A Guide For Parents
This page was created and put together by our 2 incredible volunteers & members Emma Killion and Carol O’ Buachalla. Our parents guide is kindly sponsored by Rosie & Jim.
A diagnosis of coeliac disease can come as quite a shock- even if you know your child has been unwell for quite a while. Starting to manage a gluten-free diet for your child can take a lot of effort so we have put together this information booklet for you. It will answer most of your questions and help guide you as you and your child start on a gluten free life.
The Coeliac Society are here to support you and your child with their journey into gluten free living giving you the tools and tips to make the changes you need. Our guide is aimed at helping you to find your way to a happy and safe gluten-free lifestyle for your child.
Topics & Tips Discussed
- Letting People Know
- Play Dates & Visiting Family and Friends
- Managing Birthday Parties
- Beyond Gluten: Building Healthy Bodies, Healthy Bones
- Using The Food List
- Tests and Check Ups
- Recipes for Parents
Where To Start
Start with your dietitian. Your dietitian will help you to manage a gluten free diet and talk to you about the nutrients that are important for your child. She will also be able to check your child’s height and weight.
Your child should be referred to the dietitian in your local hospital or to your local community dietitian. Check with your GP and Gastroenterologist. You can also find a dietitian at www.sedi.ie. The Coeliac Society has a Dietitian Clinic every week at their office in Dublin. You can book an appointment at www.staging8.coeliac.ie or by calling us on 01 8721471.
Back to School Top Tips
- Make sure the school staff is aware of your child’s diagnosis. The Coeliac Society has a letter which you can give to your child’s teacher explaining the basics of the disease and providing information on avoiding cross contamination. Email firstname.lastname@example.org for a copy to be sent to you.
- Remind your child not to share lunches. Even if foods in their friend’s lunchboxes look similar, the gluten-free status of brands can differ.
- On special occasions such as the last day of term, a teacher may give children treats. Have a chat with your child’s teacher and let him/her know which treats are suitable for your child, ensuring they won’t feel left out.
- Check the gluten-free status of all products in the current Coeliac Society Food List
- Only gluten-free oats should be eaten by people diagnosed as coeliac. It is recommended that those recently diagnosed avoid oats until their antibodies have returned to normal. Oats should also be avoided if tTG antibodies are raised or during a bout of gastroenteritis.
Back To School Letter. Download here.
If you are with your child all the time, then you will know exactly what they are eating. But your child is not going to be with you all the time so you do need to talk to their school, childminder and friends’ parents as well as your own family and friends.
There is a Quick Guide to Coeliac disease available for you to give to family and friends who want to know a little bit about coeliac disease. This is on the website at www.staging8.coeliac.ie.
Informing School/ Crèche/ Montessori.
Do call into your child’s school or crèche and talk to them about coeliac disease and the gluten free diet. People will often tell you that they know what they are doing – and some will – but most people don’t understand about cross contamination and how important that is. There is a letter on the coeliac website that you can bring with you when you talk to your child’s school or crèche. www.staging8.coeliac.ie/live-gluten-free/explaining-coeliac-disease. This can help to explain coeliac disease. You can also contact the Coeliac Society and the Dietitian can call the school or crèche to explain about coeliac disease if that is needed.
Do think about any school events that might involve food – parties, school tours, holiday treats. Then you can think about foods that you need to send to your school for those days.
Remember that Play Doh is not gluten-free – kids need to have gluten-free play dough if they are using it in school, crèche, or playdates.
It is really important that your child is still meeting their friends and going to friends’ houses as well as having friends to their own house. You can’t be sure about what your child will eat at someone else’s house so you do need to talk to the parents or minder about coeliac disease.
- Keep it simple. Most people don’t really understand coeliac disease and don’t want a big lecture.
- Do give them some written information with a few pointers. Do include things like:
- No foods with wheat, rye, barley or oats on the label
- Gluten free foods can pick up gluten if they touch ordinary food, so do keep things separate.
- It’s important to wash your hands between touching ordinary food and gluten free foods – even a tiny bit of gluten can cause a problem!
