HELP - telling my 10 yr old he's coeliac

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Any advice gladly received. DS's doctor called me and said he's tested positively for coeliac; he's had 2 blood tests both saying he has it. Are there any good resources out there?? He loves his food. His favourite food is pizza and he likes pasta too. He loves cake and biscuits; we were just getting into Bake-off and usually start baking around this time of year. How do I sit him down and explain this to him?
He's going to be devastated.
He's a smart and inquisitive child so I can't dumb down the explaination too much. I think it's the fact that he can never have gluten-containing foods that's going to upset him, not even as a one off (I asked the consultant about this, e.g. birthday cake at a birthday party, or a happy meal if we were in town but she said no exceptions at all). He hates feeling different to other children (our family set up is unusual and he is embarrassed about it) and this will also set him apart.

I know that there are GF options available for ingredients such as GF bread and pasta but ready-made, food on the go will be difficult. Thank you x

There are tons of resources out there. Firstly join coeliac uk, they have loads to read and links, including one for children. As someone else has mentioned look up Becky excel, my partners family use her if they are making food for me, you don't have to buy her books (although they are good) as she posts recipes online. There is even a gluten free magazine

Treat it as an adventure for you both to discover what is out there.especially for reading labels which hopefully will become second nature

Easiest change is flour, this is great for normal cooking where other ingredients don't actually contain gluten. Baking can be a bit harder but there are special ways,to remedy that.

Pasta -_easily bought, Pizza a bit harder as the bases aren't often as nice, you can even order gluten free pizza from takeaways.

Most supermarkets have free from sections including marks and sparks but even in 'ordinary ' isles there are gluten free items. Including ready meals and treats , sandwiches can be bought but better to make your own. Avoid burger king as their chips are coated. Otherwise order a burger without the bun,
Most restaurants do gluten free menus.

Hopefully some of that helps

Honestly be straight. Your body can’t cope with gluten , it’s a sort of allergy like x ( relative / friend is allergic to eg cats etc.
you’ll feel better / have less colds / more energy what ever , when you don’t eat it. Long term your body will be healthier . I know you like eating wheat based foods but gluten free ones are easy to get for people like you - we can pop to Tesco and see what they’ve got. We can start experimenting with gluten free baking too. Let’s watch the gluten free week bake off on Saturday maybe.

And off you go.

eating out everywhere has gluten free choices. It’s mainstream really. Just different.

Also think broadly. Chinese food is pretty much gluten free anyway as long as you go rice / rice noodle bSed. ( obviously check with the restaurant / takeaway ) . Same with good Indian food with rice.

Largely - but soy sauce contains gluten! So that’s a big one to watch for in Chinese food. You can buy tamari, which tastes the same, but don’t rely on restaurants using it.

Excuse the naivety but if you have no symptoms why would you need to cut out gluten? Surely silent coeliacs could just carry on as normal?

A lot of silent coeliacs can't believe how well they feel once they are gluten free.

He and you may just think he is well with a bit of constipation but it is likely he is going to feel a lot better without the gluten and you will both be surprised at what you thought was normal.

Because it can cause cancer

Hi OP, I'm a Coeliac, my DC is a Coeliac and it looks like my GC is as well. I won't lie, it's not always easy, though of course you get into your own routines etc. One of the hardest things about it is dealing with other people, eating at their houses, going for meals out with them etc, so I'd have some strategies in place to deal with these situations. Be polite but firm - far too many people mean well but don't really have a clue (as sadly demonstrated on every MN thread where Coeliac Disease is ever mentioned). It's more complicated than most people realise, but you'll get the hang of it.

If it ever helps you can tell your son about me some time. I was horrendously ill throughout my teens with my Coeliac Disease, it really was hell, but I wasn't diagnosed till I went to University and had a different GP. I didn't go on a gf diet till I was 19, at which point I put on a late growth spurt. As a result of this I bear several ill effects. I'm several inches shorter than I "should" be, with a big curve in my spine. I have had very bad problems with my knees over the years- I have bits missing where there ought to be bits, and bits growing where they didn't oughta! 🤣. Not what you want for him!

It's great you've found out about it now so he can grow strong and healthy, he'll have a much happier and healthier life. I send him my best wishes. x

PS if you can, start saving to take him to Spain or the Canaries. He can go to McDonalds there and order a gluten free burger complete with a bun. 😊

Good luck!

Yes it still causes the same damage to your body, it’s just that your body isn’t telling you in a really obvious way. I think I once read that a big % of bowel cancer patients had coeliac and didn’t know it. Can’t remember where I read that or how correct it is though.

