How To Deal W/ Child Cheating On Gluten Free Diet

[Guest mindy80]

I had an 11 year old son who has diabetes & celiac disease. I am really having a problem getting him to stay on the gluten free diet. We have all switched over to a gluten free diet in our house because we thought it would be easier & maybe the adjustment would go better if everyone was eating the same food. I have informed all of his friends partents & when someone new moves into our area & he makes a new friend I go meet there parent. I go and tell them about the disease so everyone is well informed. My problem is even though I have informed the parent & there children about the situation. Our son is still eating food he should have when he goes outside & over to other people house. I have told him he is going to make himself sick & he told me it doesn't make him sick when he eats it so there is nothing wrong. I could really use some advise on how to make this real. I tell him what is going to happen, I have had the doctor tell him what is going to happen but it doesn't seem to matter. Do children with celiac disease go through a denial phase at this age. Is this normal. He was diagnosed with celiac in Feb 2006. Thank for any help.

[Eriella]

Hello,

First of all, it sounds like you are being wonderful and doing everything right; however, your son is 11. I remember when I was 11 I would do everything in my power to try to prove I was in control of my life and that I was not a little kid. Having worked with 11 year olds at a camp for years, I know I was not the only one. If I was on a gluten free diet at the time, I am sure I would cheat just to prove to you that I could and that it was "cool" (ie "I don't need to be babied with the diet. I'm not a kid and I know how to take care of myself"). The thing that he has to realize is that being sick is far from cool. You and your doctor can tell him that all of the time, and although he'll hear you, he won't care because you, by definition of being his mom, are not cool (I am sure you actually are cool, but no one thinks of their own parents that way, especially preteens). The best thing to do is to get him to meet other people with Celiacs (preferably slightly older boys and pretty girls), and all of a sudden they will say the same things that you have been saying and he will listen. You can find these teenagers either through a support group, but talking to your school counselor, or through this message board.

I would also be strict on this issue and not give him a choice about the diet. If he eats gluteny food while he is playing baseball at the park, no more going out unsupervised for a month. If other people feed him gluten at their house, he is not allowed over there (but their children are welcome at your house-- this accounts for parental ignorance and your child being polite).

I know most Celiacs don't like eating out because it is a pain, but I found that eating out at my favorite spots, and having to explain my condition myself was one of the hardest things. If you go out to some of the restaurants that he will go to with his friends and have him tell the waiter himself what he needs, and he gets over that initial hurdle, he is much more likely do to it later. Plus, if you are a regular, they will remember it when he comes back with his friends.

Also, continue to support him. This is a really tough time of his life to be diagnosed and he doesn't want this disease. Some things that my parents did to help me out (I was dxed when I was in college, so it is different) is make sure that I found out how to get "normal" food so I didn't feel left out, or worse hungry, when everyone else is eating my favorite foods. Glutino pretzels and popcorn are great snacks for movie nights at friend's houses. If his friends are going out for pizza, and he has shown himself to be responsible, let him go, but send him with a premade gluten-free pizza slices in a baggie that he can munch on while his friends eat real pizza. If you are nice enough to pack his lunches still, don't pack "weird" food (ie something that everyone else won't have-- either pack a sandwich with Glutino pretzels and fruit or a homemade lunchable with deli meat, cheese, and crackers), because that just leads to people picking on you.

Eleven year olds are difficult and the denial is a sign of his age, not a sign of him trying to make himself sick. He'll come around with support and growing up.

Good Luck!

[Electra375]

The #1 reason Dr. Fasano gave me for doing the biopsy on my older son was to be able to show him the biopsy slides in his rebellion years. And so that I assume Dr. Fasano could lay it down with how important the gluten-free diet was for long term health and avoidance of such things as Cancer.

Dr Fasano stressed that remission of symptoms occurs in the teen years and if the diet is not followed, worse will come in the late 20s and early 30s. It's hard to convinence a child, teen and young adult that they are not invinsible.

Given what we talked about at that appt, I would guess that Dr F sees a lot of older children who are in denial and rebellion.

I don't have an 11 yr old yet, but my 8 yr old would be good and then not good. It is hard when they are out of our controlled environment and when people say it's okay and he believes them (my 2nd child is not easily swade, 1st is). I hope I'm arming my children with enough knowledge that they will adhere to the diet, but it isn't a guarantee.

Is he also faltering on watching his intake for his diabetes? Diabetes uncontrolled has some serious medical problems associated with it too which I'm sure you are well aware of. The two combined I'm sure make his diet extremely limited.

[laurabelle]

Hi I have a 13 year old ds with a huge appetite and who has been in the rebellious stage since birth. I asked the board a similiar ? not too long ago. All the advice you have read so far is great. I would like to add one of the main things that has really helped me. I keep juice spritzers or seltzer water and bags of snack food on hand at all times so that whenever he goes out I can send him with a snack and a drink. This has really helped. Often my son is embarrased, unsure or just hungry and so if he doesn't have an acceptable snack he will eat whatever is offered. Also even though we tell his friends (parents too) and family they either don't think about it ahead of time, don't take it seriously, or are unaware that wheat is in so many different things. I usually keep large bags of tortilla chips (he will eat a whole bag easily) bags of nuts, plain popcorn, premade brownies or muffins, sunflower seeds (very popular during baseball) and fruit. If I know he will be having dinner with someone else I will either call to plan ahead of time or just send a frozen pizza with him. It has been hard to always remember to do this and it does cost some money but it has been well worth it for us. Good Luck, I know how hard it can be

[Belinda Meeker]

