Coeliac Children + School – Managing Childcare and Education for your Gluten Free Child

Coeliac Children + School go hand in hand. But trusting your child will be safe in the care of others can be scary and daunting. This guide offers tips and advice to support you and your child in staying gluten free and safe during the pre-school, Primary years and beyond…

(This is part of the series ‘Gluten Free Kids – A Practical Guide to Parenting a Coeliac Child’. To access the Introduction and subsequent ‘chapters’, please click on the drop-down menu ‘Coeliac Kids’ on the menu bar).

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Coeliac Children + School – Supporting a safe journey through childcare and school

Coeliac Children + School is an inevitable combination. Unless you are a home-schooler, at some stage your Coeliac Child will be passed to others for care and education. And that can be a scary and daunting prospect, not just for parents, but for some children too. Once Coeliac Children are at school, you have less control. And the younger the child, the more trust we have to place in the adults caring for them.

Depending on the age at which your child was diagnosed, they may be less or more aware of Coeliac food-safety. And the better they have learnt and accepted how to manage being Coeliac, the safer they will be.

But either way, as parents we will inevitably have to work with child care and education professionals to raise awareness about Coeliac health and dietary needs. It’s not just the need to know your child is Coeliac. An understanding of how to manage everything from snacks and lunch to keeping safe in day to day class and play is necessary.

The Legal Duty of Schools to Support Children with Health Needs

To be clear… All schools have a duty to support students with medical conditions. This includes that they have a policy on how they do this in practice. And to be fair, some schools and staff are amazing in going the extra mile to ensure they fulfil their duties above and beyond.

But the duty placed upon them is broad. And for many schools and child-care providers, the understanding and knowledge of Coeliac Disease may be limited or unclear. It will therefore fall to you to educate and inform.

Coeliac Children + School – Learning Together

If your child has been diagnosed Coeliac for some time before they start in either childcare or school, you may already be confident in managing the condition and in having discussions with others about food-safety. But many parents receive diagnosis after school has begun. And this means learning how to manage Coeliac disease at home while also teaching carers and teachers how to support their child.

It always helps to ask for a copy of the school’s policy on supporting children’s health conditions. (This in itself, may be a helpful route to more detailed discussion about your child’s individual needs). But also, be sure to share new knowledge as you learn… And remember, this may be a steep learning curve for everyone. An occasional mistake might be made, particularly in the early days.

Although it is important to keep clear oversight to make sure school and nursery staff stick to the rules of Coeliac-safety, bear in mind that excessive anxiety is unlikely to be helpful. It will likely cause stress to the adults. And it may also ultimately have a negative emotional impact on your child. Children can really struggle with making the transition to being gluten free, especially while trying to negotiate their friendships. The more support, calm and positivity you (and their carers/teachers) can offer, the easier the adjustment will be.

Coeliac Children + School – A few ideas to help in talking with carers and teachers

Most child-care staff are more than willing to work with and alongside you to make sure health needs are met. But they will be helped by having clear information (written if necessary) about Coeliac Disease. And instruction on what they need to do. So…

Planning to keep your Coeliac Child safe

• Plan well ahead if you can. – When your child starts or changes school or childcare setting, try to meet with/talk to staff before transition.
• Write to or email the school, setting or carer to confirm explanation of the diagnosis. Include any helpful links to sites such as Coeliac UK.
• Talk with them about Coeliac Disease… What it is, the health implications of eating gluten; What foods your child can and can’t eat; The risks of cross-contamination; And how to keep them food-safe.
• It helps to share printed ingredient lists and written information on do’s and don’ts.
• Coeliac UK also have a School Pack which might be helpful to use and share in preparation.
• Does your child need a medical Care Plan? If you feel you are not understood or want extra reassurance, it is reasonable to discuss having a more formalised plan with the school or nursery. This should clearly outline the what, why and how.
• Share learning about how to read and understand food labelling. And tell staff about the Crossed Grain Symbol for gluten free food.
• Ask if the whole class can be taught about safe eating. It’s not just about good hygiene, but about the need to minimise the sharing of food. 
• Remember that when your child changes school year or gets a new teacher, the same conversations may be needed again. Don’t assume the learning will be passed on.

Keeping the conversation going…

• Keep in regular and consistent contact with the teacher or carer – Continued communication is key to good support. If you know when celebrations involving food, or cookery sessions, etc are taking place, you can all prepare… together!
• You may not always be the one to drop your child off at the nursery or primary class door. So, make good use of home-school communication books.
• Remember that while Coeliac is a physical health condition, it can also affect how your child feels (their emotional and mental health). The emotional adjustments made after diagnosis are significant. Factor this in when talking with teachers and carers about any anxiety and behaviour that causes worry.
• Talk with school/teachers/nursery/child-minders about how best to manage more specific activities (see below) to keep your child safe and gluten free…
• Print off and share this helpful free checklist – Food Safety for Coeliacs (what to eat/avoid/be careful of).

