Beyond Celiac Awards Nearly $450,000 in Research Grants
Beyond Celiac has awarded close to $450,000 to two scientists conducting groundbreaking celiac disease studies. One study is aimed at killer cells that cause the actual intestinal tissue damage in celiac disease and the other is researching a more exact way to measure intestinal damage revealed in a biopsy. In addition, Beyond Celiac awarded an Early Career grant of $150,000 earlier this year, bringing the total invested in research to nearly $600,000 in 2019. Overall, Beyond Celiac gave top priority in awarding these two newest 2019 grants to research investigating the role of T-cells in driving the immune response in celiac disease. White blood cells that function as the body’s disease-fighting soldiers, T-Cells are improperly activated by gluten in those who have celiac disease. “The scientific world is looking at celiac disease as part of the broader autoimmune disease spectrum, and progress is being made as a result. At Beyond Celiac, we remain committed to our mission of advancing research with an international scope and supporting scientists who study immunological diseases,” said Alice Bast, CEO of Beyond Celiac. Established Career Award Paul Klenerman, PhD, a professor of gastroenterology at the University of Oxford, Oxford, England, and an immunologist who has done extensive work in Hepatitis C and HIV, has received the Established Investigator Award, a grant of up to $100,000 for each of three years. The award places emphasis on immunology and is designed to support novel approaches to understanding celiac disease. It also encourages scientists working in another related field, like Klenerman, to turn their attention to celiac disease. Klenerman’s research will focus on T-cells in the inner gut lining – killer CD8 T-cells. Currently, it’s known that a particular type of CD8 T-cell is abundant in the gut of celiac disease patients even when they are on the gluten-free diet. “These cells have features which suggest they are responding to a particular, unknown signal, and acting to cause inflammation, potentially driving celiac disease,” Klenerman explained. “We do not yet fully know what activates them, how they cause damage and how they can be regulated.” His work will attempt to answer these questions and look more closely at a new cell type that is driving inflammation and tissue damage in celiac disease. Klenerman plans to explore the cells’ role in celiac disease and what triggers them, which may directly lead to improved tests and treatments. Pilot and Feasibility Award The Pilot and Feasibility Award, which is given to help scientists collect the preliminary data needed to begin answering major questions about celiac disease, has been awarded to Jocelyn Silvester, MD, director of research at the Celiac Disease Program at Children’s Hospital, Boston. Silvester will receive a grant of up to $80,000 for each of two years. Preliminary data show that transcriptomics – the study of all ribonucleic acid (RNA) molecules within a cell - of intestinal biopsies can identify genes that correlate to inflammation caused by gluten. This type of early phase of study could lead to breakthroughs for larger scale research or clinical trials. “When Beyond Celiac formed its Scientific Advisory Council earlier this year, one goal was to give vigorous review to the grant applications we receive,” said Marie Robert, MD, chief scientific officer of Beyond Celiac and the only CSO of a celiac disease patient advocacy group in the United States. “We achieved that goal through the selection of top notch research by top notch scientists.”
Scientists Find Way to Detect Rye Gluten in Foods

By Jackson Buttery, Beyond Celiac Communications Assistant

At National Science Week in Melbourne, Australia, scientists from CSIRO, Australia’s national science agency, announced that they’ve found a way to detect the presence of rye in food.  Gluten is a protein found in rye, along with wheat and barley. A strict gluten-free diet is currently the only treatment for people with celiac disease. Previously, scientists from CSIRO have discovered methods to detect wheat, barley and oats in 2015, 2016 and 2018, respectively.

Using varieties of rye from twelve countries milled into flour, the researchers extracted the gluten proteins and used special mass spectronomy to identify six proteins unique to rye, but not apparent in other grains. The researchers then tested food with rye as a listed ingredient and “gluten-free” food without rye listed. From a range of commercial “gluten-free” foods tested, one breakfast cereal and one spelt flour were found to contain trace amounts of rye.

