Arrgh I Don't Think He Will Ever Get It.

[samie]

Hubby ask if it would be a big deal if get a sausage biskcit for our celiac daughter just this one time. I said NO. With me having it for almost a year and her having it for almost 6 mths. I cant trust him whith her by himself. I guess he thinks just once in a while wont hurt her.

[GlutenDude]

This frustrates me to no end! Does he not understand the seriousness of the disease? I wrote a post on my blog on the lack of spousal support and how it makes things so much more difficult. You need to change his way of thinking immediately or your daughter will suffer. Arghhh!

[Reba32]

give him some info on just how damaging this disease is, and show pictures if necessary of damaged intestines and a malnourished child. And tell him in no uncertain terms that yes, most definitely, even just a small crumb, never mind an entire biscuit and sausage (which also likely contains wheat crumbs) can do some serious long lasting harm to his child.

[samie]

No i dont think he really understands it all even though when i was tested i was being hostipal for 2 wks being i could not stop throwing up anemiac severely and other vitamin problems. It took him about six months to finally learn about our daughter dibetes before that i had do it all. He trys to say us the excuse that because of job of a truck driver it hard for him to learn it all. I know he get busy with it but he does have time. I plan on find the info i was given when i was diagnosed but we moved so i got to find it.

[kareng]

If you want to scare him, you can explain that it's medical negligence or out right child abuse, depending on where you live. Giving her something obviously full of wheat is not the same as thinking regular Rice Krispies are gluten-free. It's a deliberate act. If the teachers at school or her doctor find out he is doing this to her or not taking care of her diabetes, he will have her taken away from him. He may go to jail.

This is more effort than most DAs would go to, but some might. I would think for most fathers, just the fact that she will feel bad for a day would keep them from giving her something. Who says, " I don't want to kill my kid, just make her sick?"

[samie]

Yes i know that it could be neglect.thats why i alway make sure she get her insulin. He has gotten better about the diabetes. He use to not want to deal with figuring out how much carbs she had at meals and figguring out how much insilin to give her. When she was stuck in the hospital when she was diganose with diabetes the doctor told him if he wanted her to get discharge he would have to give her couple of shots to because i was 7 mths pregnant. The docter wanted to make sure when i had our baby abby would be getting insulin like she should. Though i had a babysitter and him take care of her when i had our baby and while i was in the hospital i had to figure out her insulin amounts over the phone with them. Also a month and a half after having our boy i was hospitlize for 2 weeks because of low iron low potassuim andlow vitaman b 12 and could no stop throwing up also could barely stand up mor than 5 min he had to take care of our kids and every meal i had to call him to figure out the insulin amount that is when i got tested for ceilac. Now im trying to get him to understand ceilac. We separated for a short time and when we got back together i told him to start helping out with her diabetes he did get better about giving her insulin. Its like i told him i would like to go out without having to worry with her staying with daddy. I dont get much time out by myself and would love just some me time every once in a while. I know he loves her but hes got to start reliazing her medical needs. We dont got much family where we live so i cant ask for help from family.

[heidi g.]

welcome to my world :/ my mother also tries sneaking it into my food. Like the Bolivian cubes. i was like "i cant eat this it says traces of wheat" and she's like "They only use it as a binder" and im like 'someone slap me.'

[AVR1962]

Alot of times to get poeple to understand I use the comparison to ditabetes. While not everyone knows exactly what a diabetic can and cannot eat, they are aware to some degree and people take it seriously, that's because there has been more awareness towards the disease. Just like a person with diabetes can become very ill from too much sugar, your daughter can become very ill from even a grain of gluten. You may not be able to see either as it travels in the body but the damage is going to happen either way.

[Skylark]

You have it hard. I'm sorry. A lot of people don't understand that once in a while DOES hurt us. Is your daughter old enough to start to learn about gluten on her own? It almost sounds like she will have to be her own advocate. Teach her well and mark her safe foods with stickers or tape with a colored symbol like a heart or star so she can identify them.

Understanding celiac isn't too hard. Tell him that eating wheat, rye, or barley makes her body attack itself. She might not seem sick from one biscuit becasue the damage is inside where he can't see, but that there is ALWAYS damage from gluten. He needs to know that even feeding her small amounts of wheat or gluten occasionally it will make her grow up malnourished, stunted, with weak teeth and bones, anemic, and tired. Also tell him that she can get a pretty nasty cancer from eating gluten. (Don't YOU worry about it. The cancer is very rare. It makes a good threat though.)

