VIDEO: World-renowned celiac expert urges caution after cross-contamination study

Researcher, scientist and leading authority on celiac disease Dr. Alessio Fasano has responded to a recent study claiming to find no significant gluten transfer when kitchen appliances and utensils were used for both gluten-free and gluten-containing foods.

In a brief video (see below) posted on YouTube, Fasano, who directs the Center for Celiac Research at Massachusetts General Hospital, says the study poses some thought-provoking questions. However, he warns that other factors should be considered.

“There is a cumulative effect of cross-contamination that may eventually break a tolerance…with all the consequences that come with that,” Fasano says in the video.

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The study was conducted by Children’s National Hospital and appeared in the journal Gastroenterology. The authors tested three scenarios where it was thought that gluten transfer could be high enough to pose a gluten exposure risk for someone with celiac disease—in general, greater than 20 parts per million (ppm) or .002%. It found less gluten transfer than expected in several everyday kitchen scenarios.

Fasano, who wrote the landmark 2003 study that established celiac disease affects one in 133 Americans, noted the recent study was not a large one. He stressed that the results should not justify a relaxation in current food preparation guidelines for people with celiac disease. 

“I think it’s very provocative,” Fasano says of the new study in the video. “I think it’s opened up questions that we never ask ourselves, but I personally believe that we have to have a word of caution.”

New Treatment May Reverse Celiac Disease: Clinical Trial

Bread could someday be back on the menu for people with celiac disease following a potentially major treatment advancement.

On Oct. 22, a research team from Chicago’s Northwestern University shared findings from a phase 2 clinical trial in a late-breaking presentation during a medical conference in Spain.

Phase 2 trials are used to determine the effectiveness of a drug or treatment, as opposed to Phase 1 trials where a treatment’s safety is considered. In this case, researchers tested a new technology developed in the lab of Dr. Stephen Miller, a professor of microbiology and immunology at Northwestern University’s Feinberg School of Medicine. Miller has spent decades refining a biodegradable nanoparticle with potential to treat a host of other diseases in addition to celiac, such as multiple sclerosis, type 1 diabetes, peanut allergy and more.

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About 1% of the population has celiac disease, a serious autoimmune disease where eating gluten leads to damage in the small intestine. When people with celiac disease eat gluten (a protein found in wheat), their body mounts an immune response that attacks the small intestine.

Nanoparticles are microscopic particles that have been studied intensively over the past few years. Recent advances have shown the potential for major applications in the field of bio-medicine.

The nanoparticle developed by Miller’s team contains gluten. When ingested it teaches a person’s immune system that the allergen is, in fact, safe. According to Northwestern University: “The nanoparticle acts like a Trojan horse, hiding the allergen in a friendly shell, to convince the immune system not to attack it.”

This is potentially exciting news for people with celiac.

It’s the first time the technology has been demonstrated to work in patients. Essentially, the study found that after treatment, patients in the study could ingest gluten with a substantial reduction in inflammation. The results also revealed a trend where patients’ small intestines were protected from gluten exposure.

Specifically, the treatment is called CNP-101/TAK-101. In the study, the nanoparticles were administered to celiac patients intravenously on the first and eighth days. After a week, they consumed gluten for 14 days, and their reactions to the gluten were then tested. The trial showed that those who received the treatment showed 90% less immune inflammation response to gluten compared to a group who received a placebo (inactive treatment). The study included 34 participants, six of whom did not complete the trial in light of gluten-related symptoms.

According to Northwestern: “Autoimmune diseases generally can only be treated with immune suppressants that provide some relief, but undermine the immune system and lead to toxic side-effects. CNP-101 does not suppress the immune system but reverses the course of disease.”

“Celiac disease is unlike many other autoimmune disorders because the offending antigen (environmental trigger) is well known – gluten in the diet,” said Dr. Ciaran Kelly, professor of medicine at Harvard Medical School and director of the Celiac Center at Beth Israel Deaconess Medical Center, in a press release. “This makes celiac disease a perfect condition to address using this exciting nanoparticle induced immune tolerance approach.”

