How do you navigate the Coeliac + Teen years? As Coeliac Children reach secondary school and move into adolescence, we face a whole new set of challenges. In this post, I share what we learned on our journey... And offer our best tips for helping the Coeliac Teen to flourish.
(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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The Coeliac + Teen Years – a question of independence and trust
Heading off to Secondary School is a ‘right of passage’ for kids… It’s the point at which their budding independence starts to feel real and the ability to speak their minds and challenge the world around them strengthens. It’s also often a challenging time for parents. But the Coeliac + Teen combination creates a whole additional set of health and social challenges. From the inevitable making of new friendships and re-explaining Coeliac diagnosis to new teachers, peers and parents… To negotiating how to stay gluten free and well at a time when both social life and body development make demands.
And your Coeliac teen is increasingly making their own decisions too… So, are you ready to ‘let go of the apron strings’ and give over the independence and trust that every adolescent craves?
Our journey from Primary school to (almost) adulthood has (I think) been fairly typical. Hopefully sharing what we learned here, will be supportive to some of you facing the years ahead. However, each teenager’s experience will inevitably vary to some degree. So, if you feel anything should be added, then please contact me.
The Coeliac + Teen Years – The Transition to Secondary School for your Coeliac Child
Preparing yourself as a parent…
Your Coeliac child has made it through primary school… By age 11, they are (hopefully) largely confident with their Coeliac status and managing their gluten free diet without too many hiccups. You think you’ve cracked it. And 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 significantly further from home. And as the parent of a Coeliac child, you are not only adjusting to the transition to trains, buses and a whole new and less-structured timetable, but also no longer have the same opportunity for ‘control’. Secondary schools work very differently to primaries… And your budding pre-teenager (if they are anything like mine) will want you to be less and less involved in their lives. Consequently, they will increasingly ‘baulk’ at any contact you may want to make with teachers and staff.
For children diagnosed at primary school or before, they have hopefully had time and ample opportunity to hone their gluten-spotting, safe-eating and ‘interrogation’ skills. For children diagnosed later, they are (hopefully) experiencing considerable health benefits from the change to a gluten free diet… And as a result, 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… One who is ready to confidently go out into the world without you…. The secondary school years are your next stage training ground and test lab.
The need for independence as a budding Coeliac Teen
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’, 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. And anything that 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 my post related to Coeliac Children at Primary School applies to secondary school in terms of gluten-safety, unless your child has additional learning needs, then it is important to start handing over the ropes. Of course, it is totally appropriate to be involved in the initial discussions with the school. And you will be responsible for the form-filling around medical needs at the point of transition. But (unless your child wants your direct support), it is important to gradually allow them to manage their Coeliac and food negotiations independently. 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 it is crucial to their psychological development. Parental interference and contact with school staff is frequently unwelcome and may increasingly backfire… Being teens (Coeliac or not), this can cause extra arguments and tension that was never going to be helpful. And it can leave you feeling confused, frustrated and increasingly ‘guilty’.
Talking to your Coeliac child helps them with confidence
It’s a fine balancing act. When children first head off to secondary school, they are still very young… But the expectations and peer pressure they experience once they change schools pushes them to grow up fast. And the desire to ‘fit in’ can quickly outweigh the assertiveness and confidence they need to challenge and stay safe… This is where talking really counts. Because talking with them will help gage their readiness and desire to ‘go it alone’… And it offers support in a way that helps them to feel in control without ‘losing face’.
So… talk directly to your child about their health and Coeliac needs. Chat with them about the best way of dealing with any Coeliac dilemmas or hurdles they face. What do they think is the best way to overcome a difficulty? What other ideas can you offer and share that might help them with their decision-making?
If you think they need your help to move things forward, it’s fine to offer this… But try not to ‘tread on their toes’. If they want and need to negotiate themselves around whatever it is, this is a great opportunity to learn and practise. After all, these are going to be important life skills… Just remember to check in with them to see how they got on. If it went well, brilliant! And if they need further support, this can be discussed.
