HELP - telling my 10 yr old he's coeliac

[CharacterEncyclopedia]

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

I don't know how you tell him, bit as someone who shops frequently for GF friends, I can say it's getting easier to buy stuff. They have special bread, pasta, PIZZA, cakes etc. and the only way you'd tell is because it's kept to one side for her.

Presumably he knows he's been unwell? I'd start from there.

You know you've been suffering with X and we took you for blood tests. Well the results have come back and said you HAVE something called celiac (can you avoid the d word?). (Emphasis on you have not you are). It's something we can deal with between us, WE just need to make a few changes about what WE eat. You can't have something called gluten which is found in lots of carbs
Thankfully it's easy these days to buy foods which are gluten free. I've already got some pizza in the freezer / bread / biscuits in the tin etc.

Give him time to come back with questions (what about when we all go to Maccies? What about Joe's birthday party? etc) and accept he might rebel and sneak foods . All you can do is outline why he shouldn't and make them not available in your home for a while.

Best of luck

Surely if he's coeliac then gluten makeshim I'll?
Not as hard to cut out a food that makes you ill as it is for any other reason.

I'd tell him that the doctor has found out why he's been so poorly and that there's a lot of stuff that he can't eat anymore, but luckily there is still a load of tasty stuff he can still have

I assume he has been suffering years of pain etc.
Surely it would be "brilliant news - the doctors have figured out why your tummy hurts all the time" and start researching gf foods with him, cooking with him. The range of gf foods you can get in supermarkets and takeaways/restaurants has massively got bigger in the last few years. Most fish and chip shops even do a dedicated gf day.
My friends son used to get some foods free on prescription so if you are entitled to that claim it.
I am sure many of his friends also have dietary restrictions - whether medical (allergies, diabetes) or lifestyle/religious reasons. It's very unlikely he will be the only child in his circle that can't eat certain foods.

you set the tone, so be positive about it when you tell him. I know that feels impossible but you’ve found out he had a condition that if untreated could have stunted his growth, damaged his digestive system etc. We all eat gf at home so no cross-contamination and seems ‘fairer’. We also provide our ds with gf cakes and biscuits for parties as people do get confused and we’ve had accidents that way. If he likes baking, The Loopy Whisk site and book is excellent. There are loads of good resources online too - maybe browse coeliac uk together. Once he’s been gf for a while, he’ll probably feel awful if he gets glutened so it becomes easier in a way - our ds doesn’t want to eat gluten now as he remembers how ill he felt.

Well it’s good he likes baking because he can still bake and the more stuff you can make yourself the more variety you will get. I find Dove gf flour fine for cakes and biscuits and generally just do a straight swap for ingredients. The becky excell books are good.

pizza is a bit harder. Dd never found any ready made stuff she likes. So now we make our own bases and the only flour we have found for this is caputo gluten free pizza flour in the brown bags from Amazon.

eating out can be tricky, parties and stuff. Most chain restaurants know what they’re doing. Always ask about cross contamination. The amount of independent places which say they sell gf and gf that but use the same pot of butter, or the same grill, or pizza oven is crazy.

Yes what @Needmorelego said too. He’ll be far from the only one with some kind of dietary requirements - our son finds that reassuring and often lists off what his friends can and can’t have if they are coming over

Yes I love PP's approach of this is actually great news as the problem is effectively solved.

Be careful not to make it a massive deal, keep it breezy- it's pretty easy to be GF these days. Loads of instagram and TikTok content for GF recipes.

Food on the go is the biggest challenge. Download the ‘Find me gluten free’ app. Buy all of Becky Excell’s books, her recipes are easy to follow and are brilliant. Give her a follow on Instagram or Facebook too, because she posts lots of new GF products in supermarkets and always does a run down of what each supermarket has that’s GF in the run up to Christmas.

Not everyone with coeliac is noticeably ill, some people are 'silent coeliac' where the damage is internal and goes unnoticed.

@CharacterEncyclopedia Becky Excell's GF books would help, she's the queen of GF baking/cooking, her FB group is fab and lots of advice for parenting coeliac kids in there.

As other have said you frame it as a positive health wise.
There are lots of good GF brands out there and it's so much easier eating out.
Both my DC are coeliac, and it was harder for my older DS to adjust.
Shopping is difficult at first because you notice all the things they can't have, but over time you get used to it.
My top tip would be don't get carried away in the free from aisle, a lot is it is over processed and not that nice. Stick to naturally gluten free where you can.

I assume that he's aware that he was tested for possible allergies. I'd start with explaining the blood test results.
I also assume that there were reasons why he was tested for coeliac. I'd explain that a gluten free diet would stop that from happening.

It is going to be hard for him- he's at an age where he might go out with friends and want to go somewhere like McDonalds and like my son, it wouldn't surprise me if he pushed a boundary and occasionally ate gluten anyway but this is sadly his reality.

It's going to take time to work out which gluten free stuff he likes but I guess you could channel your inner bake off judge and debate which wrap (or whatever) gets first place. Gluten free flour works great for baking so I would pop out to the shops and sort that out.

My sympathies it’s really hard. My child found out at a similar age and it was tough. There are better options but it’s still a pain. It’s especially hard at things like parties. My child generally doesn’t like standing out and being different to everyone else. I have had to accept some anger and mourning from them over it but they are slowly coming to terms with it. Finding other coeliac friends has helped.

Not necessarily he could be a silent coeliac my dh was when he was diagnosed after seeing Dr's about something completely different. He was mr beer and sandwiches so was devastated.