[Ellie84]

That's horrible, he would hurt his daughter in doing so I agree with the others here, he's posing a serious threat to her health. If he continues to act like this, I'd take strong measures too.

[ravenwoodglass]

You have it hard. I'm sorry. A lot of people don't understand that once in a while DOES hurt us. Is your daughter old enough to start to learn about gluten on her own? It almost sounds like she will have to be her own advocate. Teach her well and mark her safe foods with stickers or tape with a colored symbol like a heart or star so she can identify them.

Understanding celiac isn't too hard. Tell him that eating wheat, rye, or barley makes her body attack itself. She might not seem sick from one biscuit becasue the damage is inside where he can't see, but that there is ALWAYS damage from gluten. He needs to know that even feeding her small amounts of wheat or gluten occasionally it will make her grow up malnourished, stunted, with weak teeth and bones, anemic, and tired. Also tell him that she can get a pretty nasty cancer from eating gluten. (Don't YOU worry about it. The cancer is very rare. It makes a good threat though.)

I think the sticker idea is a great one both for her and for her Dad. Keeping a supply of safe 'snack bags' may help also for when they are out and about and she needs something to eat so there isn't a temptation for a drive-thru.

Dad also needs to know that with celiac there isn't always an instant reaction. He may not associate the problems she has two days later to the biscuit he gave her that couple days ago.

Sometimes Dad's have a hard time even when no illness is present. I used to have to call and remind my ex every time he had the kids just to feed them. He would eat his own meal but unless they told him they were hungrey they didn't get anything. It wasn't because he didn't love them it was just he didn't think.

It sounds like the OP's DH is finding this very hard and just doesn't realize the damage that could be done. If his 'hand needs to be held' over this for a while if he is a good dad in the whole it is worth the trouble. He does have to understand how damaging this could be and if he refuses to understand then that is a different matter though.

[heidi g.]

I think people with no problem, especially men, don't understand because it's not happening to them. My boyfriend, bless is heart he is sweet, is always offering me a bite of his food, or chips he gets, or beef jerky, and oreo cookies. Im getting tired of explaining why i can't eat it, but at least he's being sweet =]]

[samie]

thanks i think the sticker idea is great option. she just turned 5 this month. She is learning about what will keep her healthy and not sick. She does have a speech delay but it has gotten better since she went gluten-free.

[heidi g.]

My son also has a speech impediment. Does anyone know if celiac can slow child development?? He will be three in January and he's not really talking and has some other development issues.

[samie]

I have read that some kids it can involve delays but dont rember where i read it. I do believe that it effected her speech. Since going gluten-free her speech has gotten better and she doesnt throw as many fits as she use to. She gets really irritable if she gets gluten.

[heidi g.]

hmmm if my genetic testing comes back positive for caring the gene i think ill have my son tested too.

[ravenwoodglass]

hmmm if my genetic testing comes back positive for caring the gene i think ill have my son tested too.

If you are a diagnosed celiac your children need to be screened periodically no matter what your genes are. There are more celiac associated genes than just the 2 they usually look for.

[maximoo]

Even if he isn't autistic he should still receive therapy--speech, physical & occupational to help him advance. Heidi, If I were you I'd have DS tested for autism as well. Speech & developmental delays can be indicators. My 17 yo DS has a very mild case of autism. He was born prematurely & started getting the 3 therapies @ age 2. He is now a senior & will be going to college. He has a job, volunteers & is a very good boy. I had him tested for celiac after my DD (age 13) showed positive and he is positive too.

As a special ed teacher, I have been on the receiving end of many kids not getting the early intervention as well as those who have. Believe me there's a world of difference as they grow & become adults.

Best of Luck!

[Di2011]

maximoo

you have my highest of admiration, underpaid and amazing. The absolute best of people I have ever met are those like you

The world is a better place because of you.

[maximoo]

Thx Di! underpaid is an understatement as I'm sure you must know I think it was fate that I got into special ed. I would have never known all the things I had to know having a child with autism. I graduated in may of 94 & he was born that July.