Recently, a Japanese pharmaceutical company, Takeda, purchased the license to use the technology specifically to treat celiac disease. Miller and the company he co-founded, COUR Pharmaceutical Development Company, retains ownership of the technology.

Currently, there is no treatment for celiac disease, a gluten-free diet being the most effective way to avoid symptoms.

While the results show some promise for new treatment options, it’s important to note that it’s too soon to expect a cure until further studies are completed.

Celiac Disease Foundation Gives More Than $500,000 for New Research

Three researchers have received more than $500,000 from the Celiac Disease Foundation including doctors from Boston Children’s Hospital, Columbia University and the University of Chicago. 

Valerie Abadie, PhD of the University of Chicago Celiac Disease Center, is the most recent recipient for her promising celiac research. Abadie is one of three researchers who earned the foundation’s 2019 Young Investigator Research Grant Award and was given $180,000. 

The first two recipients are Jocelyn Silvester, MD, PhD of Boston Children’s Hospital and Harvard Medical School who was awarded $180,000 and Benjamin Lebwohl, MD, MS of the Celiac Disease Center at Columbia University who was awarded $145,650.

For her research, Dr. Abadie will be employing specially developed mouse models that mimic celiac disease to learn if blocking B cells can mitigate or prevent damage to the intestinal villi when someone with celiac disease ingests gluten.

Kristin Yarema, PhD, a member of the Celiac Disease Foundation’s board of directors and a vice president at Amgen, explained the research’s importance.

“We already have medicines that can ablate B cells that will soon be relatively inexpensive generics (anti-CD20 medications),” said Yarema.“If Dr. Abadie’s work demonstrates that B cells are a primary mediator, we could probably interest someone relatively quickly in doing clinical studies. Given that the medications are already approved by the FDA, timelines are vastly shorter and de-risked. I see this proposal as most directly/quickly leading to potential effective treatments for celiac disease.”

For more information on the Celiac Research Foundation click here. To donation to the foundation, click here.

New Celiac Disease Research Efforts Receive Nearly $450,000 in 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.

The grant winters include a professor at the University of Oxford, England and the director of research at the Celiac Disease Program at Children’s Hospital in Massachusetts.

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Paul Klenerman, PhD, a professor of gastroenterology 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.” 

For more on celiac research, click here. 

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. 

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 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.”

Beyond Celiac is a leading research-driven celiac disease organization working to drive diagnosis, advance research and accelerate the discovery of new treatments and a cure. For more on the group, see here.  

Study: Fasting Improves Chronic Inflammatory Disease, Reduces Inflammation

New research has shed light on the benefits, both for longevity and fighting disease, of intermittent fasting.

In a study published in Cell, Mount Sinai researchers found that fasting reduces inflammation and improves chronic inflammatory diseases such as celiac disease without affecting the immune system’s response to acute infections.

While acute inflammation is a normal immune process that helps fight off infections, chronic inflammation can have serious consequences for health, including heart disease, celiac disease, diabetes, cancer, multiple sclerosis, and inflammatory bowel diseases. 

“Caloric restriction is known to improve inflammatory and autoimmune diseases, but the mechanisms by which reduced caloric intake controls inflammation have been poorly understood,” said senior author Miriam Merad, MD, PhD, Director of the Precision Immunology Institute at the Icahn School of Medicine at Mount Sinai.

Working with human and mouse immune cells, Dr. Merad and colleagues showed that intermittent fasting reduced the release of pro-inflammatory cells called “monocytes” in blood circulation. Further investigations revealed that during periods of fasting, these cells go into “sleep mode” and are less inflammatory than monocytes found in those who were fed.

“Monocytes are highly inflammatory immune cells that can cause serious tissue damage, and the population has seen an increasing amount in their blood circulation as a result of eating habits that humans have acquired in recent centuries,” said Dr. Merad. 

“Considering the broad spectrum of diseases that are caused by chronic inflammation and the increasing number of patients affected by these diseases, there is an enormous potential in investigating the anti-inflammatory effects of fasting,” said first author Stefan Jordan, PhD, a postdoctoral fellow in the Department of Oncological Sciences at the Icahn School of Medicine at Mount Sinai in New York City.

