Managing Coeliac Disease through Adolescence & Secondary School - Letting Go of the Apron Strings

(This is the seventh 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 Parenting Guide' on the menu bar).

In this section, I share some thoughts on managing Coeliac Disease through secondary school and adolescence. It's about independence, trust and letting go of the apron strings.

Adolescence - A Question of Independence & Trust 

The School Transition
Your child has made it through primary school and by 11 years of age, is (hopefully) largely confident with their Coeliac status and how to manage it. You think you've cracked it, then all of a sudden, you are faced with the transition to greater independence, both at school and beyond. When your child heads off to secondary school, your anxiety may initially increase. Many secondary schools are less 'local' and as the parent of a Coeliac child, you are not only faced with the normal transition to independent transport and a whole new and less-structured timetable, but you will also no longer have the same opportunity for contact and control, both because secondary schools work very differently and because your budding pre-teenager (if they are anything like mine) will want you to be less and less involved in their lives. Believe me (I've been there and have the relationship scars), when you try to set up arrangements for safe eating or send in 'special' gluten free croissants for the class 'French breakfast' which has been set up to test and practice language skills, your child may be mortified that you crossed the home-school divide and equally embarrassed that you have made contact with the organising teachers. I have learnt my lesson... I interfere at my peril.

Your secondary school 'grown up' craves independence and expects autonomy. Anything that interferes may mean all hell to pay. Anything which overtly highlights their 'difference' and which they don't control will knock their social confidence.

Thus, although much of what I have shared previously in the Primary School information applies to secondary school in terms of gluten-safety, unless your child has additional learning needs, then it is important (beyond initial discussion and form-filling around medical needs at the point of transition to secondary school) to allow your child to manage their Coeliac and food negotiations directly with the secondary school staff (if this is the way they want to play it). This may leave you feeling anxious, but the key word here is 'trust'.

Your child's independence and need to 'fit in' is becoming increasingly important and central to their psychological development. Parental interference and contact with school staff may increasingly backfire, causing arguments and tension that was never going to be helpful and just leaves you feeling confused, frustrated and increasingly guilty.

For children diagnosed at primary school or before, you have hopefully had time and given them ample opportunity to hone their gluten-spotting, safe-eating and 'interrogation' skills. For children diagnosed later, they will (hopefully) have experienced considerable health benefits from transitioning to a gluten free diet and may (also hopefully) be well-invested in eating safely to stay well. Either way, your job as a parent is to help and support your child towards being a coping, healthy, independent Coeliac adult, who goes out into the world without you.... The secondary school years are your next stage training ground and test lab.

Your best option for management, is to talk directly to your child about their health and Coeliac needs and to consider with them the best way of dealing with any Coeliac dilemmas or hurdles they face. If you think they may need your help to move things forward, offer this, but do not tread on their toes if they want to negotiate themselves around whatever it is. Check in with them to see how they got on and if they need further support, this can be discussed.

Having said this, there may be a couple of areas where you can think ahead and plan, as your child makes that all important transition to secondary school :

Lunches : Consider with your child whether they want to try the school canteen or whether packed lunches may now be a better option both for consistent nutrition and gluten-safety (the decision is likely to be driven by whatever their peer group does and may, as time moves forward, change from week to week, or even day to day). There is no right way forward here, but you need to settle on the starting point. If school dinners are the chosen day-time meal, then support your child (whether through agreed direct contact on their behalf, or guidance on how they can negotiate themselves) in making sure there is appropriate safe food available. Most canteens can offer baked potatoes, salads and even curries, casseroles and roast dinners which are potentially safe, but they have a lot of children to feed and (in our experience) their attention to detail and care around the risk of cross-contamination is less than predictable.

Miss GF has been 'glutened' on more than one occasion as a result of carelessness at the serving counter and whilst she is always quick to lecture lunch staff on the risk when she sees them using the same serving spoons for battered fish as they do for allegedly gluten free chips, she has paid the consequences one too many times and now uses the canteen with extreme caution. Whilst I would always prefer not to have seen my child in pain and discomfort as a result of gluten-impact, the lesson has been cemented and I am now confident that my child will be less willing to take the risk just because she wants what her friends are eating.

