Coeliac disease affects around one in every 100 of us, but experts believe this figure is underestimated as milder cases often go undiagnosed.
It is considered a serious illness where the body's immune system attacks its own tissues when you eat gluten, causing damage to the lining of the gut. This means the body can’t properly absorb nutrients from food, warns Coeliac UK.
The charity highlights that only 36 percent who have the condition have been diagnosed, meaning half a million people are unaware they are suffering from coeliac disease.
Tristan Humphreys from Coeliac UK has said the disease is “surprisingly common” as he speaks out during Coeliac Awareness Week (May 15 to 21, 2023). He told the Sun: “A lot of people are going about their daily lives feeling unwell and running the risk of long-term health conditions.
“If they continue to eat gluten, not only can they suffer debilitating symptoms in the short-term but they run the risk of serious conditions such as osteoporosis and infertility in the future. In rare cases, it may lead to bowel cancer.”
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So, what are the common symptoms of coeliac disease and how long does it take to get a diagnosis? Here’s everything you need to know.
Symptoms of coeliac disease
Coeliac disease is not an allergy or food intolerance. Instead, it is an autoimmune disease - the body's immune system attacks healthy cells - which can cause a reaction that is sometimes severe.
Tristan explains: “It requires strict adherence to the gluten free diet. There is sometimes an assumption this is a faddy diet but it is absolutely not that.
"When someone with coeliac disease eats gluten — a protein found in wheat, barley and rye — their immune system attacks their own body, causing damage to the lining of the gut. It has a wide range of symptoms, which vary from person to person.”
People with the condition may suffer from:
- Diarrhoea
- Bloating
- Stomach cramps
- Constipation
The expert warned of some lesser-known symptoms that are often overlooked, including:
- Extreme fatigue
- Persistent mouth ulcers
- Subfertility
- Unexplained anaemia
Others may experience recurrent miscarriage and unexplained neurological symptoms, such as ataxia, which can lead to a lack of balance, coordination, and trouble walking.
Tristan added: “It’s different for everyone. This isn’t a tick list of things you must suffer to have it. Often someone with coeliac disease has a number of symptoms they don’t link together. There is a sense that something is not right.”
This comes as Karen Abi-Karam from Forest Row, East Sussex, suffered from cramps and exhaustion for years before being diagnosed. The 49-year-old told the Sun: “It was in 2007 that I first remember getting crippling pains in my shoulder blades that spread until my whole torso felt tight.
“It felt like a very severe cramp. I’d had IBS in my late teens too, though the two were never connected.”
In 2014, Karen visited a doctor who specialises in hormones and nutrition, who ran several blood and urine tests and suggested it might be coeliac disease.
She added: “The test came back positive. I cut out gluten immediately. It took around eight months for me to feel well again.”
The disease can be developed at any age, with the charity revealing it takes on average 13 years to be diagnosed. It is most frequently diagnosed in people aged 40 to 60-years-old.
Coeliac disease is often misdiagnosed as Irritable Bowel Syndrome (IBS), happening to one in four with the condition. Testing for the disease involves having a blood test which looks for antibodies produced by people with coeliac disease when they eat gluten.
It’s common for you to have the illness if a family member suffers from it too - one in ten of those with a close relative have the condition.
Treatment for coeliac disease
According to the NHS, there is no cure for coeliac disease, but following a gluten-free diet should help control symptoms and prevent long-term complications.
Tristan said: “The diet is strict but it is manageable. Once you follow the diet your gut will heal.”
If you are experiencing symptoms of the condition, you can take an online assessment on the Coeliac UK website. This will advise you on the best course of action based on your answers to 10 questions.
