Instead of Gluten-Free Meal, Passenger Given Popcorn for 10-Hour Flight

A German-based airline is receiving backlash for reportedly serving a 39-year-old man with celiac nothing but popcorn and potato chips on a 10-hour flight from Mexico to England.

According to reports, James Howe had ordered the airline’s gluten-free meal option when he pre-booked first-class seats for a flight home from his honeymoon in Mexico back in October. Instead of the full meal he was expecting, Howe said he received nothing but snacks.

He posted a photograph of the “meal” along with a message for the airline on Facebook saying:

“Popcorn and crisps to get me through 10+ hours Fabulous way to end our lovely honeymoon. PEOPLE BEWARE if you book a meal “they are subject to availability and nothing is guaranteed.” This is news to me!”

The Mirror reports that an airline spokesperson said Howe has since received an apology.

“We’re very sorry to hear of Mr. Howe’s experience on his journey home from Cancun,” the spokesperson told the Mirror. “We have contacted the customer directly to apologize and offer a gesture of goodwill.”

 

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.”

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.

Nonresponsive Celiac Disease

In patients with nonresponsive celiac disease, symptoms persist even after following a gluten-free diet for six to 12 months or return after a long period of good health. A study in the Journal of Pediatric Gastroenterology and Nutrition found that nearly one in five children with celiac disease had persistent damage to the gut despite following a gluten-free diet for at least a year. Blood tests for tTG conventionally used in follow-up failed to predict damage.

The findings

The study involved 103 children who had follow-up biopsies between one and 12 years after an initial biopsy to diagnose celiac. Nineteen percent of the patients still had tissue damage.

Blood tests detected elevated tTG in 43 percent of those with persistent damage and 32 percent of those with healing. Only 55 percent of patients with persistent damage reported feeling any symptoms. A majority of healed patients also complained of symptoms possibly related to celiac.

Experts widely endorse tTG tests to monitor gluten-free adherence and recovery in patients with celiac. This study raises concern that the test, while accurate for initial diagnosis, is a poor indicator of healing. The authors argue an additional biopsy is the only way to confirm recovery.

This data set was small and relied on past medical histories, which is a statistically weak approach. While the findings raise an important concern, they will need confirmation by larger studies to recommend a change in health care practice.

Nonresponsive celiac disease

The study also corroborates rising concern about a significant proportion of celiac patients who respond poorly to the gluten-free diet. Persistent damage to the gut increases risk for complications, such as lymphoma. This adds urgency to the search for alternative treatments for patients with nonresponsive celiac disease.

Leonard MM, Weir DC, DeGroote M, Mitchell PD, Singh P, Silvester JA, Leichtner AM and Fasano A, “Value of IgA tTG in predicting mucosal recovery in children with celiac disease on a gluten free diet,” Journal of Pediatric Gastorenterology and Nutrition, Nov 3 2016, doi: 10.1097/MPG.0000000000001460 [Epub ahead of print].

Thyroid Disease in Celiac Patients

People with celiac disease have a higher risk for thyroid disease. A new study from China Medical University, Shenyang, strengthened the evidence using a meta-analysis of all relevant research conducted prior to May 2016.

The research team surveyed medical literature for studies that addressed both celiac and thyroid disease. They set standards to exclude data having weak statistical value. Thirteen studies were included, involving 15,629 people with celiac disease and 79,342 people without celiac disease for comparison.

Those with celiac disease were three times more likely to also have thyroid disease. The reason for this association is not yet clearly understood. Shared genetic traits might contribute to both conditions.

The article recommends that people with celiac disease should be screened for thyroid disease. However, the authors urge caution in interpreting their results, as all studies so far have been subject to statistical bias.

The scientific literature lacks robust data on how a gluten-free diet affects thyroid disease in people with celiac disease. However, this analysis suggested thyroid disease was equally common in untreated patients and those following a gluten-free diet.

Sun X, Lu L, Yang R, Li Y, Shan L and Wang Y, “Increased incidence of thyroid disease in patients with celiac disease: a systematic review and meta-analysis,” PLoS ONE, Dec 28 2016, 11(12):e0168708, doi:10.1371/journal.pone.0168708.

 

symptoms of thyroid problems

Although several thyroid symptoms could be misinterpreted for another condition or triggered solely by celiac disease, it’s best to know potential signs of trouble:

  • Weakness
  • Fatigue or difficulty sleeping
  • Weight gain
  • Weight loss
  • Sensitivity to cold and/or heat
  • Hair loss
  • Dry skin
  • Muscle cramps
  • Irritability
  • Depression
  • Constipation or diarrhea
  • Jaundice
  • Slowed speech
  • Abnormal menstrual cycle
  • Infertility
  • Increase in tongue size
  • Mental fog
  • Difficulty focusing
  • Bloating
  • High cholesterol
  • Racing heartbeat
  • High blood pressure
  • Bulging eyes

If you notice several of these symptoms, it’s worth visiting your physician for a blood test. If you are convinced that your symptoms are not being caused by celiac disease, you must be your own advocate when it comes to asking for blood tests and having your thyroid tested. Some helpful blood tests include TSH, free T3, reverse T3, free T4, thyroid antibodies, vitamin levels, cortisol level and iron level.

