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

On the plus side, he's just got into bake off. That means he's likes recipes. He's going to want to have good cooking skills to cope with being a coeliac.

There are plenty of good recipes out there. You have a lot of experimenting to do.

On the plus side, chocolate isn't off the menu.

Subway do a good gluten free sub my sons favourite, sushi can be gf aldi do nice gf tempura chicken and sausages. Bisto finest gravy is gf. We didn't all go gf due to cost and have a gf are in the kitchen for him which we found easier. Mcdonald no bun is also a favourite.

Just beware barley malt extract which is ina lot of chocolate!

If the siblings aren't gluten intolerant or coeliac, I would keep them on normal bread etc- much cheaper, and tbh probably less processed, as well as nicer- cutting out gluten if not intolerant can mean you miss out on things like folic acid, and can also mean eating a lot more sugar as many gf foods have more sugar instead of flour!

I have been a ceoliac for over 30 years and I was quite traumatised how the consultant told me. Great news we’ve discovered you have a life long condition and can only hope at certain foods.
I would actually introduce slowly - don’t mention ceoliac yet - say doctor said to try a gluten free diet and see if that helps symptoms and when established then drop the bomb shell all his favourite foods are off the table.
you could make it fun to create his favourite foods as gluten free.
I am a silent ceoliac.

Could you frame it as good news and a bit of an adventure?

So DS the docs have found out why you've been so Ill and there is a cure to make you feel totally better! It will mean some changes so we are going on a shopping quest today to find all the things that won't make you ill.

Then take him to a massive supermarket with a good gluten free aisle and let him go mad - whatever he wants.

I don't think there is any need to break the news about Macdonalds immediately. Ease him in and then speak to him about it when it becomes relevant.

Also - I'd suggest the whole family going gluten free for a while to help him feel less singled out. Once he has come to terms with it you could swap back

I wouldn’t try to reframe it as good news. It’s likely to feel like a lie. Or at best glittering a turd.

Adjusting to a diet where you can never properly eat your favourite foods again, other than as inferior GF versions, and that makes eating out harder is not going to ever feel like good news.

The feeling better and being healthier aspect is positive, but it comes with a big downside.

It may be better to acknowledge that it’s crap and unfair that he has coeliac disease, but focus on all the things that are gluten free that he likes, and working with him on finding the GF alternatives he likes. There are some cafes and restaurants that do good GF stuff. It can feel quite exciting when you find a new one.

I don’t think my DS will ever not be a bit annoyed he’s got coeliac disease. But he is pragmatic about it - and does recognise that not eating gluten is better than the alternative for him.

He’s accidentally glutened himself a couple of times and really hated it. He didn’t have gastric symptoms to be diagnosed (joint pains and migraines instead) but now he’s been GF and his gut has recovered, being glutened results in a lot of vomiting.

His health is better. It wasn’t until he had been on a GF diet too that we realised how tired he used to look all the time. He’s also grown so much more - you can see the correction on his growth charts from the not as tall as he should be trajectory to now. His consultant was really pleased about that and, over time, these are the things that have helped him to feel better about the GF diet. He does recognise it’s important, if inconvenient.

I wouldn’t make the other kids go gf if they don’t need to be especially if they’re autistic and have restrictive diets already. Sadly in the overall population your ds will be different and will have to accept others eating stuff he can’t eat. He needs to get used to checking labels, etc as he’ll need to do this out of the house.

dd was 16yo when she was diagnosed though so guess she could understand it better. You need to think about school dinners if he has cooked meals rather than pack ups. I’ve seen many threads here over the years where schools cross contaminate kids.

the autism comment is interesting. There’s a lot of talk that coeliac disease and autism as well as adhd and elhers danlos syndrome and POTS go hand in hand. Dd has the full royal flush! 🙈

Yes that was within the context of explaining which gluten free things tend to be worse due to the lack of gluten to give them stretch! For the avoidance of doubt no, don't feed your child non gluten free version of the above.

Also the BEST thing I've found that helps is knowing other people who are coeliac. You don't feel so alone and weird and there's a few people where if they offer your dinner or a snack etc you don't have to check if it's safe and despite it being completely second nature to check - it still gets wearing. So if you can find anyone (PP mentioned coeliac UK do kids halloween parties?) and keep in touch with them, have them for dinner etc, I'd highly recommend.

Also I think I agree with people saying don't present it as a good thing. I was relieved to have an answer and a way to stop the bloating and pain but it still isn't a GOOD thing and it feels like a lie if someone says that to me!

I've just realised where the ambiguity in my previous post came from - when I was saying bad/fine, I meant in terms of "whether they seem like decent replacements to someone who's grown up with gluten containing foods" NOT how "bad" they are in terms of gluten levels. Any gluten = bad for a coeliac.

