Feeling Really Really Sad

[The Kids Folks]

Hi All-

I was going to post a happy look how wonderful the gluten-free lifestyle is! We have been gluten-free in our house since Oct 08. DS (7yrs) just went to the peds last week for a 6 month gluten-free check up. We switched peds so I wanted to make sure that the new peds was on board. She totally was and said that DS looked really healthy! Said that she thought we would see a good growth spurt in the next six months, keeping with the gluten-free plan. DS was under the 3rd pecentile when we started the diet and he has now reached the 5th percentile. His weight is at the 10th, but he has gained weight and gone up a size in clothes - finally!!

Well, since the peds visit. DS has been eating gluten food at school from his friends. I pack his lunch with things that he likes and now all of a sudden he's decided that he can eat whatever he wants at school!! He totally understands that he can't eat gluten b/c it gives him terrible gas, bloating and chronic horrible C, he also doesn't sleep well at night, talking and yelling in his sleep. He also has major meltdowns. That in fact is what prompted me to write to the group. He just "lost it" screaming at us, crying, hitting his sister, etc. Which is when I looked at DH and said he is definitely GLUTENED!!

So how do I handle this? I tried talking a bit. DH says that he thinks that DS is starting to understand that he feels like crap again! I am just so sad. We worked so hard to get to this point where he is finally starting to grow, he's starting to look healthy and be our happy lovable kiddo again.

My emotions are totally mixed - I feel sad and angry all at the same time and then try to empathize with a 7 year old who wants so much to eat like his friends.

Does this get easier? Our DD is 4 yr and is also gluten intolerant and will be starting kindergarten next year. Whew -

The Kids Folks

[sugarsue]

He totally understands that he can't eat gluten b/c it gives him terrible gas, bloating and chronic horrible C, he also doesn't sleep well at night, talking and yelling in his sleep. He also has major meltdowns. That in fact is what prompted me to write to the group. He just "lost it" screaming at us, crying, hitting his sister, etc. Which is when I looked at DH and said he is definitely GLUTENED!!

So how do I handle this? I tried talking a bit. DH says that he thinks that DS is starting to understand that he feels like crap again! I am just so sad. We worked so hard to get to this point where he is finally starting to grow, he's starting to look healthy and be our happy lovable kiddo again.

My emotions are totally mixed - I feel sad and angry all at the same time and then try to empathize with a 7 year old who wants so much to eat like his friends.

Does this get easier? Our DD is 4 yr and is also gluten intolerant and will be starting kindergarten next year. Whew -

BIG HUGE HUGS!

Once the gas and C comes, and he starts to get in trouble at school from his outbursts, and his friends start to wonder what the heck is wrong with him, hopefully he will start to get it.... My dd is 7 and she does get it, she feels her brain go "crazy" and she can't control herself. She hates to learn that anyone in her class is PRAYING for her to get better....

I tell my dd's that if anyone offers them gluten, they can accept it and bring it home to me and I'll offer them double of a gluten free option. I learned this somewhere on this site I think and it really works. She can have 2 of anything she wants if she brings me what she "could have eaten".

We talk about gluten all the time "is this gluten gas?", "do you think this is gluten poop?", "Maybe this nutty behavior is related to gluten?".... Eventually they start saying "I think I got glutened, maybe it was the.......XXXX?"

Any kind of positive enforcement I imagine would be good.... "Wow, you had one day with no gluten!! I know that will really help you grow tall".... I don't know, I'm just thinking off the top of my head....

Anyway, I really feel your pain. You can't control what he eats for the rest of his life. All you can do is educate him as best you can and motivate him as best you can. It's so hard.

[ryebaby0]

Hmm... My son was dx @ 9 (he's almost 16 now).....

Your son is only 7. No matter how much it appears he "understands" he can't have gluten, it will never be that easy, any moreso than getting him to clean his room, do his homework, or brush his teeth. As a child, he will make poor choices. Often! It's not been 1 year. He may not have yet internalized that this is a forever change. He may likely have grief and anger when he realizes it

He may be testing your resolve ("did they really mean it? is a little okay?")

I would:

1. Talk to the school/teacher/lunch aide. Schmooze and plead and emphasize his illness. This is as serious as anaphylaxis, just not as dramatic. Enlist their aid in policing him. Yup, he'll not like that. Tell him that you are prepared to do whatever it takes to keep gluten out of him.

2. Talk to his teacher, and ID the students who may be enabling the access to gluten. They are only little kids. Some education is in order, and the teacher is the appropriate person. Send his lunch with enough gluten-free yummies for HIM to give to THEM. Boys are power-crazed

3. Tell your son all this. You would never let him play in traffic and "hope" he'd decide to stop. This is a health issue. Imho, never feel sorry for your child. Life is full of toil, problems, and obstacles. Model a positive, certain attitude, not a "poor you, I understand life is hell without Cheerios" attitude (and I'm not saying you are -- just that it's easy to slide there) It tends to give teens and children tacit permission to eat poison.

And lastly, mom to mom: Try not to take it personally. He's not doing it to make you miserable, or drive you nuts. ((*sigh* that comes later) Try to be matter-of-fact and address things age-appropriately as you do other safety issues. But it's okay to stand at an emotional distance, so to speak. This is ONE part of a WHOLE life, and like everything else, there will be ups and downs. You are a good mom, or you wouldn't care. You wouldn't have taken on gluten-free patrol as a second job. Hang in there!

joanna

[CeliacMom2008]

I know my son took some teasing from kids. He happens to be a very self confident kid, but the teasing was still hard on him. I would imagine a kid with less self confidence might not be able to stand up to it as well. My son was 8.5 - 9 when the kids at school and soccer camp were hard on him. At 7 your son might not be old enough to handle the pressure - peer pressure is horrible at every age! You might want to talk to him about how the other kids are handling his diet.

A couple things we did - at my son's school parents and grandparents are allowed to visit for lunch. My husband and parents and I took turns having lunch with him. Luckily for us at the time it was still great if your parents visited you during lunch (not yet another thing to be teased about). We'd usually bring him really great lunches - crepes (evidently all the kids were jealous of the crepes my mom would bring!), pizza (NOT on pizza day - then everyone wanted to know "why does he get pizza when we get ________ (something not as good as pizza)", chicken nuggets and fries, etc.

Secondly, we can bring our kids home for lunch (also was considered a bid deal if you got to leave the school for lunch), so we'd take turns bringing him home.

Your son's situation might have nothing to do with peer pressure or bullying, but it just sounded similar to when my son was dealing with kids putting bread on his lunch, daring him to eat a cookie, etc.

Good luck!!

[jmjsmomma]

UGH!! I am SO sorry. We've only been at this for 3 months ourselves so I am of no help to you in this situation. I just wanted to say that I'm thinking of you and can only imagine how sad/frustrated you must be. HUGS!!!