8 Years to the Diagnosis of Celiac Disease

This online survey was conducted in August 2022 by Dr. Schär. There were 1,682 participants. Responses showed that the path to diagnosis is more like a marathon than a sprint: on average, it took almost 8 years for the disease to be diagnosed with celiac disease in this group. During this time, almost half of them (45%) have consulted three or more doctors about their condition. For many (approximately 2/3 of participants), the first point of contact was the family doctor or primary care doctor, highlighting the need for better education and training on the >200 signs and symptoms of celiac disease.

Celiac Disease is rarely recognized immediately

Persistent abdominal cramps or pain and bloating were the most common symptoms given by respondents at the initial consultation. However, those affected suffered from a wide range of symptoms. In fact, a total of over 200 different symptoms were mentioned in the survey.These included many extra-intestinal complaints such as fatigue, headaches, sudden weight loss, and skin rashes.The wide range of relatively non-specific symptoms makes diagnosis more challenging for the treating physicians. Only 18% of those surveyed were diagnosed celiac disease early on in their journey. In the majority of cases, the practitioners initially diagnosed them with other diseases, most commonly irritable bowel syndrome, food intolerance, and intestinal infections.

These results are consistent with a survey of 300 general practitioners conducted in 2021. When confronted with classic celiac disease symptoms, they most frequently named gastrointestinal infections, functional intestinal diseases, ulcerative colitis or Crohn's disease as possible causes [2]. Only 29% spontaneously considered celiac disease as the trigger [2]. Though celiac disease is commonly associated with gastrointestinal issues, extra-intestinal symptoms are not as well known among practitioners. In Germany, the most updated guidelines recommend testing for celiac disease for all patients presenting with gastrointestinal and extra-intestinal symptoms that persist for more than 4 weeks and cannot be otherwise explained [3]. This approach would lead to improved diagnosis rates if providers were properly educated and trained on recognizing possible causes of celiac disease

Much uncertainty about the gluten-free diet

Early diagnosis spares patients from long-term suffering from the unpleasant symptoms and subsequent health consequences due to a delayed start of a gluten-free diet. Nearly half of surveyed participants (47%) said that the delays and many tests had caused them stress.The survey also shows that even after diagnosis, coping with celiac disease was not easy for many respondents. Almost all received the recommendation to eat strictly gluten-free for life in order to become and remain symptom-free. Many had also been given nutrition education to some level. Nevertheless, questions about the change in diet remained unanswered for nearly half of participants, demonstrating a lack of nutrition knowledge. Expert nutritional advice from an experienced Registered Dietitian is a critical component of care for the celiac patient. In this survey, only 47% of the survey participants had been referral to a dietitian - so there is still potential for improving care here.