'The Chippie' : Whether you are in agreement with it or not, at some stage, your child will, with their new peer group, bond over a bag of cheap chips at the local chippie, often on the way home from school. Adolescents need a lot of calories and at 3.30pm when they are apparently 'starving', the chippie has a magnetic pull.

Make sure your child is confident to a) check with the chippie whether their chips are safe (See the section on cross-contamination 'chips') and b) to talk to their new friends about being Coeliac and finding a safe venue if this is necessary. Unfortunately (I think particularly with girls), the desire for popularity can quickly outweigh the need for food-safety, so keep a bit of a conversational brief on this one. I was lucky with Miss GF who transitioned to secondary school with a number of children who already knew about her Coeliac diagnosis and her new friends seemed equally understanding. She will now confidently tell the dietician about how she did a 'recce' of all the chip shops in the school town, quizzing each and every one about their cooking methods... and yes, I am truly proud of her!

Cookery Lessons - This is one additional area that requires special attention at secondary school, as (for the first couple of years at least), your child will be likely to take cookery and nutrition lessons as part of the tech curriculum. When viewing schools in Year 6 in advance of making our secondary choices, I admit I made a bit of a bee-line for the cookery department and was sure to quiz the cookery teachers on how they managed the need for gluten free cooking. Many were confident in being able to offer substitute gluten free flour and separate cooking stations (even if they didn't understand that for many recipes, a straight wheat to gluten free flour sub would not produce the same bake), but it is also wise to maintain regular discussion with your child about what they are cooking and when and to be sure that if any other potential substitutions are required, your child is able to talk with their teacher and prepare in advance. Cooking is an essential skill for your Coeliac child as they move into adulthood and failures now may dent their confidence considerably.

Although Miss GF's school provided gluten free flour, we knew that without extra egg/liquid etc, or an additional tweak to the recipe, the bake would potentially fail. Whilst she prepared in advance and discussed alternative ingredients where necessary, she would also go into class ready to negotiate for (or in her case, sneak) whatever it was that she needed to make the recipe work without gluten. In Year 7, one of her early cookery lessons involved making an apple cake. Armed with some tips and tricks and an already well-honed baking knowledge, she managed to sneak an extra egg from the front table and cobble together enough milk from her friends to make the best cake in the class. I have no doubt that without her wiliness, she would have made something akin to a crumbling brick.

However promising a cook your child is however, it may not be feasible for them to opt to take the subject at GCSE level. I'll be honest, this gets me really frustrated, but the reality is that the practical part of the curriculum which explores making doughs, pastries, etc, may place your child at a disadvantage (although we should remember it is still a small part of the course). On the other hand, had Miss GF been determined to take the subject, I would no doubt have dug my heals in and argued her case with the school, so if you are feeling it is the way to go, follow your child's heart. We need a few young trailblazers in the world and they should be supported to follow their gluten free dreams.

Cooking beyond the school classroom : Given how important good nutrition is to your Coeliac child, I cannot emphasise enough how important it is for them to feel confident in the kitchen and to think about the value of what they are putting into their bodies. At home, involve them in planning and cooking family meals (if you haven't done so before) and give them free rein to create and master the art of producing good gluten free food.

We have always tried to encourage Miss GF to feel confident in feeding herself and although we have had some near disasters (walking through the front door after work to find a panicked child and a frying pan on fire), she has also left me in no doubt that she has learnt much and can survive more than adequately when it comes to feeding herself (check out this roast dinner she cooked single-handedly and without warning after school one night, aged 12). Just make sure that your kitchen is equipped with a fire extinguisher and fire blanket for emergencies...

