Chapter 17

Raising Happy, Healthy, Gluten-Free Kids

In This Chapter

Dealing with your emotions

Chatting with children and teens about their gluten-free lifestyle

Deciding whether the entire family should give up gluten

Letting your kids have some control

Getting out and about with gluten-free kids

Letting go a little bit: Babysitters, school and other scary situations

Helping teens live gluten-free

A dults needing or choosing to adopt a gluten-free lifestyle is one thing. Your kids needing to be gluten-free is an entirely different ballgame. Parents find it intensely worrying when something is wrong with their child and even though most doctors are now very aware of coeliac disease, the process of getting a clear diagnosis isn’t always straightforward.

Maybe doctors see a lot of overanxious parents and have to constantly reassure them that bub is doing fine. But when you’re the parent and believe you have plenty of evidence, over weeks or months, that your child isn’t thriving — and you still get the same placatory treatment — you experience absolute anguish.

It took almost 12 months and numerous visits to doctors (including two paediatricians) for Sydney mother Rebecca to get a diagnosis for her little girl. By then toddler Charlotte’s weight had dropped from the 75th percentile to below the 10th; she was listless, quiet and withdrawn, and had stopped crawling or walking. For Charlotte’s mum, the relief at finally learning what was wrong and knowing something could be done about it was enormous, and overrode her feelings of concern for the future. (If you want to read the entire story, you can find it in Chapter 1.)

For most parents, however, a diagnosis is much more straightforward and the news that their child has a serious illness requiring a new diet for life is overwhelming.

We’ve loaded this chapter with information to help you deal with your roller-coaster of emotions, the practicalities of having kids on the gluten-free diet and the psychological impact this may have on your family.

Forging through the Feelings

Everything’s different when your child’s the one on the gluten-free diet: The way you feel, the way you communicate about the diet, the resentment you feel towards parents who don’t have to make special arrangements just to feed their child, the preparations you make to go anywhere, the way you shop, the foods you buy, the school lunches.

If you’re a parent — or someone who loves a child as a parent would — and your child has to adopt a strict, gluten-free diet, your emotions probably resemble a roller-coaster. You know: up one minute, crashing the next, as in Figure 17-1. It seems like just when you’re feeling great about the diet, you find out the kids had a birthday party at school and your child was the only one without a cupcake. Your emotions go from flying high into free fall.

In addition, you have other nagging concerns about your child’s future. See whether some of these strike a familiar chord.

‘My child’s life is changed forever’

Well, that’s true. And forever seems like a really long time, doesn’t it? What happened to those visions you had for your children — the perfect life, where things are easy and magical? Well, for one thing, that’s not reality.

People forget to dream about the hardships their kids may face and how they’ll handle the difficulties in their lives. Yet handling adversity is one of the most important skills they will ever learn. Furthermore, what you may initially see as difficulty may actually be a good thing in your child’s life (and yours). See the ‘Focusing on the good stuff’ section for more information.

‘I don’t want my child to feel different’

You imagine your kids’ lives as being smooth and painless, and part of that means fitting in. But kids are different in many ways and although we’re not downplaying the importance of food and the part it plays in everything people do, your kid’s differences are okay.

Kids are all different — some kids have blonde hair, others have red; some prefer skateboarding to soccer; some are in wheelchairs and others wear glasses. To pine away for her conformity is to send a signal that something about being different in this (gluten-free) way is bad. The last thing you want to do is send that message.

Parents worry that their kids won’t fit in or won’t be accepted because of their ‘different’ diet, but kids can fit in regardless of what they’re eating. Fitting in has much more to do with their attitude than anything else.

‘Will he turn out okay?’

No, he’ll be better than okay, because he’s healthy! But Danna agonised over this same thing when her son Tyler was first diagnosed. Oh, sure, friends and family told her, ‘It’ll be okay’ the way friends and family do in tough situations. But she felt they were just placating her — after all, what did they know? They hadn’t even heard of coeliac disease before she explained the diagnosis. And at the time she didn’t care much what adults thought of the situation — she wanted desperately to hear it from a kid: ‘I turned out just fine.’

The truth is, being coeliac isn’t a big deal for children, although it seems so for their parents. This may be because they live in the present and are not looking ahead, predicting what difficulties might arise in the future. They might look as far ahead as a school party and predict that they won’t have much to eat because they’ve had that experience before, but they won’t go much further than that. Or it may be that most children are naturally optimistic, at least into their mid-teens, and don’t spend time thinking up worst-possible scenarios. If children are diagnosed young, they will have limited experience with food containing gluten so they’re not aware of what they’re missing. So rest easy, parents. Your kids will, in fact, be just fine. And so will you.

