Celiac Disease Screening Program to Improve Awareness, Education and Diagnosis Nationwide

September 27, 2016

Celiac Disease Screening Program to Improve Awareness, Education and Diagnosis Nationwide


AMBLER, Pa. – September 27, 2016 – Beyond Celiac, Thermo Fisher Scientific and Dr. Schar USA Inc. have awarded Wake Forest Baptist Medical Center in Winston-Salem, North Carolina a $20,000 grant to help fund a one-day family screening event on Saturday, October 22, 2016 where biological relatives of celiac disease patients will be offered free blood testing. Celiac disease is a serious autoimmune condition with a genetic component, affecting just under one percent of the population, or about one in 133 Americansi, and is at least four times more common today than in 1950ii. However, only 17 percent of Americans with celiac disease are diagnosediii.

This is a unique pilot program, which the organizers hope will serve as a model nationwide, that targets family members of patients previously diagnosed with celiac disease and who are thus at a higher risk themselves for the disease.

The collaboration will deploy the Beyond Celiac Seriously, Celiac Disease campaign (www.SeriouslyCeliac.org) as the program’s communications intervention to help recruit study participants. The campaign, launched in 2015, teaches those diagnosed with celiac disease how to have an effective conversation with their at-risk family members. The campaign strategy was directly informed by patient-powered, qualitative research, which found that when biological relatives are educated about the condition in the appropriate setting and are provided with the right resources for follow-up, their receptivity to simple blood testing for celiac disease increases.

The study organizers believe that their model for screening families at-risk for developing celiac disease will lead to new strategies and provide better outcomes.

Blood tests will identify those individuals with antibodies to specific celiac disease biomarkers. Subjects with a positive blood test will be referred to a gastroenterologist for further testing and work up. This may include an upper gastrointestinal endoscopy with small bowel biopsy, which is the recommended diagnostic procedure to confirm the diagnosis of celiac disease.

Living with undiagnosed celiac disease may increase a person’s risk for developing certain cancers, such as lymphoma, bone disease and other autoimmune diseasesiv,v. Prompt and accurate diagnosis, combined with elimination of gluten from the diet and proper disease management by a knowledgeable healthcare team, may mitigate long-term health complicationsvi.

Two leading celiac disease experts, Anne Lee, EdD, RDN, LD and Daniel Leffler, MD, MS are collaborating on this initiative to increase diagnosis and accelerate celiac disease research.

Dr. Leffler, Director of Research at the Celiac Center at Beth Israel Deaconess Medical Center and Beyond Celiac Scientific/Medical Advisory Council Member, notes, “Fewer than one in five people with celiac disease get diagnosed. One of the best opportunities we have to address this issue is to effectively target high-risk groups such as people with a family history of celiac disease and identify persons, through screening, who are candidates for biopsy. This collaboration is a great step towards improving diagnosis rates and improving our understanding of the benefits of family screening.”

Beyond Celiac, formerly known as the National Foundation for Celiac Awareness, is a leading celiac disease advocacy organization that reaches millions of people a year promoting diagnosis by encouraging people who are genetically at-risk to get tested and advocating for collaborative research toward a cure. The Beyond Celiac Seriously, Celiac Disease campaign was recognized at the Stanford Medicine X 2016 Conference in the workshop “Applying Behavior Change Models to Educate Genetically At-Risk Celiac Disease Patients.”

Thermo Fisher Scientific, the world leader in serving science, produces EliA™ Autoimmune Assays for processing on the Phadia Laboratory Systems. As a leader in autoimmunity diagnostics, Thermo Fisher Scientific, ImmunoDiagnostics is supporting this study with a grant and also providing the EliA Celikey IgA, an immunoassay for anti-tissue transglutaminase (tTG) antibodies, and EliA GliadinDP IgA and EliA GliadinDP IgG, anti-gliadin immunoassays based on deamidated peptides. These blood tests aid clinicians in the diagnosis of celiac disease and are integral to the celiac screening program.

Dr. Schar USA specializes in the development and production of foods for people with special dietary needs. An avid supporter of helping people with celiac disease live well, Schar is committed to raising awareness and understanding of celiac disease and its only current treatment, the gluten-free diet. Schar offers extensive services to support dietitians and healthcare providers with specialist education to help people manage their disease.

Wake Forest Baptist Medical Center is home to the Gluten and Allergic Digestive Disorders (GLADD) Program directed by celiac disease expert, Anca Safta, MD. The GLADD Program provides comprehensive medical and nutritional care and ongoing monitoring for children and adults diagnosed with celiac disease. Elizabeth T. Jensen, PhD, MPH, in the Department of Epidemiology and Prevention in Wake Forest University Public Health Sciences, provides support to the GLADD program to conduct research that will advance understanding of celiac disease. Drs. Jensen and Safta are leading the research associated with the family screening pilot project. Dr. Safta strongly believes that, “Celiac disease doesn’t just affect one person, it affects the entire family.” The GLADD Program staff consistently advocate for family screening for their patients diagnosed with celiac disease.

For more information, please contact:
Claire Baker, Director of Communications and New Media, Beyond Celiac at [email protected] or (267) 419-2111.


i Fasano A, Berti I, Gerarduzzi T, et al. Prevalence of celiac disease in at-risk and not-at-risk groups in the United States: A large multicenter study. Arch Intern Med. 2003;163(3):286-292.

ii Rubio–Tapia A, Kyle R, Kaplan E, et al. Increased prevalence and mortality in undiagnosed celiac disease, Gastroenterology, 2009 July; 137, (1): 88–9.3

iiiRubio-Tapia A, Ludvigsson, J, Brantner, T, et al. The prevalence of celiac disease in the United States. Am J Gastroenterol, 2012:107(10):1538-44.

Ventura A, Magazzù G, Greco L. Duration of exposure to gluten and risk for autoimmune disorders in patients with celiac disease. SIGEP Study Group for Autoimmune Disorders in Celiac Disease. Gastroenterology. 1999 Aug;117(2):297-303.

vElfström P, Granath F, Ye W, Ludvigsson, J. Low risk of gastrointestinal cancer among patients with celiac disease, inflammation, or latent celiac disease, 2012 Jan; 10 (1):30–36.

vi Rubio-Tapia A, Hill I, Kelly, C, Calderwood A, Murray J. Diagnosis and management of celiac disease, Am J Gastroenterol 2013; 108: 656–676.



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