Coeliac Children + School – The emotional impact of diagnosis and ‘being different’

Coeliac Disease is a physical health condition. And sometimes, it’s easy to forget the emotional impact that comes with it… Particularly for children who can suddenly find themselves feeling very different from their friends. They are having to make huge adjustments to their diet and learning about what they can and can’t eat. And at the same time, they are having to explain to their friends why they can’t eat the same food while worrying about how they are being judged.  

Put yourself in their shoes. When your friends are eating pizza or burgers and you can’t join them, it feels excluding and uncomfortable. It’s the simple, but often upsetting and painful conflict of being ‘different’. And of not always being able to have what other children take for granted.

Sadly, the nature of children’s responses aren’t always as kind as we hope they would be. So, the Coeliac child needs their frustration and upset understood, while being encouraged and given the confidence to question food safety and to look after themselves. It’s a tough balancing act.

Stay firm and clear about the gluten free diet and why it is important

Seeing your child upset is painful. And it can be all too easy to give in from time to time to help them ‘fit in’. I get really worried for some children discussed in Facebook support groups about ‘letting them eat normal party food’… Or ‘allowing them to ‘test’ eating gluten, because they want to feel like the other kids’. It’s very dangerous territory. Not only is it physically harmful, but it sets precedents for ‘excuses’ to eat gluten later in life.  

I watched my father die from Coeliac-related cancer when I was still a teenager. And I truly believe it was because he continued to eat gluten ‘to fit in’. The consequences cannot be underestimated. And your child needs to be 100% clear that having to eat gluten free is NOT negotiable.

How we managed…

Although not always possible, with Miss GF we tried to stay ‘one step ahead’ to help her fit in… Doing all we could to make gluten free alternatives for favourite foods available. To provide what other children were eating (from pizza, pasta and burgers to sausages, fish fingers and chicken nuggets).  But eating isn’t ever going to be a level playing field with Coeliac. And it is important to use each opportunity to reinforce the necessity of safe food.

See situations of potential food-conflict as opportunities to talk about Coeliac safety… Try (as best you can) to ‘play down’ the element of ‘difference’. And to help that difference feel more positive, reassuring your child through each new challenge.

Ultimately you want your child to become confident and self-reliant in their Coeliac management and food choices. And the earlier they learn and ‘own’ the importance of maintaining strict gluten free boundaries, the better the adjustment to their life-long diet.

Coeliac Children + School – Other considerations and managing food events

Beyond the basics of learning the Coeliac ‘ropes’ for food safety, there will be other hurdles to negotiate along the way. As your child gets older and moves on to secondary school, they will inevitably want and need to take greater personal responsibility for their food and health. If you have an older child, my ‘chapter’ on Managing Coeliac Through Adolescence and Secondary School may be helpful.

Below however, are some ideas on other events that you may need to manage, particularly in the preschool and primary years…

Coeliac Safe School Dinners vs Packed Lunches

Whether to have school dinners or packed lunches may not even be a question you are willing to consider. Some parents are very clear that they want to maintain as much control as possible. And that providing packed lunches is the only option for their child. But don’t forget that for children in the early years at school, and for low income families, there currently remains (in the UK) an entitlement to free school meals…

I was always clear that Miss GF should be able to sit and eat lunch with her friends. And that meant school dinners were to be requested as a ‘right’, if necessary.

For those who do want to consider the options, the decision may be based not just on your child’s pickiness and school menu, but importantly on the willingness of the nursery/childminder/school/school kitchen to work with you to provide safe food. And the confidence you ultimately have in your child not getting sick.

Greater flexibility when school dinners are cooked on site

Schools that cook lunches on premises from scratch, tend to be more flexible. And they offer more room to negotiate than with schools where food is delivered ready to eat. For us, the fact that meals were cooked with fresh ingredients in the school kitchen, was key to my willingness to fight my child’s corner. It meant there would be more opportunity to substitute ingredients where necessary to cater for a Coeliac diet.

I’ll be honest… I viewed myself as a bit of a crusader for other children with dietary needs too. And it made a difference… Once I stuck my head above the parapet, lots of other children came forward for their previously unattainable school dinners. And the number of children with Coeliac (and other allergies and intolerances) became starkly obvious.

