Coeliac disease in children
If you suspect your child has coeliac disease, or are looking for ways to live with a diagnosis, registered dietitian Frankie Phillips offers advice
What is coeliac disease?
Coeliac disease is an autoimmune condition which means the body’s immune system attacks its own tissues when gluten, which is found in grains like wheat, rye and barley, is eaten. The immune system mistakes the substances that make up gluten for something harmful. As a result, antibodies are released which trigger inflammation and go on to damage to the lining of the small intestine, leaving it unable to absorb nutrients from food.
It’s important to appreciate that coeliac disease is not an allergy or a food intolerance and you don’t ‘grow out of it’. In the UK, the condition affects one in 100 children, and most don’t get diagnosed until later in life.
What are the symptoms of coeliac disease?
• Diarrhoea, constipation, wind and bloating as well as stomach cramps
• changes in growth pattern
• unexpected weight loss
• mouth ulcers
Coeliac disease is difficult to diagnose because not everyone experiences the same symptoms. Some people have no symptoms at all but may be diagnosed through screening which involves having a blood test to detect the relevant antibodies.
What is the risk of having coeliac disease and not realising it?
If undiagnosed and untreated, there is a risk of complications, including impaired weight gain, delayed puberty, iron deficiency anaemia and osteoporosis.
Is there a family connection?
The condition often, but not always, runs in families. Certain genes are required to develop coeliac disease so screening is recommended for first degree relatives (parents, siblings and children) of people diagnosed with coeliac disease.
How is it different to gluten intolerance?
Although the symptoms may be similar, those with gluten intolerance do not experience damage to the gut lining and as a result do not face the same health implications.
What should I, as a parent do, if I suspect my child has coeliac disease?
If you suspect coeliac disease, do not change your child’s diet until all tests have been completed as this can interfere with the diagnosis.
Book an appointment to see your GP – they will take a blood sample to check for antibodies. If the blood test is positive, your GP will then refer your child to a gastroenterologist for further tests and possibly a gut biopsy. You should be aware that there is the possibility that the test comes back negative and still be coeliac, so if there is clinical suspicion of coeliac disease, your GP will continue to refer to a specialist.
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What are the next steps after diagnosis?
Being open and honest is key. If your child is diagnosed, the only treatment is a life-long, gluten-free diet.
Book an appointment with a dietitian because a gluten-free diet is more than simply avoiding wheat, rye, barley, and sometimes oats. It’s about understanding the ingredients that can contain gluten, being skilled at reading labels, appreciating the risk of cross-contamination, whilst ensuring your child’s diet remains healthy, balanced and meets their growth and development needs.
What are the benefits of a gluten-free diet?
Once your child starts following a gluten-free diet, they are likely to feel better, have more energy and not need to go to the bathroom quite so much. This should help motivate them to stick with the diet.
The good news is there are lots of gluten-free products available, including gluten-free bread, pasta and biscuits.
What problems might we face as our child grows up?
You may find it more difficult to manage as your child grows older and starts to make their own food choices. It is not unusual for adolescents to start eating gluten again, especially if they don’t experience symptoms.
How do I adapt my kitchen for a gluten-free diet?
It's important to avoid cross-contamination at home, so it’s a great idea to buy toaster bags or have separate bread boards and a gluten-free toaster. Always remember to wipe down surfaces, clean pots and pans really well and use clean oil or a separate fryer for frying gluten-free foods.
Practical things like using a different butter knife to prevent breadcrumbs from getting into condiments may sound petty but it can make all the difference.
What about eating away from home?
Children spend a lot of their time at school so be sure to inform teachers and cafeteria staff to ensure a safe, gluten-free environment. You may need a doctor’s letter to prove this is medically necessary.
What if we want to eat out as a family?
If you plan to eat out, it’s always a good idea to call the restaurant ahead or check the menu online for suitable options.
What challenges will my child face as they adopt a gluten-free diet?
Your child will need to learn about the diet and how to make sound choices; they’ll need to get into the habit of reading food labels, which is especially important when eating away from home. More than likely they will worry about what their friends think of them – but it’s important they learn how to explain their condition to friends.
What additional resources are available to help my family adapt to a gluten-free diet?
It’s a great idea to join a support group or charity such as Coeliac UK, where parents, carers and children can access dedicated information packs and a useful helpline.
Discover more advice and gluten-free recipes:
Gluten-free kids' recipes
Gluten-free vegetarian recipes
Gluten-free bread recipes
Gluten-free baking recipes
Spotlight on… gluten-free
20 foods you think are gluten-free but aren't
Top 10 tips for a gluten-free diet
This page was last updated on 22 June 2022 by Kerry Torrens.
Kerry Torrens BSc. (Hons) PgCert MBANT is a Registered Nutritionist with a post graduate diploma in Personalised Nutrition & Nutritional Therapy. She is a member of the British Association for Nutrition and Lifestyle Medicine (BANT) and a member of the Guild of Food Writers. Over the last 15 years she has been a contributing author to a number of nutritional and cookery publications including BBC Good Food. Find her on Instagram at @kerry_torrens_nutrition_
Dr Frankie Phillips is a registered dietitian and public health nutritionist specialising in infant and toddler nutrition with over 20 years' experience.
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