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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.
Patients can now get antibody test results to help manage the gluten-free diet
By Amy Ratner, Medical and Science News Analyst
An at-home test for celiac disease can now also be used by patients to monitor how well they are doing on the gluten-free diet after diagnosis.
Microdrop Health, a Houston-based company today began offering its imaware™ celiac disease test to patients for monitoring, through use of anti-tissue transglutaminase (tTG) and deaminated gliadin peptide (DGP) blood test results. The imaware™ test was launched in December to provide patients with blood test results they can take to their doctor as part of the diagnostic process.
Patients who have symptoms and risk factors for celiac disease often report that their doctors still don’t want to test them, and studies have shown that patients often go years without a diagnosis. The imaware™ test was designed to give patients the evidence they need to convince their physicians that testing is warranted.
In the United States, celiac disease cannot be diagnosed through blood tests alone. A biopsy that shows damaged to the absorbing line of the intestine is also needed, and imaware™ advises patients to take results to their physicians.
Following diagnosis, blood tests that measure tTG antibodies to gluten are used by physicians to determine how well someone is adhering to the gluten-free diet. Although the tTG test was developed for diagnosis and not for monitoring, it’s often used for follow-up because no other blood test is currently available. Some studies suggest that the combination of tTG and DGP biomarkers increases the effectiveness of monitoring.
The imaware™ test measures these same antibodies and gives patients quantitative results, which they can share with their doctor and a registered dietitian, said Jani Tuomi, imaware™ co-founder and spokesman.
The company now offers a subscription service that would provide an initial monitoring kit to establish a baseline of tTG and DGP results shortly after diagnosis and the start of the gluten-free diet.
A second kit would follow after 75 days, when a newly diagnosed patient should see a 50 percent drop in blood test results if they are following a truly gluten-free diet, Tuomi said. Patients being monitored by a physician might not get any follow-up testing until six months after diagnosis, he noted.
By monitoring the diet with imaware™, a patient does not have to wait that long to see if the gluten-free diet is beginning to work, Tuomi said. “Lifestyle adjustments are hard and hardest at first,” he explained. “Getting feedback earlier helps patients validate their lifestyle and diet changes or get feedback from the doctor sooner.”
Patients have the option of gettng additional kits at two, four or six month intervals. When two or more tests are purchased, each costs $89. The tests are available online only.
Patients previously diagnosed with celiac disease who have been following the gluten-free diet can also use a monitoring test to see if inadvertent gluten exposure is triggering antibody response. If gluten is not getting into the diet, blood test results should be negative.
Both newly- and previously-diagnosed patients who use the test for monitoring would collect a small sample of blood in a microcontainer, then send the sample to Microdrop’s CLIA-certified laboratory. Results are then accessed through a password protected online portal, the same way diagnostic blood test results are shared.
The report tells patients whether their results are normal or elevated for the time frame in which they’ve been on the gluten-free diet when the test is done. “It can take 15 to 18 months to come down to below-cutoff levels,” Tuomi said. “We will help you know if you’re on track or not.” In cases where antibody levels remain above normal, the report encourages patients to meet with a registered dietitian.
But monitoring of celiac disease through blood tests is tricky even for physicians. Benjamin Lebwohl, M.D., director of clinical research at the Celiac Disease Center at Columbia University, who is not connected to Microdrop, said it takes about a year on the gluten-free diet before a patient will have negative antibody levels.
“In theory, a blood check could detect ongoing recent gluten exposure, but even in the blood tests we currently use for monitoring, the accuracy for gluten exposure is far from perfect,” he said. “Also, monitoring of celiac disease after diagnosis should not be done without a health care provider, so I am not sure of its utility in that context.”
American College of Gastroenterology guidelines for celiac disease management, developed in 2013, call for annual follow-up with a physician and dietitian, which should include antibody blood tests and tests that measure vitamins, minerals and more. A bone mineral density scan one year after diagnosis is also recommended for adults.
But follow-up care is often neglected in celiac disease management. More than one out of four celiac disease patients diagnosed at least five years ago have not had follow-up healthcare for the condition in the past five years, a study by Beyond Celiac and other researchers found.
Courtney Schuchman, R.D., of the University of Chicago Medicine, has joined Microdrop as medical advisor to help the company address the needs of patients after diagnosis and while they are monitoring their celiac disease. She is tasked with helping communicate the importance of the diet and following-up with a doctor after getting tests results. She joins Detleff Schuppan, M.D., director of the Institute of Translational Immunology and Celiac and Small Intestinal Diseases at the University of Mainz in Germany and Stephano Guandalini, M.D., founder of the University of Chicago Celiac Disease Center, who are also Microdrop medical advisors on celiac disease.
