Coeliac disease

Coeliac disease is a common autoimmune condition where the immune system in a person’s intestine (gut) reacts when they eat gluten – causing chronic inflammation.

What's gluten?

Gluten is a protein found in wheat, barley and rye.

Gluten is found in food and drink that contains wheat, barley and rye, such as:

• most types of bread
• pasta
• cakes
• biscuits
• many breakfast cereals
• pastry
• certain types of sauces
• some types of ready meals
• most beers and lagers
• certain fruit squashes

How many people have coeliac disease?

Coeliac disease affects 1 person in every 100. Only about 24% of them are ever diagnosed.

Coeliac disease can be diagnosed at any age, and presents in both children and adults.

Reported cases of coeliac disease are twice as high in women than men.

Symptoms

Coeliac disease can cause a wide range of symptoms in the digestive system and rest of the body.

Symptoms can be similar to those in other conditions like irritable bowel syndrome (IBS). Some people may have no symptoms at all.

Symptoms can develop at any age, but coeliac disease is most commonly diagnosed between the ages of 40 and 60 years.

More about the symptoms of coeliac disease or what is coeliac disease?

Causes

Coeliac disease is more common in people with certain conditions and in relatives of people with coeliac disease. It's unknown exactly why people develop the condition.

More about the causes of coeliac disease

Diagnosis

Most people with coeliac disease have antibodies in their blood. The first stage in diagnosis is a simple blood test. The second stage is a biopsy.

More about how coeliac disease is diagnosed

Treatment

Coeliac disease can be effectively treated with a gluten-free diet. By adopting a gluten-free diet and lifestyle, you can self-manage your condition and improve your quality of life.

More about how coeliac disease is treated

Complications

If coeliac disease remains untreated, you're at greater risk of conditions like osteoporosis and cancer in later life.

More about the complications of coeliac disease

Living well with coeliac disease

Living with coeliac disease can be challenging but with the right support and information, it's completely manageable.

Symptoms of coeliac disease vary from person to person and can range from mild to severe.

Sometimes the symptoms of coeliac disease are mistaken for:

• irritable bowel syndrome (IBS)
• wheat intolerance
• stress
• just getting older

Common symptoms

Some common symptoms of coeliac disease include:

• severe diarrhoea, excessive wind and/or constipation
• persistent or unexplained gastrointestinal symptoms, such as nausea and vomiting
• recurrent stomach pain, cramping or bloating
• iron, vitamin B12 or folic acid deficiency
• anaemia
• tiredness
• sudden or unexpected weight loss (but not in all cases)
• mouth ulcers
• skin rash (dermatitis herpetiformis)
• depression
• repeated miscarriages
• neurological (nerve) problems such as ataxia (loss of coordination, poor balance) and peripheral neuropathy (numbness and tingling in the hands and feet)

If you've any of these symptoms, speak to your GP but continue eating gluten as part of your diet until diagnosis is confirmed.

You can also take Coeliac UK's online assessment.

Symptoms in children

Children with coeliac disease might not grow at the expected rate, or be late to reach puberty.

It's not known exactly why people develop coeliac disease or why some have mild symptoms while others have severe symptoms. It could be that a person's genetic make-up and the environment play a part in why this condition develops.

Pre-exisiting conditions

Coeliac disease is more common in people with certain conditions – such as type 1 diabetes or autoimmune thyroid disease – and in close family members (parents or siblings) of people with coeliac disease.

Genetics

Coeliac disease often runs in families. If you've a close relative with the condition – such as a parent or sibling – your chance of developing it is higher.

This risk is approximately 10% for those with a family history, compared with 1% for someone without a close relative with the condition.

If you've an identical twin with coeliac disease, there's an 85% chance you'll also develop the condition.

Coeliac disease can be diagnosed at any age, and presents in both children and adults.

Delayed diagnosis of coeliac disease is common. Research shows the average time it takes to be diagnosed is 13 years.

Blood tests

Most people with coeliac disease have antibodies that show up in their blood. The first stage in diagnosis can be a blood test.