While commercially available sensors have been able to detect if gluten is in a particular food, none are yet available that can detect the presence of a particular gluten-containing grain, such as rye. Scientists from CSIRO are optimistic that this new technology may soon become available in at-home testing kits to provide security for those with celiac disease, and certainty for manufacturers.

According to Professor Michelle Colgrave, protein analytics expert with CSIRO, “being able to detect any protein in diverse foods and beverages will help food companies ensure that what’s in the pack is what’s on the pack, and help consumers trust pack labelling around gluten-free claims.”

The ability to detect specific grains is especially important in Australia, which has stricter gluten-free labelling standards than the FDA’s standard of 20ppm. For a product to be labeled gluten-free, not only can it not have any detectable level of gluten (lower than 3-5ppm), it also can not contain any of the four gluten-containing grains (wheat, barley, rye, and oats).

These stricter standards provide greater scrutiny for companies⁠—such as in one instance noted in the testing process, when a breakfast cereal labeled “gluten-free” contained trace amounts of rye⁠—but also better security for patients with celiac disease.


Read more about the gluten-free labeling standards here.

Beyond Celiac Launches New App
Beyond Celiac, the leading celiac disease organization working to drive diagnosis, advance research and accelerate the discovery of new treatments and a cure, has launched a first-of-its-kind mobile app to complement its online research database, Go Beyond Celiac, providing more convenience and opportunity for patient engagement. Go Beyond Celiac, which has enrolled thousands of members since its launch in 2017, is an online database created by people with celiac disease, for people with celiac disease. Users can participate in research by sharing their stories and experiences and learn how to become involved in celiac disease research studies. The new app now makes Go Beyond Celiac more interactive and engaging, and the mobile convenience encourages more people to visit and share their experience of living with and managing celiac disease. This is done through surveys that can be filled out at users’ convenience. The app also offers helpful insights about events, educational opportunities and more. Go Beyond Celiac members will be able to see how they compare to others as a more complete picture of celiac disease emerges from the data collected.

“Understanding how people have been impacted by celiac disease is some of the most important information researchers and doctors need in order to accelerate celiac disease research,” said Alice Bast, CEO of Beyond Celiac. “Go Beyond Celiac provides us with the ability to tell them what life is like before, during and after our diagnosis.”