In negotiating the independence of being Coeliac in a non gluten free world, it is likely that an occasional mistake will be made and that, no matter how cautious they are, your child will at some stage, get 'glutened'. When this happens, don't be angry or blame them (or yourself). Try and work out where the 'glutening' may have happened (in an attempt to learn and avoid next time round) and support them through the inevitable 'unwell' consequences and back to confidence. This sadly may be part of their learning to make informed decisions.

The child who makes a conscious decision to eat gluten regardless of health consequences : This is a rare scenario, but unfortunately with adolescence comes (for some) increased risk taking, rebellion and an over-riding need to 'fit in' regardless of the consequences. If you become aware that your child is blatantly and deliberately flouting the 'no gluten' rule, talk with them calmly about your observations and concerns and try and explore wider potential emotional reasons for their behaviour. Some reassurance and time to think about how to tackle the base issue differently may be enough to set them on the right track, but failing that, make contact with your GP, Coeliac consultant or dietician for further advice. Coeliac UK also have some specific advice pages for teenagers and young adults and may be able to put your child in touch with a support network in your area. 

School Trips, Residentials and Foreign Exchanges and Visits
Although your child is growing up fast, school trips remain an issue of potential anxiety. With an increasing number of opportunities for trips abroad, whether foreign exchanges, ski trips or educational visits linked to subjects studied, it is likely that at some stage, your child will be out of sight for several days. Take a deep breath and let go of your control. Your child won't want to miss out on anything on account of being glutened and the last thing the staff need is a sick child as a result of their poor oversight, so you will (hopefully) have less to worry about than you think. This is the time to allow your trust to flourish and your child's independence to blossom. 

Of course it is important nonetheless, to ensure that staff leading the trip are completely clear on your son/daughter's Coeliac health needs and to check what arrangements will be made for safe eating, but as your child gets older (as with other aspects of food and health negotiation), it is important to be led by your child on how they want to share their health information or whether they need your help or support to do so on their behalf. 

When Miss GF wanted to book onto a Spanish exchange, we considered long and hard with her whether this would be fair on the partnered family. In the end we contacted the lead teacher at her school to talk through our worries and he reassured us that it would not be a problem. Ultimately (and we were prepared to 'drop out' at any stage if the dietary issue became insurmountable), Miss GF was partnered with an exchange student who's aunt was coeliac and the family had good knowledge of all the issues. Miss GF was well for the whole trip and had a fantastic experience, even bringing home new eating ideas and recipes.

As with family travel, it is always a good idea to send some gluten free staples (rolls/flatbreads/sandwich thins/crackers/biscuits, etc) with your child to wherever their destination may be, but don't be surprised when they come back unopened as they either weren't needed, or your child decided it wasn't cool for the other kids to know they had brought their own food. With Miss GF, it has usually been that they weren't needed, as she has generally been catered for safely, even if not always to her usual expected standard. Having said this, there have been a couple of occasions when she has found herself unable to source safe or palatable food and the packets of bread and crackers have been welcome. 

Equally, she was, on one occasion, 'glutened' accidentally as a result of her gluten free meal being confused with another child's dairy free dinner. In the confusion of seating one evening after a long day skiing, the girls were on the 'wrong' tables and thus got the wrong dinners. With the Austrian waitress and Miss GF clearly not understanding each other in an attempt to clarify the safety of the suspicious looking plate of food, Miss GF managed to ask her whether the meal was 'edible' (which I gather was less than obvious from it's appearance on more than gluten-containing grounds), resulting in some reciprocal offence. Either way, the pristine snow on the ski slopes the following day witnessed an unfortunate bout of vomiting as a result!

With confused communication in mind, it is definitely worth making sure your child has a couple of coeliac translation cards with them when they travel and that you encourage the wherewithal to keep them to hand at all times and to use them. I always protect them with a two-sided layer of sticky-backed plastic for durability.

Extra Considerations for Puberty and Health 

The adolescent body is greedy for nutrients. Puberty is a time of massive physical as well as psychological development, growth and change and with it comes the need for extra nutritional vigilance and greater awareness of the intake of (particularly) vitamins and minerals. 

