Re: another meltdown

[Guest guest]

Here's an offbeat take. How about thinking about how lucky you are

to ONLY have Celiac in your life.

For instance, 3 people in my family died of cancer in 2005.

Suddenly, skipping Friday Pizza night, didn't seem so bad.

Of course, that's an extreme situation. What about the Tsunami,

Katrina, all the people in the Northeast who cannot afford heat.

My point is, focus on the good in your life. While you're at it, put

some energy into organizations and causes that help the people

affected by those problems.

paul

>

> i heard back from the docs office about my dh and 3 more of my

kids----

> all have tested negative. i am really glad to hear that, but i

turned

> around and had another bawling session, anyway, because i feel so

bad

> for my other girls. actually, they are taking it better than me,

but

> i'm not sure molly really understands it all. the twins needed a

10

> hour project for school, so their project is " learning to cook

gluten

> free " . they have already made banana bread, muffins,brownies, and

> pancakes (pancakes were yucky--need a different recipe). how long

> before you just finally " got over it " .

> christine

>

[Guest guest]

Here's an offbeat take. How about thinking about how lucky you are

to ONLY have Celiac in your life.

For instance, 3 people in my family died of cancer in 2005.

Suddenly, skipping Friday Pizza night, didn't seem so bad.

Of course, that's an extreme situation. What about the Tsunami,

Katrina, all the people in the Northeast who cannot afford heat.

My point is, focus on the good in your life. While you're at it, put

some energy into organizations and causes that help the people

affected by those problems.

paul

>

> i heard back from the docs office about my dh and 3 more of my

kids----

> all have tested negative. i am really glad to hear that, but i

turned

> around and had another bawling session, anyway, because i feel so

bad

> for my other girls. actually, they are taking it better than me,

but

> i'm not sure molly really understands it all. the twins needed a

10

> hour project for school, so their project is " learning to cook

gluten

> free " . they have already made banana bread, muffins,brownies, and

> pancakes (pancakes were yucky--need a different recipe). how long

> before you just finally " got over it " .

> christine

>

[Guest guest]

Here's an offbeat take. How about thinking about how lucky you are

to ONLY have Celiac in your life.

For instance, 3 people in my family died of cancer in 2005.

Suddenly, skipping Friday Pizza night, didn't seem so bad.

Of course, that's an extreme situation. What about the Tsunami,

Katrina, all the people in the Northeast who cannot afford heat.

My point is, focus on the good in your life. While you're at it, put

some energy into organizations and causes that help the people

affected by those problems.

paul

>

> i heard back from the docs office about my dh and 3 more of my

kids----

> all have tested negative. i am really glad to hear that, but i

turned

> around and had another bawling session, anyway, because i feel so

bad

> for my other girls. actually, they are taking it better than me,

but

> i'm not sure molly really understands it all. the twins needed a

10

> hour project for school, so their project is " learning to cook

gluten

> free " . they have already made banana bread, muffins,brownies, and

> pancakes (pancakes were yucky--need a different recipe). how long

> before you just finally " got over it " .

> christine

>

[Guest guest]

,

Although not yet dxed, I have several other autoimmune diseases.You never get over it.It will always be part of who you are and being different just gets to be easier.

I sometimes need to say I have to leave early and rest or I cannot eat that food right now.It is just who I am.

The more people you meet with whatever your disease, the easier it all becomes.

I wish you and your girls the best.

Doreen

another meltdown

i heard back from the docs office about my dh and 3 more of my kids----all have tested negative. i am really glad to hear that, but i turned around and had another bawling session, anyway, because i feel so bad for my other girls. actually, they are taking it better than me, but i'm not sure molly really understands it all. the twins needed a 10 hour project for school, so their project is "learning to cook gluten free". they have already made banana bread, muffins,brownies, and pancakes (pancakes were yucky--need a different recipe). how long before you just finally "got over it".christine

[Guest guest]

Thank you for putting this into perspective. And I just wanted to add, one of my problems was also our Thursday night pizza night. But after feeling so much better, I don't even care. Now I either have a frozen Amy's pizza, a protein-style In'n'Out burger or Whole Foods salad bar and I still feel like I'm participating in the Thursday night feeling. Kids are resilient - they probably will be over and done with it long before Mom!