Other tests to monitor gluten exposure
In 2017, Glutenostics launched at-home stool and urine tests that are also designed to tell patients if they have consumed gluten. The Gluten Detective tests detect fragments of the immunogenic gluten protein, called GIP, harmful to those who have celiac disease. Like imaware™, Gluten Detective is not approved by the FDA and cannot make a medical claim related to the treatment of celiac disease or any other condition. The tests can only claim to detect gluten consumed, fragments of which are found in the stool or urine of everyone, but only trigger an autoimmune response in those who have celiac disease.
In addition to adding celiac disease monitoring, imaware™ is decreasing the price of its diagnostic test from $165 to $99. Tuomi said the price drop was motivated in part by Microdrop’s commitment to cutting the rate of undiagnosed celiac disease. Less than 20 percent of those who have celiac disease have been diagnosed, according to most estimates.
“We want to make a dent in the number of undiagnosed cases,” Tuomi said. “Let’s get 100,000 people screened. We want to make our test so cost effective there is no reason not to get screened. Price should not be in the way of diagnosis.” At the new price point, imaware™ would cost less than other patient-initiated tests, including Let’s Get Checked, with a U.S. price of $119.
“How you drive diagnosis is through volume,” Tuomi noted, adding that in order to get new treatments and a cure for celiac disease more have patients have to be diagnosed.
Beyond Celiac is partnering with imaware™ to support the goal of dramatically reducing the number of individuals dealing with undiagnosed celiac disease by helping them more quickly take the steps needed for diagnosis. The company will contribute a portion of sales to Beyond Celiac to support ongoing initiatives to drive diagnosis, advance research and accelerate the discovery of new treatment and a cure.
Microdrop is also a corporate sponsor of the Society for the Study of Celiac Disease (SSCD) and will work with the group to promote the use and awareness of scientifically validated approaches and methods for celiac disease diagnosis, according to the SSCD website. The SSCD is an organization of medical, scientific and allied health professionals in the field of celiac disease.
Microdrop also plans to introduce an imaware™ diagnostic test for a second disease, rheumatoid arthritis in February. The condition is similar to celiac disease because it is an autoimmune disease, with a low rate of diagnosis and a high risk for first degree family members. And, Tuomi said, it’s like celiac disease because early diagnosis can reduce the negative impact of the condition.
Nicole Marchetti is professional chef and a winner of Food Network's Choppedwho also happens to have celiac disease
In 2013,Nicole Marchetti became a Food Network'sChopped champion. She's a professional chef who these days is spending her time as a culinary instructor at YTI Career Institute in Lancaster. All of these is impressive in its own right, especially for someone who's only turned 30, but what makes Nicole even more remarkable is that she's launched this successful culinary career all while dealing with celiac disease for the last decade--a serious autoimmune disease that means even a crumb of gluten (found in wheat, barley and rye) can cause serious harm.
We recently chatted with Nicole to learn more about how her life, which revolves around food, is affected by celiac disease:
I got into cooking at a young age. I used to make the toast on Saturday and Sunday mornings at a café my Mom worked at. At home my Dad would make his famous steak and potatoes and I would always look forward to that night. To this day, I still can’t make that dinner as good as he can. As a teenager I worked in various restaurants as a busser, server, pantry cook and food runner. It was not until I found out I was a celiac disease that I really got into professional cooking. My diagnosis is what really inspired me to pursue becoming a chef. I also love to bring people together and food was always that one thing that can do that. I come from a large family so meal time is very important to me.
I was diagnosed in 2008 when I was 20 years old. About a year before I started culinary school at The Culinary Institute of America.
For a few years before I was diagnosed I could not have dairy. So I avoided it, but even when I avoided dairy I would still have some issues. I didn’t really eat processed foods/pre-packaged foods or a lot of breads, so I just figured since I wasn’t eating those foods that when I did it was my body telling me that was a no-no. I started to lose weight and just felt terrible every day. I remember talking to my dad and he told me to talk to my uncle who has celiac disease. After speaking with my uncle I made a doctor’s appointment and here we are! Even before going to the doctor’s office I did countless hours of research on the web trying to find out as much information as I could about the disease as well as talking to family. Websites like Beyond Celiac really helped me.
My right hip I had checked out on multiple occasions and being a chef and on my feet all day bothers it. My joint there just gets very sore if I stand or sit/lay down for too long or if I am glutened. When I am glutened it’s worse.
My diagnosis inspired my goals to becoming a chef. It was that final push that got me to go to school for culinary arts. I wanted to find a way to make those family dinners work for me and for other people who have the disease.
