In everyday conversation, the terms ‘allergy’ and ‘intolerance’ are frequently used interchangeably to describe a particular food the human body isn’t compatible with.
Most of us are aware that wheat and gluten is a problem area for those with coeliac disease. But what category does the condition fall into: allergy or intolerance?
As we’ll discuss, neither.
This week marks Coeliac UK Awareness Week. The campaign also known as Is It Coeliac Disease? aims to increase understanding of the condition among the general public; and to encourage those who might be experiencing symptoms but not know why to seek the help they need.
With this in mind, we got in touch with Kate Newman from Coeliac UK to discuss the condition in more detail.
Not an allergy and not an intolerance
The condition is often grouped together with allergies and intolerances but, as Kate explains, it’s inaccurate to describe coeliac disease as either:
‘It is important to distinguish between food allergy and food intolerance as these two terms can sometimes be confused.’
‘Food allergies are generated by the immune system and usually occur within seconds or minutes of eating the food in question. Tiny amounts can cause potentially life threatening allergic reactions, which is why it is vital to know about the ingredients and preparation of foodstuffs.’
‘Food intolerance is not triggered by the immune system and is generally not life threatening. It may affect the digestion and common symptoms include digestive discomfort, diarrhoea and bloating.’
The symptoms of coeliac disease (which we’ll come to shortly) occur when someone with the condition ingests gluten (a protein found in wheat). So why is it inaccurate to describe the disease simply as an intolerance to wheat?
As Kate illustrates, while the outward effects of coeliac response may seem similar, what happens inside the body is not the same:
‘Coeliac disease is not an allergy or simple food intolerance. It is an autoimmune disease which is triggered by eating gluten in the cereals wheat, barley and rye. When someone with coeliac disease eats gluten, their immune system reacts by damaging the lining of the small intestine.’
Symptoms and treatment
Kate goes onto explain that the symptoms of coeliac disease can range from very mild to severe:
‘Although not everyone with coeliac disease will experience them, symptoms of coeliac disease may include:
- frequent bouts of diarrhoea
- stomach pain and cramping
- regular mouth ulcers
- ongoing fatigue
- lots of gas and bloating,
- and vomiting.’
The gluten-free diet
‘There is no cure and no medication,’ Kate adds. ‘Coeliac disease is a lifelong illness, the only treatment is a strict gluten-free diet for life.’
This means choosing foods which are naturally free from gluten, which include:
- meat and fish
- fruit and vegetables
- rice and potatoes
and opting for gluten-free versions of those foods traditionally made with wheat, such as:
- gluten-free pasta
- gluten-free bread
- and gluten-free breakfast cereals
In some areas of the UK, people who have been diagnosed with coeliac disease are entitled to gluten-free staple foods on NHS prescription.
Thankfully, eating out with coeliac disease isn't as restrictive as it used to be. Many restaurants now specify which dishes on their menu are gluten-free, or offer gluten-free alternatives (but in any case, you should always take precautions and let your server know your dietary requirements).
What causes it?
Like many other conditions, there is no one definitive factor which causes coeliac disease. As Kate explains, a combination of genetic and environmental circumstances may play a role:
‘There are genes known as human leukocyte antigen genes which increase a person’s risk of having coeliac disease; however, approximately 30% of the population have these genes but only around 1% of people will develop coeliac disease.’
‘So, there are other factors involved (environmental or possibly other genetic factors) and further research is required to determine these.’
What is also important to note is that those with coeliac disease will not necessarily present itself during childhood or adolescence, with many not developing symptoms until adulthood or beyond:
‘People with coeliac disease are born with genes that predispose them to develop the condition but the symptoms can be triggered at any age. A stressful event such as pregnancy, childbirth or a bout of gastroenteritis may trigger coeliac disease in predisposed people.’
The condition is one which affects a considerable portion of Brits, but identifying symptoms and getting a diagnosis remains a significant problem.
‘One in 100 people in the UK has coeliac disease,’ Kate tells us, ‘while current research indicates that only 24% of those with the condition are diagnosed, leaving an estimated half a million people in the UK struggling with undiagnosed coeliac disease. The majority of people are diagnosed in their fifties and sixties.’
Why is coeliac disease so often missed?
Even though not everyone will have heard of coeliac disease before, the estimation that only a quarter of cases receive a diagnosis is still an astounding one.
Furthermore, Coeliac UK also report that the average duration between onset of symptoms and diagnosis is perhaps the longest we’ve heard of: at 13 years.
So what are the main reasons for this?
In short, Kate tells us, a lack of awareness and sometimes even misdiagnosis.
‘One in four people diagnosed with coeliac disease have previously been treated for irritable bowel syndrome,’ she explains, which evidences the high potential for confusion between the condition and IBS.
‘Also, the symptoms of coeliac disease can be similar to those of many minor problems, which people may prefer to discuss with their local pharmacist rather than visit their GP.’
What diagnosis involves
Some cases of coeliac disease may seem mild enough not to warrant seeking medical advice, but it's nonetheless important to address the condition. As Kate explains, those who don’t seek treatment may be putting themselves of increased risk of further illness:
‘Undiagnosed coeliac disease can lead to a number of complications including osteoporosis, fertility problems and, in rare cases, small bowel cancer if left untreated.’
Identifying the condition early on is therefore crucial in limiting symptoms, and developing an understanding of how to manage the condition.
‘The first step is to discuss symptoms with a GP who can take a simple blood test to check for antibodies.’ says Kate.
‘Antibodies are produced by the body in response to eating gluten.’
Those who are due to have a test for coeliac disease should note that avoiding gluten in the weeks beforehand may cause a false test reading:
‘It is therefore essential to continue to eat a gluten-containing diet prior to getting tested. The National Institute for Health and Clinical Excellence (NICE) recommend having gluten in more than one meal every day for at least six weeks prior to testing.’
Because coeliac disease can be easy to mistake for other conditions, Coeliac UK have developed an online tool which can help those experiencing symptoms determine whether or not they go to their doctor for further testing.
‘Since the assessment was launched under a year ago, over 30,000 people have taken the questionnaire. From feedback, the initial results suggest that around 8% of those who were recommended to seek testing went on to be diagnosed with coeliac disease.’
You can take the assessment here.
Kate’s advice for those who do receive a diagnosis is not to panic. Support is available through your GP, who will be able to refer you to a dietitian for advice.
Coeliac UK also offers its members a wealth of benefits and support, including an electronic food and drink directory, and access to their ‘Gluten-free on the move’ mobile phone app. Head over to their website to find out more and become a member.