- Foods that say “gluten-free” on the label are also safe
- Play Doh contains gluten so children with coeliac disease can’t play with it but a gluten free Play Doh can be easily made. Gluten Free Play Doh recipe as follows:
- Ingredients: ½ cup of rice flour, ½ cup of corn starch, ½ cup of salt, 2 teaspoons of cream of tartar, 1 cup of water, 1 cup of cooking oil, food colouring if desired.
- Method: Mix ingredients and cook and stir over a low heat for three minutes or until a ball forms. Leave to cool completely before storing in a resealable plastic bag.
- Do let them know about foods your child CAN have e.g.
- All fruit and vegetables are gluten free and make great snacks.
- Plain yoghurt, cheese and milk are all gluten free.
- Do pack some gluten free food for your child – you can use their party box (see birthday parties below). Think about a gluten free sandwich or crackers or gluten free treats if needed. It can be helpful to include gluten free treats so the other children in the house can try some.
Birthday parties can be tricky – and you don’t want your child to miss out on all the fun. With some tips, you can get organised and help them to have a great time.
- Always bring some gluten free treats to a party for your child. People don’t always understand coeliac disease so it’s best to be prepared.
- Do decorate a Party Box with your child. They can use this to bring their own gluten free treats. It also helps to stop your child’s food from getting mixed up with the other treats at the party.
- Do check with the party organiser what food will be served. This can give you an idea of what to put in your party box. A lot of kids parties will have foods like fairy cakes, sausages, jellies and crisps so see if you can pack gluten free options for your child.
- Do include a special bun or cake that your child can have when it comes time for the birthday cake. Children can be upset that they can’t have a slice of the actual birthday cake but having something special in their party box can help.
- Do ask the host if you can bring gluten free treats to the party for everyone. This can be an expensive option but if it is something you can manage, then your child will get to see
- everyone eating some of the same foods that they are eating. Gluten free crisps, gluten free jellies or gluten free buns can all work. Just make sure your child takes their treats first so there is no risk of cross contamination from other children who have been eating other foods!
Almost 80% of people living in Ireland do not eat enough fibre. Adults need to eat 25-35g of fibre per day. For children, it is their age plus 5. So an 8-year-old child needs 13g of fibre per day.
The chart below tells you how much fibre there is in foods. The best way to make sure your child is getting enough fibre is to try to have fibre at every meal. If you have a fussy eater, try giving them small amounts of foods at a meal and give them time to get used to them. The gluten free diet is a big change for many children and it can sometimes be easier to get going with the fibre at the same time so that it just becomes part of their new way of eating. Eating more fibre will have benefits for the whole family, not just your child.
How much fibre?
|Bowl of gluten free porridge||3g|
|Bowl of gluten free buckwheat muesli||3.5g|
|Bowl of gluten free Cornflakes||2g|
|Bowl of Buckwheat Flakes||2g|
|1 piece of fruit||2-3g|
|1 serving of vegetables (3 dessertspoons)||2-3g|
|1 dessertspoon milled seeds (any kind)||3-4g|
|1 tablespoon sunflower seeds||3g|
|1 baked potato (eaten with the skin)||3g|
|1 bowl gluten free granola (with oats)||5g|
|½ tin of chickpeas||10g|
|½ tin gluten free baked beans||7.5g|
|½ tin kidney beans||10g|
|1 tablespoon dried lentils||1.5g|
|1 serving of brown rice||2g|
|1 serving of white rice||0.5g|
|1 serving of high fibre gluten free pasta||3g|
Top 10 Fibre Tips
- Always have breakfast. Breakfast is a great place to start adding fibre and people who skip breakfast are more likely to be low in fibre compared to breakfast eaters. Go for a high fibre breakfast cereal – look for gluten-free cereals with 3g of fibre per 100g of cereal (or more!). You can also choose higher fibre gluten-free bread or toast.