In addition to driving research that leads to a better understanding of how celiac disease develops, the Go Beyond Celiac online tool provides opportunities to increase timely diagnosis and improve the diagnosis experience, inform research about the burden of living with celiac disease, accelerate the development of treatment alternatives to the gluten-free diet and ultimately help find a cure. “While awareness of celiac disease is higher than ever, people living with this genetic autoimmune condition struggle to be taken seriously. At Beyond Celiac, we are working to address this need. We are a bridge between the community and the researchers who are focused on finding answers to our challenges,” added Bast. The Go Beyond Celiac app is available for both iOS and Android devices.
Nexvax2 Setback Only One Aspect of Ongoing Scientific Discovery
Alice Bast, Beyond Celiac CEO Many people in the celiac disease community have asked me about the news that ImmusanT has discontinued its clinical trial investigating the Nexvax2 vaccine. My response to everyone is the same – don’t be discouraged. Don’t give up on the possibility we will eventually have better options than the gluten-free diet alone. Don’t give up on a cure. As much as we’d like research into new treatments for celiac disease to be a straight shot from start to finish in record time, it rarely happens. Scientific discovery is usually a slow, incremental process, with successes and failures both building on each other to create a complete picture of how a disease can be treated and hopefully cured. Most in the celiac disease research community, including scientists working on competing new treatments, were disappointed by news of the failure of Nexvax2 to suppress the immune response to gluten and consequently the effects of celiac disease. But they also quickly pointed out that a lot is learned from trials with negative outcomes, that the point of clinical trials is to thoroughly investigate what works and what doesn’t and that there are a number of promising different approaches in the celiac disease drug pipeline. One drug has  even beaten the odds and made it to Phase 3 of clinical trial. Additionally, the scientific world is looking at celiac disease as part of the broader autoimmune disease world, and progress is being made as a result. Those who study immunological diseases around the world have a growing interest in celiac disease. At Beyond Celiac, we remain committed to our mission of advancing research and supporting scientists even in the face of setbacks. We will soon announce the recipients of two new Beyond Celiac research grants. Perhaps most important to mention is the patients who volunteered for the Nexvax2 trial, as well as all those who have participated in any other celiac disease study. ImmusanT helped protect the wellbeing of the study participants by ending the trial early after results showed they were not getting any benefit from the drug compared to the placebo. I personally want to thank the Nexvax2 participants for stepping up.  And I want to encourage others to continue to volunteer and not let the outcome of this trial dissuade you. Be reassured that drug developers do take the steps needed to minimize risk and remember that research cannot progress without patient participation. I also want to thank ImmusanT for pursuing a treatment for celiac disease with such dedication and care. The investment the company has made through its scientific, regulatory and business knowledge, as well as funding, is hard to describe or comprehend. We don’t yet know what the future holds, but we can only praise all the work that has been done in the past. To keep this in perspective, think of the best way to respond to setbacks in your own life. If your child fails a test, if a project at work isn’t going well, if you try a difficult career change, if you have a fight with a friend, you most likely don’t throw your hands in the air and give up. You learn from your experience and move forward. That’s what happens in the research community, too. ImmusanT is looking at the trial results to better understand the outcome and will share what it learns. And we’ll all be a little closer to treatment choices beyond the gluten-free diet for celiac disease patients in the end.
The Celiac Disease Paradox
The celiac disease community is caught between being empowered to take control of our well-being while struggling to do so because our only treatment – the gluten-free diet – is burdensome and unreliable
Alice Bast, Beyond Celiac CEO Celiac disease. It’s serious! I’m not sick! I need accommodations! I do not have a disability! I’m fine! I got glutened and spent the night vomiting (or weekend with a migraine or fill in the blank)! I’ve got it under control! I don’t mind not eating out or having to take my own food. It’s my new normal. I’m so upset that I can’t just live my life free from the worry of gluten exposure and the stigma of having to live this way. If you have celiac disease, you may have said all of these things at one time. It’s what we at Beyond Celiac have started calling the Celiac Disease Paradox. Healthy but not always. Well-adjusted but struggling sometimes. Empowered yet dependent on others whom we have to trust to keep our food safe. Those of us with celiac disease have to think about everything we put in our mouths from the time we wake up to the time we go to sleep. For me, as CEO of Beyond Celiac, despite the fact that I am extremely careful, I still get glutened. Just last night, I attended an event and did not trust any of the food, so I didn’t eat. I hear stories like this from people in our community all the time. We are never free of the worry and vigilance. What’s more, I will never be free from my history of loss due to celiac disease – the lost years, the loss of multiple pregnancies, the loss of my daughter Emily to a full-term stillbirth. All because of celiac disease. Do I like to think of myself as suffering? Certainly not. But