Researchers plan to continue trying to decipher the molecular mechanisms by which fasting improves inflammatory diseases, which could lead to novel preventive therapeutic strategies for the treatment of many human diseases. 

Beyond Celiac Launches First-of-Its-Kind App for Patient Engagement

Beyond Celiac  has launched a first-of-its-kind mobile app to complement its online research database, Go Beyond Celiac.

Go Beyond Celiac is an online database created by people with celiac disease, for people with celiac disease. Thousands of people have enrolled since it launched in 2017. Users can participate in research by sharing their stories and experiences and become involved in celiac disease research studies.

The new app now makes Go Beyond Celiac more interactive and engaging, and the mobile convenience should encourage 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 information 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.

For more on top gluten-free mobile apps, click here. 

“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,” said Bast.

The Go Beyond Celiac app is available for both iOS and Android devices.

Beyond Celiac is a leading celiac disease organization working to drive diagnosis, advance research and accelerate the discovery of new treatments and a cure. For more information on Beyond Celiac, click here.

Lawmakers Urge Celiac Cure Research After Health Hearings

Congress wants federal health officials to look closer at funding celiac cure research after receiving 750 stories from those affected by the autoimmune disorder and hearing from Celiac Disease Foundation CEO Marilyn Geller.

Delivered in April, the congressional testimony urged lawmakers to develop a first-ever National Institutes of Health comprehensive plan to treat and cure celiac disease. On May 7, the Celiac Disease Foundation announced that lawmakers have since included language calling on the National Institutes of Health to fund new celiac cure research.

Click here to learn more about Geller and the Celiac Disease Foundation. 

Geller spoke before the House Committee on Appropriations Subcommittee on Labor, Health and Human Service, which is the subcommittee responsible for the National Institutes of Health (NIH), Centers for Disease Control and Prevention and Medicaid/Medicare budgets.

Following Geller’s testimony and the submissions of the more than 750 stories, the house subcommittee included a passage written by the Celiac Disease Foundation in an upcoming health bill.

In her testimony, which can be read in full here, Geller touched on the lifetime burden of the gluten-free diet for patients, time missed from work and school and stressed that celiac disease is a serious medical condition – not a fad.

The language calls on the National Institute of Allergy and Infectious Diseases to support new research finding a cure.

“This is a clear directive to NIH leadership, however, that this Subcommittee wants to the NIH to confront celiac disease with the urgency and research funding it deserves,” said Geller. “This is great news for patients, caregivers, and researchers. This is great news for all of us.”  

Geller, a member of Gluten-Free Living‘s advisory board, has been working with the Celiac Disease Foundation for years to advocate for celiac disease on Capitol Hill. The Celiac Disease Foundation is fully committed to bringing the voice of the celiac disease community to Washington, D.C.,” said Geller. “We know that effective advocacy is critical to our efforts to accelerate the search for treatments and a cure.”

The bill containing the language; however, is still working its way through Congress. Eventually, it will end up at the White House for approval.

Diabetes Risk from Low Gluten

Data from three large studies found that healthy American adults who eat less gluten have a higher risk for type 2 diabetes. It is already known that people who adopt a gluten-free diet sometimes miss out on dietary fiber, B vitamins, iron and calcium. This research also found they had a lower intake of folic acid and magnesium and a less-healthy diet overall. A normal, gluten-containing diet may be healthier in the long run for people without gluten sensitivity.

The data came from dietary questionnaires completed by health-care workers for their own eating habits every other year beginning as early as 1984 until 2013. It included about 202,000 healthy participants. Gluten consumption was estimated based on the foods they consumed. During follow-up, 15,947 individuals developed type 2 diabetes. The risk for diabetes was strongly and inversely proportionate to gluten consumption.

The reason for this pattern is unclear. Gluten itself probably does not protect people from diabetes. A diet low in gluten, besides lacking certain nutrients, may reduce beneficial bacteria in the intestine. It could also increase absorption of carbohydrates, straining the body’s ability to stabilize blood sugar.

Want to learn more about diabetes? Visit DiabetesSelfManagement.com.