—Heather Burdo

Banana Babies: A History Lesson for Celiac Awareness Month

I first learned about banana babies in the early 2000s. The term refers to very sick children who were diagnosed with celiac disease, placed on diets heavy in bananas and told they would outgrow celiac. Years later, many found themselves not feeling well because —as the medical community would later come to understand—celiac cannot be outgrown.

I know more than one banana baby personally, including Ceil Chookazian, who owns Foods by George with her husband George. Chookazian was actually one of the very first people I had the privilege of meeting within the community after my celiac diagnosis in 2000. Perhaps that is why I have always felt so strongly about banana babies and their unique, complicated history with celiac and the gluten-free diet.

How it began

I recently realized that I don’t even remember the last time I had a conversation about banana babies. With May being Celiac Awareness Month, I wanted to do something to get the term out there again.

“This banana diet really was developed in the [1930s] and ‘40s, when these kids that were brought to the hospital were dying,” explains Alessio Fasano, MD, Director of the Center for Celiac Research and Treatment at Massachusetts General Hospital. “So the idea was because [the children] are having diarrhea—because that was the main manifestation of celiac disease at that time—and because they knew that with diarrhea you lose some minerals, in particular potassium, empirically they decide for bananas. Why? Because they’re filled with astringent, so in other words they make you constipated, so they try to counterbalance the diarrhea and…because they are rich in potassium. So that’s the reason why they decided to focus on bananas and they give you enough calories to stay afloat. And of course, eating bananas and nothing else, you are gluten free. And you know—surprise, surprise—these kids were surviving on that diet.”

Fasano, a renowned expert on all things celiac, covers its history in his book Gluten Freedom: The Nation’s Leading Expert Offers the Essential Guide to a Healthy, Gluten-Free Lifestyle, including how the banana diet was developed and a first-person banana baby account.

Gluten’s introduction

As Fasano notes in the book, the major breakthrough with celiac disease was made by Dutch pediatrician Willem-Karel Dicke following World War II. He writes, “In the decades before Dr. Dicke’s discoveries, many children thought to have celiac disease were fed bananas almost exclusively for three to six months. A pediatrician from New York City named Sidney Haas developed the diet in the 1920s. It remained the guiding therapy until 1950, when Dr. Dicke published his thesis with a meticulous dietary study that documented gluten as the dietary trigger of celiac disease.”

At the time, the understanding was that celiac disease could be outgrown. “What they did at that time was, after four to five months they were on this diet, they gradually introduced everything else,” says Fasano. For some of the children, the outcome was horrible. “A good chunk of kids relapsed and they died,” he explains. In other cases, the results were different. “A group eventually did not relapse or relapsed with much milder symptoms, and they survived.”

The banana diet continued into the 1950s and ‘60s. “The reason why it was still used in the ‘50s is because the gluten-free diet was not popular yet,” explains Fasano. There was a gap in disseminating information about celiac and the gluten-free diet. “Dicke’s work was not really…streamlined, and in the meantime the success of the banana diet really took over and was extremely popular[ly] implemented. By the time that Dicke’s work became more clear and then subsequent work found out there was gluten in wheat that was the culprit, then at that point the gluten-free diet started to gain popularity.”

Wide range of celiac symptoms

Chookazian and her younger sister were both placed on the banana diet in 1960, toward the end of the diet’s popularity. Chookazian was three years old and her sister around 18 months old when they became symptomatic. “We exhibited differently, yet we both had celiac and we both were put on the diet and we both ate a lot of bananas, bananas and [more] bananas,” says Chookazian. “It was actually called non-tropical sprue when we were little.”

She describes the differences between her symptoms and her sister’s. “I started to get sick [with] the measles, mumps, whatever; I never seemed to come out of it,” she says. Her sister, meanwhile, experienced something very different. Chookazian explains that “during that time period there was a terrible starvation period in Biafra and there was a lot of information in the news about Biafran babies that were very thin in their arms and legs with big stomachs from being malnourished—that’s how my younger sister looked. Whereas I, on the other hand, looked really big and puffy, and got bigger rather than smaller.”