It will be hard and require planning and gf food like treats are expensive so does need an element of planning but he will adapt. The comments about cheating are right it's not worth it. I do feel sorry for younger people with it in terms of "being different" from friends we have a friends daughter who is 14 now and gf for last 3 or 4 but her friends are very understanding.

Good luck op

Second Becky Excell’s book. She has a whole section on Fakeaways! I really feel your pain. I’m coeliac and I worry about one of my kids developing it at some point.

Well, he's going to know that he hasn't been well, isn't he?

It's great news, the doctors have found out exactly what's causing it and all you have to do is avoid having it and he'll feel much better.

It's gluten, something that's found in wheat, barley, rye and a lot of preprepared foods/things in packets, so it means having to change some meals a bit (and everybody in the family will change so there's no chance of accidentally getting some in his food - it's easier to be wholly gluten free than it is to prevent cross contamination or watch somebody else eating what you want in front of you).

GF pasta is really easy to use - the Garafaolo brand is almost indistinguishable from normal pasta in texture, taste and cooking. Pizzas are less good, but still absolutely edible - and making your own is the easiest way to ensure safety and getting them as near to how he likes them as possible. Corn wraps are nicer than wheatflour ones anyhow. The M&S Free Froms are pretty good.

Baking means learning different ways to make things to avoid the gluten in normal flour.

As he already likes baking/cooking, you've got something he can become an expert in.

It'll be annoying about the no MaccyDs or birthday cake that isn't specifically GF, but that can be got around.

And no, there is never a day off. The first time he gets glutened once he's stopped being poisoned on a daily basis will make it clear that he can't 'have a day off' being Coeliac.

My top tip would be don't get carried away in the free from aisle, a lot is it is over processed and not that nice. Stick to naturally gluten free where you can.

Agree with this ^^ Ds gravitates towards naturally dairy free stuff like Oreos and Jaffa cakes so he can feel normal and doesn't have to advertise his allergy.

Pasta and pizza are the easiest to cater for GF , there are a whole load of gf frozen pizzas and all the large chains do gf pizza / pasta . M&S do a passable pizza and garlic bread . Most supermarket gf pasta is fine , you can get old El Paso tortilla wraps . When shopping don’t just look at the gf section , many sauces etc are gf but stay away from ‘May contain ‘ items . My daughter was diagnosed at 10 ( 14 yrs ago) and it was much harder then . Birds Eye do a very nice gf chicken nugget and M&S also do good gf goujons / coated chicken . Bread and biscuits are down to individual taste , we use Schar white for toasties and Promise white for sandwiches etc .

Should have said sorry, eating gluten has not made him unwell in the sense that he has lethargy, constantly has a cold etc. The reason he went to the doctor was that he got tummy ache and diarrhea occasionally, when he was three or four. She said he had constipation but didn't check for coeliac as 'he doesn't look like a coeliac child; he's not thin, he isn't wan and floppy, he doesn't have those big dark circles coeliac children always have' (this is pretty much verbatim!). He was prescribed Laxido to stop the constipation. He only went back to the children's hospital as his dad was worried being on Laxido long term would cause health troubles. If he doesn't have Laxido he does do horrible, very smelly and big poos. But he doesn't have any other health troubles and when he has Laxido his toileting habits are normal.

Thank you - I will check out the loopy whisk. He doesn't generally feel ill at all, he plays lots of sport etc and is quite active generally. But I suppose he might feel even better if he cuts out gluten!

My daughter has had two positive blood tests for Coeliac and she is having an endoscopy soon to confirm. She has absolutely zero symptoms, it flagged up in blood tests for something else (which she thankfully doesn't have).

She's seven, I feel very stressed about it. We've told her some information but I don't think she understands (or can understand) the magnitude. I don't want her to feel 'other' (especially at parties and whatnot), but I realise that that is me projecting.

Lots of people are silent coeliacs, it doesn’t always make you feel ill but over the long term can cause your body damage.

I think DS is pretty much a silent coeliac. I know I have mentioned his toilet habits but when he has the Laxido he's absolutely fine.

Thank you for all the replies ❤

We have decided that the whole house will go GF as that seems fairer and also the doctor was saying you can't use the same knife for GF bread as normal bread and I think that keeping 2 separate knifes, ovens etc. will be ridiculously hard work.

Thanks for idea of keeping it positive, rather than a sad thing.

@luter thanks for the idea of not being too focused on the Free From aisle; my instinct would be to go there and just buy everything 😅

I am coeliac and was diagnosed as an adult because I wasn’t a classic coeliac child. Or adult really. Brain fog was the main symptom for me but I think I assumed everyone felt that way?! I certainly didn’t know how to describe it as a kid or even a young adult.

But it’s gone now and I can’t believe how well I could have felt my whole life.

It wasn’t easy cutting gluten out at first, but I’m used to it now.

I think you tell him that he has a cure for the colds and the tiredness, and it’s this. It’s really important that you never give him gluten, it could make him very sick in the future.

Get into the Bake Off baking - do it gluten free. Nut flours are delicious. Nigella has some amazing gluten free cake recipes. Get a bread maker and make your own GF bread. Bring your own cupcakes for him to parties (my non-coeliac ds doesn’t really eat the cake at parties anyway - too busy!!).

It’s probably not going to be easy at first, but it will get easier and the difference it will make for his health is immense.

There are so many gluten free ingredients available easily now. My dp is gf and I cater for lots of gf clients.

GF spaghetti tastes no different to non gf. Waitrose does really nice gf bread. Loads of gf cakes are easily available too and every major supermarket has a pretty decent gluten free range. Saisburys is really good.