Coeliac disease is an autoimmune condition that causes people to have an adverse reaction to gluten. According to Guts UK, around one in 100 people in the UK have coeliac disease. However, it’s also thought that almost seven out of 10 (or around half a million people) are living with coeliac disease unknowingly.
If left untreated, coeliac disease can have a significant impact on quality of life and increase the risk of long-term health problems, such as anaemia and osteoporosis. However, the good news is that the majority of people experience relief when they cut gluten out of their diet.
Here, we’ll take a closer look at coeliac disease, including symptoms, causes, treatment, and how to transition to a gluten-free diet.
What is coeliac disease?
Gluten is a type of dietary protein found in wheat, barley, and rye, and is typically a safe and healthy food to eat. However, for people with coeliac disease, eating gluten causes the immune system to attack tissues in the small intestine.
This causes damage to the villi, which are finger-like projections needed for the absorption of nutrients. Over time, continuing to eat gluten can cause the villi of people with coeliac disease to become shorter and stubbier, which affects the body’s ability to absorb nutrients properly.
If left untreated, coeliac disease can lead to long-term health problems, which we’ll cover below.
It’s important to note that coeliac disease isn’t an allergy or food intolerance but an autoimmune disease.
What are the symptoms of coeliac disease?
Symptoms of coeliac disease can vary from person to person, ranging from mild to severe and often coming and going. For example, some people with coeliac disease don’t actually know they have it because they only experience mild symptoms, or no symptoms at all.
However, some of the most common symptoms of coeliac disease, according to the NHS, include…
- Diarrhoea
- Stomach aches
- Bloating
- Indigestion
- Constipation
- Vomiting
- Fatigue
- Unexplained weight loss
- Tingling or numbness in the hands and feet
Because the gut and brain are so intricately linked, coeliac disease can often cause symptoms like headaches and brain fog too. In fact, according to Guts UK, nearly four in 10 people diagnosed with coeliac disease will experience neurological symptoms.
Some people also develop dermatitis herpetiformis (DH), which is an autoimmune skin condition linked to coeliac disease. DH usually appears as a red, raised, blistered rash on the elbows, knees, face, and buttocks (though it can affect any area of the body). According to the NHS, around one in four people with coeliac disease develop DH.
What causes coeliac disease?
Experts are currently unsure what causes coeliac disease. However, a mixture of genetics, environmental factors, and underlying health conditions are believed to be the main factors at play.
Age and gender also seem to have an influence, as more women than men are diagnosed with coeliac disease and the average age of diagnosis is between 40 and 60 years old. However, people can be diagnosed with coeliac disease at any age.
Genetics
Coeliac disease often runs in families. According to Coeliac UK, people who have an immediate family member with coeliac disease (a mother, father, sister, or brother, for example) have a one in 10 risk of developing the condition themselves. This jumps to a 75% chance if you have an identical twin with coeliac disease.
Research has also linked coeliac disease with mutations of HLA-DQ genes. These are a group of genes responsible for immune system development and mutations may be passed down through families.
However, while these mutations are fairly common (affecting about four in 10 of the general population), not everyone with them develops coeliac disease, which suggests that genetics are not the only factors at play.
Environmental factors
According to the NHS, you’re more likely to develop coeliac disease if you had a digestive infection – such as rotavirus infection – during early childhood.
Coeliac disease has also become increasingly prevalent in recent years, which points to the role of environmental factors. Some studies suggest this could be down to changes in the way that wheat is processed, or the widespread use of gluten in packaged foods. However, further research is needed.
Other health conditions
Research has identified a link between certain health conditions like type 1 diabetes, Down’s syndrome, Turner syndrome, and thyroid conditions, and coeliac disease risk.
However, according to the NHS, it’s currently unclear whether these health conditions directly increase the risk of coeliac disease, or whether both they and coeliac disease have the same underlying cause.
How is coeliac disease diagnosed?
Coeliac disease can sometimes be tricky to spot because it has such a wide range of symptoms. For example, research suggests that one in four adults with coeliac disease are misdiagnosed with irritable bowel syndrome (IBS).
For this reason, it’s important to speak to your GP and have the correct tests carried out to make sure you get the right treatment.
The NHS advises getting tested for coeliac disease if you have symptoms such as ongoing fatigue, unintentional weight loss, frequent mouth ulcers, or persistent, unexplained gastrointestinal problems, like diarrhoea, bloating, or stomach aches.
For those at higher risk, for example, if you have first-degree relatives with coeliac disease or a health condition like type 1 diabetes or Down’s syndrome, it’s also worth getting tested. If you’re unsure of your risk, Coeliac UK’s free online assessment can be helpful for determining whether you should be tested for coeliac disease. That said, it’s always worth speaking to your GP if you have any concerns, even if you don’t fall into these categories.
