Coeliac disease

Coeliac disease is triggered by your body’s immune system reacting to gluten, which is a type of protein found in wheat, barley and rye. Many foods contain gluten, including:

• Biscuits, bread and cakes 
• Cereals
• Most beers
• Pasta
• Some sauces and ready meals

Gluten contains a substance called gliadin, which your immune system mistakenly identifies as a threat to your body. Eating foods containing gluten therefore triggers an autoimmune response, which involves your body producing antibodies that attack the lining of your small intestine. 

This causes inflammation and damages the lining of your small intestine, specifically tiny projections that cover the lining called villi. Villi increase the surface area of your gut, which helps it absorb nutrients. When these villi are damaged in coeliac disease, it becomes difficult for your body to digest food and absorb nutrients, which causes diarrhoea, stomach pain and vomiting.

Coeliac disease can be difficult to diagnose because symptoms are similar to other conditions, such as irritable bowel syndrome, gluten intolerance or a food allergy.

If undiagnosed or left untreated, it can have a considerable impact on your daily life and lead to other serious health conditions.

There’s no cure for coeliac disease. However, once diagnosed, coeliac disease can be successfully treated by permanently changing to a strict gluten-free diet (a coeliac diet).

Who is affected by coeliac disease?

Coeliac disease is a chronic (long-term) condition affecting 1 in every 100 people. Women are three times more likely to have coeliac disease than men. It can develop at any age. However, symptoms are most likely to appear during early childhood or when you’re between 40 and 60.

The exact cause of coeliac disease is currently unknown, but there may be a genetic link. Research has discovered that 1 in 10 people with coeliac disease has an immediate relative with coeliac disease. If you are an identical twin and your twin has coeliac disease, your risk of developing it is 75%.

Other factors which increase the risk of coeliac disease include having:

• A digestive infection — particularly in early childhood
• Infant-feeding practices — there may be a higher risk if gluten is introduced into a baby's diet before three months or if a baby is not breastfed when gluten is introduced to their diet; it is generally recommended to only introduce gluten to a baby's diet after six months
• Other medical conditions — this includes:
• Addison's disease
• Conditions affecting the liver or thyroid
• Disorders that affect the brain and nervous system eg epilepsy
• Down's syndrome and Turner syndrome
• Ulcerative colitis — a condition that causes inflammation of the large bowel
• Type 1 diabetes

Coeliac disease can also be triggered by: 

• A stressful event — this includes: 
• Childbirth
• Pregnancy
• Severe emotional distress
• Surgery 
• A viral infection 
• Eating oats — this may be due to:
• Avenin, which is present in oats and is similar to gluten; although most people with coeliac disease can safely eat avenin
• Oats being contaminated with other gluten-containing grains during the production process

Symptoms vary greatly from person to person, and children and adults may have different symptoms. However, after eating foods containing gluten, the following symptoms often occur: 

• Bloating and flatulence
• Constipation
• Diarrhoea — this is the most common symptom and is caused by your gut not fully absorbing nutrients from the food you have eaten (malabsorption); your diarrhoea may smell particularly unpleasant 
• Indigestion
• Passing stools that are foul-smelling, frothy and greasy, and may be difficult to flush down the toilet — this is caused by malabsorption, which leads to higher levels of fat in your stools (steatorrhoea)
• Stomach aches or pain 

Other general symptoms of coeliac disease include:

• Brain and nerve problems — this includes: 
• Headaches
• Nerve damage
• Poor balance, coordination and speech 
• Fatigue — this is caused by your gut not absorbing enough nutrients
• Gastrointestinal problems — this includes: 
• Anal discharge
• Irritable bowel syndrome
• Mouth ulcers
• Vomiting
• Joint pain
• Poor spleen function (hyposplenism)
• Unexplained weight loss

You may also find it difficult to get pregnant. 

In some cases, coeliac disease is symptomless and only discovered during tests for other medical conditions.

Dermatitis herpetiformis

This is not a symptom of coeliac disease. However, if you have an autoimmune reaction to gluten you may also develop dermatitis herpetiformis. This is an itchy rash with blisters, which usually occurs on your buttocks, elbows and knees. One in five people with coeliac disease develops this rash.