Celiac disease has definitely thrown a wrench in cooking at times. I have to make dishes that I am not able to try and then I have to find people to be my guinea pigs. My 8 year old niece is also a celiac, diagnosed at a very young age. So when I do make anything that is gluten-free for family events I have to make sure she likes it too. She’s a tougher critic than the Choppedjudges…
I got onto Choppedby filling out an application online not thinking that they would even consider me! I would say maybe 2-3 weeks after I filled out the application I got a call from Scripts Network and they asked if I would be able to do an on camera interview with them in NYC. After the on camera interview, I received a call I think about a week later with a tentative date for filming! I was originally supposed to film in January of 2013 but I got a call from them mid December of 2012 asking if I could be in New York in 2 days to film! Needless to say I got coverage at the restaurant I was working at, booked a hotel room and got into NYC. The actual filming of the episode happens all in one day. The first round I didn’t get any suspicious ingredients but the second round I got Toban Djan, which is an Asian bean paste that contains soy sauce. In my head all I could think of was “of course they put this in the basket.” I ended up cooking lentils and adding the Toban Djan at the very end hoping that it was enough/worked with the dish. The dessert round I didn’t try the cookies I made. I had made that cookie before in the restaurants I worked in so I knew they were good.
So right now I am teaching at YTI Career Institute. I have a chef's dinner that is going to be auctioned off at a charity benefit so I am working with the man who is supplying the wines on a menu.
Having celiac disease has affected my teaching ability because I am not able to taste everything the students may make on a daily basis. With that being said I have learned to use my other senses to determine and properly evaluate the food the students make. Sight, is it fully cooked, over cooked or under cooked. Smell, is it over salted, burnt or was an ingredient left out.
My dad makes a prosciutto, mushroom and cream toast that he always makes for the holidays or any family dinner. Since my diagnosis we now always get gluten-free bread or baguette or crackers so my niece and I can have it.
There are a few restaurants that I just absolutely love that serve gluten-free food. Unfortunately two of them now are not open or went to strictly catering. One was Good Eats in West Reading. I actually worked there prior to going to culinary school. I loved it there and the gluten-free banana bread was amazing! The owner Rick, has since passed but I’ll never forget my time there, it was celiac heaven. Another one is Leigh Anns Coffee House in Key Colony Beach, FL. Since hurricane Irma the coffee house has turned into Clouds in My Coffee Catering. I worked in Philadelphia for some time and had the opportunity to eat at some amazing restaurants. Marcie Turney’s Lolita restaurant has the best Tres Leches Cake in town. Vetri lays out the red carpet and modifies gluten-free food to perfection. Amada and Distrito, two Jose Garces restaurants, are also on the top of my list.
My advice to aspiring chefs who have to deal with celiac disease, food allergies or intolerances would be to not let your food restriction hinder your work ethic. There is plenty of opportunities for advancement in the industry, you just have to teach yourself to work around it.
Kelly Okun is a professional golfer living with celiac disease
Kelly Okun isn't your typical 25 year old. Sure, she enjoys classic hobbies such as photography and hiking and she graduated from college a few years ago like many of her peers, however, Kelly is also a professional golfer gaining steam and currently taking on the golfing world head-on. She also happens to have celiac disease.
We recently chatted with Kelly to learn more about her life on tour and how celiac disease has affected her life and her game. Here's her interview:
I loved playing sports growing up in Chicago, so when I moved to Florida when I was 9, I thought I would give golf a try. I fell in love the sport and kept up with lessons throughout middle school. However, it wasn’t until my freshman year of high school that I began working with my swing coach, Martin Hall, and competing in tournaments. At that point, I was still playing basketball in high school. I knew I wanted to give myself the best chance to golf in college, so I fully committed myself to golf.
I was diagnosed with celiac disease in 2012, when I was 19. I was just finishing up my fall semester of my sophomore year of college.
I am currently finishing up my second year as a professional golfer. After competing at the LPGA Qualifying School this summer, I will be a Symetra Tour member again for my third year. I have competed on the Eggland’s Best Ladies Professional Golf Tour for the last three years as well as on the Australian LPGA Tour last year. I was also a member of the Ladies European Access Tour.
To play on the LPGA Tour. I would love the opportunity to travel and raise awareness for celiac disease on such a large platform.
During season, I try to work out about three times a week. With off-season approaching, I am hoping to get into the gym more. On the golf course, I split up my practice into chipping, putting, and long game sessions. I spend the majority of my time on short game, and I like to play as much as possible. Sometimes, I will take my drills onto the course to change things up a bit. I also work with an awesome mental coach once a week.