‘This is harder for me than it is for her’

If you love a child the way a parent does (even if you’re not the actual parent, but are, nonetheless, as emotionally entwined as a parent is), you can comprehend the this-hurts-me-more-than-it-hurts-you Pain Amplification Phenomenon (PAP). Seeing a bloody knee or a broken heart truly causes pain — palpable pain — for the grown-ups who love that child.

Those of you who are agonising over the fact that your child has been diagnosed with a condition that requires a strict, lifelong, gluten-free diet may have trouble accepting this idea at first, but it’s true. Dealing with the diagnosis is harder for you than it is for your child. In most cases, kids are resilient. They accept what life dishes out and they make the best of it. Maybe grown-ups should take note.

If you don’t believe that this diagnosis is harder on you than it is on your child, go up to a kid and ask what she thinks about in her life and take notes. She’ll mention things like ‘riding my bike’, ‘my best friend, Sarah’, ‘my birthday party’, or any other number of answers. Diet is really not a priority — nor should it be.

Focusing on the good stuff

Being gluten-free may be a good thing in your child’s (and your) life for a lot of reasons. Make your own personal list to pull out when you find yourself feeling frustrated or depressed. Here are a few to get you started:

• Your child has the key to better health. Most people who have undiagnosed coeliac disease or gluten sensitivity never know what’s wrong with them. They don’t know that a dietary modification would fully restore their health, so they continue to eat the very foods that make them sick.
• Your child will be less likely to develop associated conditions. Your child has the advantage of having been diagnosed early and going gluten-free at an early age. That means your child’s chances of developing associated conditions like osteoporosis or diabetes type 1 are lower than for someone diagnosed after years of being sick with coeliac disease (refer to Chapter 2).
• Chances are, your child will be tolerant of others’ sensitivities. In fact, she may be more tolerant in general.
• Your child may have the opportunity to help someone else who has gluten intolerance or coeliac disease. Remember, if 500 kids attend your child’s school, about eight of them may have coeliac disease (although they may not all be diagnosed yet) — and even more may have a form of gluten sensitivity. Your child’s diagnosis may lead to greater awareness and other children finding the way to good health.
• If your child has other dietary issues, like diabetes, controlling them will be easier on the gluten-free diet. This is because your child is more aware of her diet and more in control of what she’s eating. A low-GI (refer to Chapter 6) gluten-free diet improves both diabetes control and growth in coeliac children.
• If your child has behavioural issues in addition to gluten intolerance or coeliac disease, chances are, they’ll improve. A child who’s malnourished may find it harder to concentrate or persevere with school work and this can lead to poor behaviour in class. Some parents of children with ADD or ADHD say that behaviour improves on a gluten-free diet.

Talking to Your Kids about Being Gluten-Free

Whether your child is 18 months or 18 years old, now’s the time to talk, and the entire family needs to be included. How you do this depends on your style, your intra-family relationships and your child’s ability to understand the intricacies of the subject matter. Talking to your children is step one in making sure they develop healthy attitudes and habits.

Including the whole family

Even if your entire family doesn’t choose to go gluten-free, having a gluten-free child in the house affects everyone. All the family members need to know about your child’s condition, the diet and how to handle a variety of situations that may arise.

We’re not suggesting that you organise an extended family reunion and include fifth cousins thrice removed. But you do need to include your immediate family in some type of discussion and continue to keep them informed over the years.

Kids will be kids, and learning about the diet doesn’t mean that brothers and sisters will always be kind and understanding about it. You may hear the typical taunting — you know, the ‘I can eat this and you can’t’ type of stuff. Treat that teasing the same way you’d treat any other act that you don’t approve of between siblings. Don’t let your feelings of sadness that your child has this condition make you overreact to unkind gestures. Mean is mean and you should respond to meanness consistently.

Keeping the discussion upbeat

Everyone you talk to about the gluten-free diet — and the conditions that require it — finds out how to feel about the gluten-free lifestyle from you. Is being gluten-free a bad thing in your life? A scary thing? Good thing? How you talk about it has a far greater impact than you may realise.