The Coeliac + Teen Years – Particular hurdles to be aware of at secondary school
Of course, regardless of the budding independence of your Coeliac Teen and pre-teen, there are still some secondary school scenarios that can be planned for… The ‘givens’ that will have to be thought about and negotiated as part of the secondary school day. So, here’s where you can plan ahead and think (with your child) about the best way forward…
Planning for the Gluten Free Lunch…
Consider 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. Bear in mind that going forward the decision is likely to be driven by whatever their peer group does. And this can change from week to week, or even day to day. There is no right way forward here, but you need to settle on a starting point.
If school dinners are the chosen day-time meal, then support your child 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 gluten free. But supervision is likely to be less at secondary school. And because they have more children to feed, their attention to detail and care around the risk of cross-contamination is (in our experience) less than predictable.
Miss GF has been ‘glutened’ on more than one occasion as a result of carelessness at the serving counter. And while she is 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. She now uses the canteen with extreme caution. While I would always prefer not to see my child in pain and discomfort as a result of gluten-impact, the lesson has been cemented… She is now less willing to take the risk just because she wants what her friends are eating.
Whether you’re in agreement with it or not, at some stage your Coeliac child will (with their new peer group), bond over a bag of cheap chips at the local chippie. This will often be on the way home from school. Teenagers need a lot of calories… And at 3.30pm when they are apparently ‘starving’, the chippie has a magnetic pull.
So… Make sure they are 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 conversational brief on this one. Miss GF was fortunate to transition to secondary school with a number of children who already knew she was Coeliac. 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… I am truly proud of her!
Cookery lessons at secondary school
This is one area that definitely requires special attention. Why? Because for the first couple of years at least, your child will likely take cookery and nutrition lessons as part of the tech curriculum.
When viewing schools in Year 6 (in advance of making secondary choices), I would make a bee-line for the cookery department. And while there, would 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 potential substitutions are required, your child is able to talk and prepare with their teacher in advance. Cooking is an essential life skill for Coeliac kids as they move into adulthood. And failures now may considerably dent their confidence.
Although Miss GF’s school provided gluten free flour, we knew that without extra egg/liquid, or an additional tweak to the recipe, the bake would potentially fail. While she discussed alternative ingredients where necessary, she would also go into the lesson ready to negotiate whatever she needed to make the recipe work without gluten. In Year 7, one of her early cookery lessons involved making 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 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.
Coeliac Disease and GCSE Food Tech
However promising a cook your child is, it may not be feasible for them to opt to take the subject at GCSE level. I’ll be honest… This really gets me 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 Coeliac cooking trailblazers in the world and they should be supported to follow their gluten free dreams.
The Coeliac + Teen Years – Cooking beyond the school classroom
Given how important good nutrition is to your Coeliac teen, I cannot emphasise enough how important it is for them to feel confident in the kitchen. And just as important, to think about the value of what they are putting into their bodies. So, when 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 always tried to encourage Miss GF to feel confident in feeding herself. And although we 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 cook more than adequately. (Check out this roast dinner she cooked single-handedly and without warning after school one night, aged 12). Just make sure the kitchen is equipped with a fire extinguisher and fire blanket for emergencies…
For gluten free recipes that might help inspire them, check out our Gluten Free Recipe Book Index.
The Coeliac + Teen Years – They’ve been ‘glutened’! What now?
Negotiating being an independent Coeliac teen in a gluten-filled world, means that an occasional mistake is likely. And no matter how cautious they are, your child will (at some stage) get ‘glutened’.
When this happens, try not to feel angry or blame them (or yourself). But do try to 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 Coeliac teen who decides to knowingly eat gluten regardless of health consequences
Although this is a rare scenario, adolescence unfortunately comes (for some) with increased risk taking, rebellion and a completely 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. Bear in mind that anger won’t help (however upset you feel). And try to explore any wider potential emotional reasons for their behaviour. Reassurance, understanding and time to talk about what’s going on 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.
The Coeliac + Teen Years – School Trips, Residentials, Foreign Exchanges and Visits
Although your Coeliac teen is growing up fast, school trips remain an area of potential anxiety. At secondary school, there are an increasing number of opportunities for residentials and trips abroad, whether foreign exchanges, ski trips or educational visits linked to subjects studied. And it is likely that at some stage, your child will be out of sight for several days.