Knowledge of the symptoms and longer-term health implications of undiagnosed and untreated Coeliac Disease (impact on physical and emotional development; delayed puberty; greater risk to some cancers; osteoporosis; fertility issues; chronic fatigue, etc) is something you may already be aware of, but it is also essential to be alert to signs that the body needs a little extra of something post-diagnosis and initial recovery, or of when additional support and medical oversight may be required. 

In the UK and providing your child remains under the care of a specialist paediatric consultant, they should be monitored on a yearly basis (or more frequently if additional issues are at any stage identified) and should be offered further oversight by a dietician. As part of assessment, it is normal to expect that your coeliac child will have their weight and height monitored to check growth and physical development.

From time to time, it will be expected that a further blood test will be carried out to keep an eye on anti-body levels as a means of monitoring potential traces or consumption of gluten. It also very importantly monitors the presence and intake of vitamins, minerals and other nutrients, to ensure that these remain at acceptable levels and that your child has not become deficient in any element that they need to continue to develop and function safely.

Calcium & Vitamin D intake
Of particular importance is the monitoring and intake of Calcium and Vitamin D. Vitamin D is crucial for both bone health and strong immunity and because of its additional necessary relationship to supporting the absorption of calcium in the body, if levels are low, your child's growth and development will inevitably suffer. Scarily, the development of bone weakness and Osteoporosis is silent until significant damage has been done, so attending health checks is an incredibly important part of managing the condition and none more so than for children and teenagers who are doing an inordinate amount of growing.

Puberty is one of the fastest growth periods any child will go through and if you add to this the need to sustain and support extra demands of school, sports and other activities, it is easy to see how quickly nutritional deficiency might set in. For all adolescents, adequate intake of Protein, Calcium, Vitamin D and Iron is essential, but for Coeliacs, it is crucial.

Prior to diagnosis, there is a particularly high risk of low Vitamin D and Calcium levels as a result of the gut being unable to absorb nutrients because it has been damaged by the yet-to-be-treated Coeliac disease. The gut should heal in time when following a completely gluten free diet, but Vitamin D and Calcium will always remain 'high risk' nutrients for deficiency with coeliacs. 

It is also important to be aware that there are other additional contributors to Vitamin D deficiency, which may make deficiency more likely. These include having dark skin; being overweight; living in a climate far from the equator where sunshine is less available; spending too much time indoors; and lack of (particularly) fish or dairy in the diet. You may have deduced from this list the importance of sunshine to levels of Vitamin D in the body. This is because our bodies actually make it when skin is exposed to sunlight. Regardless of how much sun-time your child has however, it is still necessary to ensure adequate intake through diet. If your child also has a dairy or lactose intolerance (dairy being a primary source for dietary Vitamin D and Calcium), you will have a double 'deficiency' whammy and this increases the importance of seeking alternative sources. 

How do I recognise deficiency of Vitamin D?
Of course, the aim is to try and maintain good levels of essential vitamins and nutrients to avoid risk of deficiency, however anyone with a teenager will know that keeping them nutritionally 'fuelled' can be easier said than done, particularly when they get faddy about food intake or start to skip meals because they are scared they will 'get fat', or because they are too busy with whatever it is they are doing. 

It is important to talk with your teenager about the importance of dietary intake in the light of their Coeliac diagnosis and if they are worried about drinking or eating full-fat dairy (for example), to explore with them alternatives to ensure the appropriate intake of the nutrients they require. I often actively consider future health implications with Miss GF too... the possible impact on her bone strength in later life, general health risks, possibilities of greater infertility, weak teeth (that we have just spent months straightening with brace-work), etc and this usually helps for a few weeks, even if we have to have the same conversation many times over. Ultimately, you are trying to support their understanding and ownership of looking after themselves. Health and nutritional awareness is a skill they will require for life.

Consuming enough Calcium through food is not the only way to ensure bones are strong and healthy however. Physical activity and exercise which is weight-bearing (jumping, jogging, walking etc) also plays its part, by forcing bones to work harder and thus build up greater bone mass. With this in mind, do all you can (and this counts for us adults too) to encourage a bit of PE.