If you talk to family members in a dead serious, sombre way, you’re going to scare your kid right out of her PJs and cast an impression of doom and gloom. This conversation should be upbeat, lighthearted and interactive — after all, becoming gluten-free is an okay thing in everyone’s life. If you can’t remember why, check the earlier sections in this chapter or look at some of the thoughts in Chapter 19.

The most important person to stay upbeat around is your child. For the rest of her life, how she feels about being gluten-free depends on you and your attitudes. She doesn’t know how to feel — this is all new to her (granted, it’s new to you, too). Give her the advantage of starting off upbeat and optimistic. If she’s like most kids, she’ll take it from there and will provide amazing strength and inspiration.

Don’t make a huge deal out of needing to be gluten-free. As huge as it may seem to you, chances are this isn’t going to be a huge deal in your child’s life . . . unless you make it one.

Explaining the new diet

The level of detail you get into depends on your child’s age, maturity and ability to understand this type of thing. In a nutshell, you want to give her the ‘why’ she’s gluten-free (to feel better), the ‘what’ (what gluten-free means), and the ‘what now’ (what she can eat now that she’s gluten-free), which is really most important, because that’s what matters most to her.

Be patient and don’t try to rush explaining everything. Understanding and accepting may not happen all at once, but will more likely be an ongoing process for all of you.

Focusing on the benefits

When you start the discussion with your child, remember to focus on the benefits of the diet. Say something positive like, ‘You’re going to feel so much better now that you’re going to be eating gluten-free foods!’

Kids think in specifics. Drive the point home to them with something they can personally relate to, like, ‘You know how much your tummy’s been hurting lately?’, or ‘You know how tired you get sometimes? You’ll feel much better now that you’re gluten-free.’ Specifics can help children understand exactly what’s going to be better on the gluten-free diet.

A few weeks into the lifestyle, point out to your kids how much better they feel, thanks to the yummy gluten-free foods they’re eating.

Using big words and good explanations

Don’t underestimate what your kids can grasp. When explaining the diet to your child, use the real words like gluten (spare them the carboxymethyl-cellulose, though, okay?). Even if your child has developmental delay or learning difficulties, use the proper terminology so that he can better communicate what he can and can’t eat to others.

Of course, he’s not going to understand everything at first (did you?). Give him examples he can understand — explain that gluten is in many of the foods he used to eat, like bread, biscuits and cakes and then quickly let him know that he can eat special biscuits, cakes, bread and other things instead.

Offering gluten-free alternatives

Always focusing on what your child can have is important. Any time you or your child asks about or points out a food that’s off-limits, try to point out something equally as scrumptious that’s gluten-free.

Of course, you’re not going to say, ‘You can’t have those biscuits anymore, Jordan, but look here! You can eat all the broccoli your little heart desires!’ That won’t win you any brownie points, nor will little Jordie be likely to buy into this new diet with much zest. Instead, you can accomplish three things at once here:

• Reward your child for grasping the diet
• Offer an alternative
• Reinforce that he can eat the alternative because it’s gluten-free

A couple of simple sentences do the trick: ‘You’re right, Jordan, you can’t eat those biscuits. But you can have these because they’re gluten-free.’

With young children, always be ready with a Food Swap. When your child has a treat she wants to eat but can’t because it has gluten, be ready to swap it for something equally as appealing — but of the gluten-free variety. Kids are relatively easily distracted, and if you have some delectable goodies waiting in the wings as a good swap, you’re sure to turn that frown upside down.

Reinforcing the idea that gluten makes your child feel yucky

Help your child make the connection that gluten makes him feel bad. You should use this in a couple of situations — first, whenever you talk about gluten: ‘You’re right, you can’t eat that. It has gluten and gluten makes you feel yucky.’ This way, he knows to associate gluten with feeling bad — and that’s a very good thing. To state all this scientifically, the desire to cheat is inversely proportional to the realisation that gluten makes you sick, as shown in Figure 17-2. When you can chart something, it must be true, right?

The chances that your child will sneak gluten (or even want it, for that matter) are inversely proportional to the clarity of this association between gluten and not feeling well.

Chances are your child is trying really hard to stick to the diet. Make sure she doesn’t feel like she’s done something wrong by eating the wrong food. Point out that everyone makes mistakes and that gluten can be hidden in all sorts of things. It just means you have to be super careful in the future.

