Re: Caution: Labeling individuals as a disease

[Guest guest]

Its great that your daughter knows what she can and cant have. When

I was little I knew I had Celiac. Just didnt know it was actually

a " disease " , per say. My parents taught me from the beginning that

if i ate something with gluten in it I would get sick. I quickly

learned what to stay away from. By the age of 6, my mother was

making me read labels and tell her if I could have it or not. Of

course thats hard for a 6 yr old. But she always was there

encouraging me and helping me with those " big " words on the label.

I probably couldnt pronounce half of them or know what they were

derived from, but I learned to recognize them on the packages. It

gave me confidence when I would be at a sleepover at a friends

house, I could check the labels myself and say, no thanks, I can't

have that. It made me feel independent to be able to take care of

my diet all by myself. Of course, there was always some GF goodies

there that I could have.

I was also raised in a mixed household, in fact i'm the only one

with CD. It was matter of fact for me. Sometimes my parents would

bake goodies for my siblings that I couldn't have. But it didn't

bother me whatsoever. I would also get stuff baked for just me.

And my brother and sister were told not to eat my stuff (if it was

an expensive item). HA! Works both ways. I never felt different

or excluded. And I think explaining why certain foods are off

limits helps to keep children from feeling excluded.

I think you are doing an excellent job raising your child! Keep

going the way you are!

>

> Bridget,

>

> I have a couple of questions because I have a 4 year old who we

are trying

> to train from the start what she can and cannot eat and the

reasons behind

> it.

>

> How old is your son and does he question why his diet is

different? Does he

> understand why he can't eat with the group or has that come up?

>

> We have a mixed household and my daughter at not quite 2 1/2 was

diagnosed

> and we have been open with her from the start. She understands

she has

> Celiac and that if she stays GF she can be healthy and if she eats

gluten

> then she will get sick. We have told her this from the start and

she has

> been okay with it. She knows that her diet is different but she

also knows

> why it is different and what will happen if she eats gluten. With

that

> being said she is not consumed by it and worrying about it all the

time. If

> a snack comes up then she will ask or she has even already told

people she

> can't have it because it has gluten and been right! But of course

on the

> other hand almost any snack people are going to give her has

gluten in it so

> it wasn't much of a gamble to say she was right.

>

> I do not want to harm my daughter in anyway and now with this whole

> conversation going I am afraid I have found myself questioning my

whole

> process AGAIN!

>

>

> SPRING IS HERE!

>

[Guest guest]

Its great that your daughter knows what she can and cant have. When

I was little I knew I had Celiac. Just didnt know it was actually

a " disease " , per say. My parents taught me from the beginning that

if i ate something with gluten in it I would get sick. I quickly

learned what to stay away from. By the age of 6, my mother was

making me read labels and tell her if I could have it or not. Of

course thats hard for a 6 yr old. But she always was there

encouraging me and helping me with those " big " words on the label.

I probably couldnt pronounce half of them or know what they were

derived from, but I learned to recognize them on the packages. It

gave me confidence when I would be at a sleepover at a friends

house, I could check the labels myself and say, no thanks, I can't

have that. It made me feel independent to be able to take care of

my diet all by myself. Of course, there was always some GF goodies

there that I could have.

I was also raised in a mixed household, in fact i'm the only one

with CD. It was matter of fact for me. Sometimes my parents would

bake goodies for my siblings that I couldn't have. But it didn't

bother me whatsoever. I would also get stuff baked for just me.

And my brother and sister were told not to eat my stuff (if it was

an expensive item). HA! Works both ways. I never felt different

or excluded. And I think explaining why certain foods are off

limits helps to keep children from feeling excluded.

I think you are doing an excellent job raising your child! Keep

going the way you are!

>

> Bridget,

>

> I have a couple of questions because I have a 4 year old who we

are trying

> to train from the start what she can and cannot eat and the

reasons behind

> it.

>

> How old is your son and does he question why his diet is

different? Does he

> understand why he can't eat with the group or has that come up?

>

> We have a mixed household and my daughter at not quite 2 1/2 was

diagnosed

> and we have been open with her from the start. She understands

she has

> Celiac and that if she stays GF she can be healthy and if she eats

gluten

> then she will get sick. We have told her this from the start and

she has

> been okay with it. She knows that her diet is different but she

also knows

> why it is different and what will happen if she eats gluten. With

that

> being said she is not consumed by it and worrying about it all the

time. If

> a snack comes up then she will ask or she has even already told

people she

> can't have it because it has gluten and been right! But of course

on the

> other hand almost any snack people are going to give her has

gluten in it so

> it wasn't much of a gamble to say she was right.

