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Coeliac disease is an auto-immune disease. An auto-immune disease is where your body’s immune system starts to attack itself. Coeliac disease is triggered when you eat something called gluten. Gluten is a type of protein that can be found in wheat, rye, and barley.
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The severity of coeliac disease is on a spectrum – some people get very severe symptoms and others have mild bloating. Symptoms also build up over time and can take a while to go away, so it can be challenging to figure out what is triggering them. It won’t be as simple as say, every time you eat bread, you get severe abdominal pain.
Some common symptoms which people experience are;
People from all over the world are at risk of getting coeliac disease. It can be diagnosed when you are a baby and start weaning, but a lot of people tend to be diagnosed in their 40s and 50s. That being said, you can be diagnosed at any time in your life. Women are slightly more likely than men to be affected.
There is a type of coeliac disease where people have absolutely no symptoms. This is found when a gut biopsy is taken, perhaps from a routine coloscopy. When this biopsy is examined under a microscope, key changes in the structure of the cells can be seen which indicate coeliac disease. This is enough on its own for a diagnosis. It is thought that around 20% of people with coeliac disease have absolutely no symptoms.
Coeliac disease has to be tested when a person still has gluten in their diet. This is because most of the tests will be negative if a person has been on a gluten-free diet. There are a few different tests you will be offered if your doctor thinks that you might have coeliac disease.
Your blood will be tested for antibodies that your body forms against gluten. Different types of antibodies can be tested for, though the most common one is referred to as anti-TTG. These antibodies are only present in people who have coeliac disease. If they are not found in your blood, it does not mean that you don’t have coeliac disease, although it is much less likely.
If you have a positive antibody test, your doctor will refer you for an endoscopy. This is where a camera is put through your mouth, then into your stomach and through to your small bowel. It isn’t painful, though most people will experience a small amount of discomfort. It can be done without any sedation, with tablets to help keep you calm and a little sleepy, or with a full general anaesthetic.
Most people are fine without anything, or only oral sedatives, when having this test. The camera will show any areas of the bowel which look like they might be affected. Then a tiny biopsy is taken and pulled out with the camera. The inside of your gut doesn’t experience pain, so the biopsy process will not be painful. You may feel a slight tugging sensation.
After the endoscopy, your doctor may give you an idea about what they found. If there was a lot of inflammation, they will probably tell you this, but you won’t know the results for a few weeks while the biopsies are being tested.
Biopsy of the bowel is the definitive way to diagnose coeliac disease. If you have been eating gluten and have symptoms with a negative biopsy, then you do not have coeliac disease.
If you have skin lesions suggestive of dermatitis herpetiformis, then a biopsy can be taken to confirm this. If the rash is diagnosed as dermatitis herpetiformis, this is all you need to get a diagnosis of coeliac disease.
If you’ve been on a gluten-free diet, then your doctor will ask you to start eating gluten again before testing. This is because the tests might come back falsely negative if you’ve been on a gluten-free diet for a while.
These are not available on the NHS. The kits do not specifically look for DNA that causes coeliac disease, but rather look for DNA mutations which people with coeliac disease often have. Generally, these mutations are HLA-DQ2, or HLA-DQ8. If the tests come back showing that you have these genetic mutations, it does not mean that you have coeliac disease. The number of people with HLA-DQ2, or HLA-DQ8 mutations, without coeliac disease is far higher than the number who do. If you don’t have these mutations however, it is improbable that you have coeliac disease.
There is no medication that you can take to get rid of coeliac disease. The treatment is to eat a diet that is free of any gluten. This is very difficult because a lot of the staple foods in our diet have some form of gluten in them.
Once you have been diagnosed with coeliac disease, you will be referred to a dietician. Keeping a gluten-free diet is not only difficult, but also presents difficulties with making sure that you are getting all of the right nutrients and dietary fibre.
Having a gluten-free diet is associated with a higher intake of poorly nutritious foods, which are higher in carbohydrates. This puts people with coeliac disease at higher risk of obesity and all of the health issues associated with this. A dietician can help to form diet plans with you to make sure you know how to keep yourself healthy.
All patients with coeliac disease should be on calcium and vitamin D supplements. This is to make sure that your bones remain healthy and you do not develop a condition called osteoporosis, or weak bones.
Rarely, people who have severe coeliac disease may initially present with coeliac crisis. They usually have severe, watery diarrhoea, and this can cause them to get low blood pressure and low blood salts. In these patients, a short course of steroids may be prescribed to decrease the inflammation in the gut, while a gluten-free diet is started.