Who'll have a blood test

A blood test should be offered if you've any of the following:

• type 1 diabetes
• autoimmune thyroid disease
• dermatitis herpetiformis
• irritable bowel syndrome (IBS)
• anaemia without an obvious cause
• certain symptoms related to your digestive system – such as frequent diarrhoea, abdominal pain or vomiting, nausea or sudden weight loss
• close relatives (parents or siblings) with coeliac disease

A blood test might also be offered if:

• you feel tired all the time
• a child is not growing as fast as expected
• you've other symptoms or conditions that sometimes occur in people with coeliac disease – such as mouth ulcers, particular types of problems with your bones or liver, Down's syndrome, Turner syndrome or persistent constipation

Blood tests for coeliac disease are not recommended for infants who've not started to eat foods containing gluten.

Before a blood test

Before a blood test is given, it's important that the patient eats gluten-containing foods in more than one meal every day for at least 6 weeks before the test.

What's involved in a blood test?

A blood test for coeliac disease involves taking a blood sample and testing it for antibodies in the blood.

For the test to be successful, a person must have been eating gluten-containing food in more than 1 meal for at least 6 weeks before the test.

Blood tests are 95% accurate at diagnosing coeliac disease.

Positive result

If coeliac disease antibodies are found in your blood, your GP will refer you for a biopsy of your gut.

Negative result

It's sometimes possible to have coeliac disease and not have antibodies in your blood.

If you continue to have coeliac disease-like symptoms, despite having a negative blood test, your GP may still refer you for a biopsy of your gut.

Biopsy

A biopsy can help confirm a diagnosis of coeliac disease.

If you're referred for a biopsy, this will be carried out in hospital and usually by a doctor that specialises in treating conditions of the stomach and intestines called a gastroenterologist.

What's involved in a biopsy?

If you need to have a biopsy, a thin flexible tube with a light called an endoscope will be inserted into your mouth and passed down to your small intestine.

Before the procedure, a local anaesthetic is given to numb the throat and/or a sedative to help you relax.

During the procedure, the doctor will pass a tiny biopsy tool through the endoscope to take samples of the lining of your small intestine. The sample will then be examined under a microscope for signs of coeliac disease.

Diet before and after testing

It's very important that people continue to eat gluten-containing foods every day until a diagnosis has been confirmed.

A biopsy will only show coeliac disease if the person being tested has been eating gluten-containing foods regularly.

Only after coeliac disease is confirmed can the patient start a gluten-free diet.

If you're already on a gluten-free diet and find it hard to reintroduce gluten, your GP should refer you to a specialist and explain to you that you may not be able to get gluten-free foods on prescription if you don't have your coeliac disease confirmed by biopsy.

Want to know more?

• Diet advice when being tested for Coeliac Disease
• NICE guidelines - coeliac disease recognition, assessment and management
• BSG guidelines on the diagnosis and management of adult coeliac disease
• Lynsey's diagnosis story

Tests after diagnosis

If you've been diagnosed with coeliac disease, you may also have other tests to assess how the condition has affected you so far.

Additional blood tests

You may have further blood tests to check levels of iron and other vitamins and minerals in your blood. This will help determine whether the poor absorption of food from your gut caused by the coeliac disease has led to you developing anaemia (a lack of iron in your blood).

Dual energy X-ray (DEXA) scan

In coeliac disease, a lack of nutrients caused by poor absorption can make bones weak and brittle (osteoporosis).

A DEXA scan is a type of very low dose X-ray that measures bone density. This may be required if your GP or consultant thinks that your condition may have started to affect your bones.

Over-the-counter tests

You can now buy over-the-counter tests for coeliac disease at pharmacies. There isn't enough evidence that these tests are reliable.

If you've used one, it's important that you talk to your GP about the result.

Before a diagnosis can be confirmed, you'll still need to have a blood test and biopsy.

The only treatment for confirmed coeliac disease is a lifelong gluten-free diet.

How does a gluten-free diet help?

Following a gluten-free diet helps prevent gluten damaging the lining of the intestines (gut). This will improve or remove the associated symptoms.

A gluten-free diet will also help to prevent the complications associated with coeliac disease later in life.

What if I continue to eat gluten?

If you're diagnosed with coeliac disease and continue to eat foods that contain gluten, your symptoms will return and could cause long-term damage to your health.

Gluten-free food on prescription

If you've a confirmed diagnosis of coeliac disease or dermatitis herpetiformis, you can access gluten-free foods on prescription through your GP or Scottish Gluten-free Food Service.

How to register with the Scottish Gluten-free Food Service​

How long does treatment take to work?