Testing for coeliac disease involves having a blood test and, in some cases, a biopsy of the small intestine. While being tested for coeliac disease, you’ll be asked to eat gluten-containing foods to make sure the results are accurate.
If you’re diagnosed with coeliac disease, you may need to undergo further tests to determine how the condition has affected you. For example, blood tests to check for problems caused by poor absorption of nutrients, such as iron deficiency anaemia.
You can read more about how coeliac disease is diagnosed on the NHS website.
How is coeliac disease treated?
Coeliac disease is a lifelong condition, and sticking to a gluten-free diet is the only treatment that can restore the gut and keep it healthy in the long-term.
Gluten is found in wheat, barley, and rye; and any products containing these grains, such as pastas, breads, cakes, biscuits, and breakfast cereals. Barley is also used to make most beers and lagers, and flour is often added as a thickener in soups and cooking sauces.
It’s also worth noting that food can sometimes get contaminated during production or processing. Research has found that even tiny amounts of gluten can cause symptoms in people with coeliac disease, so it’s important to learn about gluten free food labelling.
Transitioning to a gluten-free diet can feel difficult, particularly if you’ve always eaten gluten. However, the good news is that there is plenty of support and resources available, and gluten-free products have become increasingly common and diverse.
Guts UK has useful guidance available on their website, including how to navigate food labels and eating out; and the NHS offers a gluten free food service, which allows people to access gluten free products on prescription. You can find out more about eligibility on the NHS website.
If you’re diagnosed with coeliac disease, your doctor will also refer you to a dietician who can provide information on how to maintain a healthy and balanced gluten-free diet.
Note: Transitioning to a gluten-free diet may not always have immediate results. The small intestine can take anywhere from two to five years to fully recover, depending on how damaged it is.
4 ways to cope with coeliac disease
Living with coeliac disease can be challenging, but with the right support and approach, it’s entirely manageable. Plus, many people find that eating gluten-free becomes second-nature over time.
We’ll cover some things that may help you cope better below…
1. Familiarise yourself with gluten free labelling
Checking labels for gluten becomes much easier when you know what you’re looking for. Products with the crossed-grain symbol, or a specific gluten-free label, are gluten free.
If there isn’t an obvious symbol, you’ll need to check the ingredients as, by law, all allergens must be highlighted. If there’s no mention of wheat, rye, or barley, the final step is to check for any ‘may contain’ statements on the packaging. Many people will avoid products with this statement, but it’s up to you to make the decision.
You can read more about gluten free labelling on the NHS website.
2. Learn which foods are naturally gluten free
Every supermarket has a ‘free from’ section. This contains various everyday products like bread, pasta, cereal, and biscuits, which have had gluten removed.
However, you don’t have to restrict yourself to this section, as there are plenty of foods that are naturally gluten free. This includes fruit, vegetables, rice, potato, nuts, fish, eggs, cheese, pulses, and most yoghurts.
If you’re unsure whether something is gluten-free, it’s important to check the labelling.
3. Prepare in advance when eating out
Enjoying meals out is entirely possible with coeliac disease, as many venues offer gluten free menus or can adapt dishes to be gluten free.
Coeliac UK also has a list of accredited venues, including both chain and independent restaurants, that can provide safely prepared gluten free food across the UK. If you’re eating somewhere that isn’t accredited, many people find that calling restaurants ahead of time offers them reassurance.
4. Consider joining a support group
Many people with coeliac disease find it useful to connect with others going through similar experiences.
Charities like Coeliac UK have information on how to access local support groups if you’d like to find out more.
For further advice on living well with coeliac disease, watch the video below from the NHS…
What impact can coeliac disease have if left untreated?
If people with coeliac disease continue to eat gluten, it can cause the villi in their small intestine to become almost entirely flat or, in some cases, disappear entirely.
This is known as villous atrophy which, if left unchecked can lead to malabsorption and increase the risk of conditions like osteoporosis, iron deficiency anaemia, vitamin B12 aneamia, and folate deficiency aneamia. Research also suggests that continuing to eat gluten may slightly increase the risk of certain cancers and infertility in women. Though, according to Guts UK, this risk is usually resolved with a gluten-free diet.
More generally, the NHS reassures that complications of coeliac disease only tend to affect those who continue to eat gluten. This includes those who haven’t been diagnosed with the condition, which is why it’s important to get tested if you have any symptoms or are at higher risk of coeliac disease.
The good news is that once people with coeliac disease stop eating gluten, the small intestine begins repairing itself and will eventually regain its ability to absorb nutrients.
Final thoughts…
Coeliac disease is a lifelong condition that affects around one in every 100 people in the UK. While living with coeliac disease can take time to get used to, the good news is that with the right support, symptoms are entirely manageable.
For further reading, head over to the general health section of our website. You might also be interested in our article; 10 tasty gluten-free recipes.
Do you have any experience of living with coeliac disease that you’d like to share? We’d be interested to hear from you in the comments below.