we cannot deny that celiac disease causes suffering. In fact, studies show the perceived burden of the disease by those who have it is second only to the burden reported by those who have end-stage renal disease. That’s why we at Beyond Celiac joined with four other celiac disease organizations to partner on a provocative awareness campaign including recipe videos with dangerous ingredients. These videos are targeted to raise awareness among those who don't already know about celiac disease or who may have confused a serious genetic autoimmune disease with a fad diet. Most people don't know the challenges of living with celiac disease and struggle to understand how dangerous gluten is to our community, even if they know someone who has celiac disease. The campaign is designed to build empathy for those of us who have to be wary of every bite of food. It is provocative in order to focus attention on this reality and raise awareness with the general public. We can’t just settle and put up with the status quo. We need more. We need better.  We need to be able to eat without fear. We hope that this campaign can get some attention from the audience it was intended for: The people who haven’t experienced celiac disease themselves or don’t understand the risk or pain that can be involved. Who think a little gluten won’t hurt us. Who suspect we are just too fussy. If we can grab their attention, help them understand and give them a glimpse into our world, then maybe our path to living longer, healthier lives will get a little easier to travel.
Celiac Disease Campaign Goes for the Gut with Provocative Food Prep Videos
Videos Now Online at KnowCeliac.org for Celiac Awareness Month  Feature Recipes with Ingredients such as Scorpions, Thumbtacks and Razorblades to Demonstrate Pain of Living with the Disease.
PHILADELPHIA (May 3, 2019) Beyond Celiac and a coalition of other celiac disease organizations have come together for Celiac Awareness Month in May with a new campaign to highlight the seriousness of celiac disease, a genetic autoimmune disorder that damages the small intestine when gluten is ingested. The creative campaign at www.KnowCeliac.org is now online and features social media content and digital videos created by advertising agency Hill Holliday. The visually enticing food-prep videos feature seemingly delicious items like pasta salad, cupcakes and pizza.  However, there is one jarring twist – they include ingredients such as razorblades, scorpions, and thumbtacks, viscerally communicating just how painful it is for people with celiac disease to eat food that contains gluten. Tuscan Thumbtack Pasta Salad Poison Pizza Surprise Razor Blade Bliss “The fact is, most people confuse gluten-free diets with celiac disease, but they are not remotely the same,” said Rick McHugh, one of the creative directors at Hill Holliday who helped develop the campaign. “We wanted to educate people, in a visceral way, what it’s really like to live with this disease. And we hope this work fosters empathy and understanding for celiac sufferers.” Celiac disease is a serious, genetic autoimmune disorder with no cure or pharmaceutical treatment. Those who suffer from it experience intense physical symptoms such as abdominal bloating, pain and vomiting when they ingest gluten. Celiac disease can also lead to a number of other disorders including infertility, reduced bone density, neurological disorders, some cancers, and other autoimmune diseases. “While 3.2 million Americans suffer from celiac disease, there tends to be a lot of confusion about the difference between a gluten-free diet as a lifestyle choice and the necessity of avoiding gluten because your body can’t tolerate it,” said Alice Bast, CEO of Beyond Celiac. “We at Beyond Celiac were happy to have a leadership role in the campaign’s development and hope it helps to educate as well as inspire compassion and empathy for those who experience the physical and social pain of celiac disease.” The KnowCeliac.org campaign was convened by Beyond Celiac and created in partnership with other organizations that serve the celiac disease community, including the Canadian Celiac Association, the Celiac Disease Foundation, the Gluten Intolerance Group, and the National Celiac Association. “Our mission at Beyond Celiac is to advance research to find treatment options and, eventually, a cure for celiac disease. Generating more awareness about the disease helps to further this purpose,” Bast concluded. About Beyond Celiac For more than 15 years, Beyond Celiac has been the leading patient advocate and research-driven celiac disease organization working to drive diagnosis, advance research and accelerate the discovery of new treatments and a cure. By engaging with the top scientists in the field, awarding research grants, and supporting the community, Beyond Celiac envisions a world in which people with celiac disease can live healthy lives and eat without fear – a world Beyond Celiac.  www.BeyondCeliac.org.   About Hill Holliday Fighting the daily share battle in the noisiest categories. It’s what we do. Hill Holliday is proud to be one of the top creative marketing agencies in the country, with more than 500 employees across our network. Since 1968, we’ve built our business on winning that daily share battle for our clients in the most competitive categories. Blending superior creative, media, and technology, we deliver game-changing ideas for such industry leaders as Bank of America, Tempur Sealy International, Party City, Capella University, Optum, Boar’s Head, Simple Mobile, and Frontier Communications. For more about our people, our work, and our culture, please visit www.hhcc.com.
The Gluten in Medicine Disclosure Act of 2019
On April 3, 2019, Representative Tim Ryan [D-OH] introduced H.R. 2074, the Gluten in Medicine Disclosure Act of 2019 to the congressional floor. If passed, the bill would amend the Federal Food, Drug, and Cosmetic Act to require gluten be labeled in all medications.

