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About coeliac disease

Coeliac disease is a common autoimmune condition that occurs when the immune system in the intestine reacts to gluten, a protein found in wheat, barley, and rye. This reaction causes chronic inflammation, leading to various symptoms and long-term health challenges if left untreated.

What is Gluten?

Gluten is a protein found in foods and drinks containing wheat, barley, and rye. It is present in:

Most types of bread
Pasta
Cakes, biscuits, and crackers
Many breakfast cereals
Pastry
Certain sauces and ready meals
Most beers and lagers
Certain fruit squashes

Prevalence of Coeliac Disease

It affects 1 in every 100 people.
However, only about one-third of cases are ever diagnosed.
It can be diagnosed at any age, with twice as many reported cases in women as in men.

Symptoms of Coeliac Disease

Coeliac disease can cause a range of symptoms, both in the digestive system and throughout the body. Common symptoms include:

Bloating, gas, and abdominal pain
Diarrhoea or constipation
Weight loss
Fatigue
Skin rashes
Joint pain
Anaemia and nutrient deficiencies
Delayed growth in children

Symptoms may develop at any age but are often diagnosed between the ages of 40 and 60 years.

Causes of Coeliac Disease

While the exact cause of coeliac disease is not fully understood, it is more common in people who have:

A family history of coeliac disease
Other autoimmune conditions, such as type 1 diabetes or thyroid disease

Diagnosis

Diagnosis typically involves two steps:

Blood Test: Most people with coeliac disease have specific antibodies in their blood.
Biopsy: If necessary, a biopsy of the small intestine may be performed to confirm the diagnosis.

Treatment

Coeliac disease can be managed effectively through a strict gluten-free diet. This involves eliminating all sources of gluten, which can significantly reduce symptoms, promote healing in the intestines, and improve overall quality of life.

Complications

Untreated coeliac disease can increase the risk of conditions such as:

Osteoporosis (bone thinning)
Certain types of cancer, such as intestinal lymphoma
Nutrient deficiencies

Living with Coeliac Disease

Living with coeliac disease can be challenging, but with the right support, a gluten-free diet, and access to information, it can be well-managed. Many people with coeliac disease find that adopting a gluten-free lifestyle improves their quality of life and helps prevent complications.

Symptoms of coeliac disease

Symptoms of coeliac disease can differ widely among individuals, ranging from mild to severe, and may even be absent altogether in some cases. This variability in symptoms can often lead to misdiagnoses or confusion with other conditions, such as:

Irritable bowel syndrome (IBS)
Wheat intolerance
Stress
Normal aging processes

Common Symptoms of Coeliac Disease:

Digestive issues: This can include severe diarrhoea, excessive gas, and/or constipation.
Persistent gastrointestinal symptoms: Such as unexplained nausea and vomiting.
Abdominal pain and bloating: Recurrent episodes of stomach pain, cramping, or discomfort.
Nutritional deficiencies: Including iron, vitamin B12, or folic acid deficiencies, which can lead to anaemia.
Chronic fatigue: A constant feeling of tiredness and exhaustion.
Sudden or unexpected weight loss: Not all individuals experience this, but it can be a symptom.
Mouth ulcers: Painful sores or irritation in the mouth.
Skin rash (dermatitis herpetiformis): A blistering skin condition specifically associated with coeliac disease.
Mood disturbances: Such as depression or significant emotional changes.
Reproductive health issues: Including repeated miscarriages.
Neurological problems: Such as ataxia (issues with coordination and balance) and peripheral neuropathy (numbness or tingling in the hands and feet).

What To Do If You Suspect Coeliac Disease:

If you experience any of these symptoms, it’s important to speak to your GP. Continue consuming gluten as part of your diet until you’ve been properly diagnosed to ensure accurate testing results.

You can also take an online assessment through Coeliac UK for a preliminary evaluation.

Symptoms in Children:

Children with coeliac disease may not grow at the expected rate and may experience delayed puberty, in addition to other symptoms.

Causes of coeliac disease

The exact cause of coeliac disease remains unclear. However, it is believed to result from a combination of genetic predisposition and environmental factors that trigger the immune system’s abnormal response to gluten.

Role of Genetics

Coeliac disease has a strong genetic component and often runs in families. If you have a close relative, such as a parent or sibling, with the condition, your risk of developing it is significantly higher compared to the general population.

Increased risk for relatives: There is an approximately 10% chance of developing coeliac disease if you have a close family member with the condition, compared to about 1% for individuals without a family history.
Identical twins: If one twin has coeliac disease, there is an 85% chance the other twin will also develop the condition.