--Trudy San , CA "People who believe in absurdities will eventually commit atrocities." ~Voltaire

-------------- Original message -------------- Here's an offbeat take. How about thinking about how lucky you are to ONLY have Celiac in your life. For instance, 3 people in my family died of cancer in 2005. Suddenly, skipping Friday Pizza night, didn't seem so bad. Of course, that's an extreme situation. What about the Tsunami, Katrina, all the people in the Northeast who cannot afford heat.My point is, focus on the good in your life. While you're at it, put some energy into organizations and causes that help the people affected by those problems.paul

[Guest guest]

Thank you for putting this into perspective. And I just wanted to add, one of my problems was also our Thursday night pizza night. But after feeling so much better, I don't even care. Now I either have a frozen Amy's pizza, a protein-style In'n'Out burger or Whole Foods salad bar and I still feel like I'm participating in the Thursday night feeling. Kids are resilient - they probably will be over and done with it long before Mom!

--Trudy San , CA "People who believe in absurdities will eventually commit atrocities." ~Voltaire

-------------- Original message -------------- Here's an offbeat take. How about thinking about how lucky you are to ONLY have Celiac in your life. For instance, 3 people in my family died of cancer in 2005. Suddenly, skipping Friday Pizza night, didn't seem so bad. Of course, that's an extreme situation. What about the Tsunami, Katrina, all the people in the Northeast who cannot afford heat.My point is, focus on the good in your life. While you're at it, put some energy into organizations and causes that help the people affected by those problems.paul

[Guest guest]

, It took me

roughly 3-4 months to “get over it” (as you called it) for the most

part. All of a sudden you start seeing things in a whole new light. Instead of

only seeing and saying “can’t have that” things turn into “can

have this” or “can make that with this change”. Seems to me

that it’s all just a matter of how long it takes you and your brain to

soak it all in and begin making the changes without thinking about it. Imagine

you were all of a sudden transplanted in Egypt (or some other place totally unfamiliar to you) and now you have

to learn new customs and a new language at the same time. It all appears very overwhelming

in the beginning and then it just starts to click. The same basic principles apply

here. It is a whole new culture with a whole new language, for me anyway. You

are doing the right thing by being here asking for help and reassurance; it

will really make this a lot easier for you. Best wishes in your new adventure. J -, Washington State

[Guest guest]

, It took me

roughly 3-4 months to “get over it” (as you called it) for the most

part. All of a sudden you start seeing things in a whole new light. Instead of

only seeing and saying “can’t have that” things turn into “can

have this” or “can make that with this change”. Seems to me

that it’s all just a matter of how long it takes you and your brain to

soak it all in and begin making the changes without thinking about it. Imagine

you were all of a sudden transplanted in Egypt (or some other place totally unfamiliar to you) and now you have

to learn new customs and a new language at the same time. It all appears very overwhelming

in the beginning and then it just starts to click. The same basic principles apply

here. It is a whole new culture with a whole new language, for me anyway. You

are doing the right thing by being here asking for help and reassurance; it

will really make this a lot easier for you. Best wishes in your new adventure. J -, Washington State

[Guest guest]

, It took me

roughly 3-4 months to “get over it” (as you called it) for the most

part. All of a sudden you start seeing things in a whole new light. Instead of

only seeing and saying “can’t have that” things turn into “can

have this” or “can make that with this change”. Seems to me

that it’s all just a matter of how long it takes you and your brain to

soak it all in and begin making the changes without thinking about it. Imagine

you were all of a sudden transplanted in Egypt (or some other place totally unfamiliar to you) and now you have

to learn new customs and a new language at the same time. It all appears very overwhelming

in the beginning and then it just starts to click. The same basic principles apply

here. It is a whole new culture with a whole new language, for me anyway. You

are doing the right thing by being here asking for help and reassurance; it

will really make this a lot easier for you. Best wishes in your new adventure. J -, Washington State

[Guest guest]

> Kids are resilient - they probably will be over and done with

> it long before Mom!

>

Amen to that. Plus there is a special kind of ache that one gets when

one's KIDS are sick or hurt and a boo-boo kiss won't help. It's an

awful feeling to be powerless to mend something bad that happens to

your child. Broken heart, broken gut... the ache to the parents is the

same.

But the kids will get over it. And eventually your grief over the

situation will subside.

Honest.

You may ALWAYS wish for a magic want to make it all go away in a

blink. I know I do. And while I'm at waving the magic wand for my

broken gut, I'd wave it to heal the kids' asthma, life-threatening

allergies, etc.

Oh, and while I'm waving that magic wand, I'd also give myself curly

hair. Always wanted curly hair... but now that it's gray it won't take

a perm any more. So my only option now is the magic wand. :-)

[Guest guest]

> Kids are resilient - they probably will be over and done with

> it long before Mom!

>

Amen to that. Plus there is a special kind of ache that one gets when

one's KIDS are sick or hurt and a boo-boo kiss won't help. It's an

awful feeling to be powerless to mend something bad that happens to

your child. Broken heart, broken gut... the ache to the parents is the

same.

But the kids will get over it. And eventually your grief over the

situation will subside.

