It is estimated that one in 100 people has coeliac disease, a serious autoimmune condition where the immune system attacks healthy tissue in the gut. Triggered by gluten, the more obvious symptoms include bloating, indigestion, and diarrhoea. However, many of the condition's more subtle symptoms frequently go undetected. Ahead of Coeliac Awareness Month this May, Alice Andrews from Coeliac UK helps dispel widespread misconceptions and highlights six commonly overlooked signs that may be worth raising with your GP.
What Is Coeliac Disease?
"Coeliac disease is a serious autoimmune condition caused by a reaction in the immune system in response to gluten. When people with coeliac disease eat gluten, it damages the lining of the small intestine where food and nutrients are absorbed. This means the body cannot properly absorb nutrients from food," said Andrews. She stresses that it is neither an allergy nor an intolerance to gluten, which remains a widespread misconception. "Many people say 'a bread crumb won't hurt', but we know that very small amounts of gluten can be damaging."
How Common Is It?
"One in 100 people in the UK has coeliac disease," says Andrews. Yet, according to Coeliac UK, only 36% of those affected receive a diagnosis, leaving 500,000 people struggling with unexplained symptoms.
What Are the Risk Factors?
"If a first-degree family member (parent, sibling, child) has coeliac disease, the chances of having the condition increase to one in 10. Therefore, if a close family member is diagnosed, the recommendation is that the rest of the family test for coeliac disease too. In addition, if you have another autoimmune disease, such as autoimmune thyroid disease, then you have a higher risk of having coeliac disease compared to the general population."
What Symptoms Should You Look For?
"The symptoms are always persistent, recurring, or unexplained. The common symptoms that most people know about are gut symptoms, such as severe or regular diarrhoea, constipation, unexplained vomiting or nausea, and recurrent stomach pain and bloating. However, coeliac disease is a multi-system disorder, and there are a few symptoms that most people are not as aware of," said Andrews.
Six Subtle Signs of Coeliac Disease
- Mouth ulcers: "Persistent mouth ulcers are a symptom of coeliac disease that most people aren't aware of," Andrews states.
- Sudden or unexpected weight loss: "Sudden or unexpected weight loss is another symptom that some people might not know about," the health policy lead notes.
- Ongoing tiredness: "Tiredness is also a symptom that often gets missed," Andrews said. The NHS highlights that fatigue can be a sign of iron deficiency anaemia, or vitamin B12 or folate deficiency anaemia.
- Numbness and tingling in the hands and feet: "One of the neurological symptoms that people with coeliac disease sometimes experience is peripheral neuropathy, which is a numbness and tingling in your hands and feet," said Andrews.
- Issues with coordination and balance: "Another neurological sign that many people don't know about is ataxia, which causes issues with coordination," Andrews said.
- Persistent gut symptoms: While more widely known, severe or regular diarrhoea, constipation, vomiting, nausea, stomach pain, and bloating remain key indicators.
As soon as your symptoms become severe, recurring, or persistent, go and see your GP. Coeliac UK offers an "Is it coeliac disease?" symptom checker online, where anyone can fill in a short questionnaire, and the results will recommend whether it is advisable to see a GP about your symptoms.
How Is It Diagnosed?
"The first step is going to the GP and getting a blood test. Once that blood test comes back, if it is positive, or if the GP still suspects something, you will be referred to a specialist in secondary care, often a gastroenterologist. They will do further investigations and confirm the diagnosis. This could be through an endoscopy and a biopsy, or it could be done on your blood tests alone," said Andrews.
How Is It Treated or Managed?
"Coeliac disease is a lifelong condition, and the only treatment is a gluten-free diet," said Andrews, emphasising that a gluten-free diet is neither a lifestyle choice nor a passing trend for those living with coeliac disease. "They need to follow a strict gluten-free diet so their body and gut can heal and absorb nutrients again. Therefore, getting support from a specialist dietitian is very important, and there is also a lot of support and tips on Coeliac UK's website about this."
What Might Happen If Coeliac Disease Remains Undiagnosed?
"If coeliac disease remains untreated, it can lead to complications such as osteoporosis, and you can also develop anaemia from not having enough nutrients. In very rare cases, people can develop a type of cancer called small bowel lymphoma," said Andrews.
