While many people recognise the common digestive issues linked to coeliac disease, fewer are aware of the more subtle symptoms that can easily go unnoticed.
In the lead-up to Coeliac Awareness Month in May, we spoke with Alice Andrews, health policy lead at Coeliac UK, who helped clear up some common misconceptions about the condition and outlined six often-overlooked signs that may be worth discussing with your doctor.
What is coeliac disease?
“Coeliac disease is a serious autoimmune condition which is caused by a reaction in the immune system in response to gluten,” explains Andrews. “So, when people with coeliac disease eat gluten, it damages the lining of the small intestine where food and nutrients are absorbed. This means when this damage is happening, the body can’t properly absorb nutrients from food.”
She emphasises that it’s not an allergy or an intolerance to gluten, which is a common misunderstanding.
“Many people say ‘a bread crumb won’t hurt’, but we know that very small amounts of gluten can be damaging,” says Andrews.
How common is it?
“One in 100 people in the UK have coeliac disease,” says Andrews.
However, only 36% are diagnosed which leaves 500,000 people suffering with unexplained symptoms, according to Coeliac UK.
What are the risk factors?
“If a first-degree family member (parent, sibling, child) has coeliac disease, the chances of having the condition increases to one in 10,” says Andrews. “Therefore, if a close family member is diagnosed with coeliac disease, the recommendation is that the rest of 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 are some symptoms to look out for?
“The symptoms are always persistent, reoccurring or unexplained,” says the health policy lead. “The common symptoms that most people know about is the 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.”
Here are six more subtle signs of coeliac disease to have on your radar…
1. Mouth ulcers
“Persistent mouth ulcers are a symptom of coeliac disease that most people aren’t aware of,” says Andrews.
2. Sudden or unexpected weight loss
“Sudden or unexpected weight loss is another symptom that some people might not know about,” says the health policy lead.
3. Ongoing tiredness
“Tiredness is also a symptom that often gets missed,” says Andrews.
Fatigue can be be a sign of iron deficiency anaemia, or vitamin B12 or folate deficiency anaemia, according to the NHS website.
4. Vitamin deficiencies
Malabsorption (where your body does not fully absorb nutrients) can lead to a deficiency of vitamins and minerals, according the NHS website.
“People with coeliac disease are often iron deficient or vitamin B12 deficient,” says Andrews.
5. 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,” says Andrews.
6. Issues with coordination and balance.
“Another neurological sign that many people don’t know about is ataxia, which causes issues with coordination.” says Andrews.
When should you raise these symptoms with a doctor?
“As soon as your symptoms become severe, reoccurring or persistent, you should go and see your GP,” recommends the health policy lead. “At Coeliac UK we have a Is it coeliac disease? symptom checker, where anyone can go online, fill in a little short questionnaire and the results will recommend whether it’s a good idea to go and see your GP about your symptoms or not.”
How is it diagnosed?
“The first step is going to the GP and getting a blood test, and then once that blood test comes back, if it’s positive, or if the GP still suspects something, you’ll be referred to a specialist in secondary care, which is often a gastroenterologist,” says Andrews.
“Then they will do further investigations and confirm the diagnosis. This could be through an endoscopy and a biopsy, or it could just be done on your blood tests alone.”
How is it treated or managed?
“Coeliac disease is a lifelong condition, and the only treatment is a gluten-free diet,” says Andrews.
The health policy lead highlights that a gluten-free diet is not a lifestyle choice or a ‘fad’ for people with coeliac disease.
“They need to follow a strict gluten-free diet so their body and gut can heal and absorb nutrients again,” says Andrews. “Therefore, getting support from a specialist dietitian is very important, and there’s 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,” says Andrews.
“In very rare cases, people can develop a type of cancer called small bowel lymphoma.”
This Coeliac Awareness Month, Coeliac UK is urging people not to ignore persistent symptom. To check your risk of developing coeliac disease visit isitcoeliacdisease.org.uk