Coeliac child lying about food

[BrassyLocks]

DS has been hiding and eating food not suitable for coeliacs. Meanwhile I'm spending a fortune on gluten free food, taking him to medical appointments, letting him miss important stuff because he has unexplained stomachaches. When all the while he's been hiding snacks under the bed and in his school bag. I confronted him gently but he lied, and keeps lying. I've said I know it's hard for him (he was diagnosed aged 10 or 11, and is now 13) and that I'm prepared to buy whatever gluten free alternatives he likes. But he must be truthful with me.

I don't know where to go from here, as he just won't admit it even though the evidence is right there. How can I make him understand that this is not ok? How do I ensure he won't carry on buying these things after school? This morning I took his money away. Hes' going to want to fight me every morning for it.

I wonder if his medical team might be able to support you in addressing this. It might be that a clinical psychologist is able to help? I think it is not uncommon for teens to be non compliant with medical treatment around this age (lots of reports in the context of diabetes especially).

Can you explain that it's to ensure he grows properly? At 13 his friends will be shooting up in height and if his body isn't absorbing food because his intestines are flaring with reaction then he won't grow as he should.

I think because he isn't very symptomatic, he maybe doesn't accept how harmful it is 😢He's finally admitted it, but my trust has been broken. Somehow we fell through the net and haven't had any support from the hospital so I've been managing his condition on my own. But at a recent appointment the doctor was surprised and has ordered various tests and an appointment with a dietitian I hope. He's a good height and weight at the moment.

I just don't know whether to get mad and punish him or be gentle and understanding when I keep finding all these empty wrappers in his bag, under the bed, etc.

No point shouting at a 13y/o, they just stick their heels in.

Privately be furious and mad at him. Outwardly, help him find the things he can eat, peanut puffs , what ever they sell at the shop he and his mates go to. Fitting in is more important than some fairly symptomless issue (in his eyes).

He should definitely be under a consultant, are you just between appointments? Does he not get ill?
If my daughter is glutened she is incapacitated for 4 days- abdominal pain so bad she can’t think of anything else, migraines, feeling faint, nausea and diarrhoea. She starts to feel more human by day 5 but remains ill for 7, then a fir a few weeks after that her mood really dips.
If your son is still eating gluten his bowel will not recover. He must be really tired as he will be very malnourished and iron deficient as his villi will be flat and unable to absorb nutrients.

Are you sure about his diagnosis? It just seems odd he still eats gluten and isn’t under a paediatric gastrointestinal team.
If his diagnosis is certain and he is ignoring it, have you considered being brutally honest and explaining how he will have malnutrition, anaemia, short stature in the immediate term and get osteoporosis and cancer when he is older unless he stops.

Damn that is a hard one.

I now find most of the food that I have allergies or intolerances revolting because I have such strong negative associations with it. I get wistful for the idea of it, but when it is put in front of me, I can’t imagine why I bother missing those foods because they are just disgusting.

if he isn’t experiencing strong symptoms, the pull of just wanting to feel like a normal kid instead of an oddball is going to be hard to ignore.

I think rather than yell, I would just be more ally try to help him find as many substitutes as possible. That means helping him find junk food he can pick up when his friends are getting treats.

He wants to be able to pop into a shop with his friends and buy a snack just like them. Figure out smarter choices he can make, even if they are empty calories.

I use an app in my country try to help me find safe food. It lets me scan barcodes and I get a stoplight symbol for how likely the food is to be stage. I don’t know if there is a good equivalent for the UK, but I would look for one because it’s really useful and would probably appeal to a teen. The one I use that isn’t uk based is called Fig.

There are plenty of gf alternatives for chocolates / cakes and loads of places that do nice gf brownies and cakes like Sponge , not cheap but very nice . What is it that he is mainly buying ?

He has what's known as silent coeliac. It was discovered by chance and neither of us believed it at first, but it is definite.

He is registered with the paediatric gastro team at the hospital, but until 2 weeks ago we never had a face to face appointment.

Though it's 'silent' we were told that once you cut gluten out he may become more sensitive to accidental glutening. I'm now thinking of all the times he has had stomachaches and terrible migraines and wondering if he's been sneaking gluten snacks all along.

