Coeliac disease living in children

Overview

Coeliac disease (pronounced SEE-lee-ak) is a long-term health condition where the body’s immune system reacts to gluten – a protein found in wheat, barley, and rye. Eating even tiny amounts of gluten can damage the lining of the small intestine and stop nutrients from being absorbed properly. It is not a food allergy or intolerance; it is an autoimmune disease.

Coeliac disease affects about 1 in 100 people worldwide, but many cases are not diagnosed. It is more common in people of European descent, but can affect any ethnic group.

Coeliac disease can affect anyone, including children. It often runs in families. Children may be diagnosed after symptoms like poor growth, tummy pain, or tiredness, or sometimes after a family member is diagnosed.

Symptoms

Common symptoms

• Diarrhoea or constipation
• Bloating and wind
• Tummy pain or discomfort
• Feeling very tired (fatigue)
• Unexplained weight loss

Symptoms in children

• Slow growth or short stature
• Delayed puberty
• Anaemia (low iron levels causing pale skin and tiredness)
• Irritability or mood changes
• Poor appetite or weight gain issues
• Dental enamel defects (pitting or discolouration of teeth)

Symptoms in older adults

• Chronic fatigue
• Bone or joint pain
• Osteoporosis (weakened bones)
• Numbness or tingling in hands and feet
• Unexplained infertility or recurrent miscarriages

Causes

Main causes

• Coeliac disease is an autoimmune condition where the immune system mistakes gluten as a threat and attacks the lining of the small intestine.
• It is triggered by eating gluten – a protein in wheat, barley, and rye.
• It usually develops in people who have a genetic risk (specific genes called HLA-DQ2 and HLA-DQ8), but not everyone with the genes gets the disease.

Risk factors

• Family history of coeliac disease or other autoimmune conditions (Type 1 diabetes, thyroid disease, Addison’s disease).
• Having certain genes (HLA-DQ2 or HLA-DQ8).
• Having another autoimmune condition or a condition like Down syndrome or Turner syndrome.

When to see a doctor

See a doctor urgently if:

• If your child has severe tummy pain, vomiting blood, or signs of dehydration (dry mouth, no urine for 8 hours, sunken eyes) – take them to the nearest emergency department or call your local emergency number.

Book a routine appointment if:

• If your child has ongoing tummy troubles, slow growth, tiredness, or other symptoms that worry you – make an appointment with your GP or paediatrician.
• Also see your doctor if you think your child may have coeliac disease due to a family history.

Diagnosis

Coeliac disease is diagnosed with a blood test first, then a biopsy of the small intestine to confirm. It is important to keep eating gluten (a normal amount) before testing, otherwise the tests may be inaccurate.

Tests that may be done

• Blood test: checks for antibodies (proteins) that the immune system makes when gluten is eaten.
• If blood test is positive, a referral to a specialist (gastroenterologist) is made for a small bowel biopsy – a procedure where a thin tube with a camera is passed through the mouth to take tiny samples from the lining of the intestine.

What to expect at your appointment

The blood test is simple, like any blood draw. For the biopsy, your child will be given a sedative or anaesthetic so they feel no pain. The procedure takes about 15-30 minutes, and most children go home the same day. Your doctor will explain how to prepare, including continuing to eat gluten until the diagnosis is confirmed.

Treatment

The only treatment for coeliac disease is a strict, lifelong gluten-free diet. This means avoiding all foods and drinks that contain wheat, barley, rye, and often oats (unless certified gluten-free). When gluten is removed from the diet, the intestine heals and symptoms usually improve within weeks to months.

Self-care at home

• Learn to read food labels carefully – look for ‘gluten-free’ labels or check ingredients for wheat, barley, rye, malt, and oats.
• Avoid cross-contamination: use separate toasters, chopping boards, and utensils for gluten-free foods at home.
• Educate your child about which foods are safe and how to ask for gluten-free options at school, parties, and restaurants.
• Keep a food diary to track symptoms and identify hidden sources of gluten.

Medical treatments

Your healthcare team may recommend supplements such as iron, calcium, vitamin D, and B vitamins if your child is deficient. Regular monitoring with blood tests checks for antibody levels and nutritional status. In some cases, a hospital dietitian can provide personalised advice. Medications to manage symptoms like constipation or diarrhoea may be suggested, but the main treatment is diet. Always consult your doctor before giving any over-the-counter medicines.

When is surgery considered?

Surgery is not a treatment for coeliac disease. It may be needed for rare complications, such as a perforated bowel or lymphoma, but this is very uncommon in children.

Living with this condition

Living with coeliac disease means being careful about everything your child eats and drinks. But with planning, it becomes second nature. Your child can still enjoy a full, active life – school, holidays, parties, and sports – as long as they stick to a gluten-free diet. Many children manage their condition well with family support.

Lifestyle tips

• Plan ahead for meals outside the home – check restaurant menus, pack gluten-free snacks for trips.
• Work with your child’s school to ensure safe lunches and snacks are available, and that staff understand the condition.
• Celebrate gluten-free alternatives – many delicious foods are naturally gluten-free (rice, potatoes, corn, quinoa, fruits, vegetables, meat, fish, eggs, dairy).
• Join a support group to share tips and experiences with other families.

Diet and exercise

A gluten-free diet can be balanced and healthy. Focus on naturally gluten-free foods and include plenty of fibre from fruits, vegetables, and gluten-free grains. Exercise is encouraged – no restrictions. Your child can participate in all physical activities, including competitive sports.

Mental health and emotional wellbeing

A diagnosis can feel overwhelming for a child and family. Children may feel different from their peers, especially during social events involving food. Some may feel anxious or depressed. It helps to talk openly with your child, involve them in food choices, and remind them that diet keeps them healthy. Professional support from a psychologist or counsellor can be beneficial if needed.

Prevention

There is currently no known way to prevent coeliac disease. For children at high risk (e.g., with a family history), some studies have looked at early gluten introduction, but no clear prevention strategy has been proven. The best approach is early diagnosis and management.

Screening programmes

Routine screening for coeliac disease is not recommended for all children, but it may be offered to those with symptoms or at high risk (e.g., Type 1 diabetes, Down syndrome, or a first-degree relative with coeliac disease). Ask your doctor about testing if you are concerned.

Complications

If left untreated

• Poor growth and delayed puberty in children
• Iron-deficiency anaemia and other nutritional deficiencies
• Weakened bones (osteoporosis) due to poor calcium absorption
• Dental enamel defects
• Infertility or recurrent miscarriages in later life
• Increased risk of intestinal lymphoma (a rare but serious cancer)

Long-term outlook

With a strict gluten-free diet, the outlook for children with coeliac disease is excellent. Symptoms usually improve within weeks, and the intestine heals completely over time. Children can grow, develop, and live a normal, healthy life. The key is sticking to the diet every day. With good management, complications are rare.

Find support

International organisations

• Coeliac UK ↗
• Celiac Disease Foundation ↗

Local organisations

• Coeliac UK ↗ · United Kingdom
• Beyond Celiac ↗ · United States

Helplines

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