Coeliac disease living patient overview

Overview

Coeliac disease is a long-term autoimmune condition where the body's immune system attacks the lining of the small bowel when you eat gluten. Gluten is a protein found in wheat, barley, and rye. This damage makes it hard for your body to absorb nutrients from food.

Coeliac disease affects about 1 in 100 people worldwide, but many cases go undiagnosed because symptoms vary widely.

It affects people of all ages, genders, and ethnic backgrounds. It is more common in people with a family history of the condition and in those with other autoimmune conditions like type 1 diabetes or thyroid disease.

Symptoms

Common symptoms

• Diarrhoea or constipation
• Bloating and abdominal pain
• Fatigue and weakness
• Unexplained weight loss
• Anaemia (low iron levels)

Symptoms in children

• Poor growth or delayed puberty
• Chronic diarrhoea or vomiting
• Irritability and mood changes
• Tiredness and lack of energy
• Swollen belly

Symptoms in older adults

• Fatigue and low energy
• Anaemia that does not improve with iron supplements
• Bone or joint pain
• Mouth ulcers
• Skin rash (dermatitis herpetiformis) – itchy, blistering spots

Causes

Main causes

• Coeliac disease is caused by an abnormal immune response to gluten in people who have genetic risk factors (specific HLA genes).
• The immune system attacks the tiny finger-like villi in the small intestine, flattening them and reducing nutrient absorption.

Risk factors

• Having a close family member – parent, sibling, or child – with coeliac disease
• Having another autoimmune disorder such as type 1 diabetes, Hashimoto’s thyroiditis, or rheumatoid arthritis
• Having certain genetic markers (HLA-DQ2 or HLA-DQ8)

When to see a doctor

See a doctor urgently if:

• If you have severe abdominal pain, vomiting, or signs of dehydration

Book a routine appointment if:

• If you have ongoing digestive problems (diarrhoea, bloating, pain), fatigue, or unexplained weight loss
• If a family member has been diagnosed with coeliac disease – even without symptoms
• If you have anaemia that does not improve with treatment

Diagnosis

Coeliac disease is diagnosed through blood tests and a biopsy of the small intestine. It is important to keep eating gluten until all tests are completed, otherwise results may be inaccurate.

Tests that may be done

• Blood test for specific antibodies (tissue transglutaminase, or tTG)
• Upper endoscopy with biopsy – a thin tube with a camera is passed through your mouth to the small intestine to take tiny tissue samples

What to expect at your appointment

The blood test is a simple blood draw. If it is positive, an endoscopy is usually recommended to confirm the diagnosis. The procedure is done under sedation and is not painful. Most results come back within a few weeks.

Treatment

The main treatment for coeliac disease is a strict, lifelong gluten-free diet. This means avoiding all foods and products containing wheat, barley, rye, and sometimes oats that may be contaminated with gluten.

Self-care at home

• Learn to read food labels carefully – look for ‘gluten-free’ labels and avoid hidden sources
• Avoid cross-contamination in your kitchen – use separate utensils, toasters, and cutting boards
• Choose naturally gluten-free foods like fruits, vegetables, meat, fish, eggs, rice, potatoes, and corn
• Work with a registered dietitian to ensure you get enough vitamins and minerals

Medical treatments

For some people, following a gluten-free diet may not fully control symptoms. In such cases, doctors may prescribe medications to reduce inflammation, such as corticosteroids or other immune-suppressing drugs. However, these are not a replacement for diet and are used only when needed. Always discuss treatment options with your healthcare provider.

When is surgery considered?

Surgery is rarely needed for coeliac disease. It may be considered only for very rare complications, such as a type of intestinal lymphoma or severe damage that does not respond to diet. This is a decision made with a specialist team.

Living with this condition

Living with coeliac disease means managing your diet carefully every day. You will become skilled at checking ingredients and asking about food preparation when eating out. Most people find it becomes second nature over time.

Lifestyle tips

• Plan meals and snacks ahead to avoid being caught without safe food
• Carry gluten-free snacks when travelling or visiting others
• Tell friends, family, and colleagues about your needs – they will usually want to help
• Check that any medications, supplements, or cosmetics you use are gluten-free

Diet and exercise

A balanced gluten-free diet is healthy and can include plenty of fruits, vegetables, lean proteins, and dairy. Some people may need extra iron, calcium, or B vitamins – a dietitian can advise. Regular exercise supports overall health and helps manage stress.

Mental health and emotional wellbeing

Adjusting to a gluten-free diet can be stressful, especially at first. You may feel frustrated, isolated, or anxious about eating out. These feelings are normal. Talking to a counsellor or joining a support group can help you cope and connect with others who understand.

Prevention

Coeliac disease cannot be prevented because it is largely determined by genetics. However, prompt diagnosis and treatment with a gluten-free diet can prevent complications. There is no proven way to avoid developing the condition, but research is ongoing.

Vaccines

There is no vaccine for coeliac disease.

Screening programmes

Routine screening of the general population is not recommended. However, people with a close family member diagnosed with coeliac disease, or who have other autoimmune conditions, may be advised to get tested even without symptoms. Discuss with your doctor.

Complications

If left untreated

• Malnutrition – due to poor absorption of nutrients
• Osteoporosis (weak, brittle bones) – from calcium and vitamin D deficiency
• Infertility and pregnancy complications
• Increased risk of intestinal lymphoma (a type of cancer)
• Development of other autoimmune conditions

Long-term outlook

With a strict gluten-free diet, the outlook is excellent. Most people feel much better within weeks, and the small intestine can heal completely. By sticking to the diet and having regular check-ups, people with coeliac disease can live long, healthy lives without major restrictions.

Find support

International organisations

• Coeliac UK ↗

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