Cosponsor H.R. 2074: The Gluten in Medicine Disclosure Act of 2019:

Providing Transparency for Consumers

Why Should I Care about Gluten in Medications?
  • According to the Mayo Clinic, the rate of celiac disease (CD) has almost quadrupled over the past 50 years-3 million Americans currently have CD.
  • Research estimates that 18 million Americans have non-celiac gluten sensitivity (NCGS).
What is Celiac Disease?
  • CD is a serious, genetic autoimmune disorder.
  • Ingesting gluten causes damage to the villi of the small intestine.
  • Only treatment is the total elimination of gluten-containing products, including wheat, barley, and rye sources.
  • For some, failure to avoid these can lead to life-threatening complications.
  • Currently, this is nearly impossible to determine the presence of gluten in prescription medicine.
Current Law:
  • Packaged foods require labeling of wheat and 7 other allergens
    • This doesn’t include rye and barley nor does it cover medications.
  • Not knowing if gluten in present in medications leads to fear and anxiety as well as potential avoidance of treatment.
  • Accidental ingestion of gluten sets off an autoimmune response and could lead to malabsorption of the medication itself.
What Will This Act Do?
  • Will make it easier to identify gluten in prescription drugs.
  • It would require drug manufacturers to label medications intended for human use with the list of ingredients, their source, and whether gluten is present.
  • A gluten-containing drug that does not meet these requirements would be considered misbranded under Section 502 of the Federal Food, Drug, and Cosmetic Act.
  • This labeling will allow concerned consumers to know, for example, if the starch in their prescription drugs comes from wheat or corn; that small distinction is an important one.

How you can help get this bill passed:

