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Help 14yo DD Coeliac but sneaking gluten


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#1 steppingonlego

Posted 21 November 2019 - 08:05 AM

I am not sure what to do so need some advice.

My 14yo DD is what you would call a bit difficult. Sneaky and moody (teens I know) I have been finding it hard to speak with her about any issues (eating fruit, going to bed at a reasonable time etc) just small things but I dread each time as she either stares at me blankly not engaging or slams doors.

Anyway this morning I went to empty a bin in her room (as it was disgusting) and I discovered that despite being diagnosed as a coeliac earlier this year she had eaten a packet of lollies which she knew had gluten (it was a secret santa gift from someone she didn't know was coeliac)

She had said she was going to save them to give to a friend for Christmas. Obviously the temptation was too much.

Because she tends to be a bit sneaky I have no idea how often she is sneaking foods with gluten in them. It is a serious concern as the health risks are real.

How do you get through to someone who doesn't listen to you? I am not sure what to do. I go to great pains to make sure there are lots of gluten free options and all the meals I cook for her are gluten free.

Her diet overall is appalling even though there is always fresh fruit and healthy options available she hasn't eaten fruit in months.

I have printed a brochure about the long term health consequences of eating gluten and will ask her to read it. I can stop giving her pocket money so she has no money to buy gluteny foods but I would really like her to make the right choices. We have a separate cupboard at home as 2 of my kids are not CD so there is gluten food here as well.

I am upset at thinking of the way she is damaging her health and the fact I can't get through to her at all.

Any advice from mums who have had teens do something similar would love to hear what you have done.

Should I take her back to the Dr for a talking to?

#2 gracie1978

Posted 21 November 2019 - 08:19 AM

That sounds so tough.
My Mum had this problem with my Dad, only thing that stopped him was a terrible attack that ended with part of his bowel being removed.
I think a medical professional would be helpful, specialist doctor or even psychologist?  My friend was having issues with a much younger child over food and the amazing psychologist sorted it in one session!

#3 Mands09

Posted 21 November 2019 - 08:23 AM

The paediatric gastroenterologist was apoplectic when I said DH wasn’t taking our DS’ coeliac disease seriously and was still using lots of ‘may contain gluten foods’. He was saying the thing he worries about is the increased risk of lymphoma that children and young people have with continued exposure to gluten think it was like 11% (but don’t quote me). He said to me that you can expect 1-2 times a year of accidental glutening but that’s it. Continued exposure is definitely a worry. It seemed to shock DH in to being way more cautious.

Hopefully someone has some more useful advice on how to get through to a teen.

#4 JBH

Posted 21 November 2019 - 08:26 AM

I agree that professional advice from a dietician and psychologist would be helpful.  Bearing in mind there is a
lead time to that, do you think part of the issue is that she wants junk food, which you are limiting, and so is rebelling by eating exactly what she wants? Does she have access to gluten free junk food?

#5 PuddingPlease

Posted 21 November 2019 - 08:27 AM

If it was only the one packet of lollies I'm not sure it's worth making a big deal out of. As you say, you know exactly where these came from so there isn't necessarily any reason to think she is regularly sneaking extra food. I wouldn't be surprised if you're right and the temptation just got too much.

I also feel like it's pretty normal for young teens to choose a poor diet for a few years. I remember eating chocolate donuts on the way to school at around that age. She is unlikely to suffer any actual ill effects due to lack of fruit in the short term.

Information pamphlets and chats with the doctor can be really useful in providing education but I wouldn't necessarily be getting the doctor to provide a "talking to" per se. Ideally you want her to feel that she can be open and honest with a doctor without feeling judged. Her future health may depend on that one day.

In your place I would probably discuss the lollies with her and remind her why eating them was probably a bad idea. In terms of her diet more broadly I'd pick my battles carefully, are there particular fruits that she enjoys? At least, coming into summer there will be a greater variety of choices for a few months.

#6 steppingonlego

Posted 21 November 2019 - 08:35 AM

Thanks everyone for your advice.

