLife, LLC, Dr. Crooks has created new ways to understand, visualize and transform personal, family, career and business networks to improve health, happiness and success. Previously, as Founder of Strategic Health Policy International, Inc. she solved tough healthcare problems for business and government clients globally. Known as a “one-woman think tank” by her clients – businesses and governments globally, she brought significant innovations to the field, earning her recognition as a Disruptive Woman in Healthcare. She served as a senior policy advisory in government, appointed by President Ronald Reagan. Later, during Merck & Co., Inc.’s Most Admired Corporation years, her policy group was recognized as the best in the Fortune 500. She was Chair of the National Commission on Rare Diseases and received the Congressional Exemplary Service Award for Orphan Products Development. She was the first civilian to receive the highest award for contributions to public health, the Surgeon General’s Medallionfrom C. Everett Koop.

Dr. Crooks’ new book, The Network Sage: Unleashing Your Pit Crew Network Superpower, will be published later this year. Dr. Crooks resides in Philadelphia, PA.

Ciaran P. Kelly, MD

Dr. Kelly is Professor of Medicine at Harvard Medical School and Chief of the Herrman L. Blumgart Internal Medicine Firm, Director of Gastroenterology Training and Medical Director of the Celiac Center at Beth Israel Deaconess Medical Center, Boston, Massachusetts. He heads clinical, research and educational programs in celiac disease as Medical Director of the Celiac Center at Harvard. Dr. Kelly has longstanding clinical and research interests in intestinal infection and inflammation. He is the author of more than 150 clinical and basic research book chapters, invited reviews, and peer-reviewed publications appearing in such journals as Infection & Immunity, American Journal of Physiology, Gastroenterology, Journal of Biological Chemistry, Journal of Clinical Investigation, The Lancet and New England Journal of Medicine. Dr. Kelly works and resides in the Boston area.

“These new board members will be instrumental in engaging researchers, medical professionals, pharmaceutical companies, regulators, patients and their families, as well as donors and many others in improving the quality of life and health outcomes for the 1 in 133 who are living with celiac disease,” Bast added.

About Celiac Disease

Celiac disease is a serious, genetic, autoimmune disorder that affects an estimated 1 in 133 Americans, 83% of whom are still undiagnosed. The disease causes debilitating symptoms, and if left untreated, can lead to serious long-term health problems including infertility, osteoporosis and some types of cancer.

About Beyond Celiac

Beyond Celiac, formerly known as the National Foundation for Celiac Awareness, is a leading advocacy organization committed to improving awareness and understanding of celiac disease as a serious genetic autoimmune disease; accelerating innovation to support those with celiac disease to live life to the fullest; and forging pathways to a cure. We aim to inspire hope, build a strong community and serve as a trusted resource on celiac disease. For more information, please visit www.beyondceliac.org. Beyond Celiac is a 501(c)(3) non-profit organization.

Media Contact:
Claire Baker
267-419-2111
[email protected]

Beyond Celiac is Hiring!

Beyond Celiac is Hiring!

9/29/2016

AMBLER, Pa. – September 29, 2016 Headquartered in Ambler PA, Beyond Celiac is a 501c3 nonprofit organization with a national and increasingly international constituency reached through direct programming and a robust online presence and a comprehensive social media program. Beyond Celiac is known for its excellent and timely education and research initiatives, coupled with strategic partnerships and powerful collaborations.

Now is your chance to join a team of professionals working to drive celiac disease diagnosis, improve the quality of life for people living with the condition, and drive breakthroughs in celiac disease research for treatment options and hopefully, one day, a cure.

The Executive Director of Development will report directly to the CEO and will be a member of the senior management team, as well as a member of a team of professionals who work passionately every day to make a difference in the lives of others. The chosen candidate will work with community and business leaders to advance the mission of the organization while building a first rate development program engaging a broad range of constituents.

The emphasis for the Executive Director of Development is on developing an expanded scope of loyal major donors, nurturing current faithful donors, securing funding via institutional and family foundation grants, and garnering access to research dollars.

“I’m very excited about the future of Beyond Celiac, and I’m looking forward to partnering with an Executive Director of Development to make our future dreams of a life without celiac disease a reality,” noted Alice Bast, Beyond Celiac CEO.

Beyond Celiac also is hiring a Digital Media Manager to develop new marketing content that will engage the celiac disease and gluten-free communities while driving the Beyond Celiac mission forward.

The Executive Director of Development and the Digital Media Manager will join this organization at a time of rapid and significant transition, including promising discoveries in this field that will transform people's awareness of celiac disease.

The Digital Media Manager will be located at the Beyond Celiac headquarters in the Philadelphia suburb of Ambler, PA. The Executive Director of Development can operate from the Ambler office or work remotely.

Qualified candidates are invited to apply for these positions by sending a cover letter, resume and salary expectations to [email protected] Please put the job title in the subject line of your email and indicate how you learned of this job opening.

About Beyond Celiac
Beyond Celiac, formerly known as the National Foundation for Celiac Awareness, is a leading advocacy organization committed to improving awareness and understanding of celiac disease as a serious genetic autoimmune disease; accelerating innovation to support those with celiac disease to live life to the fullest; and forging pathways to a cure. We aim to inspire hope, build a strong community and serve as a trusted resource on celiac disease. For more information, please visit www.beyondceliac.org.

Media Contact:
Claire Baker
Beyond Celiac
267-419-2111
[email protected]

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