Coeliac disease living in infants

Overview

Coeliac disease is a lifelong condition where the body's immune system reacts to gluten, a protein found in wheat, barley, and rye. This reaction damages the lining of the small intestine and makes it hard for the body to absorb nutrients. In infants, this can affect growth and development.

Coeliac disease affects about 1 in 100 people worldwide. It is one of the most common lifelong conditions.

Coeliac disease can start at any age after gluten is introduced into the diet. In infants, it often appears between 6 and 24 months old, after they begin eating cereals or other foods with gluten.

Symptoms

Common symptoms

• Chronic diarrhoea or loose, pale, foul-smelling stools
• Bloating and gas
• Abdominal pain or discomfort
• Irritability and fatigue
• Poor weight gain or weight loss

Symptoms in children

• Delayed growth or short stature
• Delayed puberty
• Dental enamel defects on permanent teeth
• Anaemia (low iron)
• Skin rash called dermatitis herpetiformis (itchy, blistering)

Symptoms in older adults

• Unexplained weight loss
• Fatigue and weakness
• Bone or joint pain
• Mouth ulcers
• Numbness or tingling in hands and feet

Causes

Main causes

• An abnormal immune reaction to gluten in people who have certain genes (HLA-DQ2 and HLA-DQ8).
• The presence of gluten triggers the immune system to attack the lining of the small intestine.

Risk factors

• Having a close family member (parent, sibling) with coeliac disease.
• Having another autoimmune condition, such as type 1 diabetes or autoimmune thyroid disease.
• Certain genetic syndromes, like Down syndrome or Turner syndrome.

When to see a doctor

See a doctor urgently if:

• If your baby has signs of dehydration, such as fewer wet nappies, dark urine, or dry mouth.
• If your baby is vomiting repeatedly or has severe diarrhoea.
• If your baby is unusually drowsy, irritable, or not feeding well.

Book a routine appointment if:

• If your baby has ongoing digestive symptoms like diarrhoea, bloating, or tummy pain that last more than a few weeks.
• If your baby is not gaining weight or growing as expected.
• If there is a family history of coeliac disease and you are concerned.

Diagnosis

Diagnosis usually starts with a simple blood test to check for certain antibodies. If the blood test is positive, a small sample of the intestine (biopsy) is taken to confirm the damage. It is important that your baby continues to eat gluten until both tests are completed, or the results may be wrong.

Tests that may be done

• Blood test for tissue transglutaminase antibodies (tTG-IgA) and total IgA level.
• Upper endoscopy with biopsy (a thin tube with a camera is passed through the mouth into the small intestine to take tiny tissue samples).
• Genetic testing for HLA-DQ2 and HLA-DQ8 may be used in some cases, but it is not a diagnosis by itself.

What to expect at your appointment

Your baby will be referred to a paediatric gastroenterologist (a children's gut specialist). The blood test is quick; the biopsy is done under sedation or anaesthesia, so your baby will not feel pain. You will be given clear instructions on how to prepare your baby for the tests.

Treatment

The only treatment for coeliac disease is a strict, lifelong gluten-free diet. This means avoiding all foods and products that contain wheat, barley, and rye. For infants, this involves carefully choosing baby foods and breast milk substitutes that are gluten-free.

Self-care at home

• Learn to read food labels carefully for hidden sources of gluten.
• Keep a separate toaster and chopping board for gluten-free foods at home to avoid cross-contamination.
• Plan meals and snacks ahead, especially when travelling or visiting others.
• Communicate with nursery or childcare providers about your baby's dietary needs.

Medical treatments

There are no medications to cure coeliac disease or to allow eating gluten. Your doctor may prescribe vitamin or mineral supplements (such as iron, calcium, vitamin D, or folic acid) if your baby is deficient. Always follow your healthcare provider's advice on supplements and never give any medication without consulting them first.

When is surgery considered?

Surgery is not a treatment for coeliac disease. It may be needed for complications such as a bowel obstruction or intestinal lymphoma (a rare cancer), but this is very uncommon.

Living with this condition

Living with coeliac disease means making gluten-free choices every day. For infants, this starts with gluten-free baby cereals, purees, and foods. As they grow, you will teach them which foods are safe. Most families find it becomes second nature, and with support, their child can enjoy a full and healthy life.

Lifestyle tips

• Always carry safe gluten-free snacks for your baby when you go out.
• Educate family, friends, and babysitters about the importance of avoiding gluten.
• Join a local or online support group to share tips and experiences.
• Keep a food diary to track symptoms and identify any accidental gluten exposures.

Diet and exercise

A gluten-free diet is essential for health. Work with a paediatric dietitian to make sure your baby gets enough nutrients, including fibre, iron, and calcium. Exercise is safe and encouraged – there are no restrictions. Once your child is older, they can participate in all normal activities.

Mental health and emotional wellbeing

Managing a chronic condition can be stressful for both you and your child. You may feel worried about social events or accidental gluten. It’s important to talk about these feelings and seek support. If you or your child feel overwhelmed, talk to your doctor or a counsellor. If you have thoughts of harming yourself or your baby, contact emergency services or a crisis helpline immediately.

Prevention

Currently, there is no proven way to prevent coeliac disease. Some research suggests that breastfeeding and introducing gluten gradually (between 4 and 6 months) while still breastfeeding may lower the risk, but this is not certain. The most important thing is to be aware of symptoms and seek diagnosis early.

Vaccines

There is no vaccine for coeliac disease. All routine childhood vaccinations are safe.

Screening programmes

Routine screening of all infants is not recommended. However, if your baby has a close family member with coeliac disease, your doctor may suggest testing, even if there are no symptoms. This is called case-finding, not mass screening.

Complications

If left untreated

• Poor growth and failure to thrive
• Chronic malnutrition leading to anaemia, weak bones (osteoporosis), and vitamin deficiencies
• Delayed puberty and short stature
• Infertility in later life
• Increased risk of intestinal lymphoma (a rare cancer)

Long-term outlook

With a strict gluten-free diet, most infants with coeliac disease recover fully. Their gut heals, symptoms disappear, and they grow and develop normally. The diet takes some adjustment, but with support from healthcare professionals and family, children can lead a happy, healthy, and active life. Early diagnosis is the key to a good outcome.

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