Honest.

You may ALWAYS wish for a magic want to make it all go away in a

blink. I know I do. And while I'm at waving the magic wand for my

broken gut, I'd wave it to heal the kids' asthma, life-threatening

allergies, etc.

Oh, and while I'm waving that magic wand, I'd also give myself curly

hair. Always wanted curly hair... but now that it's gray it won't take

a perm any more. So my only option now is the magic wand. :-)

[Guest guest]

> Kids are resilient - they probably will be over and done with

> it long before Mom!

>

Amen to that. Plus there is a special kind of ache that one gets when

one's KIDS are sick or hurt and a boo-boo kiss won't help. It's an

awful feeling to be powerless to mend something bad that happens to

your child. Broken heart, broken gut... the ache to the parents is the

same.

But the kids will get over it. And eventually your grief over the

situation will subside.

Honest.

You may ALWAYS wish for a magic want to make it all go away in a

blink. I know I do. And while I'm at waving the magic wand for my

broken gut, I'd wave it to heal the kids' asthma, life-threatening

allergies, etc.

Oh, and while I'm waving that magic wand, I'd also give myself curly

hair. Always wanted curly hair... but now that it's gray it won't take

a perm any more. So my only option now is the magic wand. :-)

[Guest guest]

,

I would say it took me about 2 months to "get over it". First let me tell you that I do not have celiac--but 2 of my children do. When my (then) 2 year old was diagnosed almost a year ago, I actually said "Thank God" when the nurse called with the biopsy results. That was because he was SO ill, almost near death, and we had been seeking a diagnosis for 5 months and I was thrilled to finally know what it was, to know that it was completely treatable without any horrible surgeries, injections, etc. Also, I reasoned, since he was so young he'd "never know the difference" on the foods. But then a few months later, the nurse called to confirm my 8 year old sons diagnosis, I bawled my eyes out. It is funny how you can have such a different reaction to essentially the same news. But I felt like it would be so much harder for him to give up favorite foods--he would "know" what he was missing. Also, he did not seem to have any health problems so we didn't have the relief you feel when you know an ill child is going to get better.

Well, I have to tell you that I have been amazed at how well he has adapted. He is eating delicious food--he likes everything he eats. I mean he's a kid so if I was giving him "yucky" stuff he wouldn't eat it. We eat strictly gluten free dinners as a family because we feel that nothing should go on the family dinner table that is off limits to our 2 boys. We also have a 6 year old daughter who is not celiac and she complains about the food changes far more than our sons do. The biggest obstacle was going in to the school and making sure the cafeteria staff "gets this" and we are comfortable that he can at least occasionally eat safe school lunches. I have to say the school was really incredible on this--they arrange a meeting with his teacher, the school nurse, the regional resource nurse, the manager of Food Services, the staff dietitian and the cafeteria manager. They provided us with ingredient lists and recipes, came up with a plan IN WRITING of how his food would be handled and what safe modifications would be made and even printed a special lunch menu for him that designates special substitutions.

When he goes to birthday parties, I call ahead to find out what foods are being served (besides the obvious cake) and make comparable substitutes for him to bring with him. He seems very happy with this arrangement and, at times, some kids have said things like, "Oh, you're so lucky" when they see some of his "special" treats.

Sorry I have rambled so long but just wanted you to know it WILL get better, it WILL become easier, and yes, this is probably much harder on you than on your daughters. Kids are much more resilient. Just remember--your attitude toward this will most likely set the tone for what THEIR attitude will be. I refuse to, at least outwardly, "feel sorry" for my sons because I don't want them growing up feeling sorry for themselves. My attitude to them is you can eat just about anything, we just have to have to make some things "special" or "homemade".

Hope this helps you!. Hang in there!

another meltdown

i heard back from the docs office about my dh and 3 more of my kids----all have tested negative. i am really glad to hear that, but i turned around and had another bawling session, anyway, because i feel so bad for my other girls. actually, they are taking it better than me, but i'm not sure molly really understands it all. the twins needed a 10 hour project for school, so their project is "learning to cook gluten free". they have already made banana bread, muffins,brownies, and pancakes (pancakes were yucky--need a different recipe). how long before you just finally "got over it".christine

[Guest guest]

,

I would say it took me about 2 months to "get over it". First let me tell you that I do not have celiac--but 2 of my children do. When my (then) 2 year old was diagnosed almost a year ago, I actually said "Thank God" when the nurse called with the biopsy results. That was because he was SO ill, almost near death, and we had been seeking a diagnosis for 5 months and I was thrilled to finally know what it was, to know that it was completely treatable without any horrible surgeries, injections, etc. Also, I reasoned, since he was so young he'd "never know the difference" on the foods. But then a few months later, the nurse called to confirm my 8 year old sons diagnosis, I bawled my eyes out. It is funny how you can have such a different reaction to essentially the same news. But I felt like it would be so much harder for him to give up favorite foods--he would "know" what he was missing. Also, he did not seem to have any health problems so we didn't have the relief you feel when you know an ill child is going to get better.

