Coeliac Disease in children
What is coeliac disease?
Coeliac disease in children means you have a autoimmune disease. You might have already noticed that your child's tummy hurts when they eat something with gluten, or the tummy gets bloated and they feel weak and tired. It’s different for everybody.
Coeliac disease appears to start unnoticed in childhood before going on to affect 1 in 100 adults. However coeliac disease in children is fewer than 1 in 2,500 actually treated for coeliac disease.
The symptoms of coeliac disease in children can vary widely from child to child. Some children can experience more unpleasant coeliac disease symptoms than others, some may only have mild symptoms and non-specific coeliac disease symptoms such as general tiredness etc and some people may not experience any coeliac disease symptoms at all!
Your child may experience some of the symptoms below and if you are a mum or dad with a young baby the below symptoms may occur after weaning onto cereals which contain gluten.
Coeliac disease symptoms in young children include:
• Muscle wasting in the arms and legs
• Bloated tummy
• Failure to gain weight or lose weight after previously growing well
• Stunted growth
By the way, adults can also have coeliac disease. Has the family been tested for coeliac disease?
Coeliac disease symptoms in older children vary as they do in adults. These symptoms may include:
• Diarrhoea, excessive wind and/or constipation
• Nausea and vomiting
• Regular stomach pain, cramping or bloating
• Tiredness and/or headaches
• Weight loss (in some cases)
• Hair loss
Why do people become allergic to gluten?
It is estimated 1 in 100 people have coeliac disease. Your child will have got this as a gene in their body and may mean someone in your family has the same allergy as genes are usually passed on from mum or dad. Find out more about coeliac disease in more detail on our adults coeliac disease page.
How do I get my child tested for coeliac disease?
You will need to go to your GP and discuss your child's symptoms with them. They be sent for a blood test (this could be conducted at your surgery or at a local hospital). This blood test screens for, but does not diagnose, coeliac disease as it can only detect the presence of specific coeliac antibodies. Your doctor will look at the results of your blood test and decide whether you need to go for something called an endoscopy. This is where the doctor at the hospital will use a camera to look inside your child's tummy and see if there is any damage to the intestines.
Make sure your child has been eating gluten for 6 weeks before going to the doctors where they will have a blood test. This is because the gluten is causing a reaction in the body which produces antibodies. If somebody is already on a gluten free diet then the body won't be producing these antibodies and they will test negative even though they may have coeliac disease, because they are already following the diet.
Here is a chart to help explain more easily the steps to getting diagnosed with coeliac disease to your child:
We will have a visit to your family doctor (GP) to talk about you feeling poorly. Our doctor will ask for lots of information like how long have they felt unwell and ask you to describe symptoms.
To try and find out why you feel poorly, your doctor might perform a blood test. Don’t worry, this won’t hurt or take too long.
Your doctor will look at the results of your blood test and decide whether you need to go to the hospital for something called an endoscopy. This is where the doctor at the hospital will use a special little camera to look inside your tummy and see what the matter is. The doctors will take some cells from your tummy and look at them under a microscope. Don’t worry –the cells are so tiny the tummy won’t even notice that they are gone!
The doctors will be able to tell then if you have something that has a special name called coeliac disease. This is where something called gluten is upsetting you and making you ill.
If gluten is making you ill we will meet a dietitian who will tell you all about the foods that don't contain gluten and which ones you shouldn’t eat. ↓
From now on you must make sure that your food is gluten free and ask anyone who gives you food if it is.
You will be able to get gluten free food such as fresh bread, cheese crackers, pizza and pasta from your pharmacist. They have a special name called gluten free. Your doctor will ask you for favourite foods and set up a prescription (like mummy or grandma has). We will give this to the pharmacist who wears a white coat and orders this in to pick up a few days later. Then every month we can pick up our new delicious foods from our local pharmacy.
Explaining coeliac disease to your young child
Your child’s GP, consultant or dietitian should be able to explain your child’s diagnosis to them but it is likely that they will come to you for more information. Of course, your child’s capability to comprehend their condition will depend on their age and understanding.
Perhaps the best way of explaining coeliac disease to a young child is in a simple way, using words and phrases that they are familiar with. Try to emphasise the positive side of their diagnosis – how much better they will feel when they are not eating gluten anymore and the fact that they will be able to try lots of new gluten free versions of their favourite foods. To help you, we have produced a leaflet suitable for children that describes what coeliac disease in children is and how it can be treated. Here is our coeliac children’s leaflet.
Below are some suggestions for how you could explain coeliac disease to a young child:
• Having coeliac disease means that part of your tummy (called the small intestine) doesn’t like gluten. Gluten is in wheat, rye and barley, these grains are used to make some of the foods we eat, like bread, pasta, cakes and biscuits.
• Eating gluten is what makes you feel poorly so not eating gluten anymore will make you feel much better.
• We can buy special gluten free foods, so you can still eat your favourites, like bread, pizza and pasta! There are lots of foods that are naturally gluten free, like fruit and vegetables, rice, meat, milk, and cheese!
• Gluten is also found in some other foods like sausages, chocolate, sauces and soups – so we always need to check the labels when we go shopping. We can start next week.
• A dietitian will tell us all about a gluten free diet and what you can eat.
• We will need to see the doctor and dietitian once a year to make sure your tummy is still okay. As long we stick to a gluten free diet, you won’t get poorly again!
Try to think of a short sentence that your child is able to remember if he/she is asked about their condition by friends or teachers, perhaps “I can’t eat gluten. I can’t eat anything made with wheat, barley or rye – like bread and cakes. Please can you check the label says the food is gluten free or suitable for coeliacs!”
Has all the family been tested for coeliac disease?
Coeliac disease is a genetic disease which means some people in the family may have the same gluten allergy. Therefore it is advised the family also get tested for coeliac disease if your child has been diagnosed with coeliac disease, as symptoms may not always be the same and some coeliacs may not even get symptoms. Remember make sure that whoever is to be tested must have been eating gluten for 6 weeks before going to the doctors where they will have a blood test!