Coeliac disease in children

If you think your child may have coeliac disease, childhood symptoms to look out for include:

• Anaemia
• Damage to the outer surface (enamel) of their teeth 
• Developmental problems — this includes: 
• Delayed puberty
• Slow growth and weight gain — this is medically called a failure to thrive
• Weight loss
• Gastrointestinal problems — this includes: 
• A swollen belly, bloating and flatulence
• Chronic diarrhoea or constipation
• Nausea and vomiting
• Pale, foul-smelling stools
• Irritability
• Muscle wasting

Your child may also show neurological symptoms, such as: 

• Attention deficit hyperactivity disorder (ADHD)
• Headaches
• Learning disabilities
• Poor muscle coordination
• Seizures

Your GP will discuss your symptoms and family history of coeliac disease. They may also examine your abdomen. 

If you have an increased risk of developing the disease eg if you have a family history of coeliac disease, particularly if your parent, child or sibling has the disease, they may recommend you get a coeliac disease test. 

There are two types of coeliac disease test — both are blood tests:

• Genetic testing — this checks for variations in human leukocyte antigen (HLA) genes that are specific to people with the disease; a positive test does not mean you have or will have the disease but a negative test does rule out having coeliac disease
• Serology testing — this checks for antibodies against gluten in your blood; however, you can have the disease and not have any of these antibodies; you will need to continue eating foods containing gluten before you have this test

If the results of your test are positive, your GP will refer you to a doctor specialising in treating conditions affecting the stomach and intestines (a gastroenterologist) for an intestinal biopsy. This is to rule out other conditions, such as irritable bowel syndrome and certain cancers, and to confirm coeliac disease.

Your biopsy will be carried out in a hospital under local anaesthetic and perhaps a sedative. A thin telescope-like tube with a camera on the end (an endoscope) will be passed through your mouth and down into your small intestine. A special tool will be passed through the endoscope to collect samples of the lining of your small intestine.

Your doctor may recommend other tests to determine the impact of the disease on your health, such as: 

• A DEXA scan to check your bone density — poor absorption of nutrients and poor digestion can weaken your bones, causing osteoporosis
• A test for dermatitis herpetiformis (if you have symptoms)
• Tests to check your iron, mineral and vitamin levels — poor digestion can cause abnormal levels

The earlier you get a diagnosis of coeliac disease, the lower your risk of developing other conditions. The risk of developing another autoimmune condition increases depending on the age you are diagnosed and treated for coeliac disease, as follows: 

• Diagnosis aged 2-4 years — risk is about one in 10 
• Diagnosis aged 4-12 years — risk is about one in six 
• Diagnosis aged 12-20 years — risk is almost one in four 
• Diagnosis aged 20 or over — risk is about one in three 

A gluten-free diet is the only successful treatment for coeliac disease. 

If you have mild symptoms but test positive for coeliac disease, it is still recommended that you eat a gluten-free diet to avoid serious complications developing in the future. 

After diagnosis, if you stop eating all foods containing gluten, your damaged small intestine will begin to recover — it may take up to two years for it to heal. Any symptoms, such as diarrhoea and stomach pain, will improve and your risk of long-term conditions such as anaemia or osteoporosis will reduce. You will have annual reviews of your symptoms, where your height and weight will also be measured. 

At first, you may find it difficult to remove gluten from your diet. However, your GP or gastroenterologist will refer you to a specialist dietitian to ensure your gluten-free diet remains balanced and healthy and contains all the nutrients you need. With regular appointments, your dietitian can advise, inform and support you as you follow a gluten-free diet.

Following a gluten-free diet

In recent years, the range of gluten-free foods has increased, with gluten-free bread, pasta and pizza now widely available. This means that with the help of a dietitian, you can eat a balanced, healthy and varied gluten-free diet.

To follow a gluten-free diet, you will not be able to eat any foods that contain barley, wheat or rye. This includes foods containing: 

• Couscous
• Durum
• Farina
• Graham flour
• Semolina
• Spelt  

Coeliac disease symptoms can be triggered with as little as a spoonful of pasta. 

Gluten is not essential for a healthy diet and can be safely replaced with other foods. Many foods are naturally gluten-free and therefore safe to eat if you have coeliac disease. This includes: 

• Fruits and vegetables
• Gluten-free flours ie flour made from corn, potato, rice and soy
• Meat and fish — but they must not be battered or breaded 
• Most dairy products eg butter, cheese and milk 
• Potatoes
• Rice and rice noodles 

Do not eat oats until your gluten-free diet has resolved your symptoms.

