Coeliac disease is an autoimmune condition that affects the small intestine. It’s caused by an adverse reaction to gluten, a protein composite found in grains such as barley, wheat and rye. The reaction causes the small intestine to become inflamed and unable to absorb nutrients.
Those diagnosed with the condition will need to make changes in their diet to eliminate gluten. On this page we will look at coeliac disease in more detail, including symptoms, going gluten-free and advice for those living with coeliac disease.
What is coeliac disease?
Autoimmune conditions occur when the immune system mistakes healthy cells and substances for harmful ones and tries to fight them off. With coeliac disease, the immune system mistakes gliadin (one of the substances that makes up gluten) for something harmful. Antibodies are released to fight the substance which leads to inflammation of the intestine.
This affects digestion, making it difficult for the body to absorb nutrients. This can lead to a range of symptoms and can become very harmful if left untreated.
The symptoms of coeliac disease range from person to person. For some the symptoms are mild, for others severe. They often come and go depending on what you’ve eaten and exactly how severely your body reacts.
If you have a mild case of the condition, you may not have any noticeable symptoms, making it difficult to be diagnosed (it may only be detected during testing for another condition). Even if your symptoms are mild/non-existent, you will still be recommended treatment as complications of coeliac disease can still affect you.
Common symptoms of coeliac disease:
The most common symptom of coeliac disease is diarrhoea. This happens because the body is unable to properly absorb nutrients. When this happens, stools are left with an unusually high level of fat.
Other common digestion-related symptoms include:
- abdominal pain
- vomiting (typically only affects children)
Other symptoms you may experience include:
- tiredness and fatigue
- sudden/unexpected weight-loss
- swelling of the extremities
- difficulty getting pregnant
- tingling/numbness in hands and feet
- an itchy rash (dermatitis herpetiformis)
When coeliac disease is left untreated, you are unable to digest food properly. This can lead to malnourishment, meaning you aren’t getting enough vitamins and nutrients. This leaves you feeling tired and depleted of energy.
In children, this can affect growth and may even delay puberty.
This is not a symptom of coeliac disease, however if you have an autoimmune reaction to gluten you may also develop a skin rash known as dermatitis herpetiformis. The cause of this isn’t entirely understood, although we do know there is a link to gluten. This means when you stop eating gluten, your dermatitis herpetiformis should clear up.
It’s estimated that around one in five people with coeliac disease will develop dermatitis herpetiformis.
How common is coeliac disease?
According to the NHS, coeliac disease affects around one in 100 people in the UK. Some experts believe this to be an underestimate however, as milder cases can be misdiagnosed or even undiagnosed.
The condition can develop at any age and is reportedly two to three times more common in women. If you have close relatives with the condition (siblings, parents and children) you are also at an increased risk.
If you fall into one of the higher risk categories, your doctor may recommend testing you for coeliac disease. If not, testing will usually only take place if you present with symptoms.
If you’re worried about symptoms, it’s important to see your GP. It’s also advised that you refrain from eliminating gluten from your diet at this stage (it’ll be important for your doctor to test how your body reacts to gluten).
If your doctor thinks your symptoms line up with coeliac disease, they’ll run a blood test to check for antibodies. Having these in your blood can be a sign of coeliac disease, however your test can come up negative even when you have the condition. Again, keep gluten in your diet for now to ensure accurate results.
If your blood test show antibodies, or your doctor recommends further testing, you’ll be referred to a gut specialist for a biopsy. They will explain the process for you and will advise you not to remove gluten from your diet until after the biopsy has been done.
What causes coeliac disease?
It isn’t fully understood why some people develop coeliac disease, and indeed why some people’s symptoms are severe and others are mild. There are however known factors for increasing risk of developing it, these include:
Family history. The condition tends to run in families, so if a close relative of yours has coeliac disease you will have a higher chance of developing it.
Environmental factors. If you had an infection in your digestive symptom when you were a child, you’re more likely to develop the condition.
