Debunking 4 Common Myths About Coeliac Disease

Coeliac disease, an autoimmune disorder that impairs nutrient absorption, is still widely misunderstood, despite growing awareness. Misconceptions about its symptoms, diagnosis, and treatment continue to cause confusion. Dr. Ciaran Kelly, medical director of the Coeliac Centre at Beth Israel Deaconess Medical Centre and professor at Harvard Medical School, explains how perceptions of the disease have evolved but still remain incomplete.

“Our understanding of coeliac disease has advanced, but some aspects remain poorly understood,” Dr. Kelly said.

Myth 1: Coeliac Disease Is Only Diagnosed in Childhood
Many believe coeliac disease is typically diagnosed in early childhood, but this is far from the case. While it can develop after a baby’s first exposure to gluten, most diagnoses occur much later in life. According to the National Coeliac Association, the majority of diagnoses happen between ages 46 and 56, with about 25% of cases identified after age 60.

Women and individuals with other autoimmune disorders, such as type 1 diabetes or Hashimoto's thyroiditis, are more likely to develop coeliac disease. Dr. Kelly suggested that physical or emotional stress—such as viral infections or major life events—could trigger its onset. "Increasing numbers of people are being diagnosed in midlife, often after issues like anaemia or osteoporosis are discovered," he added.

Myth 2: Coeliac Disease Only Affects the Digestive System
Coeliac disease is commonly associated with gastrointestinal issues like bloating, diarrhoea, and stomach pain, but its effects go beyond the gut. The immune response triggered by gluten damages the small intestine’s villi, leading to nutrient deficiencies. However, symptoms can manifest in other areas, affecting the nervous, endocrine, and skeletal systems.

Some individuals may experience brain fog, irregular menstrual cycles, or muscle and joint pain without any obvious digestive symptoms.

Myth 3: Gluten Intolerance and Coeliac Disease Are the Same
A common misconception is that gluten intolerance and coeliac disease are identical. While both conditions cause discomfort after consuming gluten, they differ significantly. Coeliac disease triggers an autoimmune response that damages the small intestine, confirmed through blood tests and an intestinal biopsy. In contrast, gluten intolerance does not cause this immune reaction or intestinal damage but may still cause symptoms like fatigue, brain fog, and muscle pain.

Dr. Kelly noted that non-coeliac gluten sensitivity is a real but poorly defined condition, and its symptoms may be caused by other factors like FODMAPs, fermentable carbohydrates found in wheat, or wheat allergies.

Myth 4: A Gluten-Free Diet Always Resolves Symptoms
While a gluten-free diet is the only current treatment for coeliac disease, about 20% of patients continue to experience symptoms despite strict adherence to the diet. This condition, known as nonresponsive coeliac disease, can be caused by accidental gluten exposure, such as cross-contamination or mislabelled restaurant meals.

Ongoing research is exploring additional treatment options, including:

    Enzymes that break down gluten, similar to lactase pills for lactose intolerance

    Inhibitors of tissue transglutaminase, the enzyme involved in the immune response to gluten

    Reprogramming the immune system to prevent gluten reactions

Although these treatments are still in development, they offer hope for those struggling with persistent symptoms. In the meantime, accurate information and early diagnosis remain key to managing coeliac disease effectively.