It is (of course) important to ensure that staff leading any trip are completely clear on your son/daughter’s Coeliac health needs… And to check what arrangements will be made for safe eating. Be clear about what to expect if there is a ‘gluten incident’ too.
But then… It’s time to take a deep breath and let go of the control. This is one time when your child won’t want to miss out on anything on account of being ‘glutened’. And the last thing the staff want is a sick child as a result of their own poor oversight… So, you will (hopefully) have less to worry about than you think. It is an opportunity to allow your trust to flourish and your teen’s independence to blossom. And if there is a ‘gluten incident’, it will be managed.
When Miss GF wanted to book onto the Spanish exchange, we discussed long and hard whether this would be fair on the partnered family. It helped to contact the lead teacher (with Miss GF’s permission and oversight of the email) and we were reassured 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 had a Coeliac aunt. So, the family had good knowledge of all the issues. She was well for the whole trip and had a fantastic experience, even bringing home new eating ideas and recipes.
Taking back-up snacks and staples
As with gluten free family travel, it is always a good idea to send some gluten free ‘back-ups’ with your child to wherever their destination may be. We’re talking rolls, flatbreads, sandwich thins, crackers, biscuits, etc. But don’t be surprised when they come back unopened or get binned either because they weren’t needed, or your child decided it wasn’t cool for the other kids to know they had brought their own food. Having said this, on the couple of occasions when Miss GF found herself unable to source safe or palatable food, the ‘care pack’ of bread and crackers have been welcomed.
Mistakes may still happen – Celiac Translation Cards can help!
Of course, whatever reassurance and careful planning you achieve, bear in mind that mistakes can still inadvertently happen. So, it’s worth talking through contingencies with your child, based on expected symptoms following an incident.
On one occasion, Miss GF was accidentally ‘glutened’ after her gluten free meal got confused with another child’s dairy free meal. It was an oversight resulting from seating confusion after a long day’s skiing. The two girls were apparently not sitting at their designated tables and thus got the wrong dinners. With the Austrian waitress and Miss GF clearly not understanding each other (and in an attempt to clarify the safety of the suspicious looking plate of food), Miss GF managed to ask whether her meal was ‘edible’. Lost in translation, this may have caused offence and was not necessarily understood as ‘was it a gluten free meal?’ Either way, the following day, the pristine snow on the ski slopes witnessed an unfortunate bout of vomiting!
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. They are super-useful and explain in the local language the basics of Coeliac food safety. Just make sure you print and cut to a transportable size… And be sure to protect them with a two-sided layer of sticky-backed plastic for durability.
The Coeliac + Teen Years – 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 a greater awareness of the intake of (particularly) vitamins and minerals.
Knowledge of symptoms and longer-term health implications of undiagnosed and untreated Coeliac Disease is something you may already be aware of. But it is also essential to be alert to signs that the body might need extra support following diagnosis… Or, of when additional medical oversight may be required.
In the UK (providing your Coeliac child remains under the care of a specialist paediatric consultant), they should be monitored on at least a yearly basis. They should also be offered further oversight by a dietician. As part of assessment, it is normal to expect that they will have their weight and height monitored to check growth and physical development.
From time to time, a further blood test is likely to be carried out to check anti-body levels as a means of monitoring potential traces or consumption of gluten. But blood tests also (very importantly) monitor the presence and intake of vitamins, minerals and other nutrients, to ensure they remain at healthy levels. It is essential to check that the Coeliac teenager doesn’t become deficient in any element they need to continue to develop and function safely.
Calcium and Vitamin D Intake for Coeliacs
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 it also supports 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 important part of managing Coeliac Disease 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 that children 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 Coeliac teens, 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 due to damage. The gut should heal after diagnosis with a completely gluten free diet, but this will take time. However, Vitamin D and Calcium will always remain ‘high risk’ nutrients for deficiency.