Sorry if that wasn't clear. Too many years as a coeliac means I do have a bad tendency to assume people know what gluten is in - which is totally unreasonable as I had no idea at the start!

Also on the expensive bread front - yep it sucks. It's also almost all better toasted (but you can't toast it in a toaster that's been used for standard bread - you can grill it as an alternative). I basically buy it occasionally as a treat. Topped rice cakes became my lunch for a while - or sandwich fillings mixed in with rice for the carbs. You end up with some slightly odd meals!

I would add to the bread side: I think it’s pretty much all horrible and it’s really ultra processed so not healthy. I buy cracker breads instead (like those quinoa ones), or gf oat cakes. Ingredients lists not as bad, and at least they’re “naturally” gluten free.

It sucks that gluten free bread is basically disgusting! But there are other things.

That’s something I’ve realised as a coeliac: I can’t have my favourite things again (I was a big bread person, really expensive gorgeous bread) but I have found other favourite foods. I don’t really miss bread anymore - that’s the absolute truth. I do miss the convenience of buying a sandwich when I’m out and about though!

Just to say that Ocado is your friend here if they deliver in your area. They have amazing gluten free options which taste way nicer than many of the options. Don't worry about pizza, all the pizza chains do gluten free bases as well as the supermarkets. In my opinion Spve Farm is best for flours and pasta.

I would be tempted to get some really tasty bits in straight away so he can see how nice some of the options are.

@flipperdoda There was plenty of context to make it perfectly clear, don't worry

@VisaWoes I'm trying to find out more about Ehlers-Danlos, please can you tell me how your daughter's diagnosis came about? What were the symptoms if you don't mind me asking? My daughter is GF, has been back and forth to the Gastroenterology team but no proper diagnosis yet, and they said they can't advise me on Ehlers-Danlos.

Sure. So Dd has EDS and so do I.

dd had her coeliac diagnosis already and it was me who suspected she had EDS. She would get a lot of chest pain and feel like something /ribs was dislocating. She’d complain of her toes popping out of place. Loads of ongoing gastro issues not resolved by going gluten free. Recurrent UTIs.

so I read about the beighton test and did that at home on her. She didn’t score for everything but did for some so I went to see the GP with her and said I think she has EDS. The gp asked if she can bend her fingers back which is one thing she can’t do and he was looking very unconvinced at me but I asked for a rheumatologist referral and he agreed. It’s generally them that used to make the diagnosis. So she saw a rheumatologist a few months later and got an EDS and POTS and fibromyalgia diagnosis in one go!

I was diagnosed more recently after putting my back out. Went to see an osteopath and within three mins of touching me he asked if I was hypermobile at all. I am, my knees and elbows can bend the wrong way. I don’t know why EDS hadn’t crossed my mind for me before. He said I’m very hypermobile in my lower back and pelvis and that my muscles “feel like EDS muscles”.

so I trotted back to the GP. There is a new toolkit now which says GPs can diagnose and don’t need to refer to rheumatology now. So I told him what the osteopath said, showed him my knees and elbows. Discussed other symptoms which now fall into place such as chronic tearing of tendons, back issues, ankle problems, bladder issues and the worst flat feet my podiatrist has ever seen and he agreed.

To be honest I’m not sure what good the diagnosis is apart from feeling like I have an answer to why I feel like I do, am in pain a lot! But there’s no treatment. Oh, one good thing since the diagnosis, my dentist has agreed to sedation for a tooth extraction as she now believes me when I say local anaesthetic doesn’t work on me!

DD was 8 when she was diagnosed. She was so happy because she finally knew how to stop the stomachaches and get healthy again.

Subway can't guarantee no cross contamination though.

@VisaWoes that's very useful, thanks. I'll have a look into the Beighton test.

@OneSmallPieceOfCheese good luck. Ime GPs don’t have a lot of understanding of it.

Thanks @DinosaurOfFire that makes sense re meltdowns etc. Xx

I bought sainsburys gf stuffing mix the other day and gf chicken gravy granules. Both are amazing.

Thank you @Dartmoorcheffy i will try those. Got some m&s GF gravy today which was way nicer than Bisto. Didn't even occur to me that stuffing usually has gluten in it, will remember this for Xmas! ☺

Since you are just at the stage of recognizing that chips fried in shared oil will have gluten contamination, I will mention that there is gluten hiding in many of the items in your refrigerator and pantry at the moment. Every single item needs to be reviewed. My doctor had me start the gluten free diet while we waited for the results because she was convinced they would be positive and i was really miserable so she didn’t want to delay. I was amazed at how many sauces and jarred items had gluten. I was very relieved when the test came back negative, though I ended up with equally difficult and restrictive allergies coming back positive once we did the right tests.