Tips to negotiate school dinners for Coeliac Children at School

If you choose to go down the school dinners route…

Initial negotiation and discussion

• Make your intentions known to the school office/head teacher. And ask for details of the key contact in the kitchen and for any linked catering supply company.
• Make direct contact with the school kitchen lead (usually the head cook) and catering supplier. Arrange to meet with them to discuss the menu and options available. This may help avoid the ubiquitous daily baked potato scenario!
• Work closely with kitchen staff and offer your support and knowledge… Provide information on Coeliac Disease and ingredients to avoid. And try looking with them through the recipes used in school… You may be surprised at how much leeway there is. Our experience was that many of the base sauces and recipes were naturally safe or could be easily tweaked,
• Stay positive and work alongside, rather than against them.

Asking to check labels and for safe substitutes to be provided

• Ask to check the labels for food mixes and products used by the school that are often risky. (Stock powder, custard, baked beans, chips, sauce mixes, etc). Not only will this alert them to hidden gluten, but it will open the door to considering product alternatives which are safe.

We were lucky… Where there were problems the kitchen and catering company agreed to change their brands to make them safe. A few months in and roast day included gluten free gravy for all children with no risk of cross-contamination. A couple of years in and they were making gluten free cake and bread and using gluten free pasta for the children that needed it. I remain proud of the impact we had.

• Sometimes ingredients can’t be easily substituted. So, look to negotiate ways to alter the meal for your child that won’t add too much time or effort for the kitchen staff… With Friday Fish and Chip Day, the cooks would use un-battered fish that would be oven-baked separately in foil for Miss GF. This would be served with safe chips (cut for all children from fresh potatoes) and was never considered a problem. On one menu round, it even resulted in Miss GF being served parcel-wrapped salmon. She was truly cared for and understood.

Re-discuss and record the menu with seasonal/termly changes

Many schools use menus which repeat and rotate on a 2 to 4 weekly basis. And are then changed termly or seasonally…

• In advance of each change, request a copy of the menu. Then set up a further meeting/discussion with the school cook to discuss any tweaks and changes.
• Following each meeting, it may be helpful to write up the agreed menu. This can then be stuck on the kitchen wall, for all kitchen staff to access. It might look something like this:

• The written menu plan effectively ensures that all kitchen staff are able to be clear.
• Share the menu with your child too. So they know what to expect and can pick up on anything that doesn’t seem right.
• Give your mobile number to the head cook. If there is a need for unexpected changes or a potential problem, they can call you direct.

Puddings are not always straight forward

Although it would be absolutely fine for your child to have fruit/yoghurt/ice cream each day for dessert, it may be that you want to work a little harder to help them fit in. This will (of course) be dependent on choice, time and confidence to bake, as much as the school’s willingness to work with you… The way we managed was to…

• Provide a selection of alternative cakes and biscuits. These ‘mirrored’ as closely as possible the pudding menu being offered to other children… What Miss GF’s friends were having, but in gluten free form. Some were home-baked and some shop-bought.
• Because we had menus that were planned for several weeks ahead, batch-baking alternatives was relatively straight forward. And cakes could be frozen in portions ready to wrap and send in on any given week.
• Home-provided puddings were not sent for every day, but were balanced-enough in frequency to feel that ‘difference’ would be minimised.
• A ‘pudding pack’ would be taken into school at the start of each week (labelled for the day in question). It was then kept in a food-safe container in the kitchen/fridge ready.
• Check out our Small Cakes, Tray Bakes and Biscuits & Cookies in our main Gluten Free Recipes Index for home-baked ideas.

Give thanks to staff when they work with you

Maybe we were really lucky, but the system (for us) worked perfectly. If it works for you too, be sure to thank the staff and show your appreciation. Sending in a box of chocolates at the end of each term is really appreciated. If your child is being kept safe and fed well, it is more than worth it.

Snacks for Coeliac Children at the Childminder and at Nursery School

Similar rules apply to those discussed around School Dinners above. Information, communication and negotiation is key to ensuring your child is safely and equally catered for.

