Contact: Claire Baker
National Foundation for Celiac Awareness
215-325-1306 ext. 111
[email protected]

The burgeoning gluten-free market is now a $20 billion industry, according to new data released by SPINS, a consumer market insight firm. Unfortunately, ‘going gluten-free’ is often viewed simply as a popular dietary trend that expands on the low-carb diet craze. Many Americans fail to recognize its intimate connection to celiac disease, a genetic autoimmune disorder that affects one in 133 people. For people with celiac disease, following a strict gluten-free diet is both medically necessary and the only treatment option to combat symptoms and prevent serious long-term complications.

“The gluten-free boom has been so enthusiastically embraced by dieters, restaurants and marketers, that there’s casual application of ‘gluten-free,’ which can have serious medical consequences for people with celiac disease,” said Alice Bast, President and CEO of the National Foundation for Celiac Awareness (NFCA). “Currently, celiac disease is the untold element in the gluten-free story, and we need it inserted back – and featured prominently – in the conversation. Otherwise, we’ll continue to be challenged with a tragically low diagnosis rate at a huge cost to families and our healthcare system overall.”

In conjunction with Celiac Awareness Month in May, NFCA is educating the public about the connection between the gluten-free diet and the disease it treats by addressing common ‘gluten-free misconceptions’:

• Eliminating Gluten is the First Step in Identifying Celiac Disease: There is growing concern that the popularity of the gluten-free diet is preventing individuals from receiving an accurate diagnosis. According to 2012 Mayo Clinic research, an estimated 80 percent of the Americans on a gluten-free diet have not been diagnosed with celiac disease, while a mere 17 percent of people with celiac disease are diagnosed. Further, lack of education within the medical community has led to physicians encouraging patients to try the gluten-free diet without first getting a blood test for celiac disease. “Casually trying the diet without getting tested first is like trying a little insulin to see if you have diabetes,” said Bast.” To be properly tested, patients must be eating a regular, gluten-containing diet.
• A Gluten-Free Diet is a ‘Diet’: According to 2013 Mintel research, 65 percent of gluten-free consumers are eating gluten-free foods because they believe they are healthier, despite a lack of scientific validation. Though some gluten-free options are healthful, eliminating gluten when people do not have a medical necessity for doing so is unwarranted.
• Dining Establishments are Successfully Catering to People with Celiac: Despite restaurants and cafeterias introducing gluten-free options to meet growing demand, they are not always aware of the protocols required to serve gluten-free food safely for people with celiac disease. Recent data suggest 70 percent of people with celiac disease continue to be exposed to gluten while on a gluten-free diet. “We’re proud of the strides operators have made in developing gluten-free menus, but there’s often carelessness in back-of-the-house meal preparation, and cross-contact is still an issue,” said Jehangir Mehta, NFCA chef ambassador and Next Iron Chef finalist. “Since gluten can hide in packaged foods and just a few crumbs of gluten-containing food can make someone with celiac disease sick, it’s imperative that restaurants have formal training and operational procedures in place.”
• Foods Not Made with Gluten are ‘Safe’: The FDA estimates about five percent of ‘gluten-free’ products on the market contain an unsafe amount of gluten for those with celiac disease and other gluten-related disorders. A recent FDA ruling defines the gluten-free threshold and compliance with this law goes into effect in August 2014. However, people must be continuously proactive about consuming products that are both labeled and not labeled ‘gluten-free,’ as the regulation does not require manufacturers to list gluten as an ingredient in products containing gluten or to test products for gluten in those that are labeled gluten-free.

For those with celiac disease, consuming the gluten protein in wheat, barley and rye triggers an immune response that damages the lining of the small intestine that absorbs nutrients. This can lead to various debilitating symptoms, including diarrhea, weight loss or gain, anemia, fatigue, joint pain, or itchy skin rash, as well as infertility, recurrent miscarriages, osteoporosis, neurological conditions, other autoimmune diseases and some cancers if left untreated.

“We’re glad people are talking about gluten, however the generalizations being made by popular media regarding its effects are extremely misleading,” said Dr. Joseph Murray, North American Society for the Study of Celiac Disease (NASSCD) president and NFCA Scientific/Medical Advisory Council member. “It’s important that people understand the connection between their symptoms, medical history and celiac disease, and seek proper testing before they start to avoid gluten.”

The first step for someone who thinks they may have a problem with gluten is to get properly tested using blood tests (the IgA-tTG or IgA-EMA), followed by a biopsy of the small intestine to check for damage. Saliva, stool and some blood tests that are marketed for allergies, intolerances or sensitivities are not tests for – and cannot be relied on to identify – celiac disease. They also cannot diagnose gluten sensitivity, which currently remains a diagnosis of exclusion.

To help get the testing conversation started with a physician, DoIHaveCeliac.org provides a checklist of symptoms that patients can use. Since celiac disease is hereditary and can be diagnosed at any age, when someone is diagnosed, their relatives should also get tested, even if they are not experiencing any symptoms.

“NFCA is committed to moving the bar on diagnosis and helping people with celiac disease live life to the fullest and eat without fear through free patient programs and resources for the foodservice industry,” said Bast. “This May, we’re giving celiac disease a face by showcasing the people who – despite being negatively impacted by the gluten-free fad – continue to rise above the noise.” To help those newly diagnosed with celiac disease or non-celiac gluten sensitivity and those looking to better manage their gluten-free diet, NFCA also offers a variety of helpful resources at beyondceliac.org.

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About the National Foundation for Celiac Awareness
Through empowerment, education, advocacy and advancing research, the National Foundation for Celiac Awareness (NFCA) drives diagnoses of celiac disease and other gluten-related disorders and improves the quality of life for those on a lifelong gluten-free diet. For more information, please visit https://www.beyondceliac.org.