We have had a lot of issues with her. She has had a session of counselling at Headspace for other reasons as well. She has seen a dietician, a GP, and her specialist regarding her illness. She is due to have another gastropscopy in a few months.

I know her diet is extremely poor other than the dinner I provide. I offer to make her lunch for her but she declines.

She has her own box of snacks to choose from. I ask her what she wants. She usually has a sustagen for breakfast (she will not get out of bed in the morning partly due to being a teen and partly due to her poor diet and lethagy) she takes snacks only to school (rice crackers etc) and the one meal I see her eat is dinner.

As far as limiting foods I don't really. I have told her I won't be serving her dessert as she doesn't eat fruit but she doesn't care.

I buy her the choc gluten free muffins and will bake gluten free snacks I also  have gluten free icecream in the freezer.

We don't have a lot of lollies in the house but if we do she gets a gluten free options.

I have printed out an article for her to read about what happens cheating on the gluten free diet.

I am hoping to have a discussion with her tonight about this and some other issues that we are having with her. I just don't know how to get her to take it seriously. It could be a one off but she has a tendancy to lie so I don't know.

#7 Mands09

Posted 21 November 2019 - 08:40 AM

How long since she has been diagnosed?

Could it still be part of the adjustment period - as in some gluten free stuff is really good and you can’t tell it’s not gluten and some of it you’d be better off eating cardboard. Is she just not liking the alternatives?

Hopefully you can get through to her.

#8 22Fruitmincepies

Posted 21 November 2019 - 08:42 AM

No advice but I remember a kid in my year at high school was very cavalier with her T1 diabetes, and I remember thinking how worried her mum must have been. I think it’s pretty normal for teens to want to seem like everyone else, and sometimes that includes ignoring their own serious health needs.

#9 ~Jolly_F~

Posted 21 November 2019 - 08:43 AM

As an adult who has been diagnosed with health issues relating to food.. I feel for your daughter so much.

I hate it. I hate not being able to eat what I want and love. I hate having to be different while everyone else is enjoying yummy food. It makes me feel like I am out of control of my own life.

I can only imagine how a 14yo is feeling.

I don’t think I would be getting her a talking to or giving her brochures. Try and have a friendly calm chat about why she can’t eat it and what the long term issues can be without accusations or blame, ask her if she wants to speak to professionals again.

I also don’t think taking her access to money away will stop anything, if she wants certain foods, she will get them.

She is the one who has to make the changes and be ok with them, you can try and force them but she is likely to push back and you will be further disappointed.

#10 kimasa

Posted 21 November 2019 - 08:49 AM

This is actually common. The occurrence of anaphylaxis increasing in teenage years is the most notably documented one.

Personally, I spent my teenage years vegan, something that someone with malabsorbtion syndrome should never ever do, my poor mum was at her wits end and now I get to live with the long term damage consequences.

I wish I could give you an answer, but teens are notorious for risky behaviour, and when the risky behaviour is doing something that is "normal" for others, it's harder.

#11 steppingonlego

Posted 21 November 2019 - 08:50 AM

I understand it is horrible for her to have to think about everything she eats. It must be terrible to go to events where you have to constantly ask if there is cross contamination etc.

We are having quite a few issues with her at the moment (rudeness, lying, leaving half finished foods all over her room) so I am hoping to address everything in as calm a manner as possible but it does need to be addressed. The gluten eating is extremely concerning and I have found an article that is sympathetic to her situation but still points out the seriousness of it.

I really want to treat her like an emerging adult and try to give her some freedoms but if you give her an inch she takes a mile

#12 steppingonlego

Posted 21 November 2019 - 08:53 AM

View Postkimasa, on 21 November 2019 - 08:49 AM, said:

This is actually common. The occurrence of anaphylaxis increasing in teenage years is the most notably documented one.

Personally, I spent my teenage years vegan, something that someone with malabsorbtion syndrome should never ever do, my poor mum was at her wits end and now I get to live with the long term damage consequences.

