Digestive Disease Week, held this year in Chicago and virtually, is the world’s premier meeting for gastroenterology. The Celiac Disease Foundation is pleased to have presented original research – co-authored by Chief Executive Officer Marilyn Geller and in partnership with Takeda and Adelphi Real World – describing the patient experience with celiac disease and highlighting the need for better therapies and physician management of the disease. 

To promote breakthrough scientific and clinical research, the Foundation also presented the Prize for Excellence in Celiac Disease Research, and the Young Investigator Prizes in Basic and Clinical Science at its annual Awards Reception in honor of the celiac disease research and medical community. 

Research Presentation 

The Virtual Celiac Symptoms Study: symptom and gluten-free diet perception at baseline 

To better understand the symptoms and impact of celiac disease, and to identify patient groups who may need therapy options in addition to a gluten-free diet, the Celiac Disease Foundation partnered with Takeda for the recruitment and management of the Virtual Celiac Symptoms Study (VCSS). In this first longitudinal study in US adults and adolescents, patients completed daily, weekly, and monthly questionnaires about their symptoms and quality of life for 12 weeks using a smart phone app. Initial result focused on adult participants’ perceptions of their disease experience.  

Though all patients reported adhering to a gluten-free diet, nearly 60% reported celiac disease- related symptoms in the week prior to completing the questionnaire. 

Additional findings include: 

  • The top four most commonly reported symptoms were bloating, tiredness, abdominal pain, and diarrhea, and the most bothersome symptoms were diarrhea, abdominal pain, brain fog, and nausea. 
  • Almost all patients surveyed (96.4%) reported occurrence of celiac disease symptoms, with almost a quarter indicating that they experienced symptoms despite not having been knowingly exposed to gluten.  
  • In total, 84% of patients reported that they were likely/extremely likely to experience celiac disease symptoms after gluten exposure. 
  • Over 70% of patients described symptom intensity as moderate (38.5%) or severe (32.5%). The remaining patients reported mild symptom severity (5.6%) or had varying levels of symptom severity (23.4%). 
  • In total, 11% of patients reported hospitalization or emergency room (ER) visits due to celiac disease symptoms in the past year. 

While these findings represent only the initial analysis of the adult study population, they provide clear evidence that a gluten-free diet may be inadequate in managing celiac disease-related symptoms and emphasize the need for alternative therapeutic options. Further analyses of the data will be conducted to gain a more comprehensive understanding of the disease experience in both adults and adolescents. We look forward to sharing these additional findings as they become available. 

Physician management of celiac disease: a comparison of disease knowledge, diagnosis, and patient management between gastroenterologists and primary care physicians in Germany, Italy, Spain, and the United States  

This study, funded by Adelphi Real World, found significant differences between gastroenterologists (GIs) and Primary Care Providers (PCPs) in celiac disease diagnosis and management, highlighting the need for further education of PCPs to improve the consistency of care received by celiac disease patients.  

Primary findings include: 

  • GIs reported higher use of biopsies, blood tests, and imaging tests for patient diagnosis and monitoring compared to PCPs.  
  • GIs were more likely than PCPs to consider villus atrophy and test results when determining disease severity and remission status. 
  • GIs were more aware than PCPs about the risks of gluten intake for celiac patients, with 57.5% of GIs stating there is no safe level of gluten intake compared to 35.4% of PCPs. Moreover, 17% of PCPs did not know whether gluten intake is acceptable for asymptomatic patients, compared to 8% of GIs. 

Diagnosing Celiac Disease in the United States of America, Germany, Italy and Spain: Findings from a Real-World Survey  

This second Adelphi Real World study found that patients in all four countries experienced long delays in diagnosis of celiac disease and were frequently misdiagnosed. This is important because late diagnosis of celiac disease can lead to long-term health complications and other autoimmune disorders for patients.  

Highlights from this comparative analysis include: 

  • Patients from the US wait longer (mean 17.7 months) from symptom onset to initial consultation with a doctor. 
  • Patients experience a further delay between the initial consultation and diagnosis (1 month in US compared to 3.1 months in Spain). 
  • More than one-third of patients initially received an incorrect diagnosis, with 84% of misdiagnosed US patients being told they had Irritable Bowel Syndrome. 

The Celiac Disease Foundation has long been aware of the lack of knowledge among healthcare providers regarding how best to care for celiac disease patients.  We continue to fund multiple initiatives to accelerate diagnosis and improve management of celiac disease – including a partnership with NASPGHAN for the Clinical Guide for Pediatric Celiac Disease, residency training curriculum development at the Keck School of Medicine of USC, dietitian training in gluten-related disorders development and support for the Academy of Nutrition and Dietetics, and physician continuing education programs in celiac disease at the Celiac Disease Center at Columbia University Medical Center, the University of Chicago Celiac Disease Center, the Harvard Medical School Celiac Research Program, and Children’s National Health System. 

2023 Research Prize Laureates  

The Foundation was also delighted to present the $25,000 Prize for Excellence in Celiac Disease Research to Dr. Robert Anderson, and the $10,000 Young Investigator Prizes in Clinical and Basic Science, this year awarded to Dr. Valerie Abadie and Dr. Maureen Leonard, respectively. We are deeply grateful to our Prize Laureates for their commitment to the celiac disease patient community and for their dedicated work to move us toward treatments and a cure for celiac disease.  

Further DDW Highlights 

The Foundation will be providing further information and highlights from the research presented during DDW 2023 in our monthly Research Update. If you have not already subscribed to receive these important news briefs, please do so here 

For more information about the studies discussed above, or about how the Celiac Disease Foundation is working to accelerate research for treatments and a cure, please contact us at [email protected].