When kids who have coeliac disease get tummy aches, you may jump to the conclusion that they feel sick because they ate gluten and you find yourself agonising over what the culprit may have been. But remember, kids get tummy aches! They can be caused by all kinds of different things, but for the most part, they’re a normal part of growing up. Being diligent about the diet and, when you see a gluten reaction, figuring out what caused it, is important. But sometimes tummy aches and other types of gastrointestinal distress are just normal parts of being a kid. Your child needs to understand this too. He may learn to discriminate between the after-effects of eating gluten and other kinds of tummy pains or disturbances. The way people react to gluten varies widely between individuals so it’s really useful if a child — and the parents — can learn to tell the difference.

Handling your child’s reaction

You can’t predict how your child will respond when you first start talking to her about her new gluten-free lifestyle. Her reaction depends on how you present the diet, her age, maturity, level of understanding, ability to express her feelings and, of course, her personality.

You probably realise that if she shows anger, hostility or other ‘negative’ emotions, you should be soothing, understanding and supportive — those parental responses are natural.

Don’t think, though, that the initial ‘upset’ reaction is going to stick. It’s most likely a fleeting response that evolves into a more positive outlook over time. Continue to remind her of the benefits she can look forward to now that her body is getting healthier because she’s eating gluten-free foods.

Be prepared for little or no response. Appearing to be indifferent or apathetic isn’t unusual for kids. Don’t read too deeply and assume this reaction is a ‘cover’ for deep, disturbing thoughts — chances are, it’s an honest response to a somewhat confusing issue or a reaction to something that truly doesn’t seem to matter much at the time.

Helping your child talk to others about the diet

Your child needs to talk to other people — both adults and other kids — about his gluten-free lifestyle. He’ll be doing it for the rest of his life and there’s no time to start like the present. Of course, the way he communicates the message depends on his age, personality, who he’s talking to and how comfortable he is talking about this type of thing.

Explaining what they can and can’t have

Teach your child a phrase to use, even if she’s too young to know what it means. Use something comprehensive that she can repeat to adults. For instance, ‘I can’t eat gluten. So I can’t eat anything that comes from wheat, rye, barley, malt and oats.’ This tells adults the essence of what they need to know.

Maybe that one’s too cumbersome; but if your child can handle it, go with it. If not, find one that’s more age-appropriate or one that suits your child’s personality. The idea behind the memorised ‘sound bite’ is that it covers a lot of bases with a relatively easy couple of sentences.

Of course, the more children can add, the better. If your child can explain to people exactly what she can and can’t eat, that’s terrific — and if she can add the fact that gluten makes her feel bad, that’s better yet. Before long, you and your child will work out what works best for her.

Teach your child to be open and conversant about being gluten-free. You want him to be confident to speak up about his needs, but understand that he can’t expect everyone to accommodate his diet at all times. Informing people (especially those who may be involved in feeding him) is important and you can do this in a friendly, informative manner.

Some kids feel more comfortable simplifying their explanation to something people can understand more easily, like, ‘I’m allergic to gluten’, or even ‘I’m allergic to wheat.’ Even though that explanation may not be technically correct, sometimes it’s easier. Just make sure your child knows the real facts so she doesn’t get confused later on.

Teaching kids to say ‘No thanks’

No matter how well your child communicates the fact that he can’t eat gluten, some people will, usually with the best of intentions, offer him something with gluten. This can be really confusing to your child, especially if the sweet-slipping-someone happens to be a loved one who folds a biscuit into your child’s hand and says with a conspiratorial just-between-you-and-me wink, ‘Don’t tell Mummy and Daddy’. Help! What’s a gluten-free kid to do?

Explain to your child how and why this type of a situation may come up and, most importantly, how to handle it. Sometimes saying ‘No thanks’ or ‘Thank you, but I can’t eat that’ is easy for a child. Other times, it’s easier and more conciliatory just to accept the treat and not eat it.

Even if your friends and family won’t be offering him gluten, someone out there will. You can spare your child disappointment and confusion if you help her deal with this type of situation before it comes up.

Deciding Whether the Whole Family Should Be Gluten-Free

Many people assume that because one child is gluten-free, the entire family should adopt the lifestyle. After all, wouldn’t it be cruel to be feasting on doughnuts while your gluten-free child is choking down rice cakes? Yes, it would.

But having the entire family go gluten-free isn’t always the right answer, either. You really have to weigh both sides of the issue and consider the practical and psychological issues. This section helps you weigh the pros and cons.