Research is ongoing into treatments for coeliac disease. Currently, several drugs are being looked at, which may restore gluten tolerance. There have been drugs that have been studied previously and have not shown any improvement in patients with coeliac disease. We are probably decades away from any treatments which could come close to this.
Early evidence from research shows that probiotics may help with gut healing in patients who have coeliac disease. Care must be taken though, as many probiotics contain gluten themselves. Using probiotics can be a healthy way to supplement your diet, and there is no reason that you shouldn’t try them if you feel that you would like to. Make sure to find a gluten-free probiotic if you are considering this.
Another focus of ongoing research is to find a way to modify gluten so that it is no longer an issue for people with coeliac disease to eat. This could lead to a broader variety of food products which would be safe for people with coeliac disease to eat, making sticking to a diet easier.
Most of the time, people with coeliac disease don’t develop any complications. There are a few conditions that are seen more frequently in people with coeliac disease, but generally, the risk of developing them is low. Some of these conditions are:
This is where your bones become weak over time because they don’t have enough calcium. The risk of this decreases with a gluten-free diet, and generally, after a year, your risk would be the same as someone who does not have coeliac disease.
This is a type of rash which is characteristic of coeliac disease. The rash is usually little blisters which are more common on the elbow, knees, and buttocks. The blisters sit on an angry red background and are severely itchy. A drug called Dapsone can be taken to ease this rash.
There is a slightly increased risk of bowel cancer in patients that suffer from coeliac disease. This increased risk improves with an effective gluten-free diet. Given the small risk of bowel cancer generally, people with coeliac disease are still at low risk of developing the disease.
Sometimes this presents with abdominal pain and vomiting, or occasionally, just persistent watery diarrhoea.
People with coeliac disease generally have excellent immune systems. If you have coeliac disease, you may be at a slightly increased risk of getting infections with a particular type of bacteria known as pneumococcus. This bacteria can cause infections in lots of different places in your body, but most commonly, it causes pneumonia. It also causes more rare infections like meningitis. Your GP may offer you a vaccine against this bacteria if you have coeliac disease.
Anything with wheat, barley, or rye in it will contain gluten. The most common examples would be bread, pasta, or anything with flour in it like cakes. Other things that may well have gluten in them that you wouldn’t necessarily think of are soups, or casseroles, where flour is used to thicken the sauce. If you are buying pre-made foods, make sure to check the labels to see if they contain wheat, barley, or rye. Gluten-free foods may well be labelled somewhere on the packaging.
Some foods which are safe to eat are:
Certain drinks are not gluten-free, these include:
Wine, cider and most liqueurs are likely to be okay, but the labels should still be checked.
The charity Coeliac UK operates a frequently updated gluten-free food guide for patients. They also have an app that you can download and use on your phone.
Around 90% of people who have started a gluten-free diet will see their symptoms disappear. Of those who do not, it is likely that they are either accidentally eating gluten, or are not sticking to a strict diet.
Less than 1% of people who stick to a gluten-free diet with coeliac disease will have ongoing symptoms. If this is the case, you will need to see your GP, as you may need further testing to see if you have any other underlying health conditions causing the problem.
In general, if your symptoms have disappeared, you will not need any follow up. You do not need routine monitoring of blood tests, or follow up endoscopies.
If you are struggling to keep to a gluten-free diet, or feel like you cannot cope with it financially, or are suffering from ongoing symptoms, you should speak to your GP.
Different areas of the UK have other prescribing practices when it comes to coeliac disease. You may be eligible for certain foods, such as gluten-free bread, on the NHS. To find out if this could be you, you should see your doctor.
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The charity Coeliac UK operates a helpline Monday to Friday, 9am to 5pm. Their website has a wealth of information on the disease, as well as information on current research. They raise funds for research and operate food guides to help people find safe things to eat.
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Medical terms are often baffling and difficult to fully understand. To help, we have listed some frequently used terms below.
Antibodies – when your white blood cells come into contact with an infection, they produce antibodies which act like weapons against the infection. In coeliac disease, they do this in response to gluten, and the antibodies attack the lining of the gut wall. This causes inflammation and the symptoms associated with coeliac disease
Biopsy – the medical process of taking a small piece of something, like your bowel. This is then sent to a laboratory for further tests
Gluten – a protein found in wheat, barley and rye
Osteoporosis – a medical condition in which the bones become abnormally weak
Probiotics – a type of bacteria which people can take which is seen to be beneficial to the body. This can be in the form of tablets, or can be taken in other ways, commonly in yoghurt
Sedatives – drugs which are used to make someone sleepy
Steatorrhoea – horrible-smelling diarrhoea with yellow lumps. The lumps within the diarrhoea are fats, and this is caused by the inadequate breakdown of foods by your gut
