Be Bold, Speak Up: Our top tips for teens with coeliac disease
Being ‘different’ isn’t easy at the best of times – and it’s harder again when you’re a teenager and fitting in feels like the easiest defence mechanism.
Dealing with a condition like coeliac disease is a mark of difference, it’s true. But difference doesn’t have to mean isolation – and with a few tactics up your teen’s sleeve, living a gluten free life doesn’t have to come at the expense of living a solid social life. Share our tips and comments from CNZ Ambassadors Charlotte Moss and Samantha Richards below, on how to speak up and stay safe.
Share – but be aware
If you’re heading to a party or just hanging out with mates, bring along a dish that’s suitable for you to eat to share with the group. Maybe test a new recipe out, or try a tempting gluten free treat you’ve been eyeing up. But keep in mind that you should (politely) take a portion before everyone else – just to make sure you avoid any cross-contamination. You don’t want to risk being ‘glutened’ when eating your carefully prepared coeliac-friendly dish!
Consult with the cook
When friends – or their parents – are preparing a meal, make sure you have a chat about your needs beforehand. Most people are familiar with gluten free diets and coeliac disease to some extent these days, so should have some understanding – but make sure to be very clear that you’re not following a fad and that this is a serious condition for you.
Samantha suggests “Talking things through ahead of time will reduce your stress about eating out socially and will ease your host’s concerns about what’s safe for you to eat.”
Ask your host what different dishes they are planning on cooking, rather than simply advising them that you need to be gluten free is a good idea – as many people who don’t have coeliac disease won’t be aware of the different products where gluten could be hiding. You could even offer to provide alternative ingredients – like gluten free soy sauce or pasta – so that they aren’t put out and you can enjoy the same dishes as everyone else!
“You might also like to volunteer to bring something along to help them out – this way you can also ensure that you will always have something suitable to eat and you won’t go hungry!” says Samantha.
Master the art of the polite decline
Don’t feel pressured to eat something if you’re not sure about it. Politely turn it down, and explain what the issues are. If nothing else, it’s a learning opportunity for the other person – maybe they didn’t realise that soy sauce usually contains gluten, but now they can be aware for future cooking plans. If anyone is really pushy, you can always keep the cold hard truth card up your sleeve – most people will back off if you start describing stomach pains and diarrhoea in great detail!
“I think the most important thing about speaking up is for your health and being able to live your best life. I definitely used to get a bit fearful and embarrassed about coming across as a nuisance or even not being taking seriously when I asked if something was gluten free. But then, I would always think about how I really don't like being sick. The frustration I feel when I'm not functioning 100% always outweighs any feelings of embarrassment” says Charlotte.
As well as finding the right responses to get through events and outings, it’s good to have some other plans in place too:
Pre-game with a GF snack
If you’re not sure whether there will be food available that you can safely eat, make sure you have something to eat beforehand, just in case. Avoiding the temptation of unsafe food is a lot harder on an empty stomach! Stashing a few gluten free treats in your bag or pocket is also a good idea, so that you can have something to snack on while everyone else is eating.
Don’t be afraid to speak up when it comes to avoiding cross-contamination where food is being prepared or served. The same rules of thumb to protect you from gluten will be applicable to many other folks’ allergies and intolerances, so it’s useful for anyone to learn! Tips you can share could include things like ensuring kitchen equipment, utensils and chopping boards are washed after preparing foods containing gluten or wiping down surfaces properly after preparing foods containing gluten.
And you can take your own steps to be careful about contamination. If you’re bringing your own gluten free food with you, make sure it’s securely wrapped up and pre-seasoned, to avoid any unnecessary contact with unsafe surfaces.
Together we are gluten free for life
Even if there’s only one member of the family who is a coeliac sufferer, showing support and understanding is a really important part of managing the disease. But some people have access to different levels of support – and that’s where we come in.
Remember, friends and family are the ones who can really empower young people to find their voice and speak up for themselves – something both Samantha and Charlotte Moss feel strongly about.
Samantha says “That although it can be daunting when you are first diagnosed, ifyou embrace the gluten free diet and your new lifestyle you will feel so much better that you won’t be able to imagine a life any other way. I didn’t think I felt ‘sick’ when I was diagnosed, but retrospectively I was incredibly unwell and now I just feel so much better. Gluten free for life is a challenge but it is ultimately worth it.
Best piece of advice I could give would be speak up. Get your friends and family involved in your diagnosis. They genuinely will have your best interests at heart, and they will help you on your journey. Together you will end up talking about all sorts of things and in a way being coeliac will become more normalised. It will help you to find your voice and ultimately you will find it easier to speak up in other social situations.
One of the hardest things for me is being caught out. Being out without a food plan is really hard, and then when you’re hungry everything seems 10 times worse than it actually is. Being coeliac just means a little more planning. I will often have a snack before I go out anywhere, or carry snacks in my handback in case of emergencies”.
Charlotte also remembers well following diagnosis, that the thing that gave me the most confidence to speak up was my friends.
“They all took the time to understand what coeliac disease is and know how it impacts my health. In a lot of cases, my friends would actually ask the waiter for me to check if the food was GF and also tell them that I was coeliac. If I was having dinner at a friend's house they would always send me photos of the labels if they were ever unsure. This kind of support really meant the world to me and definitely gave me confidence about eating out but also made me realise that people do want to help.”
Our 2018 theme is ‘Together we are gluten free for life’ aims to raise funds to continue our work, across raising awareness, improving community support and care, expanding education and advocating for change to gluten free food standards.
If you would like to help Coeliac NZ expand our services particularly for our younger and teenage members please donate on our Give A Little page.
Or find out how to become a volunteer: www.coeliac.org.nz/get-involved/volunteer