The pros

Here are some advantages if everyone goes gluten-free:

• You make only one version of each meal. Rather than making a gluten-free version and a ‘regular’ version of some dishes at mealtime, you can make just one gluten-free version and be done with it.
• You have no risk of contamination in the kitchen. And no need to read labels every time you get something out of the cupboard.
• Your child doesn’t feel different. It’s okay to be different, but it’s also nice to feel the same, to be part of the family.
• The pantry is filled with ‘safe’ foods. You don’t have to worry that you or your child accidentally grabs a gluten-laden snack, because you don’t have any.
• Your child isn’t tempted to cheat. At least not at home.

All that sounds good, doesn’t it? At first glance, that would be the simplest way to go. But you have many ‘cons’ to consider, and may decide the disadvantages of having the entire family go gluten-free outweigh the advantages.

The cons

Here are a few of the disadvantages of everyone going gluten-free:

• A gluten-free world isn’t reality. Your child needs to understand that the rest of the world eats gluten. They’re not doing it to make her feel bad or to ostracise her; no malicious or evil intentions are involved. What better environment to learn that important lesson than in a loving, supportive home?
• Your child doesn’t find out how to make food choices. Knowing how to choose the right foods is important for your child. If the pantry’s free of ‘no-nos’ she doesn’t need to decide. She may become complacent about mindlessly grabbing food without giving a thought to whether it’s gluten-free.
• Other family members may become resentful. Brothers and sisters — even parents — can be a little bitter about having to give up ordinary bread and biscuits if they don’t have a health condition that requires it. Mumbles and grumbles at the dinner table can make a coeliac child feel guilty about depriving the others.
• Your child won’t learn to resist the temptation to cheat. Teaching your child to resist temptation (especially because gluten is practically everywhere) is better than never tempting him.
• You’ll spend a bundle. Some families have to manage this cost because a parent and three or four children are gluten-free, but it adds considerably to the family budget. Best to save the $6 loaf of bread for your coeliac child. (Families — in fact all coeliacs — don’t get financial assistance in Australia as they do in New Zealand and some other countries, despite frequent lobbying by Coeliac Australia.)

Middle ground

Sometimes a compromise is the best solution. See whether these ideas work for your family:

• Make most meals gluten-free. It’s pretty simple to make the majority of your meals gluten-free and still please everyone without using up your worth-their-weight-in-gold gluten-free items. This can make cooking and preparation easier and everyone will be able to enjoy the same meals.
• Buy gluten-free condiments and staples. Using gluten-free salad dressings, soy sauce and other staple or condiment-type items makes life a lot easier on you — and you don’t have to make separate stir-fries just because one of them has the gluten-containing kind of soy sauce on it. Remind your child from time to time that not all mayonnaise or soy sauce is gluten-free so your child doesn’t assume this when eating elsewhere.
• Enjoy the delicious gluten-free baked goods. Many of the mixes these days for biscuits, cakes, pancakes and other baked goods are almost as good as the real deal. They’re a little more expensive, maybe, but cost aside, you really have no reason to make separate batches. Make one batch of the gluten-free kind and let the entire family enjoy.

Giving Your Child Control of the Diet

From an early age your child needs to make decisions about what she can and can’t eat and how important it is not to cheat, no matter how tempted she is.

From a psychological standpoint, it’s important that the gluten-free diet doesn’t take front and centre stage in your child’s life — and that means she should be thinking of other things most of the time. But when it comes time to eat, she needs to realise how important it is that she makes good choices. Food is something she needs to pay close attention to.

A wise proverb says, ‘Give a man a fish and you feed him for a day. Teach him to fish and you feed him for a lifetime.’ Teach your kids to choose foods they can eat for a lifetime. Giving your child control of the diet also creates bonuses for everyone:

• Your child has confidence. He knows that even if you’re not there, he’s able to eat safely because he can make healthy food choices.
• You can relax. You know that even if you’re not there, your child is prepared to make good food choices. And if you are there, you don’t have to be doing all the decision-making.
• Your child is learning the importance of healthy eating. How many kids read food labels or give even a first thought (much less a second) to what they’re putting in their mouths? Your child becomes conscious of nutrition at an early age.