I wish I could give you an answer, but teens are notorious for risky behaviour, and when the risky behaviour is doing something that is "normal" for others, it's harder.

Thanks it really is hard and I get it I was a teen too I remember throwing out healthy lunches and eating crap. If it was as simple as that I would probably let it go. I think all I can do is give her the information tell her how important protecting her health is and that I am happy to provide gluten free treats.

Issue is I could buy ten bags of GF lollies and she would eat them in one sitting if she was allowed. I did actually do this at a GF expo and allowed her to manage her consumption of them. They were all gone by the next day.

I can't just keep loading her up on GF crap to avoid her eating gluten crap. There has to be some boundaries.

#13 marple

Posted 21 November 2019 - 08:53 AM

what about fruit smoothies or sorbets? Do you have a juicer? she might like things like that/ i know my kids would have bought  a boost juice a day if they could when they were younger teens.  most of them should be gluten free

#14 SplashingRainbows

Posted 21 November 2019 - 09:01 AM

Oh I feel for her. I was diagnosed at 25 and it was just life changing. I recall crying at the dieticians office about 6 months in as it was still so overwhelming and isolating and I wasn’t feeling better yet.

I really feel for a newly diagnosed teen when social acceptance and inclusion is so very important.

From all you’ve written I think your daughter needs connection with you above all else. No lectures. No discussions. No pamphlets.  Just love and empathy and some psychological support.  Honestly I think really just acknowledging to her that it is hard, really hard may go a very long way.

Stop fighting over the fruit.

Food is not for fighting over. Truly it’s not. The world wasn’t built in a day. Worry about what you can control - which is what you offer and what you keep in the house - and don’t worry about what you can’t. It will just rob you of joy and relationship with your daughter. I’ve been there and done that and funnily enough they all ate better when the pressure was dropped. Granted they’re younger but I think the issues are somewhat universal.

I do have a coeliac child too. It really is a big adjustment for them and we put ourselves a long way out to make sure he is included as much as possible but he still feels the difference.

#15 halcyondays

Posted 21 November 2019 - 09:02 AM

I don’t have teens- and only one child with CD who has a sibling at home, and 2 half siblings no longer at home.
He can’t help eat every junk food available- like me, if there is a sweet in the house, he can’t stop thinking about it.
Basically we only keep gluten free foods at home. Anything that gets brought home which has gluten in it (usually a gift) - I take into work with me and buy the kidS a Gluten free replacement- preferably something that looks just as interesting and exciting.
It’s expensive. I can afford it. I believe in letting children with eating restrictions relax at home ie not have to exercise their willpower to avoid gluten/ read labels/ watch their sibling eat fresh crusty bread while they get the usual gf toastie- that sort of thing.
I encourage my kids to eat certain brands of crisps, lollies, and ice blocks when we are out- easy treat gf. And avoid shame over making unhealthy food choices. So now my child with CD always buys the crisps when he has spending money. They aren’t always gf (the pressure to conform to fads is huge!) but work in progress.

#16 wallofdodo

Posted 21 November 2019 - 09:04 AM

I have coeliac disease, and I feel for your daughter.

Actually on a facebook group I am in there was another mother posting something very similar to you. It was about a teen not following the diet. So its probably common.

My response was one of understanding. I get it. The teenage years feel so out of control.  The times when I am most likely to cheat on my diet is when I feel like things are out of control and everything is bad. I see it as a way of gaining some control, even though it is a bad decision.

I am an adult and I sometimes sneak/cheat on my diet, and I fully know the consequences. Its a really ****ing hard diet to follow. And if you are like me, you don't vomit or feel immediately ill, its super ****ing hard.

Edited by wallofdodo, 21 November 2019 - 09:06 AM.


#17 steppingonlego

Posted 21 November 2019 - 09:07 AM

View PostSplashingRainbows, on 21 November 2019 - 09:01 AM, said:

Oh I feel for her. I was diagnosed at 25 and it was just life changing. I recall crying at the dieticians office about 6 months in as it was still so overwhelming and isolating and I wasn’t feeling better yet.