When I was playing at Penn State’s tournament, I had a rash on both of my elbows that refused to go away. When we got back to campus later that week, I went to a dermatologist, and she biopsied it. She told me I had dermatitis herpetiformis, and that the only treatment was a strict gluten-free diet. She then told me that a 1 out of 4 celiacs has DH, so she sent me to a gastroenterologist for that biopsy. Fortunately, this process only took me a couple weeks. In between endoscopies and other tests, I began researching celiac disease and what being gluten-free meant. That’s how I ended up finding Beyond Celiac. I was so glad Beyond Celiac had step-by-step instructions for going gluten-free and simple lists I could follow. I also liked learning more about celiac disease – seeing what the long-term effects would be to my health were more motivating to go gluten-free immediately than anything a doctor said.
Other than the rash, I did not notice any symptoms pre-diagnosis. I figured I just reacted poorly to some foods, but that that was normal. Afterwards, my body digested food much more easily and I had more energy than ever before. I also realized that my joint pains may not have been just from being an athlete, and that comforted me.
There are a couple people on my mom’s side of the family who have celiac disease. My mom carries the gene, but it has yet to activate for her. None of us looked into our family history or realized we had this gene until I was diagnosed.
At first, celiac disease hindered me socially. I did not trust many restaurants in my college town, and I hated feeling like a nuisance with my friends. However, I learned that as long as I asked the right questions when we went out to eat, I could make an educated guess if it would be safe for me to order something. I learned to bring snacks just in case or even meals if I knew the restaurant didn’t have any safe options I decided early on it was better for me to nag the waiter than it was for me to end up in a bathroom all night. Luckily, more options appeared as more people became aware of celiac disease and gluten sensitivities. Equally as great, my friends were really supportive and let me pick the restaurants.
The same proves true today on tour.
On the physical side, I notice that I have more joint pains and more frequent injuries than other golfers. I like to think I have a high pain tolerance, so I attribute that to celiac disease. I also had to trade in my long-term contact lenses for dailies because any cross-contamination with gluten causes corneal abrasions.
I have found a handful of chain restaurants that I trust, though I try to find host housing or hotels with kitchenettes when I travel. I am pretty protective of my golf game, and I don’t like unnecessarily risking getting sick before a tee time. Sometimes that means heading to the local Walmart to find a frozen meal for my microwave.
One of my goals this off-season is to come up with a more nutritious meal plan for when I travel. The best I came up with this past year was separately microwaving gluten-free chicken nuggets, rice and vegetables!
On the road, you will always see me with gluten-free almond butter banana sandwiches, Larabars, and nuts. These are my go-to tournament foods! I am going to start adding in other foods that are easy to travel with like avocados, apples (for my almond butter!), spinach and vegetables for on-the-go salads, and other healthy foods.
Unfortunately, there have been a couple instances when I was glutened before a tournament. For example, when I was playing in Morocco for the Ladies European Tour Qualifying School, I had to have a friend’s dad explain my allergy to the waiter in French, but I don’t think either understood the repercussions of cross-contamination or even gluten itself touching my meal. I don’t know what part of the meal caused it, but I spent almost the entire night in the bathroom and the rest of the week exhausted. Fortunately, language barriers aren’t a common issue, so I just stayed positive and learned what I could from my week in Africa. I also definitely spent the rest of the trip eating boiled eggs and my rice cakes with peanut butter.
Generally, I believe having celiac disease increases my likelihood of getting injured. I have learned not to take it personally the last couple of years, and it is nice to know why the injuries last longer than other golfers’, but it does sometimes prevent me from practicing or competing.
I try to see that recovery time as an advantage for my career, whether I am putting in extra work with my mental game or expanding my network through writing and social media.
Keep up with Kelly's golfing career on her website, kellyokungolf.com.
By The Seat of Our Pantyhose
By Kim Pacini, Assistant Director of Digital Media
By The Seat of Our Pantyhose is a feature on our Celiac Disease in the News page dedicated to sharing the stories of women in the celiac disease and healthcare space. The blog features inpsiring and empowering insight from female entrepreneurs, leaders, researchers and clinicians who have built successful projects from the ground up.
Alice Bast, CEO of Beyond Celiac, is the inspiration for the blog. Since 2003, Alice has built this organization into the leading celiac disease patient advocacy organization. She, like so many other amazing, determined women, have shaped the world we live in today. We look forward to sharing stories of women who have created something they believe in and become an inspiration for us all.
The blog will include articles from and about remarkable women, sharing their lessons learned while facing challenges and triumphs. We'll share their journeys with the intent of empowering our community to live our lives to the fullest.