>

> I do not want to harm my daughter in anyway and now with this whole

> conversation going I am afraid I have found myself questioning my

whole

> process AGAIN!

>

>

> SPRING IS HERE!

>

[Guest guest]

Very well put.

Lori

> > > I have really enjoyed being a part of this chat group. The

> > support

> > > and heated debates are inspiring. I've been struggling to

post

> > this

> > > comment for a while because I'm not sure how people will take

> it.

> > > But here it goes............

> > >

> > > Everytime someone referrs to themselves or someone else

> as " celiac "

> > > really upsets me. Please remember that we are people first

and

> the

> > > disease is only a fraction of who we are. We are people who

> have

> > > celiac or someone who has celiac. By stating " I'm celiac

or " my

> > > celiac someone " labels you as a disease and takes away your

> > > individuality.

> > >

> > > I am completely aware that everyone cares and loves themselves

> or

> > > their family member with this disease, so please don't get the

> > wrong

> > > impression. I also know it's easy to get completely absorbed

> and

> > > overwhelmed by the daily challenges of this disease. I'm just

> > asking

> > > that you please stop labeling yourself or someone else as a

> disease

> > > and take your individuality back.

> > >

> > > There are many creative people in this chat group and maybe

> someone

> > > could think of some nice, short abreviations or symbols that

we

> can

> > > use to clarify who we're refering to, in our emails, with this

> > > disease.

> > >

> > > Best Regards,

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Very well put.

Lori

> > > I have really enjoyed being a part of this chat group. The

> > support

> > > and heated debates are inspiring. I've been struggling to

post

> > this

> > > comment for a while because I'm not sure how people will take

> it.

> > > But here it goes............

> > >

> > > Everytime someone referrs to themselves or someone else

> as " celiac "

> > > really upsets me. Please remember that we are people first

and

> the

> > > disease is only a fraction of who we are. We are people who

> have

> > > celiac or someone who has celiac. By stating " I'm celiac

or " my

> > > celiac someone " labels you as a disease and takes away your

> > > individuality.

> > >

> > > I am completely aware that everyone cares and loves themselves

> or

> > > their family member with this disease, so please don't get the

> > wrong

> > > impression. I also know it's easy to get completely absorbed

> and

> > > overwhelmed by the daily challenges of this disease. I'm just

> > asking

> > > that you please stop labeling yourself or someone else as a

> disease

> > > and take your individuality back.

> > >

> > > There are many creative people in this chat group and maybe

> someone

> > > could think of some nice, short abreviations or symbols that

we

> can

> > > use to clarify who we're refering to, in our emails, with this

> > > disease.

> > >

> > > Best Regards,

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Very well put.

Lori

> > > I have really enjoyed being a part of this chat group. The

> > support

> > > and heated debates are inspiring. I've been struggling to

post

> > this

> > > comment for a while because I'm not sure how people will take

> it.

> > > But here it goes............

> > >

> > > Everytime someone referrs to themselves or someone else

> as " celiac "

> > > really upsets me. Please remember that we are people first

and

> the

> > > disease is only a fraction of who we are. We are people who

> have

> > > celiac or someone who has celiac. By stating " I'm celiac

or " my

> > > celiac someone " labels you as a disease and takes away your

> > > individuality.

> > >

> > > I am completely aware that everyone cares and loves themselves

> or

> > > their family member with this disease, so please don't get the

> > wrong

> > > impression. I also know it's easy to get completely absorbed

> and

> > > overwhelmed by the daily challenges of this disease. I'm just

> > asking

> > > that you please stop labeling yourself or someone else as a

> disease

> > > and take your individuality back.

> > >

> > > There are many creative people in this chat group and maybe

> someone

> > > could think of some nice, short abreviations or symbols that

we

> can

> > > use to clarify who we're refering to, in our emails, with this

> > > disease.