Hello,

First of all, it sounds like you are being wonderful and doing everything right; however, your son is 11. I remember when I was 11 I would do everything in my power to try to prove I was in control of my life and that I was not a little kid. Having worked with 11 year olds at a camp for years, I know I was not the only one. If I was on a gluten free diet at the time, I am sure I would cheat just to prove to you that I could and that it was "cool" (ie "I don't need to be babied with the diet. I'm not a kid and I know how to take care of myself"). The thing that he has to realize is that being sick is far from cool. You and your doctor can tell him that all of the time, and although he'll hear you, he won't care because you, by definition of being his mom, are not cool (I am sure you actually are cool, but no one thinks of their own parents that way, especially preteens). The best thing to do is to get him to meet other people with Celiacs (preferably slightly older boys and pretty girls), and all of a sudden they will say the same things that you have been saying and he will listen. You can find these teenagers either through a support group, but talking to your school counselor, or through this message board.

I would also be strict on this issue and not give him a choice about the diet. If he eats gluteny food while he is playing baseball at the park, no more going out unsupervised for a month. If other people feed him gluten at their house, he is not allowed over there (but their children are welcome at your house-- this accounts for parental ignorance and your child being polite).

I know most Celiacs don't like eating out because it is a pain, but I found that eating out at my favorite spots, and having to explain my condition myself was one of the hardest things. If you go out to some of the restaurants that he will go to with his friends and have him tell the waiter himself what he needs, and he gets over that initial hurdle, he is much more likely do to it later. Plus, if you are a regular, they will remember it when he comes back with his friends.

Also, continue to support him. This is a really tough time of his life to be diagnosed and he doesn't want this disease. Some things that my parents did to help me out (I was dxed when I was in college, so it is different) is make sure that I found out how to get "normal" food so I didn't feel left out, or worse hungry, when everyone else is eating my favorite foods. Glutino pretzels and popcorn are great snacks for movie nights at friend's houses. If his friends are going out for pizza, and he has shown himself to be responsible, let him go, but send him with a premade gluten-free pizza slices in a baggie that he can munch on while his friends eat real pizza. If you are nice enough to pack his lunches still, don't pack "weird" food (ie something that everyone else won't have-- either pack a sandwich with Glutino pretzels and fruit or a homemade lunchable with deli meat, cheese, and crackers), because that just leads to people picking on you.

Eleven year olds are difficult and the denial is a sign of his age, not a sign of him trying to make himself sick. He'll come around with support and growing up.

Good Luck!

Very Well Put

Yes it is hard to have them DXD at an older age, but my son was tired of being sick and he too went through the stage of hey mom I can eat this "NOW" but he was wrong it came back and kicked him in the behind and he was throwing up and sleeping for days

The best advice has already been thrown ur way, but always keep in mind he has to decide to do this himself cuz the more 'us' parents push the farther they want to prove us wrong

The only thing u can do now is tell him about having kids someday ......

The doc told my son if he didn't treat this the correct way he may never become a dad someday and this and being so sick changed his mind, the thing about letting go with their friends is okay, I just make sure he's good and full before he leaves

It will get easier with time so hang in there (my son's friends when they stay say my gluten-free foods is great exp. my breakfast bake) lol

The diabetic part is serious too so I feel for ya

Good Luck to u all !

Belinda

[Guest Doll]

I can say from personal experience that having to deal with Type 1 diabetes and Celiac makes eating more of a chore than anything. Sometimes I feel like I have an eating disorder, since I can never put anything in my mouth without counting carbs, adjusting my insulin pump, and reading labels like a fanatic!

That said, all great advice. Like many kids with diabetes, kids with Celiac often go through a "rebellious" phase. Scare tactics do *NOT* work on kids. They can only deal with the here and now, and feel invincible.

What does work is family support. Yes, he will make mistakes. What you need to do is be there for him. It is *insanely* hard to manage Type 1 diabetes and follow a gluten-free diet as an adult, let alone a kid. Perhaps he is overwhelmed and just wants to be a normal kid. People have no idea how hard it is to live with Type 1 diabetes. It is *MUCH* harder to control and more serious than Type 2 diabetes (the adult onset obesity related kind, usually controlled with pills). Throw Celiac into the mix, and it can be the straw that breaks the camel's back.

What you need to do:

-Ditto on providing gluten-free snacks and foods for him to take with him *at all times*. Find out what gluten-free foods and foods in general that he likes. Try to use food that is naturally gluten-free, like peanuts, cheese, or veggie sticks, so he doesn't feel like he is eating "weird" special food around his friends.

-Take him and his friends out to go shopping for gluten-free foods and have a "tasting" party at home. Whatever they all like, have the moms keep some around so they can offer *all* the kids that when he comes over. Being different is a big problem for kids.

-Help him with his diabetes care, take over any tasks he has learned to do on his own to give him a break.

-Consider getting him an insulin pump in the future.

-Support groups and camps are a great idea.

-He also might be open to talking to a counsellor that is familiar with chronic illness in kids.

You son probably is sick of hearing that he will die young, go blind, lose a leg or his kidney's, or get cancer (from Celiac) etc. That's hard for a kid to deal with. None of this information is helpful, it doesn't make his diseases any easier to live with or control. I really think positive support with help more than anything else.

P.S. Make sure he is regularly screened for autoimmune thyroid disease. Celiac, Type 1 diabetes, and autoimmune thyroid disease (usually Hashimoto's) often occur together.

If you have any questions about insulin pumps, etc. feel free to PM me.

Let me know if there is anything I can do to help!