Working together to make good choices

When we suggest giving your child control, we’re not suggesting you let her make all the decisions by herself — like everything else in life, children need a little guidance, especially at first. You can do many things together to help kids make good food choices:

• Read labels together. Even if your child is too young to read, pretend. Hold the ingredients label where you can both see it and go through the ingredients out loud, one by one (just like when you’re tired and reading them bedtime stories, you can skip the superfluous stuff). Point to the words and when you come to pertinent ones like wheat, remind them, ‘No. This one has gluten in it.’ And then, because you’re well conditioned to quickly point to the alternative, follow up with, ‘Let’s try this one’ and grab something you know is gluten-free.
• Make a game out of it. When you’re reading labels or talking about foods, see who can decide which one is gluten-free (or not) first. (Note to all those competitive types: let them win more than you.)
• Let your child plan the menu from time to time. Not only does this give him a chance to work out what’s gluten-free and what isn’t, but you also know he’ll actually eat everything he’s served. So what if his menu consists of rice, chips, chocolate and gluten-free macaroni and cheese? Go with it. Remember, for that meal at least, he’s in control.
• Let your child pack her lunch. Put some basic rules in place so she won’t go off to school with six packets of chips.
• Let your child cook. Kids love to cook, even though it usually ends up being far more work than if they don’t help. Figuring out how to cook at an early age is important for all kids, especially for those who will be requiring some specially prepared foods for the rest of their lives.

Trusting kids when you’re not there

Letting g-g-g-g-go is one of the hardest things parents ever do; yet it’s your job as a parent. Every day you prepare your children for life so you can eventually set them free. If you do your job well, you can rest easy knowing they have all the tools they need to make decisions that lead to safe, happy, healthy lives. You don’t have much of a problem giving them control of certain things — going to the toilet by themselves, washing their hands and using the DVD player. But when it comes to choosing foods — and those foods could make them really sick — trusting that they’ll make safe choices is hard!

You’ll know when the time is right and when you can actually relax knowing they’re making safe food choices. It’ll most likely be way before you expect it and maybe way before you’re ready.

Your children are going to make mistakes. Occasional mistakes won’t kill or permanently harm them and, with any luck, it’ll cause some discomfort so they realise the importance of being more attentive.

Hitting the Road with the Gluten-Free Gang

Living life in a bubble is for helium molecules. Your child’s life shouldn’t be restricted just because he’s on a restricted diet! Really, getting out and about with gluten-free kids isn’t much different from the way adults do it: You still follow the ‘Golden Rules of Going Out’ (refer to Chapter 16); tips for travel are the same and ordering at restaurants isn’t much different, except you may be ordering from a kids’ menu instead of an adult one. We do have a few suggestions that are specific to getting out with gluten-free kids:

• Let your child order for herself. At first this may be cumbersome, because she’s likely to order chicken nuggets or spaghetti, assuming it’s the gluten-free kind she eats at home. Don’t worry about taking a long time or bothering the waitress. Learning to order at a restaurant is really important for your child and actually doing it is an important part of the process.
• Don’t be shy. Some kids are mortified when adults ‘make a scene’. All an innocent parent has to do is say, ‘Could I ask you about this dish’ and the eyes start rolling and the ‘Oh boy, here she goes’ comments start spewing forth. We have, our children tell us, scarred them for life. Ignore your kids and ask anyway. If they won’t, you need to.
• Consider bringing dessert for your child. You can’t assume the desserts at a restaurant are gluten-free, so just in case they don’t have any, either bring your own or go somewhere else for dessert.

Leaving Your Gluten-Free Kid in the Care of Others

Leaving your kids with other people is scary enough, even when they don’t have dietary limitations that can make them sick. But trusting someone else to safely feed your gluten-free child? Help!

Trusting your kids with friends, family and babysitters

The most important thing you can do to ensure your children will be in good hands from a gluten-free standpoint is to educate the people caring for them.

You may want to look at Chapter 16 to find out how to talk with others and how to assess whether they really ‘get it’. If you suspect they don’t fully understand the diet or its importance, work harder to make sure they do or find a new carer. Make a clear distinction between coeliac disease and the allergic conditions that cause a severe, sometimes life-threatening reaction (anaphylactic shock). While you want others to take the situation seriously, you also want to avoid them becoming paranoid about ever having your child in their house.

When you leave your child in someone else’s care, try to bring or leave prepared food as often as you can and clearly mark on containers that the food is gluten-free. That prevents any mix-up between your child’s food and someone else’s.