> > >

> > > Best Regards,

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Hi ,

Well, I'm not really sure what to tell you. My son was diagnosed at 2 1/2. I switched his diet, and worked with his daycare provider. THankfully she'd had him since he was a baby, so experienced first hand his rapid weight-loss and his ethiopian appearance...so she was 100% ready to do whatever it took to make sure he was healthy. She did a great job of not only training him that he couldn't eat what the other kids had, but also training the other kids that he can't have things and that they cannot share their foods with him. My son is 4 now, and doesn't really question it. He knows he can't have things with flour or gluten in them. I think I might have told him he has Celiac, and if he eats those things his belly will hurt, but all he seems to tell people is that he can't have things with flour or gluten, and it will make his belly hurt. I figure as long as he's got that covered, we're good for now. I've even heard him tell people on his own before "I can't have that, it has flour in it" So, something has clicked somewhere.

He knows he's different, he knows he'll be sick if he eats things the other kids eat, and it doesn't seem to bother him. I think that's the beauty of him being so young when diagnosed, he doesn't know any better and at that age he doesn't "know" to be embarrassed or uncomfortable about it like an adult or teen would be. It just is the way things are in his world. Of course, I suppose the fact that his daycare provider has been so wonderful about it has probably helped that.

From: SillyYaks [mailto:SillyYaks ] On Behalf Of Marvin and BjorgeSent: Tuesday, May 23, 2006 5:32 PMTo: SillyYaks Subject: Re: Caution: Labeling individuals as a disease

Bridget,

I have a couple of questions because I have a 4 year old who we are trying to train from the start what she can and cannot eat and the reasons behind it.

How old is your son and does he question why his diet is different? Does he understand why he can't eat with the group or has that come up?

We have a mixed household and my daughter at not quite 2 1/2 was diagnosed and we have been open with her from the start. She understands she has Celiac and that if she stays GF she can be healthy and if she eats gluten then she will get sick. We have told her this from the start and she has been okay with it. She knows that her diet is different but she also knows why it is different and what will happen if she eats gluten. With that being said she is not consumed by it and worrying about it all the time. If a snack comes up then she will ask or she has even already told people she can't have it because it has gluten and been right! But of course on the other hand almost any snack people are going to give her has gluten in it so it wasn't much of a gamble to say she was right.

I do not want to harm my daughter in anyway and now with this whole conversation going I am afraid I have found myself questioning my whole process AGAIN!

SPRING IS HERE!

[Guest guest]

Hi ,

Well, I'm not really sure what to tell you. My son was diagnosed at 2 1/2. I switched his diet, and worked with his daycare provider. THankfully she'd had him since he was a baby, so experienced first hand his rapid weight-loss and his ethiopian appearance...so she was 100% ready to do whatever it took to make sure he was healthy. She did a great job of not only training him that he couldn't eat what the other kids had, but also training the other kids that he can't have things and that they cannot share their foods with him. My son is 4 now, and doesn't really question it. He knows he can't have things with flour or gluten in them. I think I might have told him he has Celiac, and if he eats those things his belly will hurt, but all he seems to tell people is that he can't have things with flour or gluten, and it will make his belly hurt. I figure as long as he's got that covered, we're good for now. I've even heard him tell people on his own before "I can't have that, it has flour in it" So, something has clicked somewhere.

He knows he's different, he knows he'll be sick if he eats things the other kids eat, and it doesn't seem to bother him. I think that's the beauty of him being so young when diagnosed, he doesn't know any better and at that age he doesn't "know" to be embarrassed or uncomfortable about it like an adult or teen would be. It just is the way things are in his world. Of course, I suppose the fact that his daycare provider has been so wonderful about it has probably helped that.

From: SillyYaks [mailto:SillyYaks ] On Behalf Of Marvin and BjorgeSent: Tuesday, May 23, 2006 5:32 PMTo: SillyYaks Subject: Re: Caution: Labeling individuals as a disease

Bridget,

I have a couple of questions because I have a 4 year old who we are trying to train from the start what she can and cannot eat and the reasons behind it.

How old is your son and does he question why his diet is different? Does he understand why he can't eat with the group or has that come up?

We have a mixed household and my daughter at not quite 2 1/2 was diagnosed and we have been open with her from the start. She understands she has Celiac and that if she stays GF she can be healthy and if she eats gluten then she will get sick. We have told her this from the start and she has been okay with it. She knows that her diet is different but she also knows why it is different and what will happen if she eats gluten. With that being said she is not consumed by it and worrying about it all the time. If a snack comes up then she will ask or she has even already told people she can't have it because it has gluten and been right! But of course on the other hand almost any snack people are going to give her has gluten in it so it wasn't much of a gamble to say she was right.

