Coeliac disease is an autoimmune disease which means the body’s immune system attacks its own tissues when gluten is consumed. The immune system mistakes the substances that make up gluten for something harmful. As a result, antibodies are released, which leads to inflammation and the intestine being unable to absorb nutrients from food. It’s important to remember that coeliac disease is not an allergy or food intolerance. Gluten is found in wheat, rye and barley, and some people are also sensitive to oats.
In the UK, coeliac disease affects one in 100 children, and most don’t get diagnosed until later in life.
What are the symptoms of coeliac disease?
Symptoms include diarrhoea, faltering growth in children or a change in growth pattern, irritability and a bloated stomach. In undiagnosed and untreated coeliac disease, there is a greater risk of complications, including impaired weight gain and growth problems, delayed puberty, iron deficiency anaemia and osteoporosis.
Further symptoms can include nausea, wind, constipation, tiredness, mouth ulcers and sudden or unexpected weight loss. Not everyone experiences symptoms though, and many people may not have any symptoms at all. Some people who have no symptoms may be diagnosed through screening which involves having a blood test to detect the antibodies produced whilst eating gluten. 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?
The symptoms of gluten intolerance may be similar to those experienced by people with coeliac disease. However, it is not clear how the immune system might be involved as no antibodies are produced. Nor does there appear to be damage to the lining of the gut.
What should parents do?
Regardless of your child’s age, if you think they have coeliac disease, it is essential not to remove gluten from their diet until all tests have been carried out as this can interfere with the diagnosis. Book an appointment to see your GP – they will take blood to check for antibodies which can indicate coeliac disease. If the blood test is positive, your GP will then refer your child to a gastroenterologist for further tests which may include a gut biopsy. There is also the possibility of having a negative test result and still being coeliac, so if there is clinical suspicion of coeliac disease, they will also refer.
What are the next steps after diagnosis?
Being open and honest is key. If your child is diagnosed, the only treatment is a gluten-free diet. This is a diet for life which can be hard, especially as a child. While they will need to eat differently from their friends, siblings and family, there are lots of foods that they can continue to eat.
It is important to see a dietitian on diagnosis – a gluten-free diet is more than avoiding wheat, rye, barley and sometimes oats. It’s about understanding the ingredients that can contain gluten, becoming skilled at reading labels, being knowledgeable about preventing cross-contamination, and ensuring your child’s diet is healthy and balanced in order to facilitate their growth and development.
It is very likely that once they start following a gluten-free diet, they will start to feel much better, have more energy and not need to go to the bathroom so much. This should help them stick to the diet initially.
Children may be worried about what their friends will think and what they should tell them. Encourage them to be open and honest as there is nothing to hide – saying they can’t eat bread, pasta or other foods because it hurts their tummy and makes them feel unwell it always a good start.
Once they have special types of these foods (i.e. gluten-free), they’re safe to eat. Things may be more difficult to manage as children grow older and make their own food choices. It is not unusual for adolescents to start eating gluten, especially if they don’t have any side effects.
How to live with coeliac disease at home
Adjusting to a diagnosis of coeliac disease for a family is challenging, but it can be even harder on children, especially if they are old enough to take some responsibility for their diet.
Learning the diet, making good choices, reading labels, going out to eat and worrying about what your friends think isn’t easy. Children spend a lot of their time at school, so parents or carers will need to make sure their gluten-free needs are met. Inform teachers, the cafeteria staff and coaches to ensure a safe, gluten-free environment wherever they are. You may need a doctor’s letter to prove this is medically necessary.
Joining a support group or charity such as Coeliac UK will help you to learn the many challenges of a gluten-free diet. Parents, carers and children can access dedicated information packs for parents, carers and schools and also a helpline available to anyone that dispenses dietary advice. If you plan to eat out, it’s always a good idea to call ahead and check the menu online for suitable options.
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 well with soap and water, use clean oil or a separate fryer for frying gluten-free foods, and use different butter knives to prevent breadcrumbs from getting into condiments.
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Dr Frankie Phillips is a registered dietitian and public health nutritionist specialising in infant and toddler nutrition with over 20 years’ experience.
This article was published on 26 September 2019 by registered dietitian Frankie Phillips. It was reviewed on 02 October 2019 by Coeliac UK.
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