It may of course be that your childminder or nursery are confident to source and supply gluten free alternatives themselves. And that may work well for you and your child. But however you proceed, be sure they understand the rules around cross-contamination and the need to avoid any food-sharing. All your hard work can be easily undone by an inadvertent shared knife, spoon or plate. It can help to…

• Provide a labelled and wrapped supply of snacks such as crackers and cookies that can be kept in a tin/container. Make sure it’s labelled with the name of your child.  
• Send a small (regularly topped up on request) supply of pitta bread/rolls etc, again in clearly labelled bags. These can then be stored in the nursery/childminder’s freezer to be defrosted as and when needed.
• Remember that butters and spreads are a big (and often forgotten) risk for cross-contamination. It is a good idea to provide small-sized containers of un-contaminated butter, spreads, cream cheese, houmous, etc. And some individual jam/Nutella/marmalade portions (the type that you get at hotel breakfast buffets). Make sure these too are name-labelled.
• Ask to be told (in advance) about any planned special events such as leaving parties or celebrations. That way, if there’s likely to be cake or treats, there’s an opportunity to provide gluten free alternatives and your child won’t be left out.

Play Time and Art Materials (play activities involving food and food products)

Play activities which involve food and food products have long been popular in nurseries and schools… Think play dough, pasta art, etc… But it’s also an area which can be easily missed as a source of gluten-contamination for Coeliac children. Children at nursery and in early years education and care will be completely reliant on the adults looking after them to keep them safe. Very young children are too young to be fully aware of the dangers or to take responsibility.

The use of play dough, salt dough, pasta, cereal and even grains such as barley in nurseries and schools is amazingly common. Whether in pursuit of creativity, art or for general play, these materials are cheap and versatile. But… All of these items also potentially contain wheat flour and gluten. And this has a good chance of being transferred to your child and ingested. Very young children use their mouths as part of learning and exploration. Glutenous ‘play-material’ and fingers can easily find their way into little mouths and make Coeliac children sick.

Be sure to check what play and art materials are used at the setting (including after-school clubs). And ask for these to be Coeliac-safe or for your child to be extremely well supervised. The use of gluten free pasta, cereal, play dough, etc will always be the better option as specific supervision of one child in many is not always realistic.

Gluten free Playdough is now available commercially, through smaller companies like Tiny Land. Or, an alternative can be made at home.

Coeliac Children + School – Cookery Clubs, lessons and shared food preparation

Although formal cookery and food technology lessons are expected in secondary school, even nurseries and Primary schools have shared cooking in class to promote healthy eating and food skills. And all schools will often use food to celebrate diversity and cultural festivals. At Miss GF’s schools, they offered everything from pancake and pizza-making in class, to making historic ‘jumble’ biscuits and sharing French breakfast.

Let teachers know that gluten-avoidance is required even when the curriculum involves food. And ask that you are given ample notice of food-based events. It is really important that your child does not get left out either from an educational or social standpoint. So, try and go the extra mile to provide alternative ingredients, recipes or substitutes where necessary.

Be aware also of the risk of cross-contamination from flour, etc and request that your child uses a separate ‘cooking table’ for any food preparation. If possible, it helps that another child (or group) also work with gluten free ingredients at the same table. This will help to avoid feelings of isolation.

And if baking is required, ask that any gluten free creations are kept separate from other bakes in the oven. Separating by foil or careful placement away from gluten bakes can help to prevent cross-contamination.

Going on Day Trips and Residentials

Whether as part of the school/pre-school curriculum or because your child belongs to a club, they are unlikely to go through their school years without going on a day or residential trip. Children must not be excluded from school trips because they have coeliac disease.

Day Trips

Packed lunches and snacks for day trips (whether provided from home or the school) should be relatively straight forward. But it will still be important to remind the school (particularly if they are providing packed lunch as part of free school meals) that your Coeliac Child needs a completely gluten free pack. This will include checking any crisps, spreads and biscuits. And if your child is young, it will also be important to remind staff to supervise closely and enforce a food ‘no-sharing’ policy.

Residential Trips

For residential trips, you are likely to need greater reassurance.

At the time of the trip first being discussed and booked with parents, consult with staff who will be attending. Particularly ask them what experience they have previously had of the residential venue. It is likely they will have been there before or would have undertaken a risk assessment visit. So, they should have considered the dietary needs of their children already and checked catering ahead of booking.

It is also worth looking up the venue on the internet and making direct contact with the manager. Discuss in advance how they manage dietary and health conditions and what food will be on offer for your child. It is more than likely they will have managed similar issues before and direct discussion is usually enough to reassure.

It may be worth having a later telephone call just before your child’s attendance on the trip, with both the school/club and the residential venue to confirm arrangements.

Either way, teach your Coeliac child to politely ask about how food has been prepared if they are unsure. And give them permission and confidence to decline food that may be unsafe. Pack some emergency snacks to keep them going in the event that they haven’t eaten much. And make sure there is a nominated teacher who they can go to if worried.

Class Birthdays and Celebrations

Most pre-school and school settings are keen to celebrate children’s birthdays. And this often includes children bringing in cakes or sweets to share with their class-mates. Often this happens at the end of the school day and always creates excitement.