We found out our 8yr dd was coeliac earlier this year...we told her the news as good news as we had found out how to stop her feeling sick everyday. We investigated breads etc together. The pasta is so similar I can't tell the difference (although months down the line there is a clear preference from her for sainsburys free from). It has taken a while to find breads and bread products she likes and it is much better toasted. Pizza bases and pizzas are readily avaliable. She is thrilled that she no longer feels sick and so is never tempted with gluten containing products. There is so much 'regular ' food that is naturally free from. Also cook books for cakes etc. Juvela has a lovely brownie recipe which we all eat. Good luck, it does get easier and they feel so much better!

I’m not coeliac but still GF due to digestive issues.
I agree it will much much easier to have the whole family GF.

I think what also helps is to not think ‘can’t do this because can’t have gluten’ but to make positive choices instead. I’m going to have traditional buckwheat pancakes today! (They just do happen to be GF).
Im going to try some traditional Indian recipes for bread - that so happen to be made from lentils/chickpeas flour rather than wheat etc….

Esp if he likes cooking/baking, there is so much out there that is traditionally GF rather than ‘made the be GF because … can’t have gluten’ iyswim.

And on thé other side, many products are now GF by design. Pasta in particular - made from rice (Doves is excellent), hello pea etc…. They are very similar, don’t look different and will help him look ‘like the others’.
(on the other side, products labelled as GF are usually disgusting and actually quite unhealthy)

Well, as long you avoid soy sauce (wheat), light soy sauce (wheat), dark soy sauce (wheat), a lot of hoisin sauce (wheat), dim sum, prawn toast, vegetables seasoned (as it'll be with soy sauce), some fish sauce (Squid brand is OK), seafood dishes (including mussels as they're often purged with non GF oats), anything with batter or crumbs, vegetarian alternatives, crispy beef...

Chinese/Japanese (careful of miso as it can be made with wheat or barley and seaweed is frequently seasoned with soy/wheat)/Korean (watch Gochujang)...

Easy to make GF at home, though, as you'll use Tamari instead of soy sauce, only get wheat and barley free miso, etc, etc. But I wouldn't choose it for a restaurant or takeaway.

Eating out isn't as simple as you'd think, as not even a portion of chips is OK.

But cooking at home isn't a problem - it's the instant/quick/packet foods that are the issue.

Sorry to hear about your daughter 💐 agree age 7 probably won't appreciate the magnitude. I am probably projecting a bit too. Interestingly the doctor I spoke to said that they don't need to do endoscopies anymore. Maybe it varies between NHS trusts?

Thank you this is very helpful. I will look at Coeliac UK. Xx
Useful to know about Burger King, had thought chips would be OK.

Jesus! That's scary. A friend mentioned cancer but I thought she was just talking rubbish!

European paediatric guidelines are if over x level on blood test don’t need an endoscopy. U.K. refused to adopt them for years, then covid hit and suddenly most trusts did……some will want two blood tests. 2018 I was arguing with my local trust trying to avoid an endoscopy for Dd but they wouldn’t diagnose without it……and it was an 8 -12 month wait!

And the cancer risk is true.

We take gluten free buns (Warburton's soft square rolls) to McDonalds and order on the screen so we can delete the bun.

You get the burger and all the bits in a box with a fork and do a self assembly. The fries are gluten free anyway.

Domino's do an acceptable gluten free pizza, as do morrisons.

Pizza express and Bella Italia all have gluten free options.

You soon get to know which local takeaways have gluten free nights or do decent gluten free options.

We cook pretty much everything from scratch but some cheats -

'white' lasagne sauce in jars is quite often gluten free as it uses maize rather than wheat and can be used to make anything requiring cheese/white sauce.

'Flava It' flavour sachets do great flavouring for chicken legs/spare ribs etc (we get them from morrisons)

Gluten free lasagne sheets and spaghetti are indistinguishable from the normal stuff

Jus Rol gluten free pastry is acceptable.

Most supermarket own brand sausages are gluten free

Most hot dog sausages are gluten free

I was diagnosed with Coeliac Disease 10 years ago just after my son. I'm a silent coeliac and haven't felt any different since going gluten free.

Being gluten free is a massive change and your son is going to be miserable about it from time to time so I wouldn't advise being too breezy about it. I still hate it after all these years, the main problem is the constant reminders of what you can't have.

I'd advise joining some Facebook groups to get the most up to date information as things do change eg once you could eat most Thorntons chocolates, now they're a may contain so you can't. It works both ways though and its great when you can suddenly eat something you thought you would never have again. The Facebook group "Coeliacs eat out too UK" I would really recommend. Some restaurants are particularly good for gluten free like Pizza Express and Nandos. He can still have Maccies too though will have to bring his own bread roll.