Environmental and Immune Triggers

While the presence of certain genes increases the risk of developing coeliac disease, environmental triggers play a role in activating the condition. Some factors that may influence the development include:

Exposure to gluten: The immune system’s reaction is triggered when gluten is ingested. Gluten is a protein found in wheat, barley, and rye.
Gut infections and microbiome changes: Some infections or disruptions in gut health may increase the risk of developing coeliac disease.
Stress, illness, or pregnancy: In some cases, stressful life events, other illnesses, or hormonal changes may trigger the onset of coeliac symptoms.

Coeliac Disease and Other Conditions

People with certain medical conditions have a higher risk of developing coeliac disease, including:

Type 1 diabetes
Autoimmune thyroid disease
Down’s syndrome

Importance of Monitoring and Testing

If you have a family history of coeliac disease or any of the associated medical conditions and experience symptoms, it is essential to consult with your GP. Early diagnosis and management through a gluten-free diet can help reduce symptoms and prevent complications.

Diagnosing Coeliac Disease

Coeliac disease can be diagnosed at any age, affecting both children and adults, but delayed diagnosis is common, with an average of 13 years between symptom onset and diagnosis. The diagnostic process generally involves blood tests and, if necessary, a biopsy.

Blood Tests

Most people with coeliac disease produce specific antibodies that can be detected in their blood. Testing for these antibodies is often the first step in diagnosis.

Who Should Have a Blood Test?

A blood test for coeliac disease should be offered if you have any of the following:

Type 1 diabetes
Autoimmune thyroid disease
Dermatitis herpetiformis (an itchy skin rash linked to coeliac disease)
Irritable bowel syndrome (IBS)
Unexplained anaemia
Frequent digestive symptoms: such as diarrhoea, abdominal pain, nausea, vomiting, or sudden weight loss
Family history: close relatives (parents, siblings, or children) with coeliac disease

Other possible indicators for a blood test include:

Persistent tiredness
A child not growing at the expected rate or reaching puberty late
Symptoms such as mouth ulcers, bone problems, or persistent constipation

Note: Blood tests for coeliac disease are not recommended for infants who have not yet started eating gluten-containing foods.

Preparing for a Blood Test

Before your blood test, it is essential to continue eating foods that contain gluten (more than one meal per day) for at least six weeks. This ensures that the test can accurately detect antibodies if they are present.

The Blood Test Procedure

A simple blood sample is taken and tested for antibodies commonly seen in coeliac disease. The test is around 95% accurate in diagnosing the condition.

Positive Result: If antibodies are present, further tests will be needed to confirm the diagnosis, and you will be referred to a coeliac specialist.
Negative Result: In some cases, coeliac disease may still be present even if no antibodies are detected. If symptoms persist, a biopsy may be necessary.

Biopsy

If a blood test indicates possible coeliac disease, a biopsy can confirm the diagnosis.

What to Expect in a Biopsy

A thin, flexible tube with a light (endoscope) is passed through your mouth or nose down to the small intestine.
The procedure is often performed with a local anaesthetic or sedative to help you relax.
The endoscopist will use a tiny tool to collect a sample of tissue from the small intestine for examination under a microscope.

Children under 16: The endoscopy is typically performed under anaesthetic.

Diet Before and After Testing

You must continue eating gluten-containing foods until all tests are complete. Only after a confirmed diagnosis should you begin a gluten-free diet. If you have already adopted a gluten-free diet but require testing, your GP should refer you to a specialist for further guidance.

Additional Testing After Diagnosis

Further Blood Tests: You may have additional tests to assess levels of iron, vitamins, and minerals to check for deficiencies, such as anaemia.
DEXA Scan (Adults Only): Coeliac disease can cause weakened bones (osteoporosis) due to poor nutrient absorption. A DEXA scan measures bone density to assess this risk.

Over-the-Counter Tests

While you can buy tests for coeliac disease at pharmacies, these are not considered fully reliable. Regardless of the result, a formal diagnosis still requires a blood test and biopsy, so it’s essential to discuss any results with your GP.

For more detailed guidance, consult:

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

Treating Coeliac Disease

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

How a Gluten-Free Diet Helps

Eliminating gluten from your diet prevents further damage to the lining of the intestines, reducing symptoms and allowing the gut to heal. Adopting a gluten-free lifestyle not only alleviates symptoms but also helps prevent potential complications in the future, such as malnutrition, osteoporosis, and other related conditions.