Beyond Celiac encourages you to support the Gluten in Medicine Disclosure Act of 2019 by contacting your representatives and encouraging them to cosponsor this bill. 
  1. Call, write, email your Members of Congress urging them to cosponsor the bill. Include a personal story.
  2. Set up district meetings as Members of Congress are back home during recess.
  3. Attend local events and talk to their Member(s) of Congress and their staff at the events urging them to cosponsor.
A list of those currently cosponsoring this bill can be found here.
To download a letter for your congressperson written by the staff at Beyond Celiac, click here: Gluten in Medicine—letter to Representatives
Beyond Celiac Provides Testimony to U.S. House of Representatives
The following is testimony provided by Beyond Celiac, jointly written by CEO Alice Bast and CSO Marie Robert, MD, shared with the U.S. House of Representatives detailing the crucial need for NIH funding for celiac disease research.
April 5, 2019 The Honorable Rosa DeLauro, Chairwoman The Honorable Tom Cole, Ranking Member Committee on Appropriations, Subcommittee on Labor, Health and Human Services, Education and Related Agencies U.S. House of Representatives H-307 The Capitol Washington, DC 20515 FY 2020 Written Testimony for the Record Submitted by: Alice Bast, CEO                                                      Marie E. Robert, MD Beyond Celiac                                                         Beyond Celiac A non-profit patient advocacy organization whose mission is to unite with patients and partners to drive diagnosis, advance research and accelerate the discovery of new treatments and a cure for celiac disease. Celiac disease impacts an estimated 3.2 million Americans as well as their families and social support networks.  It is a serious autoimmune disorder, a fact which is often misunderstood.  Left undiagnosed or unmanaged, celiac disease can lead over time to lymphoma or other cancers, an impaired immune system, additional autoimmune problems and a range of life-threatening medical conditions.  Adequate NIH funding is imperative as a means to address this important public health issue. Because celiac disease – which is triggered by the ingestion of gluten in affected patients – is hereditary, many members and generations of the same family may show signs of gluten intolerance.  For celiac disease patients, eating gluten creates an immune reaction in their bodies that damages the small intestine and interferes with the absorption of nutrients from food, leading to unintentional malnutrition. Today there is no medical treatment, and no cure. Currently the only way to manage the high daily burdens of the disease and to minimize health risks is to initiate a life-long regimen of a strict gluten-free diet. For the tens of thousands of children affected – as well as for minority and lower-income families – this restriction can be especially difficult.  For all celiac disease patients, finding food that is safe when traveling, eating out, eating at school or work or in other common circumstances is a significant challenge. For those with nonresponsive or refractory celiac disease, even perfection in diet maintenance will not restrain the disease. The diet is not enough. Millions of Americans are facing serious, long-term health risks because of their celiac disease, and research funding levels and focus are woefully inadequate to address this significant healthcare issue.  Patients need reliable treatments and a cure for celiac disease, progress that is only possible through a national commitment to the effort. That commitment starts with appropriate NIH funding levels.  In a fall 2017 article in the renowned medical journal Gastroenterology, authors Emma Clerx, Sonia Kupfer and Daniel Leffler found that “NIH funding of GI diseases is not proportional to disease prevalence or mortality.”  They noted in particular that celiac disease “is underfunded in comparison with other diseases, especially when the prevalence, burden and available treatment options are considered.” Why is underfunding for celiac disease research an ongoing problem? First, diagnosis rates (and overall awareness of the disease) are disturbingly low. An estimated 80% of people with celiac disease remain undiagnosed, partly because the symptoms of celiac disease cover such a broad spectrum. While an autoimmune reaction to gluten is the same for everyone with celiac disease, the symptoms can vary widely. Some patients show limited or no GI symptoms, while others have severe GI reactions.  Some patients demonstrate mental issues, fatigue, skin rashes, reproductive health problems or other complications. Because celiac disease presents in so many different ways, some of which mimic other conditions, misdiagnosis remains prevalent. In fact, it takes the average celiac patient 6 – 10 years to secure an accurate diagnosis. Second, many in the medical and funding communities underestimate the severity of the disease for patients over time.  Celiac disease is a serious autoimmune condition. While we don’t fully understand the nature of the connections with other autoimmune diseases or related medical issues, those connections are there.  Patients with celiac disease may also be prone to arthritis, various cancers, liver disease, thyroid disease, Type 1 diabetes and other medical problems. Third, those who allocate resources for research and disease management may mistakenly assume that a gluten-free diet is sufficient to counteract those adverse health outcomes. As explained above, the diet is virtually impossible to maintain, and even with perfect dietary compliance, medical complications of a serious nature still emerge over the long term for many celiac disease patients. As a result of those three factors, fewer researchers have made career commitments to finding treatments and a cure for celiac disease.  