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

Yes, the cancer risk is true. As is risk of osteoporosis (but maybe that’s just us women) and neurological conditions such as periferal neuropathy.

Following as we are awaiting an endoscopy appointment through for our 4 year old, had a terrible experience so far! First of all an 8 month wait following ‘probably positive’ blood tests, managed to fast track it and was told at 9am yes he has it, 4 hours later they called back and said no he needs further tests so currently 3 weeks later sat in limbo waiting.

some great advice on here which I will certainly refer back to if we need to!

it certainly sounds like you can positively engage him with the baking interest! Wishing you luck

Check if you can get GF foods on prescription in your area, OP. Glutafin and Juvela will send out taster packs for the newly diagnosed in prescribing areas. You can pay for their products (you cannot tell the difference with cakes made with their flours!) , but if you enjoy baking then Mulin Caputo Fioreglut flour is what I use for making pizza etc. And pizza is what seems to be easiest to get when eating out. Fioreglut is not cheap, but it’s fantastic for home baking breads.

DD was diagnosed at 12 so she knows and misses all the stuff she can’t have, like McDonalds with her friends (that would be what I wouldn’t be bothered about!). You can get GF McDonalds in the Netherlands & other EU countries, just not in the UK. I always stock up on GF foods when we’re in mainland Europe. But things are so much better than they used to be.

It a good idea for you, DH and any other DC to get tested as well as celiac quite often runs in families and it can be silent.

The range of gluten free foods available to buy has greatly increased over recent years. There are plenty of gluten free baking recipes online and even if a recipe isn't gluten free, there is often information on how to substitute gluten.

Even as a seasoned baker and long time coeliac, I find the loopy whisk recipes look amazing but have a very long list of ingredients and are a bit daunting. I repeat everyone’s recommendation for Becky Excell (who isn’t actually coeliac but does eat gluten free), and also Laura Strange - Laura has a great website, and I think has a gluten free household and cooks with children so would be a good resource for you.

Feel free to message me. My ds was diagnosed in may and while we are still occasionally caught out by stuff, we've more or less adapted now. He wasn't unwell per se. Went to hospital with suspected appendicitis and high temp and ended up being diagnosed.

It still damages the vili, so you end up with malabsorption. It's very very bad.

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Before he starts high school, make sure you have a word with whoever teaches food technology. He will need alternative ingredients and a seperate area to prepare/cook from.

DS went GF recently due to intolerance (non-coeliac gluten intolerance). It's been super easy tbh - he is 7yo. He was happy when we explained as he had been having tummy aches and anxiety as a result of the intolerance so we framed it as "this should help you feel better again!"

DS likes a lot of beige food too. Pizza, pasta, sandwiches. I just buy the Gf varieties now - Tesco and all the supermarkets (except Aldi, Lidl) have so much choice now. We typically get a Gf frozen pizza, some Gf pasta and a dolmio stir in sauce, gf sausages, and bread on our usual Tesco delivery each week.

Bread - Genius brand is much much better than others. Also the Warburtons sourdough gluten free loaf is super squishy and not as dry as usual gf bread (genuinely looks feels and tastes like normal bread). All available at Tesco.

Frozen aisle does all usual kid stuff in gf eg. Fish fingers.

Eating out - McDs and the like don't do gf sadly. Pizza express is great for gf though.

It's honestly pretty easy these days. I was gf about 9yrs ago due to intolerance and it was far harder then.

Hi @CharacterEncyclopedia - I have a 10yo DS diagnosed as coeliac age 8 following +ve blood test and OGD. He is a silent coeliac and only ever showed “real” symptoms after eating weetabix (my DD is very coeliac so we were all tested and that’s when we discovered DS was also).

Pizza Express are fantastic with GF. Download the Coeliac UK app (you may have to pay for a subscription, I can’t remember) and there are lots of options in shops; own brand crisps are usually fine (always check the label), and my DS loves the Nomo cookie chocolate bar.

Promise bread is OK and the Old Elpaso tortilla wraps are amazing; my DC love these as we found a lot of the GF wraps and breads were vile.

He will get used to it but my words of advice are to always pack him up food when he goes to a party; you’ll likely find people have no clue what foods contain gluten and you don’t want him missing out. It does suck being coeliac, but it is manageable.

@BookSuperWorm im sure McD’s fries are gluten free, as are their plain beef patties? I get these for my DC (both coeliac) when they go to a party. DH had a look and we were told / read up that these options are GF. Correct me if I’m wrong but I’m sure that’s correct?

Everyone's given you great advice on brands although there's a bit of try it yourself e.g. PP said genius bread is the best and I think it's the worst! Personal preference I'm sure.

What I will add is when you go away or plan to eat out you need to research a place in advance, call them and mention coeliac and see what they say, and prepare him in advance if e.g. he can't have the chips.

I'm 29, was diagnosed about 5 years ago and the only times I'm truly grumpy and sad about being coeliac are holidays, eating out with people I don't see super regularly (because I have to do all the research and dictate where we eat even if it's someone else's birthday), and trying to get food on the go.

All of that is solved by research. Look at the menu, see if it mentioned e.g. gf. Call them and ask. Trip advisor you can search reviews for gluten or coeliac and see if any are there (don't panic if not, but it's a good sign if there are reviews positively mentioning it).

Self catering is generally best on holiday I'm afraid.

