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.

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.  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.

At-home test for monitoring celiac disease

At-home test for monitoring celiac disease

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.

Read More: At-home celiac disease test

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.

Newly diagnosed

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.

Long-time patients

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.

Monitoring challenges

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.

Read more: Measuring gluten in stool and urine

Increasing diagnosis

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.

Interview with Nicole Marchetti, Chef and “Chopped” Champion with Celiac Disease

Interview with Nicole Marchetti, Chef and "Chopped" Champion with Celiac Disease

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:

When did you first get into cooking?

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.

When were you first diagnosed with celiac disease?

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.

What was your diagnosis journey like?

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.

Did you have complications from celiac disease prior to your diagnosis?

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.

How did your diagnosis impact your career goals?

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.

How has having celiac disease affected you as a chef?

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…

Speaking of "Chopped," how did you get on the show? Did having celiac disease affect your cooking on the show?

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.

What are you up to now? What are your plans for the future?

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.

How does having celiac disease affect your teaching of future chefs?

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.

What is your favorite gluten-free dish?

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.

Do you have a favorite restaurant that serves gluten-free foods?

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.

What would you say to other aspiring chefs with celiac disease, food allergies or intolerances?

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.

Interview with Kelly Okun, Pro Golfer with Celiac Disease

Interview with Kelly Okun, Pro Golfer with Celiac Disease

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:

Kelly OkunHow did you first get into golf?

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.

When were you diagnosed with celiac disease?

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.

Where are you currently in your golf career?

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.

What are your ultimate goals in terms of golf?

To play on the LPGA Tour. I would love the opportunity to travel and raise awareness for celiac disease on such a large platform.

What is your training routine like?

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.

What lead to your celiac disease diagnosis?

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.

Does anyone else in your family have celiac disease?

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.

How has celiac disease affected your life as a young adult as well as your golfing career?

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.

When you travel for golf, how do you handle living gluten-free?

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!

What kinds of foods do you like to eat on the road?

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.

Has celiac disease ever affected your playing or tournaments?

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 The Seat of Our Pantyhose

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.