- Add seeds. All kinds of seeds are high in fibre. Sunflower seeds, sesame seeds, pumpkin seeds and linseeds are all good. You can try them whole or milled. For adults, aim to get 2 tablespoons of seeds everyday. Add them to breakfast cereals, yoghurt, homemade bread or sprinkle over salads. Start with 1-2 teaspoons and work up. For children, 1 tablespoon per day is plenty. Do start slowly with one teaspoon and work up to one tablespoon over 2 weeks.
- Eat more beans. Beans and lentils are very high in fibre, especially soluble fibre. Gluten-free baked beans are a great source of fibre – ½ a tin will give you 7.5g of fibre. Chickpeas, kidney beans and butter beans are also very good – half a tin of these beans will give you about 10g of fibre. Try soups made with beans and lentils, add beans to a salad, add lentils into soups, stews and casseroles. Try to have beans at least 3 or 4 times a week.
- Add vegetables. Vegetables and salad all have fibre – and they also add up to some of your 5-a-day. As a good rule of thumb, salad or vegetables should make up at least 1/3 of your child’s lunch and dinner. Add grapes, cucumber sticks, carrot sticks or any fruit to your child’s lunchbox. Vegetable soup is a great place for kids to get vegetables and you could try it when they come in hungry from school. You can add lots of vegetables to dishes like Bolognese (onions, peppers, mushrooms) and stews (onions, carrots, celery). And remember: frozen vegetables are just as good as fresh.
- Encourage kids to eat fruit. A piece of fruit will give you about 2g of fibre. Aim to have 2-3 pieces of fruit everyday – this can add 4 to 6g of fibre. Try slicing a banana over your breakfast cereal, chopping an apple into a salad or just enjoy an orange or a pear for your mid-afternoon snack.
- Choose higher fibre bread as often as you can. Look for bread with at least 3g of fibre per 100g.
- Eat potatoes with the skins. Most of the fibre in a potato is in the skin so try potatoes baked, boiled in their jackets or as wedges baked in the oven with a little olive oil and some herbs. Baby potatoes are also a great source of fibre just remember to eat the skins!
- Try some brown rice or high fibre pasta. Switching from white rice to brown rice will help to boost your fibre. Just remember that brown rice can take longer to cook
- Nuts and raisins are great sources of fibre. Whole nuts are not suitable for children under 5 but older children can try walnuts, hazelnuts or almonds for a snack. Raisins, dates and dried apricots are also great ways to add fibre. Dried fruit can cause tooth decay if you eat it too often. So, keep foods like raisins to have with meals or as one snack per day – they are not foods to graze on all day.
- Encourage your child to drink water. Fibre works by soaking up liquid in your bowel and making everything soft and easy to pass. Children need a drink with every meal and to have water in between meals. Milk and water are the best drinks for teeth.
Lots of children are low in iron when they are diagnosed with coeliac disease. People with coeliac disease do need a little more iron than people who do not have coeliac disease. It is important to make sure that your child is eating foods that are rich in iron 2-3 times a day.
Being low in iron can leave children feeling very tired and run down as well as making it harder to concentrate at school. They can also be more irritable and cranky.
High Iron Foods
- Red meat (beef, lamb, pork)
- Beans and lentils – chickpeas, red lentils, brown lentils, kidney beans etc.
- Chicken and turkey legs (there is very little iron in chicken and turkey breast)
- Seeds including pumpkin seeds
- Nuts like almonds and hazelnuts
- Gluten free black pudding
Your child needs to eat 2-3 foods from this list every day.
Calcium & Vitamin D
Calcium is essential for healthy bones. People with coeliac disease get much more osteoporosis than people without coeliac disease so calcium and vitamin D are key nutrients.
Although foods like salmon, tuna and eggs have vitamin D, it is hard to get all of the vitamin D you need from food alone. It is a good idea to take a vitamin D supplement everyday. Ask your pharmacist for one that is suitable for children. If your child is happy to drink milk, then you can look for a milk that has vitamin D added and this will work instead of a supplement.
Calcium is essential for healthy bones. Below is a list of foods that are a good source of calcium. Milk, cheese and yoghurt are the best foods. If your child is lactose intolerant, you can use lactose free milk and cheese (cheese is low in lactose).