I'm finding kit kat and oreo cookie wrappers, both of which have gluten free alternatives🙁

The app sounds fun, I'll see if one is available here.

In terms of explaining the health consequences to him, it's hard because he is a good weight and height at the moment, so he can't see the problem. When I first tried to show him a picture of the gut he was disgusted and refused to look. I can try again, or maybe leave it to the dietitian when we get the appointment after the bone scan.

By the way, does anyone know a tasty bread brand available on prescription? He likes Glutafin, not Juvela, but the Glutafin is getting monotonous and doesn;t have an unsliced type. I tried to order a different one but the pharmacist couldn't get it from their supplier. I don't understand exactly but it seems hit and miss with regards to what's available where. I'm in England.

The best bread is Promise but I doubt it’s on prescription , we never got prescription stuff even when my daughter was a child . Tesco do very good gf Oreo type biscuits and also a Kit Kat dupe gf . Most subs are there if you have a good look round different shops although it’s not cheap . The Schar mini chocolate muffins are also very nice .

Is there a local or online support group for teenagers with coeliac? My 11 year old has a chronic health condition and he loves meeting up with other children with the same condition.

You really need some support from your hospital team. We were really lucky and our daughter was under a really good paediatric gastro from the beginning. Yearly appointments plus we could e mail if any issues. Every year he warned us that teenagers struggle / may not react as much and think they can wing it etc. he basically spent 12 years preparing her to manage her condition as an adult and it's made a huge difference. All you can do is keep plugging along making sure suitable alternatives are available etc. if he's poisoning himself he doesn't get the day of school when I'll etc.

We can't get prescriptions in our area and I've spent stupid money making sure there's bread she likes in the house / freezer. She basically doesn't eat bread now at all

Genius bread is good
Get him referred to psychology by the gastro team

My son binges on "normal" bread and gets an upset stomach so far his bloods have been ok which is just as well as he is adamant that even if he develops it he won't stick to diet

Warburtons tiger bread in Sainsbury's or seeded Waitrose popular in our family (dad also coeliac).

Home Bargains sell some lovely gluten free brownies. I think 6 in the box individually wrapped for £2

My son was diagnosed at 10 and is now 16. He is very sensitive and symptomatic so does avoid gluten containing items but will eat 'may contain' I found with him, he hated buying free from items and would be embarrassed. So I have tried to find things that are gluten free without it being highlighted especially for sweet treats. He is much better now he knows he can buy 'normal' food

Had similar injury last year, healed well and have no scar. GP me gave fucidin cream to prevent infection.

Haven’t used the mandolin since!

There’s no point thinking about punishing him OP. It won’t help. It might make him comply for a while or it might make him more careful about hiding food he shouldn’t eat. It’ll probably damage your relationship with him. The PP suggestion of a psychologist is a good idea, if you can frame it in such a way that he sees it positively.

Coming to terms with a lifelong serious illness is difficult however old you are and especially hard for an adolescent.

Please don't punish, it's common for young people to resist/deny when diagnosed. It's a difficult thing to take in, he needs appropriate support. Charities will hopefully be able to advise.

For starters don't focus on the risks of eating the wrong thing but the positives of eating the right things.

He is old enough to need to take responsibility for what he eats. Without scaring him you need to be very honest about why he shouldn’t have gluten.
Then I would focus on what he can have in place if his favourite things. Rather than getting gluten free Kitkat at home perhaps there is something he can pick of the shelf instead. So off the top of my head snickers, dairy milk, aero. Another easy to grab gluten free treat is Haribo including pinballs and moams.
I assume the issue is when he is out with mates so he won’t want to have to carry stuff with him when all his mates can just grab whatever from the shop.
I wouldn’t tell him off or let him know you are mad. I would come at this from the point of view “I understand how hard it must be for you”.

Twirls , Ripples and Cadbury buttons are all gf and don’t have a may contain warning as do many normal bags of crisps Tescos for one . Personally I wouldn’t go down the road of using may contain items as that warning is fairly unregulated .

Yeah Coeliacs can't eat may contain, it's too risky.

Gluten free cook book so you can make a new cake/brownie etc every weekend?