It’s really important for your Coeliac child to be part of the celebration. However, you have little control over what will be shared, when and whether it will present a risk. But even though events happen in a random way, they can still be planned for…

• Discuss with your child’s teacher/carer at the start of the school year and work out a strategy for your child being fully included at all times.
• Ask that all treat labels are checked as gluten free before sharing. And be clear that home-made cakes are not to be offered to your child.  
• Whether provided by you or the school, it helps if a small and separate (labelled) tin of gluten free sweets and snacks can be kept safely in the class. They will then be ready to be offered to your Coeliac child in place of whatever the birthday child has brought in. Actually though, you may be surprised at how quickly other children catch on. Within weeks of Miss GF’s diagnosis, some parents were already kind enough to send in a special gluten free treat.
• Carefully explain the plan for managing such events (and importantly why) to your child in language they can understand.

Coeliac Children + School – Christmas and Leaving Parties

As with other celebrations, Christmas and leaving parties (whatever the age) usually centre around food and games. Children are usually asked to bring in food to share (often on a list-ticked basis of what is needed). And winners of games are rewarded with sweets and treats.

Party Food

This is one situation where I absolutely recommend sending in a ‘party-pack’ for your child… There is simply too much risk from crumbs, spillages and gluten-contaminated fingers. And in amongst the excited chaos, it is nye on impossible for staff and helpers to keep track.

Make sure the pack is labelled with your child’s name and explicit instructions that it must not be shared with the other party food (which is often spread on tables for the children to help themselves). Explain why this is essential. Bear in mind that school parties are often supervised by parent volunteers who may not have the same experience of managing Coeliac or dietary health needs.

If possible or appropriate, you might like to offer to be one of the parent-helpers. It can be fun. And it may also be helpful to see how your child gets on.

So that your child feels as much like his/her friends as possible, try to put together a party pack that contains the sort of ‘party food’ other children will be eating… Sandwiches, crisps, cocktail sausages, colourful biscuits, etc. And if possible, either make or ‘pimp up’ a couple of gluten free fairy cakes with pretty icing and sprinkles to rival those they will see on the party table.

Prizes

It is important for those supervising the party to be aware of the ‘no gluten’ rule for party prizes too. Talk to the teacher before-hand and check whether you need to send anything extra in for party day. And talk to your child as well. Let them know what arrangements have been agreed and give them time to discuss any worries (either practical or emotional) they may have. Coeliac children will often have their own anxieties about social gatherings (either because they feel different or because they are worried about getting ‘glutened’). And they may need reassurance about what they can and can’t eat.

Coeliac Children + School – Helping your child gain the confidence to live gluten free, safely

The school years are the best time for Coeliac Children to learn and gain confidence about the importance of eating gluten free. And to ask questions when they are worried. Younger children are particularly ready to learn and are willing (for the most part) to listen to advice and ‘rules’ around their diet and health. By the time they reach adolescence, this willingness may lessen and the belief that ‘they know best’ may cloud their cooperation and judgement. So, use every opportunity to teach younger children and help build confidence and independence around managing their Coeliac needs.

Helping Coeliac Children to be part of the conversation at school

Although with primary aged children you will remain the key negotiator, it is still important to take them along to school discussions. In the long term, this is their health condition. And the earlier they practice conversations about Coeliac, the better they will manage in the future. As they grow and gain understanding, offer them the opportunity to lead the conversation. Encourage them to ask questions about what they are eating… To be observant about how food has been prepared and served… And to challenge when they are not sure if food is safe. No child should ever have to eat something they are worried about.

Whenever possible, help them to feel competent in explaining their condition. You could even consider with their teacher whether a class lesson on allergies and intolerances might be helpful. And whether they could involve all children in the class in talking about what this means for them and why there needs to be clear rules on food-sharing. Children make amazing educators for their peers… And they are often more than willing to talk in more structured situations about how they feel.

Miss GF (as part of a home-work activity) made a colourful leaflet explaining Coeliac Disease to her friends. But you could equally encourage your child to use events like Coeliac Awareness Week to promote knowledge of the condition for the school community.

Last word…

However your child develops, remember they are Coeliac for life. This is their normal. Support them unconditionally and they will become strong and safe.

Do let me know if I’ve missed anything or you feel the post can be added to in any way. Use the Contact Form to email me direct.

You may also find it helpful to read Coeliac Children + Friends – Staying Gluten Free at Playdates and Parties and The Coeliac Teenage Years – Navigating Adolescence and Secondary School