1 Serving is…
|Hard cheese (e.g. cheddar)||25g (2 adult “thumbs”)|
|Yoghurt||125g (standard small pot)|
|Calcium Fortified Soya Milk||200mls|
|Tinned Sardines (eaten with bones)||90g tin|
|Tinned Salmon (eaten with bones)||100g tin|
|Almonds – whole||90g|
You need 3-4 foods per day that are high in calcium. Teenagers need 5-6 servings
Although green vegetables do contain some calcium, there is not enough for them to count towards your calcium for the day. You would have to eat 16 servings of broccoli per day to get the calcium you need. If you do struggle to eat all of your calcium, do talk to your dietitian or consider a calcium supplement.
Every year, the Coeliac Society compiles a detailed list of foods that are free from gluten ingredients and cross contamination with gluten. We contact food manufacturers to check about ingredients, if there are foods with gluten onsite during production and collect laboratory certificates from food manufacturers that show their foods are gluten free.
Food labels do not always list gluten contamination – there is no legal obligation on manufacturers to list this, although many do. The foods list is your guarantee of foods that have been checked by the Society as being suitable for you and your child.
Using the Food List:
- Lots of foods are naturally gluten free – meat, chicken, fish, eggs, milk, plain yoghurt, cheese, fruit and vegetables – as long as they have no sauces, crumbs or other ingredients added.
- For foods that have ingredients added – breaded fish, sauces, soups and so on – check your food list or look for the words “Gluten Free” on the pack.
- Do update your food list every year – food manufacturers often change their ingredients or process so you do need to stay up-to-date.
- If there is a food you are not sure about, contact the Society and we will contact the manufacturer. Just be aware that not all food manufacturers will come back to us with an answer but we will do our best for you.
Your doctor and dietitian will advise you on the check-ups that your child needs. It is important that your child has a check-up six months after they are diagnosed and then once a year after that.
What tests do they need?
Your child will need to have some blood tests every year. This helps to check that your child is getting the nutrition that they need and to monitor their coeliac disease. Your child’s gastroenterologist will do these tests every year. When your child is older, your GP will be able to do these blood tests:
- Coeliac disease antibodies
- Full Blood Count
- Vitamin D
- Folic acid
- Vitamin B12
- Thyroid tests
Your child’s gastroenterologist may also recommend that your child has another biopsy to check that their gut is healing well. It is important that your child’s height and weight is also checked to make sure they are growing well.
Lots of recipes can be easily changed to make them gluten free – for example using cornflour instead of ordinary flour to make sauces or gravies. If you do need more help, there are some books and websites listed below:
- nannie and me are gluten free
- The Gluten-Free Cookbook for Kids: 101 Exciting and Delicious Recipes (2009)
- Seriously Good! Gluten-Free Cooking for Kids (2012)
- Gluten-Free Recipes for Kids: Fun Eats from Breakfast to Treats (2011)
- Beyond celiac: https://www.beyondceliac.org/kids/recipes/
Rosie & Jim Recipes Available Here
Halloween is a treat focused time of year for your little monsters! With a little planning there’s no need to miss out on the fun. Download our fact sheet for top tips and spooky recipes.
Trick or Treat: Going door-to-door to collect sweets and treats is all part of Halloween fun. However, not all treats are suitable. So what can we do?
- Talk to your child: it helps if you explain what the plan is and why they need to wait until they get home to check their bags for safe foods. Do this a day or two before Halloween.
- If you are going to the houses of good friends and neighbors that you know well, you can drop some gluten free treats to them ahead of Halloween and they can give them to your child when you call.
- Talk with your child about eating what is in their bag. Ask them not to eat anything until they get home. This gives you the chance to take a look at what they get and check if it is safe. Do have some gluten free treats handy to pop in just in case you have to take away a lot of what is in the bag.
Have a “Witch Switch” where you leave out treats that contain gluten overnight for the “witches” to take and leave gluten-free options in the morning.