Other factors impacting Vitamin D levels
It is also important to be aware that there are additional factors that may make Vitamin D 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 a 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 there is also has a dairy or lactose intolerance (dairy being a primary source for dietary Vitamin D and Calcium), there will be a double ‘deficiency’ whammy. And this increases the importance of seeking alternative sources.
Talking with the Coeliac Teen about diet, deficiency and health
Anyone with a teenager will know that keeping them nutritionally ‘fuelled’ can be easier said than done. This is particularly problematic when they get faddy about food, they start to skip meals because of worry they will ‘get fat’, or because they are simply too busy with whatever it is they are doing.
It’s therefore important to talk with your Coeliac teen about the importance of a healthy diet in the context of Coeliac diagnosis. And if they are worried about drinking or eating dairy (in particular), 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 spent months straightening with brace-work), etc. This usually helps for a while, even if we have to have the same conversation many times over. Supporting their understanding and ownership of looking after themselves is a key focus. After all, health and nutritional awareness is a skill they will require for life.
How do I recognise a deficiency of Vitamin D?
However well you feed your child, it is nonetheless important to know and recognise 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. These 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
- 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’. So, piecing together symptoms isn’t always straight forward. And it is therefore important to seek advice from health professionals 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 and/or discuss with their consultant at the earliest opportunity. Do not wait for an appointment that is scheduled in several months time.
Sources of Vitamin D and Calcium – How to ensure your Coeliac Child gets enough
I love the fact that the body is clever enough to make its own Vitamin D when exposed to sunlight. And this is one source that should not be overlooked. However, the amount the body makes will be dependent on a number of things. This includes 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.
The question of sunscreen is a difficult one. It’s essential to protect your child from skin damage and the long-term negative effects of potential burning and harmful UV rays. But the benefits of sunshine cannot be overlooked and a balance should be struck if possible. The advice we were given from Miss GF’s dietician when she was first diagnosed (and that we have lived by since) is this… When the sun is weaker (earlier and later in the day), spend time playing/walking/doing sport/just chilling for a while outside and without any sunscreen, to absorb the safest sunlight.
Bear in mind of course that for countries further from the equator (such as the UK), the opportunity to benefit from sunlight will be seasonally variable. While summer days will be perfect for getting out with skin exposed, the winter is another matter. Shorter colder days, winter clothes and the likelihood of staying indoors for longer periods means less opportunity to use the sun for Vitamin D. So be particularly alert during winter months.
Food Sources of vitamin D and Calcium
Some foods (including some breakfast cereals and dairy products) may be fortified with extra vitamins and minerals. So, it is always good to check packaging for details. But natural ingredients should provide the bulk of what is needed… And there are many naturally available sources of both Vitamin D and Calcium available through the food we eat…
Vitamin D (essential to helping the body absorb Calcium) can be found in
- eggs (yolk)
- oily fish (salmon, trout, kippers, sardines, pilchards)
- canned tuna
- fortified margarine
- milk (including soy milk)
- orange juice
- to a lesser extent – mushrooms
Calcium can be found in
- dairy milk
- yoghurt and other dairy products
- tofu and edamame
- leafy green vegetables (broccoli; cabbage; kale etc (but not spinach))
- nuts (particularly almonds)
- soy beans
- baked beans
- seeds (such as poppy, sesame and chia)
- canned salmon and sardines (where you eat the bones)
A number of these sources are naturally dairy and lactose free. However, it’s a good idea to check packaging to see what dairy-free milks, juices, etc are also fortified.
Consuming enough Vitamin D and Calcium through food and sunlight 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. Exercise which forces bones to work harder helps to build greater bone mass. With this in mind, do all you can (and this counts for us adults too) to encourage a bit of PE.
During the winter months and for children who are also 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 options and products for your child.
The Coeliac + Teen Years… Last Word
Given that this is a chapter about the Coeliac + Teen Years, I have no doubt that it will be your teenager who actually gets the last word… But for now, I hope that what we have shared provides some support and reassurance. As with all other sections of this Coeliac Parenting Guide, the post is based on our own experience of working through the good, the bad and the ugly. If you have a different perspective or other suggestions that can be added to the post, I would love to hear from you!
Good luck and take care