Symptoms should improve considerably within weeks of starting a gluten-free diet. However, it may take up to 2 years for the digestive system to heal completely.

Referral to a dietitian

After a confirmed diagnosis of coeliac disease, you will may be referred to a dietitian for help with adjusting to your new gluten-free diet and lifestyle.

The dietitian will help by:

• making sure the diet is balanced and contains all the nutrients you need
• advising how to adjust your diet and lifestyle to ensure it's gluten-free

The dietitian should provide you with:

• guidance on gluten-free food alternatives
• information on shopping, preparing, cooking and storing gluten-free foods
• information about gluten-free prescriptions and the Scottish Gluten-free Food Service
• details of local and national support groups

More about a dietitian's perspective

Dietary supplements

As well as adopting a gluten-free diet and lifestyle, your GP or dietitian might also recommend that you take vitamin and mineral supplements for at least the first 6 months after diagnosis. This will ensure that the you get all the nutrients you need while your digestive system repairs itself.

Taking supplements can also help correct any deficiencies, such as anaemia (a lack of iron in the blood).

Feeding your baby

If you've coeliac disease, you shouldn't introduce gluten into your baby’s diet before it's 6 months old. Breast milk is naturally gluten-free and all infant milk formulas are too.

Gluten-containing foods should be introduced gradually when a child is around 6 months old, and the situation carefully monitored.

Vaccinations

If you've coeliac disease and are hyposplenic (your spleen doesn't work very well), you should get vaccinations for:

• pneumococcal
• meningitis C
• flu

You should discuss this with your GP or specialist before having any vaccinations.

Annual health checks

After starting treatment, you'll need to have an annual coeliac disease health check to monitor your condition. This will be done by your GP, a dietitian or a pharmacist.

At this health check, they'll ask you:

• about your health in relation to coeliac disease
• how you're managing your gluten-free diet

You'll also be given the chance to discuss any concerns. Living with coeliac disease can be challenging but with the right support and information, it's completely manageable.

More about living well with coeliac disease

Complications of coeliac disease only tend to affect people that continue to eat gluten, or in people that have taken a long time to diagnose.

Possible complications of coeliac disease include:

• osteoporosis
• malnutrition
• lactose intolerance
• cancer

Osteoporosis

Osteoporosis causes the bones to become brittle, weak and fracture more easily. Bones need a wide variety of vitamins and minerals to stay dense and strong.

If you've coeliac disease, you've an increased risk of developing osteoporosis due to the damaged gut failing to absorb key bone nutrients from food. This decreases blood vitamin and mineral levels and the body compensates for this by taking nutrients like calcium from the bones. This weakens your bones and puts you at increased risk of fracture.

It's recommended that individuals with coeliac disease make sure they're eating enough calcium and vitamin D snacks or take vitamin D supplements. 

Want to know more?

• Scottish Government: Vitamin D
• NHS inform: osteoporosis

Malnutrition

Severe symptoms of coeliac disease can lead to malnutrition. However, this is rare.

More common is malabsorption where your body fails to absorb nutrients from the foods you eat. This can lead to anaemia if the body doesn't take in enough iron, and osteoporosis if there's not enough calcium and vitamin D being taken in.

More about malnutrition

Lactose intolerance

If you've coeliac disease, you may also develop lactose intolerance because the body lacks the enzyme to digest milk sugar (lactose) found in dairy products.

Lactose intolerance is only temporary and normally disappears when you follow a gluten-free diet.

More about lactose intolerance

Cancer

Some research has suggested that having undiagnosed or untreated coeliac disease can increase your risk of developing certain types of cancer – such as bowel cancer, lymphoma (cancer of the lymphatic system) and T-cell lymphoma.

Bowel cancer

It's estimated that people with coeliac disease are twice as likely to develop bowel cancer as the general population. This represents a very small increase in risk with only 1 person in every 200 developing bowel cancer in the first 10 years after a diagnosis of coeliac disease.

The risk of developing cancer is thought to be highest during the first year after diagnosis, before dropping to normal as the gluten-free diet starts to take effect.

More about bowel cancer

Less common complications

Less common complications of coeliac disease include low birth weight in newborn babies and in rare cases, hyposplenia. If you have coeliac disease and are hyposplenic, you may want to look into getting certain vaccines to maintain your health.