Their doctor was stumped by the two sisters and their symptoms. He sought out the advice of a medical professor from Europe. “And he contacted this doctor and said, ‘I have these two little girls. I don’t know what’s the matter with them. Here are their symptoms.’ And [the professor] said it sounded to him like a thing called non-tropical sprue. And he told our doctor what to do.”

Implementing the banana diet

Chookazian remembers how she and her sister were admitted to the hospital. Their doctor was very honest with her parents about the severity of the situation. “So this doctor said to my mother, to my parents, ‘They’re probably both going to die. We don’t exactly know, but we think it’s this thing called non-tropical sprue and here’s the plan. You’re going to start them out on things like rice, potatoes, bananas,’ and that’s where bananas came in.”

In addition to the bananas, she remembers also eating a great deal of warm rice cereal. “My mom would heat up some milk and put in some rice cereal and add the bananas and banana flakes into it, and for the first three months that’s pretty much what we had.” Chookazian remembers eating the banana flakes from Kanana Banana Flakes fondly. “Probably four times a week, we would have bananas or banana flakes, and it would be in the cereal or sometimes at lunch we would mix the banana flakes in cold water. [My mother] just wanted to get [the bananas] into us.”

She also remembers eating Hol Grain Brown Rice Crackers—“those same crackers they have now”—which were a staple in her diet once she started cutting back on bananas. “They were very durable. My mother would take ham and roll it up and put it in between two of those.” But by the time Chookazian was a teenager, she was eating gluten and a much wider diet.

When symptoms returned

As she got older, Chookazian began eating more and more gluten. As an adult, she would grab slices of pizza on the way home from work. By the late 1980s, unbeknownst to her, her celiac had relapsed. She had been losing weight for a prolonged period of time. She continued to get worse, particularly around the time she began to date her now husband George. “George and I started dating and then I started eating a lot of bread. That just exacerbated everything,” she says. “In a very short time, a two- to three-week period, I went from 123 pounds or so down to about 92 pounds.”

All the while she had been seeing her internist, who diagnosed her with irritable bowel syndrome. He did not make the connection with celiac. In fact, “I had told him I had celiac disease when I was a kid,” to which the doctor replied, “No, no, no, you outgrew that. That’s not it.”

Eventually Chookazian became so sick that she was hospitalized in 1990. “I was in the hospital just wasting away.” Finally, “a doctor named Zvi Fischer over in Ridgewood, New Jersey, at Valley Hospital, got on the case.” It did not take long for Fisher to determine the cause of Chookazian’s symptoms. “He took a look at my stuff, my history, and he said, ‘Oh, you have celiac disease.’ I said, ‘I outgrew that’ and his eyes sort of crossed and he said, ‘No you didn’t. You never outgrow celiac disease.’  He said, ‘you’ve got a full-blown case of celiac disease.’”

Banana babies today

In Fasano’s own practice, he has encountered banana babies “many times, some with very sad stories. The vast majority of these people remembered that they were diagnosed with celiac disease or were told by their family, the parents, they were diagnosed as celiac during the early days, and that was completely forgotten and then they start to again have symptoms and now that celiac disease and gluten are so popular, they check it out—‘what could be wrong with me?’—and find out that the celiac disease can be one [cause], and then they put two and two together.”

When asked whether there are individuals who were placed on the banana diet but are unaware that they never outgrew celiac disease, Fasano notes there are, but the exact numbers are indeterminate.

Chookazian, for her part, welcomed confirmation that she never outgrew celiac and was relieved to learn the cause behind her symptoms. “That was probably one of the best days of my life,” she says. “It was a relief for me because I was so sick. I felt very fortunate. I thought to myself, ‘I know how to do this.’ Certainly my greatest blessing was George. Not a thing that I wanted that he didn’t make for me.”

 

Susan Cohen is a New York freelance writer. She contributes regularly to Gluten-Free Living.

New Infant Study on Celiac Disease Now Enrolling!

CDGEMM Logo

Help Identify, Predict and Prevent Celiac Disease

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 disease.

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 disease.

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 disease before it happens. Once able to predict celiac disease development, their goal is to prevent it by producing treatments based off of this work.

Could your infant take part?

Researchers have enrolled 127 babies and are looking for a total of 500 infants to participate. Infants up to 6 months of age who have a first-degree relative (parent or sibling) with celiac disease 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 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 disease. Thus, by taking part in the study, each child will be monitored closely for celiac disease, which allows for early detection and treatment if necessary. In addition, genetic testing will assess whether each child has the genes compatible with celiac disease.
  • 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 disease. Participants are also welcomed into a community of like-minded families who want to help advance our knowledge of celiac disease.

Parents who are interested in enrolling their infant can email [email protected] for more information or visit the study’s website at www.cdgemm.org to see how their little ‘GEMM’ can help make celiac disease history!

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