By law in the UK, food labelled gluten-free must contain no more than 20 parts per million (ppm) of gluten.

Gluten can be hidden in foods as food stabilisers, modified food starch and preservatives, and can be found in communion wafers. It can also be found in medications and non-food products, including:

• Envelope and stamp glue
• Lipstick and similar products
• Playdough
• Prescription and over-the-counter medications
• Supplements such as herbal, nutritional, mineral and vitamin supplements
• Toothpaste and mouthwash

If your symptoms are triggered by trace levels of gluten, these foods and products should also be excluded. Gluten-free hygiene and cosmetic products are now available.

Vaccinations 

If you have coeliac disease, your spleen may not be as effective in fighting infections. You may therefore need additional vaccines, such as the Hib/MenC vaccine, flu vaccine and pneumococcal vaccine. 

Supplements

Your GP or dietitian may recommend vitamin and mineral supplements for the first six months after your diagnosis. This will ensure you are getting all the nutrients you need while your small intestine heals. You may need supplements for:

• Copper
• Folate
• Iron
• Vitamins B-12, D and K
• Zinc

Dapsone 

If you have developed dermatitis herpetiformis, it may take longer for the rash to disappear after changing to a gluten-free diet. Your GP may therefore recommend the medication dapsone, usually taken as a tablet, to help clear your rash faster. You may need to take dapsone for up to two years. 

What if I don’t respond to a gluten-free diet?

This is called non-responsive or refractory coeliac disease. One in 140 people with coeliac disease develops refractory coeliac disease. It can be caused by other conditions, including: 

• Bacterial overgrowth in your small intestine
• Difficulty digesting certain sugars ie fructose, which is in honey and fruits, lactose, which is in dairy products, and sucrose (table sugar)
• Irritable bowel syndrome
• Microscopic colitis
• Poor pancreas function 

You may need tests to check if your symptoms are due to these other conditions. Your doctor may prescribe steroids to treat your refractory coeliac disease, as well as other drugs, such as azathioprine or budesonide.

Coeliac disease usually only causes complications if it is not diagnosed eg in people with mild cases or if it is diagnosed but you continue to eat gluten. 

Long-term complications include: 

• Malabsorption that causes: 
• Iron deficiency anaemia 
• Osteoporosis
• Vitamin B12 and folate deficiency anaemia 
• Malnutrition that prevents your body from working properly — this can cause: 
• Confusion
• Difficulty staying warm
• Dizziness
• Fatigue
• Muscles wasting
• Lactose intolerance — when your body can't digest milk sugar (lactose), which is found in dairy products; it is treated by avoiding dairy products; lactose intolerance doesn't damage your gastrointestinal system but can cause symptoms including:
• Abdominal discomfort
• Bloating
• Diarrhoea 

Less common complications

• Certain types of cancer, including bowel cancer and intestinal lymphoma — the risk of bowel cancer is four times greater if you have coeliac disease
• Coronary artery disease — risk is doubled if you have coeliac disease 
• Gallbladder malfunction
• Infertility and miscarriage — poor absorption of calcium and vitamin D can affect your reproductive system
• Myopathy
• Neurological problems — this includes
• Ataxia 
• Dementia 
• Epilepsy
• Migraines
• Neuropathy 
• Multifocal leukoencephalopathy

If you are a woman with coeliac disease, you may also have problems that affect your pregnancy eg your baby having a low birth weight.

Before you see your GP, make a list of:

• Any medications, supplements or vitamins you are taking
• Questions you want to ask
• Your symptoms 

Questions you may want to ask include:

• What is the most likely cause of my symptoms?
• Is my condition temporary or long term?
• What tests will I need?
• What treatments can help?
• Do I need to follow a gluten-free diet?

During your appointment, your GP may ask you questions about your symptoms, such as: 

• How bad are your symptoms?
• Do your symptoms come and go or are they constant? 
• Does anything make your symptoms better or worse? 
• Do you take any medications or painkillers and if yes, what? 
• Do you have anaemia or osteoporosis?

Getting a diagnosis of coeliac disease and then having to make lifestyle changes can feel overwhelming. Local coeliac disease support groups can help. You can check Coeliac UK for information.