Consequences of Continuing to Eat Gluten

Continuing to consume gluten despite a diagnosis of coeliac disease can result in the return of symptoms, increased intestinal damage, and a greater risk of severe long-term health issues. Therefore, strict avoidance of gluten is essential for managing the condition effectively.

Gluten-Free Food on Prescription

For individuals with a confirmed diagnosis of coeliac disease or dermatitis herpetiformis, gluten-free foods may be available on prescription through your GP or via the Scottish Gluten-free Food Service (if applicable).

How to Register with the Scottish Gluten-free Food Service: [Link/Instructions for registration].

How Long Until Symptoms Improve?

While some people may notice an improvement in symptoms within a few weeks of beginning a gluten-free diet, it can take up to two years for the digestive system to fully heal.

Dietary Advice and Support

Following a diagnosis, you will receive support and guidance from a dietitian to help adjust to a gluten-free lifestyle.

What a Dietitian Can Help With

Balanced Diet: Ensuring you get all essential nutrients while maintaining a gluten-free diet.
Dietary Adjustments: Tailored advice on transitioning to a gluten-free diet.
Food Guidance: Providing information on gluten-free alternatives and food safety, including shopping, preparing, cooking, and storing gluten-free foods.
Prescription Information: Guidance on accessing gluten-free foods through prescriptions and services like the Scottish Gluten-free Food Service.
Support Resources: Information about local and national coeliac support groups for additional assistance.

Dietary Supplements

In addition to a gluten-free diet, your GP or dietitian may recommend vitamin and mineral supplements during the first six months after diagnosis. This helps ensure you receive all necessary nutrients as your digestive system heals. Supplements may also correct any deficiencies caused by previous malabsorption, such as iron-deficiency anaemia.

Special Considerations for Babies

If you have coeliac disease, you should wait until your baby is at least six months old before introducing gluten-containing foods. Start slowly, monitor carefully, and consult with healthcare professionals.

Breastfeeding and Infant Formula: Breast milk and infant formula are naturally gluten-free.

Vaccinations

People with coeliac disease are advised to get vaccinations for:

Pneumococcus (to protect against infections like pneumonia).
Annual Flu Vaccination. Discuss with your GP or specialist to ensure you are appropriately vaccinated.

Annual Health Checks

Once you start treatment, you will need an annual check-up to monitor your condition. This check-up, conducted by your GP, dietitian, or pharmacist, will cover:

Your Health: Assessment of your health in relation to coeliac disease.
Diet Management: Discussion on managing your gluten-free diet.
Concerns: Addressing any questions or challenges you face.

Living with coeliac disease can be challenging, but with the right support, information, and commitment to a gluten-free lifestyle, it is entirely manageable.

Complications of Coeliac Disease

Complications from coeliac disease typically affect those who continue to consume gluten or experience delayed diagnosis. Here’s a breakdown of the potential complications:

Lactose Intolerance

People with coeliac disease may also develop lactose intolerance due to damage to the small intestine, which results in reduced levels of lactase, the enzyme that digests lactose found in dairy products. The good news is that lactose intolerance is often temporary and may resolve when the intestine heals after adopting a gluten-free diet.

Nutritional Deficiencies

Severe symptoms of coeliac disease can lead to malnutrition, though this is relatively rare. More common is malabsorption, where the body struggles to absorb nutrients properly. This can lead to:

Anaemia: Caused by insufficient iron absorption.
Osteoporosis: Due to insufficient absorption of calcium and vitamin D, which are crucial for bone health.

Osteoporosis

People with coeliac disease have a higher risk of developing osteoporosis, a condition that makes bones brittle and prone to fractures. This occurs because the damaged gut may struggle to absorb essential bone-building nutrients, like calcium and vitamin D. To mitigate this risk, those with coeliac disease should ensure adequate calcium intake and take vitamin D supplements as recommended by a healthcare provider.

Cancer Risk

Untreated or undiagnosed coeliac disease may increase the risk of certain cancers, including lymphoma and some types of bowel cancer. However, these risks are relatively rare and significantly reduced when following a strict gluten-free diet.

Less Common Complications

Low Birth Weight in Babies: Pregnant women with untreated coeliac disease may have an increased risk of delivering babies with low birth weight.
Hyposplenia: Rarely, people with coeliac disease may develop hyposplenia, a condition in which the spleen becomes less effective at filtering blood and fighting infections.

Managing and Preventing Complications

Strictly adhering to a gluten-free diet is key to reducing the risk of complications. Ensuring proper nutritional intake, supplementation of necessary vitamins and minerals, and regular check-ups with healthcare professionals can significantly help in managing coeliac disease and maintaining overall health.