However well you feed your child, it is also really important for you (and them) to understand the signs and signals that might indicate something is missing. With Miss GF (and despite our understanding and best efforts) we had a proverbial kick up the back side when she started developing muscle twitches and spasms aged 12, which turned out to be linked to low Vitamin D levels. Other signs and symptoms of vitamin D deficiency (some of which may be common to general adolescence as well) may include : 
Excessive tiredness
Succumbing to frequent illness and infections or having wounds that heal very slowly
Depression and anxiety
Bone pain and back pain
Poor growth
Hair loss
Bone weakness and fractures
Muscle pain

Bear in mind that some people with Coeliac Disease experience joint and muscle pain when they have been 'glutened' and therefore, it may be that some symptoms could be a result of consuming gluten. Either way, it will be important to clarify with a health professional and to consider all bases. If your child develops any unusual or unexpected symptoms, or experiences any changes that you are unsure of, take them to their GP in the first instance and/or discuss with their consultant at the earliest opportunity (do not wait for the appointment scheduled in however many months time).

Sources of Vitamin D and Calcium - How do I ensure my child gets enough?

Sunlight : I love the fact that the body is clever enough to make its own Vitamin D when exposed to sunlight and it is one source that should not be overlooked. However, the amount the body makes will be dependent on a number of things including how much time your child spends outside; the natural darkness of their skin (dark-skinned people will make less); what your child is wearing when they go out and how much of their skin is covered (do they wear trousers and longer sleeves?); and how much sunscreen they have on their skin to protect them from harmful rays. This last factor is a difficult one. Of course you want to protect your child from skin damage and long term negative effects of potential burning and harmful UV rays, but the benefits of the sunshine cannot be overlooked and a balance should be struck if possible. The advice that we were given from Miss GF's dietician when she was first diagnosed (and that we have lived by since) is that when the sun was weaker (earlier and later in the day), she should spend time playing/walking/doing sport/just chilling without any sunscreen for a while outside, to absorb the safest sunlight. 

Bear in mind of course that whilst in the UK and other countries further from the equator, the summer days will be perfect for Vitamin D production, the winter is another matter, due to shorter days, winter clothes and the likelihood of staying indoors for longer. It is no surprise that Miss GF's drop in Vitamin D came at the end of a long and chilly winter.

Food sources 
Some food (including some breakfast cereals and dairy products) may be fortified with Vitamin D, so it is always good to check packaging for details. Either way, there are many naturally available sources of both Vitamin D and Calcium available through the food that we eat :

Vitamin D (essential to helping the body to absorb Calcium) : can be found in eggs (yolk); oily fish (salmon, trout, kippers, sardines, pilchards); canned tuna; shrimp; fortified margarine, yoghurts, milk (including soy milk), orange juice and cereals; to a lesser extent - mushrooms.

Calcium : can be found in dairy milk, cheese, yoghurt and other dairy products; tofu and edamame; leafy green vegetables (broccoli; cabbage; kale etc (but not spinach)); nuts (particularly almonds); soya beans; baked beans; seeds (such as poppy, sesame and chia); canned salmon and sardines (where you eat the bones); amaranth; figs; tahini.

You will see that a number of sources are naturally dairy and lactose free, but it will be a good idea to check packaging to see what dairy-free milks, juices, etc are also fortified.

Supplements : During the winter months and for children who are dairy or lactose intolerant or vegan, supplements are absolutely worth consideration. However, as with all health-related matters, seek the advice of your GP, dietician or consultant about the best way to go for your child.

Last Word...

Given that this is a chapter about adolescence, I have no doubt that it will actually be your teenager who gets the last word, but for now, I hope that you have found this post helpful. As with all other sections of this Coeliac Parenting Guide, the post is based on our own experiences working with our daughter through the good, the bad and the ugly. If you have a different experience or other suggestions that can be added to the post, I would love to hear from you! 
Good Luck

Kate x

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