Debunking 4 common myths about coeliac disease

Coeliac disease, an autoimmune disorder that affects nutrient absorption, remains widely misunderstood despite growing awareness. Many misconceptions persist, often leading to confusion about symptoms, diagnosis, and treatment.  

Dr Ciaran Kelly, medical director of the Coeliac Centre at Beth Israel Deaconess Medical Centre and professor of medicine at Harvard Medical School, highlighted how perceptions of coeliac disease have changed over the years. 

"Our conception and awareness of coeliac disease has evolved over the past few decades, but there are still aspects that remain poorly understood," he said.  

Myth 1: Coeliac disease is typically diagnosed in childhood  

Contrary to popular belief, coeliac disease is not always detected in early childhood. While it can develop anytime after a baby's first exposure to gluten, diagnosis often happens much later in life. According to the National Coeliac Association, most diagnoses occur between the ages of 46 and 56, with about 25% of cases identified after 60.  

The condition is slightly more prevalent among women and individuals with other autoimmune disorders, such as type 1 diabetes, Hashimoto's thyroiditis, and dermatitis herpetiformis, a skin condition linked to coeliac disease.  

"We don't know why some people go from being susceptible to actually having coeliac disease," Dr Kelly explained. He suggested that physical or emotional stress—such as viral infections, surgery, or significant life events—may trigger the onset of the disease. 

"Increasing numbers of people are being diagnosed at midlife and older, often after they're found to have conditions such as anaemia or osteoporosis caused by nutrient deficiencies," he added.  

Myth 2: Coeliac disease only affects the digestive system 

Although coeliac disease is commonly associated with gastrointestinal issues, such as bloating, diarrhoea, and stomach pain, its effects extend beyond the gut. The immune response triggered by gluten damages the villi—tiny projections in the small intestine responsible for nutrient absorption—leading to nutrient deficiencies.  

However, symptoms can manifest in various ways, impacting the nervous, endocrine, and skeletal systems. Some individuals experience brain fog, irregular menstrual cycles, or muscle and joint pain without any apparent digestive distress.  

Myth 3: Gluten intolerance and coeliac disease are the same

Many assume that experiencing discomfort after eating gluten indicates coeliac disease, but this is not always the case. Some individuals suffer from non-coeliac gluten sensitivity, also known as gluten intolerance, which causes digestive issues without triggering the autoimmune response characteristic of coeliac disease.  

Coeliac disease is confirmed through blood tests that detect specific antibodies, followed by an intestinal biopsy to assess damage to the small intestine. In contrast, gluten intolerance does not result in antibody production or intestinal damage, though those affected may still report symptoms like fatigue, brain fog, and muscle pain.  

"Non-coeliac gluten sensitivity appears to be a real phenomenon, but it's not well defined," Dr Kelly stated. He noted that symptoms might be caused by other factors, such as FODMAPs—a group of fermentable carbohydrates found in wheat—that can trigger bloating and digestive discomfort. Wheat allergies, which cause immune reactions such as skin rashes, nasal congestion, or anaphylaxis, may also be mistaken for gluten sensitivity.  

Myth 4: A gluten-free diet always resolves symptoms  

Avoiding gluten is currently the only treatment for coeliac disease, yet some patients continue to experience symptoms despite following a strict gluten-free diet. This condition, known as nonresponsive coeliac disease, affects approximately 20% of patients.  

"About 20% of people with coeliac disease have ongoing symptoms, despite their best efforts to stick to a gluten-free diet," Dr Kelly said. He pointed out that accidental gluten exposure, particularly from cross-contaminated foods or mislabelled restaurant meals, is a common cause.  

Research is underway to explore additional treatment options. Scientists are investigating three promising approaches:  

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

- Inhibiting the enzyme tissue transglutaminase, which plays a role in the immune response to gluten  

- Reprogramming the immune system to prevent adverse reactions to gluten  

While these potential treatments are still in development, they offer hope for those struggling with persistent symptoms. In the meantime, awareness and accurate information about coeliac disease remain essential for early diagnosis and effective management.