Fewer pharmaceutical companies are working in the space as well, at least partially because health insurers and other potential payers for treatments and medications (including Medicare and Medicaid) have low awareness of the serious nature of celiac disease and its long-term costs to the American healthcare system. Increased NIH funding and focus can begin to turn the tide for more than 3 million Americans who are looking for answers to the serious issues living with celiac disease presents.  With your funding support, we can begin to make progress.  And, along with making advances toward a treatment and cure for celiac disease, those suffering with other autoimmune conditions may benefit from that research as well. Beyond Celiac has been working for more than 15 years to support and advocate for the needs of the celiac disease community.  Our early work was primarily in the realm of raising awareness, improving food labeling, and increasing gluten-free food availability and safety.  As a critical first step, this work provided members of the celiac disease community with the best tools available at the time to better manage their health.  Beyond Celiac also has worked to raise awareness of the disease, increase diagnosis rates and build a community of mutual support by providing the latest information on living with celiac disease and updates on scientific advancements toward treatments and a cure.  All of that work – as important as it has been – is not enough.  We are now working as a catalyst to drive research toward effective treatments and a cure. We appreciate your taking the time to review this letter and to consider the need for additional NIH funding for the important work needed to support the health of the three million Americans living with celiac disease.  We stand ready to assist you with connections to our Scientific Advisory Council of experts or patients and patient advocates, as well as to provide whatever additional facts or resources you may need as you consider ways to support this important work. With our sincere thanks, Alice Bast, CEO                                                      Marie E. Robert, MD Beyond Celiac                                                         Beyond Celiac
To learn more about the need for celiac disease research funding, see Alice Bast's Huffington Post article, "Celiac Disease: The Underfunded, Invisible, Deadly Disease."
5 Reasons to Pay Attention to our 2019 Research Symposium
From updates on drug development to better understanding gluten sensitivity, here are five great reasons to tune in to the 3rd Annual Celiac Disease Research Symposium
When Beyond Celiac hosts its third annual Research Symposium on May 30, 2019, in Philadelphia, three leading experts led by Beyond Celiac CSO and moderator Marie Robert, MD will share the latest news on celiac disease, a serious genetic autoimmune disease that damages the small intestine when gluten is ingested. The Symposium is presented by Beyond Celiac as part of its mission to advance research to find treatment options and, eventually, a cure for celiac disease, which affects one in 133 Americans. There are many reasons to attend or tune in to the Symposium’s live webcast, but here are the top five:
  1. Get updates on the latest in research for treatments beyond the gluten-free diet. Joseph Murray, MD, of the Mayo Clinic will be discussing the celiac disease drug development pipeline, the goals of the various categories of drugs, and what patients need to know about participating in clinical trials.
  2. Stay informed. May is Celiac Awareness Month and an opportunity to learn more about this disease. Beyond Celiac reports that 83% of Americans with celiac disease are undiagnosed or misdiagnosed with other conditions. Celiac disease can also lead to a number of other disorders including infertility, reduced bone density, neurological disorders, some cancers, and other autoimmune diseases.
  3. Gain a better understanding of non-celiac gluten sensitivity, how it differs from celiac disease, and the steps to a proper diagnosis from Sonia Kupfer, MD, of the University of Chicago.
  4. What celiac disease patients want their treatments to look like should matter. That’s the focus of Pfizer’s Linda Deal, MS, who will discuss the importance of patient engagement in the drug development process, including how clinical trials should be designed with outcomes important to patients in mind.
  5. Understand how better diagnosis, advanced research and accelerated discovery of new treatments and a cure will help those affected by celiac disease as well as other autoimmune disorders. It’s estimated that 50 million Americans are living with autoimmune disease. Ongoing research has the potential to unlock the mystery of celiac disease and autoimmune diseases in general.
“We’re going to help unravel the mystery of non-celiac gluten sensitivity, including how to get a more definitive diagnosis rather than a diagnosis by ruling everything else out,” said Marie Robert, Beyond Celiac Chief Scientific Officer. “And we’re going to share how patients can really influence what new treatments on the horizon should look like. These are just some of the exciting things you can get the latest on through the symposium.” Watch the full 2019 Symposium here:
Beyond Celiac expands scope of expertise