I really feel for a newly diagnosed teen when social acceptance and inclusion is so very important.

From all you’ve written I think your daughter needs connection with you above all else. No lectures. No discussions. No pamphlets.  Just love and empathy and some psychological support.  Honestly I think really just acknowledging to her that it is hard, really hard may go a very long way.

Stop fighting over the fruit.

Food is not for fighting over. Truly it’s not. The world wasn’t built in a day. Worry about what you can control - which is what you offer and what you keep in the house - and don’t worry about what you can’t. It will just rob you of joy and relationship with your daughter. I’ve been there and done that and funnily enough they all ate better when the pressure was dropped. Granted they’re younger but I think the issues are somewhat universal.

I do have a coeliac child too. It really is a big adjustment for them and we put ourselves a long way out to make sure he is included as much as possible but he still feels the difference.

I do hear you and I want a good positive relationship with my daughter. I am prepared to drop the fruit thing completely but I do think she has to understand that the consequences of eating gluten stretch far beyond feeling a bit crap after one piece of food. I will try the approach you have mentioned with empathy and understanding. We do have quite a few issues we need to address with her as well I feel quite overwhelmed by it to be honest.

View Posthalcyondays, on 21 November 2019 - 09:02 AM, said:

I don’t have teens- and only one child with CD who has a sibling at home, and 2 half siblings no longer at home.
He can’t help eat every junk food available- like me, if there is a sweet in the house, he can’t stop thinking about it.
Basically we only keep gluten free foods at home. Anything that gets brought home which has gluten in it (usually a gift) - I take into work with me and buy the kidS a Gluten free replacement- preferably something that looks just as interesting and exciting.
It’s expensive. I can afford it. I believe in letting children with eating restrictions relax at home ie not have to exercise their willpower to avoid gluten/ read labels/ watch their sibling eat fresh crusty bread while they get the usual gf toastie- that sort of thing.
I encourage my kids to eat certain brands of crisps, lollies, and ice blocks when we are out- easy treat gf. And avoid shame over making unhealthy food choices. So now my child with CD always buys the crisps when he has spending money. They aren’t always gf (the pressure to conform to fads is huge!) but work in progress.

We can't afford to be completely gluten free. She has her own condiments and cupboard, snack box. When I buy a treat I make sure she has one too (so if it is a chocolate bar then everyone gets one I make sure she has a twirl or something GF)

#18 splatthecat

Posted 21 November 2019 - 09:07 AM

Both my kids are Coeliac, not teens though. My DS8 was quite resentful for the first year up until his younger sister was also diagnosed. It was really hard for him to watch others eat food he wanted and used to enjoy.
We found breakfast and lunch really hard to find good options for. We invested in a good thermos and he takes left over dinner to school for lunch (curry/pasta).
When he gets given gluten Lollies we swap them straight away for our stack of GF ones. We ended up getting multipacks of trolli lollies as they are all gluten free - Aussiecoeliac.com.au have other options.
There is a series on sbs at the moment ‘loving gluten free’ maybe watch that with her and pick some things to cook?
It is a huge transition and harder when you know what you are missing out on.

Balance out the risks of gluten with understanding how difficult this transition is. Good luck


#19 steppingonlego

Posted 21 November 2019 - 09:09 AM

View Postwallofdodo, on 21 November 2019 - 09:04 AM, said:

I have coeliac disease, and I feel for your daughter.

Actually on a facebook group I am in there was another mother posting something very similar to you. It was about a teen not following the diet. So its probably common.

My response was one of understanding. I get it. The teenage years feel so out of control.  The times when I am most likely to cheat on my diet is when I feel like things are out of control and everything is bad. I see it as a way of gaining some control, even though it is a bad decision.

I am an adult and I sometimes sneak/cheat on my diet, and I fully know the consequences. Its a really ****ing hard diet to follow. And if you are like me, you don't vomit or feel immediately ill, its super ****ing hard.

