Coeliac disease

Coeliac disease is more common in people with certain other health conditions, and in close relatives of people who have coeliac disease. Doctors do not know exactly why someone develops it.

More about the causes of coeliac disease

Causes of coeliac disease

No one knows exactly why coeliac disease develops in some people, or why some people get mild symptoms while others get severe ones. A mix of genetics and environmental factors is thought to play a role.

Pre-existing conditions

Coeliac disease is more common in people who already have certain conditions, such as type 1 diabetes, Down syndrome or autoimmune thyroid disease. It is also more common among close family members, meaning parents or siblings, of someone who has coeliac disease.

Genetics

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

This risk is about 10 percent for someone with a family history of the condition, compared with 1 percent for someone with no close relative who has it. If you have a close relative with coeliac disease and you are noticing symptoms yourself, it is worth speaking to your doctor.

If you have an identical twin with coeliac disease, there is an 85 percent chance that you will develop it too.

Diagnosis

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

More about how coeliac disease is diagnosed

Diagnosing coeliac disease

Coeliac disease can be diagnosed at any age, and both children and adults can show symptoms

Delayed diagnosis is common. It can take an average of 13 years to diagnose.

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, siblings or children) 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 taken, it’s important that you eat gluten-containing foods in more than one meal every day for at least 6 weeks before the test.

Remember to eat a normal gluten diet for 6 weeks before any tests. This means eating more than one meal a day that includes gluten-based foods.

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.

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

Blood tests are 95% accurate at diagnosing coeliac disease.

Positive result

If the coeliac antibodies are found in your blood, further investigation will be needed. This’ll be discussed with you.

Your GP will refer you to your local coeliac service for confirmation of the diagnosis. You should remain on a normal diet until all investigations are complete.

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 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. Usually, a biopsy will be done by a gastroenterologist. This is a doctor who specialises in treating conditions of the stomach and intestines.

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 or nose 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 endoscopist 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.

For those under 16 years the endoscopy would be under an anaesthetic.

Diet before and after testing

You should 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 you start a gluten-free diet.

If you’re already on a gluten-free diet and find it hard to eat gluten again, your GP should refer you to a specialist. You may not be able to get gluten-free foods on prescription if you do not have coeliac disease confirmed by a biopsy.

Read further information:

• Diet advice when being tested for Coeliac Disease
• NICE guidelines – coeliac disease recognition, assessment and management
• 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’ll help check for anaemia.

Dual energy X-ray (DEXA) scan (adults only)

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 risk score (FRAX/Qfracture) is high. This will be calculated as part of your assessment.

Over-the-counter tests

You can 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.

Coeliac disease responds well to a gluten-free diet. Once you adopt this diet and adjust your lifestyle around it, you can keep the condition under control and feel much better day to day.

More about how coeliac disease is treated

Treating coeliac disease

Right now, the only treatment for confirmed coeliac disease is following a gluten-free diet for life.

How does a gluten-free diet help?

A gluten-free diet stops gluten from damaging the lining of your intestines (gut), which allows your symptoms to ease or disappear. It also lowers your risk of developing complications later in life.

What if I continue to eat gluten?

If you have been diagnosed with coeliac disease and keep eating foods containing gluten, your symptoms will come back, and over time this can cause lasting damage to your health.

Gluten-free food on prescription

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

How to register with the Scottish Gluten-free Food Service

How long does treatment take to work?

You should notice your symptoms improving within a few weeks of starting a gluten-free diet, though it can take up to 2 years for your digestive system to heal fully.

Dietary advice

Once your diagnosis of coeliac disease is confirmed, a dietitian will see you to help you adjust to your new gluten-free diet and lifestyle.

The dietitian will help by:

• making sure your diet stays balanced and includes all the nutrients you need
• advising you on how to adjust your diet and lifestyle so it stays gluten-free

The dietitian should also give you:

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

More about a dietitian's perspective

Dietary supplements

Alongside a gluten-free diet and lifestyle, your GP or dietitian may also recommend vitamin and mineral supplements for at least the first 6 months after diagnosis. This helps make sure you get all the nutrients you need while your digestive system heals.

Taking supplements can also correct deficiencies, such as anaemia, which is a lack of iron in the blood.

Feeding your baby

If you have coeliac disease, you should not introduce gluten into your baby's diet before they turn 6 months old. Breast milk is naturally gluten-free, and so are all infant milk formulas.

Once your baby is around 6 months old, foods containing gluten can be introduced slowly, with the situation monitored carefully as you go.

If you have coeliac disease, you should get vaccinated against pneumococcus, and get a flu vaccine every year. Talk to your GP or specialist before having any vaccinations.

Annual health checks

Once you've started treatment, you'll need an annual coeliac disease health check to keep track of your condition. Your GP, a dietitian or a pharmacist can do this for you.

At this check, they'll ask about your health as it relates to coeliac disease, and how you're getting on with your gluten-free diet. It's also a chance for you to raise any concerns you have. Living with coeliac disease isn't always easy, but with the right support and information, it's completely manageable.

More about living well with coeliac disease

Complications

If coeliac disease isn’t treated, 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.

Complications of 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:

• lactose intolerance
• nutritional deficiencies
• osteoporosis
• cancer

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. It normally disappears when you follow a gluten-free diet.

More about lactose intolerance

Nutritional deficiencies

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 nutritional deficiencies

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.

If you have coeliac disease, you should make sure you’re eating enough calcium and take vitamin D supplements.

Read further information:

• vitamin D
• osteoporosis

Cancer

Having undiagnosed or untreated coeliac disease can increase your risk of developing lymphoma and some types of bowel cancer but these are rare. Risks are reduced by following a gluten-free diet.

Less common complications

Less common complications of coeliac disease include low birth weight in newborn babies and in rare cases, hyposplenia.

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