Sending your child to school

Because they’re away at school for several hours at a time, day after day, sending gluten-free children to school is one of the biggest challenges you face. Here are some tips:

• Educate the teachers, first-aid staff, canteen manager and principal. Not only will the staff be better prepared to deal with your child’s diet but, chances are, they also have other kids at the school on a gluten-free diet, and those kids will benefit too.
• Give the teacher a stash of treats for your child. Nothing’s worse than finding out at the end of the day that it was Addie’s birthday and your son ate nothing while the other kids smeared cupcakes all over their faces. Bring a container of biscuits or lollies that the teacher can store in a special place — even gluten free cupcakes that can be stored in the staff room freezer — for your child in case of a surprise party or an event that involves treats.
• Be aware of craft time. Play-Doh and homemade playdough made using standard flour has gluten in it and although kids aren’t supposed to be eating it, most can’t resist having a nibble or two. Other crafts involve gluten-containing cereals and those activities often become a matter of ‘one for the necklace, one for me . . . one for the necklace, one for me’. Remind the teacher about this from time to time. Also let the teacher know gluten-free alternatives are available — for example, making your own gluten-free playdough isn’t hard and, if your child is a nibbler when doing craft, gluten-free pasta shapes can also be used. Offer to donate these items if the teacher seems reluctant.
• Work with the canteen staff. Buying lunch even once a week may be a big deal to your child. Something about standing in that queue is cool. Most canteen staff or parents are willing to work with you to find ways your child can eat at least one meal each week. You can take in a loaf of carefully labelled frozen gluten-free bread or mini-pizzas and ask staff to use these for your child’s lunch. Include a cardboard reminder note about avoiding contamination in with the bread.

Volunteering at the school canteen regularly lets you see how the system works and where possible changes or alternatives can be proposed. This can help alleviate the stress about your child buying food at the canteen and also gives an indication that you support the work done.

• Beware of the eating exchange. Swapping food in school lunches is very serious business. Kids get right down to it, swapping egg salad for cheese sandwiches or bananas for biscuits. Tell your child it’s not safe to swap — even if a bigger child tells you it’s okay for you to eat. Swapping food isn’t allowed in most schools — ask your child’s teacher to talk about it with the class from time to time, explaining in general that some of their food isn’t safe for other children. Kids are far more likely to cooperate if given a reason for the rule.

Coeliac Australia provides new members with the Kids’ Handbook, which is full of great suggestions. They also organise Christmas parties and other functions for children.

Gearing up for school camps

Feeding time at the zoo has nothing on mealtimes at school camp: Put 40 or 60 or 120 over-excited kids in a large dining hall, ask them to queue up with their plates as kitchen staff dollop out meat and veggies, or get monitors to serve the food. Staff have little time or scope to cater for individual choice, and shy or uncertain coeliac kids find it really hard to speak up to get what they need. Many teenagers would sooner have a tooth pulled than draw attention to themselves, or stand out in any way. A frazzled teacher who isn’t aware of the need for gluten-free meals may order a child back in line, or dismiss them with a dogmatic, ‘Not now, Maya. I’ll talk to you later’.

You’re getting the idea? School camps are tricky and careful preparation is essential. Finding out as much as possible about the camp prior to your child attending can give you and your child peace of mind. Make an appointment before the camp with your child’s teacher, to explain the seriousness of the situation. Ask the teacher who will be responsible for overseeing your child’s special diet and who she should talk to at mealtimes to find out what has been prepared for her — will it be a member of the kitchen staff, a teacher or a parent assistant? Go through the procedure with your child so she knows what has been arranged. Make one of the teachers or a parent assistant your ally in this, so someone is looking out for your child during the feeding frenzy.

Ask the teacher or camp organiser to find out from the camping venue what’s on the menu, or make your own enquiries. When you know what’s available in the way of gluten-free bread, pasta, pizza bases, biscuits and so on, you can then let the school know what extras you will provide. Pack a few gluten-free items for the teacher to hold onto — for example, a pack of gluten-free biscuits, loaf of bread and a box of cereal — and make sure your child has plenty of her favourite snacks, so she won’t feel deprived if she has to miss out on other things.

Fact sheets for school camps are available for camp organisers from your state branch of Coeliac Australia. These sheets include information about gluten and where it’s found, catering for those on a gluten-free diet, a few kid-and-camp-friendly menu suggestions and recipes, and details of a few gluten-free suppliers in each state.

Guiding Your Gluten-Free Teens

You can’t push a teen any more than you can push a rope. By the time your kids are teenagers, the best you can do is hope that you’ve laid a good foundation and are still able to guide them in the direction you think they should go.