Beyond Celiac expands scope of expertise

New scientific advisory council includes celiac disease, immunology and drug development experts


As one of the first steps in meeting the goal of finding new treatments and a cure for celiac disease, Beyond Celiac has created a new Scientific Advisory Council (SAC).

Council members have a broad span of expertise that includes celiac disease, immunology and drug development. They are internationally recognized physicians and scientists in both celiac disease and related non-celiac disease fields of study.

Immunology – the study of the human body’s built-in defense system, called the immune system, which normally helps fight infection by rejecting foreign viruses and bacteria. In celiac disease, the immune system does not work properly and responds to gluten as an invader, triggering an attack on the lining of the intestine, with consequent symptoms in many parts of the body.

“Beyond Celiac is poised to be a national leader in funding and stimulating scientific research that will lead to therapies and a cure for celiac disease," said Marie Robert, M.D., Beyond Celiac chief scientific officer and SAC chair. “Employing a range of strategies, from bench to bedside, Beyond Celiac will attract, enable and increase the pool of outstanding basic and clinical scientists directing their efforts to control celiac disease.”

The SAC will develop the strategic research agenda and assist Robert in developing the Beyond Celiac research grant program, with input into grant fund allocation, creating requests for and judging grant applications and evaluating research progress.

In creating the agenda, Robert said, emphasis will be placed on leveraging current knowledge, bridging critical gaps in the development process and exploiting synergies in related fields of other genetic and immune mediated diseases. Additionally, the SAC will work to stimulate a new generation of talented young investigators who will lead celiac disease research in the future.

Robert will present SAC recommendations to the Beyond Celiac chief executive officer and board of directors for discussion and approval.

In addition to Robert, members of the council are:

Bob Beall, Ph.D., Beyond Celiac board member and former president and CEO of the Cystic Fibrosis Foundation

Under Beall’s 21 years of leadership, the Cystic Fibrosis Foundation applied innovative approaches to bring new therapies to patients. The life expectancy of those with cystic fibrosis rose dramatically and nearly 30 drugs were in development to treat all aspects of the disease, including its underlying cause.

Gail Hecht, M.D., professor of medicine and microbiology/immunology and chief of gastroenterology and nutrition at Loyola University, Chicago

Hecht focuses her research on host–pathogen interactions, supported through funding from the U.S, National Institutes of Health (NIH) and the Department of Veterans Affairs. She also has an interest in the gut microbiome and its impact on intestinal function and health, serving as editor-in-chief of the journalGut Microbes. Hecht is a former president of the American Gastroenterological Association.

Edwin Liu, M.D., director of the Colorado Center for Celiac Disease at Children’s Hospital Colorado and professor of pediatrics, gastroenterology, hepatology and nutrition, University of Colorado School of medicine

Liu is a practicing pediatric gastroenterologist at Children’s Hospital Colorado and a lead researcher of celiac disease in children. He recently published a study that showed an increase in prevalence in celiac disease in children and helped further understanding of celiac disease screening. Liu also studies the link between celiac disease and other autoimmune diseases, such as Type 1 diabetes.

Daniel Leffler, M.D., director of research, Celiac Center at Beth Israel Deaconess, associate professor of medicine, Harvard Medical School, and medical director, Takeda Pharmaceuticals

Leffler is a practicing gastroenterologist and celiac disease expert. He has published numerous articles about celiac disease and participates in clinical and translational research. He has been the recipient of a career development grant from the NIH, as well as multiple foundation and industry sponsored grants. He lectures nationally and internationally and co-authored the bookReal Life with Celiac Disease. Troubleshooting and Thriving Gluten Free.

Stephen Miller, Ph.D., director of the interdepartmental immunobiology center at Northwestern University Feinberg School of Medicine and research professor of microbiology-immunology

Miller is internationally recognized for his research on pathogenesis and regulation of autoimmune diseases. His work has enhanced understanding of the immune inflammatory processes underlying chronic autoimmune disease such as multiple sclerosis, type 1 diabetes, and celiac disease and could lead to potential treatments for these and other autoimmune diseases.

Joseph Murray, M. D., professor of medicine at the Mayo Clinic and a gastroenterologist in the division of gastroenterology and hepatology, department of internal medicine

Murray is a practicing gastroenterologist and leading authority in celiac disease, having published more than 100 research articles. He focuses on clinical epidemiology of celiac disease, the role of genetics in predicting disease, the development of animal models for the disease and dermatitis herpetiformis. Murray also studies the complications of celiac disease, including small bowel cancer. His research has been funded by the NIH.

Kari Nadeau, M.D., professor of pediatric food allergy, immunology and asthma and director of the Sean N. Parker Center for Allergy and Asthma Research, Stanford University

Nadeau is an expert in adult and pediatric allergy and asthma. Her research focuses on understanding the increased prevalence of allergies and asthma, improving diagnostics and the immunological mechanisms underlying these diseases. She was the first to successfully desensitize individuals to more than one allergy at a time using multi-allergen oral immunotherapy. She does clinical research to provide safe and effective therapeutic options for those with allergies and asthma.