Introducing gluten too early. There’s evidence that shows introducing gluten into a baby’s diet before three months old may increase their risk of developing coeliac disease (most experts say it’s best to wait until six months before introducing gluten).
Refractory coeliac disease
This rarer type of coeliac disease sees symptoms continue even after gluten is eradicated from the diet. It’s estimated that approximately one in 140 people with coeliac disease will develop refractory coeliac disease.
If your doctor suspects you have this, they will likely do further testing to ensure no other condition is causing it. If no other condition is found and your diagnosis is confirmed, you’ll be referred to a specialist who will offer treatment options such as medication.
Treatment - going gluten-free
Treatment for coeliac disease involves removing gluten from your diet. Doing this allows the gut to heal and prevents further damage. If you do continue to eat gluten, your symptoms will continue to get worse and you could risk long-term damage to your health (including cancer and osteoporosis).
Once you stop eating gluten, your symptoms should improve quite quickly (often within weeks) however it can take up to two years for your gut to totally heal.
Giving up gluten may sound like a big change, but you will get support. Your GP can offer advice and you may be referred to a dietitian who can help you adjust your diet.
If you would like further/ongoing nutritional support, you can use our search tool to find a dietitian in your area.
Your dietitian will help you understand which foods are safe to eat and which aren’t. They’ll also help to ensure you’re getting a well-balanced diet with enough vitamins and minerals.
Many foods are naturally gluten-free, such as vegetables, meat, potatoes, cheese and rice. There are also increasing numbers of gluten-free alternatives on the market, including pasta, pizza and breads. Some GPs will even provide gluten-free foods on prescription.
Your dietitian will guide you on what you can eat and what you can’t, however the following list can help:
Foods containing gluten (foods to avoid):
- gravies and sauces
Foods not containing gluten:
- fruit and vegetables
- meat and fish
- most dairy produce
- gluten-free flours like soy, potato, rice and corn
When you have coeliac disease, it’s really important to always check food labels. A great deal of processed foods for example will contain gluten in additives. You should also be aware that non-food products can also contain gluten including postage stamps, lipstick and some medications.
Food that’s labeled as gluten-free must, by law, contain no more than 20 parts per million (ppm) of gluten. This small amount won’t be problematic for most people with coeliac disease, however a small number are unable to tolerate even this.
A word on oats
While oats themselves don’t contain gluten, many of those with coeliac disease steer clear of them as they can become contaminated with cereals that do contain gluten. There’s even evidence that a very small amount of people can be triggered by a protein called avenin which can be found in oats.
Speak to your doctor about this and if you do decide to try oats, avoid them until your symptoms have cleared up and stop eating if they trigger symptoms.
As well as eliminating gluten from your diet, the following treatments may be advised.
Vaccinations - For some people, coeliac disease can cause the spleen to work less effectively. This can make you more prone to infection. Because of this, some people may be offered extra vaccinations.
Supplements - Whilst your gut heals from the damage caused by coeliac disease, you may be recommended to take vitamin and mineral supplements. These will ensure you get enough nutrients to aid healing and stay healthy during the process.
Dermatitis herpetiformis medication - If you have dermatitis herpetiformis (a skin reaction to gluten) and it is taking a long time to heal, your doctor may offer you medication to help it heal.
Living with coeliac disease
Learning to live with coeliac disease can be a big adjustment, but there is plenty of support and guidance available to help. Below are some general tips to keep in mind.
- Separate your cooking utensils to avoid cross contamination.
- Use a clean toaster/grill when making gluten-free toast.
- Use separate condiments such as mayonnaise, butter and jam.
- Communicate your requirements with restaurant staff.
- If you’re unsure about anything on the menu, ask your waiter. Caterers must (by law) provide information on any allergens in their dishes.
- Ask if there is any risk of cross contamination with the meal you’ve ordered.
- Remember fruit and vegetables are gluten-free! Aim for at least five portions a day.
- Eat a well varied, balanced diet that doesn’t contain too much sugar or salt.
- Avoid excess alcohol.
For more support on living with coeliac, take a look at our further help section.