He's going to be upset and I'm nearly 30 and still get the "it's just unfair" pangs a couple of times a year five years in so don't expect it to be a rapid and permanent transition to being okay with it.

However everyone else is right in that cooking gf at home is actually remarkably easy once you get used to it!

The nosh gf baking book is good as well as the Becky Excell one (which was mentioned earlier).

Sorry in terms of actually telling him - maybe get some treats in so you can tell him then make sure he has stuff to eat after that he'll be pleased about and is gf?

In general anything that's supposed to be "stretchy" is the stuff that isn't great gf. Because the gluten is what gives the stretch! So bread, pizza to an extent, cake to an extent (shop bought anyway). Pasta, cookies, brownies etc are all fine.

Speak to coeliac uk, find your local group book in for the xmas or halloween party to meet other kids with coeliac

At 10 he can understand and coeliac uk have resources

Buy his own toaster breadboard and butter jam etc now and label to avoid cross contamination

It s a pain but not the worst diagnosis , he will feel better with the gf diet

And osteoporosis. A friend had ‘silent’ coeliac which was missed for years. She now has osteopenia (sp?) and has to have regular bone scans.

Yes, eating gluten generally make you deficient in a lot of things , I became severely aenemic and lacked other vitamems

Ossteopenia can be the precursor to osteoporosis, but having it discovered should mean she gets the calcium to stop it progressing. Mine has actually improved to a degree

Yes they are, I order just minus the bun, easy enough to pack your own.

My 18 yr old dd was diagnosed a month ago. It's been easier than we all expected. I've been cooking alot more healthy food from scratch which I'm viewing as a good change.
Another one to recommend the Becky Excell books.
We joined coeliac Uk family plan, wasn't too expensive and we've all got an app so we can scan foods in the shops, gives you a quick answer if foods are safe although not every brand is listed.

Yep, definitely planning to go GF as well as it seems a bit cruel otherwise! Though his siblings and I will have to keep eating gluten (out of sight) till we have been tested to avoid false negative results.

@CharacterEncyclopedia yes I think it varies between trusts, but also because my DD is so young (and it was detected incidentally, rather than because of symptoms) the GP mentioned that she was quite borderline, so they'd need to do an endoscopy to know for sure.

Thank you all so much, am feeling a lot less hysterical now after reading these messages xxxx

I am very worried about the costs; I did do a shop earlier with lots of GF foods to sort of 'prove' he can Still Have Nice Foods (Tesco has a GF version of Krave cereal!) but OMFG the bread is so expensive 😖 apparently you can get some stuff on prescription!?

Although we do enjoy baking I don't do a lot of cooking from scratch due to my own health issues; this is something which I think I will have to change.

DS' siblings are autistic and have quite limited diets (and DS seems to have some autistic traits) so am just hoping that they are negative when tested. Confusingly the consultant said "autistic behaviours" can reduce if an autistic person goes GF; wish I had asked what she actually meant when she said this but I was in shock after getting the news and it didn't occur to me to query this!

I love the idea of meeting up with other coeliac children, I will definitely do this.

Pasta, cookies, brownies etc are all fine

They really aren't. Unless they are intentionally made to be Gluten free, they're very much off the menu.

(If I've misread the post and you weren't saying that standard pasta/cakes/cookies are safe to eat, I apologise)

It will all be OK. As others have said join Coeliac UK and all the Coeliac/Gluten Free facebook groups you can find.

You should get an endoscopy to confirm damage and then follow ups with a nutritionist that will help you both a lot.

The whole household do not have to be GF - you need a separate toaster and GF shelf (top one) for pizza’s, jacket potatoes though. And separate butter dish. Separate jam etc. You can also buy toaster bags for toast on holiday or at a friends. You will also be washing your hands and wiping down sides a lot, but you’ll get used to it.

Stick to GF pasta throughout the house though, it’s too easy to get confused.

Eating out and on the go is so much better these days, but it does take a bit of planning and the ever present GF oat/protein bar in your bag. There’s so many great options but make sure that his GF treats are his only. It’s very depressing if someone has eaten all the GF biscuits when they have other options.

GF Hobnobs though… better than normal hobnobs!

It seems so overwhelming to begin with and it is a bit of a shock, but you will get used to it, and it will be OK.

And I’d take him out for the Coeliac breakfast of champions…. Which only Coeliacs are allowed obvs… McDonald’s sausage and egg muffin (but no muffin) between 2 hash browns…. Oh yeah! Makes it all worthwhile!! :-)

I've just been diagnosed with it at 61. I'm properly pissed off.
I dont eat replacement foods because they are very processed and full of sugar. I just stick to rice and potatoes instead. Lentil bread is nice and easy to make at home. Healthier too.
Nearly every cafe round here sells gluten free cake so there is no reason to go without.

@CharacterEncyclopedia In regards to the autistic behaviours comment- I am autistic (diagnosed as an adult) and discovered I can't eat gluten before I discovered I was autistic. If I am glutened then I meltdown or shutdown quicker, find myself getting overloaded quicker, am short tempered, etc if I am glutened. My understanding is that its the autistic persons body's response to the internal inflammation and illness caused by eating gluten that causes the problems, so the persons ability to self regulate is reduced, meaning that the negative sides of autism, eg meltdowns and so on, are more likely as they are already uncomfortable and unwell.