I know it must be so hard and I try to make it as easy on her as possible but the fact is she has to follow it for her own health. I know she will slip up and I am hoping this is a once off for her I have no desire to rain down brimfire on her I just need to know she understands the consequences. I know the lack of symptoms must be making it easier to think it isn't doing anything.

#20 halcyondays

Posted 21 November 2019 - 09:11 AM

Also- if she has only recently been diagnosed, it’s likely that her stomach hurts, she has little appetite, and fibre and fruit sugars give her an upset stomach. Is she lactose intolerant too? Has iron been tested recently?
I’d let her readjust her junk food eating on her own, and give her dessert even if she eats nothing else- food at home needs to be an inclusive, loving experience.
It’s very hard to have such restrictions, - you do what you can like serving fruit crumbles and sorbets for dessert, buckwheat pancakes with maple syrup. And unfortunately leave the rest up to her.

#21 born.a.girl

Posted 21 November 2019 - 09:19 AM

No advice on the diet, but I feel for you. They're hard years with teenagers and health conditions.  The first raging row I had with my mother was as a teenager with a chronic condition, I insisted on going to see the specialist on my own, as she didn't permit me to ask any questions ('I'm sure the doctors know what they're doing' was her objection to me actually understanding the condition).

I also had a teenager for whom additives (preservatives etc) would trigger asthma.  All she had to do was avoid some junk.  You'd think she'd been put on a diet of seaweed the way she carried on about the things she couldn't eat. At the same time she was close to her younger cousin who couldn't eat wheat, dairy, soy, apple & citrus, but insisted that at least her cousin could drink Coke. Seriously.


Seems to me at that age they either minimise the seriousness of their condition, or dramatise it out of all proportion.


Good luck. x

#22 PuddingPlease

Posted 21 November 2019 - 09:33 AM

If possible I would also try to keep your concerns about her diet completely separate from discussions about other aspects of her behaviour.

It is reasonable to discuss things like rudeness and other poor behaviour in terms of what is acceptable and unacceptable and then to discuss consequences but this approach is likely to be unhelpful when discussing her diet.

That might mean having a series of short discussions over a few days instead of scheduling one big one to discuss all of your concerns at the same time.

#23 hills mum bec

Posted 21 November 2019 - 09:46 AM

Teenagers are hard work.  I am amazed at how many of DS18's friends smoke cigarettes, they know how bad it is for them but they still do it.  It doesn't matter how much literature you put in front of them, how much you lecture them about the health dangers, they will still do it.  In fact, the more you effort you put into getting them to stop the more determined they will be to persist with it because they are teenagers.  I suspect you would have the same issue with your DD & gluten.  I'm sure she knows exactly how bad it is for her and the consequences that might not really eventuate until the distant future but teenagers live in the "now" and I don't know too many who will make choices now with foresight for the future.

All that being said, I'm sorry but I don't know what the solution for you is except to wait out those teenage years when they do start to make more sensible & less rebellious choices.

#24 ~Jolly_F~

Posted 21 November 2019 - 09:49 AM

View PostPizzaPlease, on 21 November 2019 - 09:33 AM, said:

If possible I would also try to keep your concerns about her diet completely separate from discussions about other aspects of her behaviour.

It is reasonable to discuss things like rudeness and other poor behaviour in terms of what is acceptable and unacceptable and then to discuss consequences but this approach is likely to be unhelpful when discussing her diet.

That might mean having a series of short discussions over a few days instead of scheduling one big one to discuss all of your concerns at the same time.

I agree with this so much.

Don’t bombard her in one big discussion, you won’t get through on the most important thing because she will feel attacked. Keep the health discussion separate from the rest.

#25 steppingonlego

Posted 21 November 2019 - 09:55 AM

Yes I think that is the best approach. I feel worn down by it all myself at the moment.

I have removed the DVD player today so I will need to address that with her. I am not prepared to put it back in her room.




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