I guess my main advice is to be ready to be sympathetic when you tell him as he likely will be upset. Also get as much info as you can as there are lots of naturally gluten free foods - and I don't mean vegetables, I mean Twirls, Creme Eggs, Pop Chips, nearly all Haribo, most Magnums etc.

It’s a lot easier than it used to be. Even in the 5 years since DS was diagnosed, it’s become easier to find things when out.

You can still do gluten free baking with him - there are lots of SM channels that do GF stuff. I make GF waffles at home regularly and they’re really good. I just substitute GF flour and some xanthan gum.

It might be a good idea to treat the readymade GF products as a challenge - let’s find the best GF rolls/bread/etc. DS very much has his own ideas about which brands are best. It’s quite personal, I think.

Out and about, Italian restaurants are often good for GF (counter intuitively). DS likes burgers in lettuce wraps instead of bun (for example, five guys do this and he loves it). He thinks Pizza Hut GF is much better than domino’s.

Even going abroad is getting easier. We learned this year that Tui Blue resorts will properly cater for coeliac disease in AI. I think holiday village resorts do too. And some other brands.

I've bee GF 25 years now, and I won't lie, sometimes it absolutely sucks - bread is never the same (it can vary from rancid to ok as toast), theres a lot of OK pasta but it isn't the same at all. And sometimes you will go somewhere and there will be nothing safe to eat. Thats the downside for sure, and the loss of just easily going along with friends/family and being able to eat whatever you like without thinking has to be mourned.
OTOH, when I was diagnosed, after 2 weeks I felt better than I had in years - and so many things I thought was just me, or how things were for everyone went away.
But it is hugely easier than it was, I had McD yesterday (no bun, double burger so I could sandwich the bits between them. For breakfast I get two hashbrowns and a double sausage and egg mcmuffin with no muffin and put the hashbrowns on the outside). We have Dominos, I travel the world for work, get fish and chips for tea (only a Friday or Saturday but hey). CD doesn't stop me doing anything but it does take more thought

My DS was diagnosed aged six, he didn't feel ill but after he went GF he felt so much better, his tummy didn't hurt anymore and he grew again. He's 16 now and the growth aspect keeps him on track, he's keen to reach his potential height by being GF. I'm sorry your son has to deal with this, kids hate being different. I was diagnosed just before my son and when they did my biopsies they found a rare duodenal cancer, maybe not related to being undiagnosed for a long time but who knows. Everything I cook for all five kids is GF

I’ve been through this exact thing recently with my 10 year old.

First of all, realise that he WILL go through a period of being upset and that is ok. You both need to be prepared for the fact that there will be times when he will feel left out e.g when someone brings cake to school, when his friends go to McDonald’s and he can only have a bun less Big Mac etc. Just let him grieve for the fact that food/social-wise, things will be harder. This may be his first experience of life ‘not being fair’ but this is a great chance to teach empathy and resilience - for him to learn that there are lots of other people around who have illnesses and difficulties and he is not the only one.

Second, empower him to make his own food choices and advocate for himself. Coeliac uk has great resources for explaining the mechanics and biology of Coeliac disease. Ensure he has a list of ingredients he is not allowed. Send him to the shop with sweet money and let him practise checking ingredients/buying himself sweets. Find out which takeaways and restaurants he can eat at locally and try them (if you have the money right now). If you have any holidays coming up, look up places you can eat. Don’t shy away from the ‘difficult’ situations. You want to teach him that with the right knowledge and ability to advocate for himself he can still enjoy food in social situations.

Third, make it fun. The fact that he likes baking is great. You now have the chance to buy some new bake wear and try lots of different recipes (honestly, most cake recipes are just a straight switch to gf flour and baking powder).

You will probably both have some emotional ups and downs about this over the next few months but you will find your feet! Some good may even come out of it - my dd eats a much more varied diet now she is gf as we took it as an opportunity to experiment. She has also found others who can’t have gluten just from talking to her circle of school friends and existing adults in her life.

Try Rhian's Recipes blog/site, they are all gluten free (and vegan, but if you wanted to un-veganise them, you could if appropriate).

You find things very easily now on a gf diet.

There are many foods which are naturally gf

Are you going to go gf with him? it’ll kind of suck if you’re having stuff that ls gf in front of him, if there’s no alternative.

It’s new to you, so the panic is understandable but you’ll both take to it quickly, i’m sure. All the best

I have coeliac and so does my daughter - there are amazing GF foods , I was diagnosed when I was 35 and so I’d had all the regular foods and was dreading it but I literally can’t tell the difference with some things (Schar are really good !) some things are more expensive that’s the only issue