I do not want to harm my daughter in anyway and now with this whole conversation going I am afraid I have found myself questioning my whole process AGAIN!

SPRING IS HERE!

[Guest guest]

I wish I could have responded to this sooner but I have been busy with

my new job...

My mom and I had just talked about this the other day. I had told her

I told someone I was a Celiac because they were as well. She said

don't say you're a Celiac, you have Celiac. Then she pretty much

killed her own point by realizing people with diabetes call themselves

diabetic.

I'm still using the " I'm pretty much allergic to wheat but not really.

I don't break out in hives or anything I just get really sick " phrase.

It makes it a lot easier when meeting someone for the first time

instead of explaining everything especially during or around meal time.

-, GF Aggie

[Guest guest]

I wish I could have responded to this sooner but I have been busy with

my new job...

My mom and I had just talked about this the other day. I had told her

I told someone I was a Celiac because they were as well. She said

don't say you're a Celiac, you have Celiac. Then she pretty much

killed her own point by realizing people with diabetes call themselves

diabetic.

I'm still using the " I'm pretty much allergic to wheat but not really.

I don't break out in hives or anything I just get really sick " phrase.

It makes it a lot easier when meeting someone for the first time

instead of explaining everything especially during or around meal time.

-, GF Aggie

[Guest guest]

I wish I could have responded to this sooner but I have been busy with

my new job...

My mom and I had just talked about this the other day. I had told her

I told someone I was a Celiac because they were as well. She said

don't say you're a Celiac, you have Celiac. Then she pretty much

killed her own point by realizing people with diabetes call themselves

diabetic.

I'm still using the " I'm pretty much allergic to wheat but not really.

I don't break out in hives or anything I just get really sick " phrase.

It makes it a lot easier when meeting someone for the first time

instead of explaining everything especially during or around meal time.

-, GF Aggie

[Guest guest]

My kids are also older kids with celiac. My 9 year old was diagnosed at 15 months, my 11 year old at age 5. We have always been very matter of fact about the condition from the very beginning. "You have green eyes and if you eat gluten your tummy will hurt because you have celiac disease."

I think this has been a big part of their acceptance. The disease and limitations it brings has never been an issue and we keep the focus on what they can have and can do. I have noticed in our large support group with many celaic kids that the earlier the kids are diagnosed, the more parents have a "let's deal with it and move on" approach and the sooner they transfer responsbility for the diet to the kids, the better adjusted the family seems to be to the situation.

RE: Re: Caution: Labeling individuals as a disease

My boys are 7 and 10 and have been GF for 3 years. Both have known since the beginning why they are GF, why they needed a biopsy etc... Mind you, my MIL has celiacs too so they knew the term beforehand. I am, to a fault, honest with my children and don't particularly believe in shielding from the stuff they encounter. [ I'm not going to let them go to a R rated movie, so they won't encounter stuff they aren't ready for purposefully, but if they hear adults talking and want an explanation of something, I will oblige (in their language).] So far they seem to not be too terribly traumatized. I cannot see the advantage of shielding them from a diagnosis that they are going to live with forever. When would be the right time to "spring it on them"? I really wouldn't let others comments rock you to the point that you doubt your decision making as a mom.

It sounds like you are doing just fine for YOUR family.

As for the PC "person with celiac disease" stuff - whatever rocks your boat I guess. My dh is a diabetic, my kids are celiacs, I'm a neurotic, anxiety meds taking atheist... If hearing us defined that way makes someone not want to play with us, so be it, they're probably not much fun anyway.

Michele

Bridget,

I have a couple of questions because I have a 4 year old who we are trying to train from the start what she can and cannot eat and the reasons behind it.

How old is your son and does he question why his diet is different? Does he understand why he can't eat with the group or has that come up?

We have a mixed household and my daughter at not quite 2 1/2 was diagnosed and we have been open with her from the start. She understands she has Celiac and that if she stays GF she can be healthy and if she eats gluten then she will get sick. We have told her this from the start and she has been okay with it. She knows that her diet is different but she also knows why it is different and what will happen if she eats gluten. With that being said she is not consumed by it and worrying about it all the time. If a snack comes up then she will ask or she has even already told people she can't have it because it has gluten and been right! But of course on the other hand almost any snack people are going to give her has gluten in it so it wasn't much of a gamble to say she was right.

I do not want to harm my daughter in anyway and now with this whole conversation going I am afraid I have found myself questioning my whole process AGAIN!