Infant Study on Development of Celiac Enrolling

Help Identify, Predict and Prevent Celiac

The MassGeneral Hospital for Children Center for Celiac Research and the Celiac Program at Harvard Medical School have launched a research study to understand the many factors that contribute to the development of celiac.

The CDGEMM (Celiac Disease Genomic Environmental Microbiome and Metabolomic) Study is aimed at understanding the role that our genes, gut microbiome and environmental factors play in the development of celiac.

Researchers, led by Dr. Alessio Fasano, are hoping the study will help create a model to identify a pattern of gut bacteria (microbial signatures) and environmental factors that could help predict who will develop celiac before it happens. Once able to predict celiac development, their goal is to prevent it by producing treatments based off of this work.

Could your infant take part?

Researchers have enrolled 150 babies so far and are looking for a total of 750 infants from the U.S., Italy and Spain to participate. Infants up to 6 months of age who have a first-degree relative (parent or sibling) with celiac are eligible for the study. If you are currently pregnant and your soon-to-be infant will fit these criteria, you can even begin the enrollment process before birth. They study is recruiting from all over the U.S., as well as at centers in Italy and Spain, and follows children from the time of enrollment until they turn 5 years old.

Here is what study participants can expect:

  • Collection of blood and stool samples from your child throughout the study. Each time blood is drawn it will be tested for the antibodies used to diagnose celiac. Thus, by taking part in the study, each child will be monitored closely for celiac, which allows for early detection and treatment if necessary. In addition, genetic testing will assess whether each child has the genes compatible with celiac.
  • Parents will keep a diary of their infant’s antibiotic use and dietary history for the first year of life.
  • Parents will answer questions about their infant’s medical and social history approximately every six months.
  • Forms can be completed securely online.
  • Study visits can be conducted at the center where participants enroll or at the child’s pediatrician’s office.
  • Everything is free of charge.

Finally, participants have an active firsthand role in groundbreaking science and around-the-clock access to the CDGEMM study team, comprised of experts in the field of celiac. Participants are also welcomed into a community of like-minded families who want to help advance our knowledge of celiac.

Parents who are interested in enrolling their infant can visit the study’s website at www.cdgemm.org to see how their little ‘GEMM’ can help make celiac history. To enroll or inquire about enrollment, contact a participating center nearest you.

Want more information on celiac and kids? Check out our Kids section.

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Research Roundup: Experimental Drug Eases Celiac Symptoms

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An experimental drug has been proven to relieve symptoms for some people with celiac who recover poorly despite following the gluten-free diet. Latiglutenase is an enzyme supplement that helps digest gluten. Previous research showed it might protect patients from low levels of gluten eaten accidentally. While clinical studies have not proven it prevents damage to the small intestine, it did relieve the participants’ most common complaints of abdominal pain, bloating, fatigue and constipation.

Latiglutenase, formerly known as ALV003, has been in development since 2016 by drug company ImmunogenX, based in Newport Beach, California. Experts at the Mayo Clinic, Columbia University and Stanford University assisted this study. It included 398 people diagnosed with celiac who had avoided gluten for a year but still had painful symptoms. Blood tests showed 173 (43 percent) continued to produce antibodies associated with inflammation. Researchers randomly assigned them to take a placebo or different doses of latiglutenase for 12 weeks.

This trial originally tried and failed to find evidence the drug promoted intestinal healing. However, further analysis found a significant improvement in symptoms for those patients with elevated antibodies receiving latiglutenase versus a placebo. The effect increased with dosage and most greatly benefitted patients with the most severe pain.

What does it mean?

The authors recommend similar patients would benefit from having latiglutenase commercially available. It would not cure celiac or allow patients to eat foods containing gluten. However, it would make life easier for a significant proportion of patients who remain ill despite a gluten-free diet. It would be taken with meals, yielding a similar effect to that of lactase for people with lactose intolerance.

All researchers on this study declared professional or financial ties with ImmunogenX and other drug companies.

Syage JA, Murray JA, Green PHR, Khosla C, “Latiglutenase improves symptoms in seropositive celiac disease patients while on a gluten-free diet,” Digestive Diseases and Sciences 2017;62:2428-2432, doi:10.1007/s10620-017-4687-7.