If your teen is newly diagnosed, the teen years can be a scary time for him. He’s already going through many changes, and adopting a gluten-free lifestyle is one change that he may think will cast him way beyond being different and into the realm of being downright freaky.

If your teen has been diagnosed, even if that diagnosis happened years ago, you may see her evolve from one who was very accepting and easygoing about the diet into one who fights it a little and may even cheat from time to time.

All these responses are normal, if any definition of the word ‘normal’ applies to teenagers. You should handle these reactions with patience, understanding and communication on both sides.

Noticing changing symptoms

Now you see ’em, now you don’t; sometimes kids’ symptoms seem to do a disappearing act during their teenage years. For some, the symptoms do go away — at least temporarily. At this point, they may be tempted to devour a pizza. They think that because they don’t feel symptoms, they’ll be okay.

Not true! In fact, the whole thing is just an illusion. Although your kids may not feel the effects, the gluten can still cause damage.

For others, the symptoms evolve into those features more characteristic in adults — headaches, fatigue and depression, for example. These teens, too, sometimes think their symptoms have disappeared, because what they used to associate with eating gluten — diarrhoea, for instance — is no longer their typical reaction. They may not realise the headaches they get, or other symptoms, are also signs of their gluten intolerance.

Understanding why teens may cheat on the diet

We cover the topic of cheating and being tempted to cheat on the gluten-free diet in Chapter 18. But teens are a different animal and they sometimes cheat or want to cheat for different reasons. By the time kids become teens, parents really can’t stop them from putting something in their mouths.

Teens may want to eat gluten because of:

• Peer pressure: This is the time when peer pressure is at its peak. Even if their friends aren’t pushing them to eat gluten (they don’t usually do that), your teen may just want to be like everyone else and be tempted to cheat on the diet.

Kids love to proclaim how they want to be unique, but they really don’t want to be different, and this diet may make them feel different. Don’t be surprised if your teen orders a burger with a bun just to be like his friends.

• Rebellion: Your teen may be tempted to eat gluten as a way of being rebellious. Even if she doesn’t tell you about the incident, she may subconsciously be exerting her control.
• Curiosity: A child who’s curious about what gluten tastes like may actually have more restraint than a curious teen. Even if your teen’s been diligent about following the diet for years, he’s most likely to succumb in the teenage years.
• Weight control: Some teens figure out that if they eat gluten, they may not be absorbing all the available kilojoules and cheat on the diet to lose weight.

Watch for signs of eating disorders in your kids. Sometimes they become obsessed with their restrictions and take them too far — or they use gluten as a means of losing weight. Address this issue immediately, because eating disorders are extremely serious issues.

So what do you do about your tempted teen? The best you can do is talk calmly. Remind her that even if she doesn’t feel the effects of gluten, it’s still doing tremendous harm to her body.

Helping teens after they move out

One of the hardest things for teens to handle, especially if they’re new to the gluten-free lifestyle, is moving out. Many young people move into share-houses or flats where life is so exciting that food becomes something that is only thought about when hunger pangs start to bite. The fridge in your average share-house is usually inhabited by little more than dangerously out-dated milk, pizza crusts and unidentifiable blobs of furry goo in various stages of decomposition. Even if parents have prepared their teen with basic cooking skills and the need to keep a regular stock of healthy supplies, things can go awry as ravenous flatmates raid the stash or devour leftovers before you can say, ‘Noooooooooooooo!’

Talk to your teenager about ways of educating flatmates about gluten and why it’s important not to eat someone else’s gluten-free supplies. If flatmates are supportive, many of the shared meals could be made gluten-free. Often students struggle financially and the added cost of gluten-free products puts extra strain on an already stretched budget. We’ve included some easy-to-prepare recipes in Part III that will help young cooks with small budgets and little time for the kitchen.

If your child lives on campus and has to eat in dining halls, encourage him to contact the dining services office or the food service manager to discuss his dietary needs. He may need to provide his own gluten-free soy sauce, for instance, or otherwise modify what’s served. In colleges where students do their own catering, lock-up cupboards and fridges are provided.

An electric rice-cooker is a great idea for a student as almost anything can be chopped up and tossed into a bowl of rice as it’s cooking. Suggestions for meals in the microwave will appeal too — they’re quick and easy to prepare.

Food packs are sometimes the next-best thing to being there. Think about sending some gluten-free goodies in time for exams, or just to say, ‘I love you’.