Well, I have to tell you that I have been amazed at how well he has adapted. He is eating delicious food--he likes everything he eats. I mean he's a kid so if I was giving him "yucky" stuff he wouldn't eat it. We eat strictly gluten free dinners as a family because we feel that nothing should go on the family dinner table that is off limits to our 2 boys. We also have a 6 year old daughter who is not celiac and she complains about the food changes far more than our sons do. The biggest obstacle was going in to the school and making sure the cafeteria staff "gets this" and we are comfortable that he can at least occasionally eat safe school lunches. I have to say the school was really incredible on this--they arrange a meeting with his teacher, the school nurse, the regional resource nurse, the manager of Food Services, the staff dietitian and the cafeteria manager. They provided us with ingredient lists and recipes, came up with a plan IN WRITING of how his food would be handled and what safe modifications would be made and even printed a special lunch menu for him that designates special substitutions.

When he goes to birthday parties, I call ahead to find out what foods are being served (besides the obvious cake) and make comparable substitutes for him to bring with him. He seems very happy with this arrangement and, at times, some kids have said things like, "Oh, you're so lucky" when they see some of his "special" treats.

Sorry I have rambled so long but just wanted you to know it WILL get better, it WILL become easier, and yes, this is probably much harder on you than on your daughters. Kids are much more resilient. Just remember--your attitude toward this will most likely set the tone for what THEIR attitude will be. I refuse to, at least outwardly, "feel sorry" for my sons because I don't want them growing up feeling sorry for themselves. My attitude to them is you can eat just about anything, we just have to have to make some things "special" or "homemade".

Hope this helps you!. Hang in there!

another meltdown

i heard back from the docs office about my dh and 3 more of my kids----all have tested negative. i am really glad to hear that, but i turned around and had another bawling session, anyway, because i feel so bad for my other girls. actually, they are taking it better than me, but i'm not sure molly really understands it all. the twins needed a 10 hour project for school, so their project is "learning to cook gluten free". they have already made banana bread, muffins,brownies, and pancakes (pancakes were yucky--need a different recipe). how long before you just finally "got over it".christine

[Guest guest]

,

I'm still pretty new at this gf thing myself. My 5yo dd was dx by bloods and

then biopsy in July, and then my dh had a surprise positive dx by biopsy

(negative bloods and no symptoms except mild anemia) in Aug. When I first heard

over the phone about my dd I wanted to cry so badly, but my 3 dc were right

there. I ended up crying in the car on the way to a play date, and then again

the first time I went to the grocery store looking for gf items. Right there in

the pasta aisle, looking at a package of Tinkyada spaghetti for $3.49 I just

started crying (must have seemed like a lunatic to the other shoppers). Then I

was in denial for a while because it seemed so hard. That was in Sept, I think.

I was more upset for myself because now I will have to do this not just for the

next 12 yrs or so, but for the rest of our lives because of my dh. I felt like

it wasn't fair, and, yes, I felt angry, too, that I have to do all this. My dh

doesn't cook, so it's all on me. He's perfectly happy as long as I make food

for him to eat, and my dd's appetite has made an amazing improvement now that

she can actually digest food. So really, I had the worst adjustment of

everyone.

Anyway, it has now been 5 months and I have to admit I'm getting used to the gf

lifestyle. It's really not so bad. We've found products and ways to fix foods

that we all like and can actually afford. Whenever there is a birthday party or

some other event (we've had a family holiday dinner, Thanksgiving with friends,

potlucks, even a 10 day vacation to my in-laws in FL) I bring food for my dh and

dd to eat. I don't love that part at all, but it is keeping them healthy, so I

am accepting it, and it is becoming second nature. I do all baking gf and all

dinners gf, but breakfast, lunch and snacks are mixed. I have to keep my two

other dc on gluten for future testing. So all this is to say that I've been

there too, and yes, you do get used to it.

HTH,

Laurie in NJ

" christineheiner " wrote:

>i heard back from the docs office about my dh and 3 more of my kids----

>all have tested negative. i am really glad to hear that, but i turned

>around and had another bawling session, anyway, because i feel so bad

>for my other girls. actually, they are taking it better than me, but

>i'm not sure molly really understands it all. the twins needed a 10

>hour project for school, so their project is " learning to cook gluten

>free " . they have already made banana bread, muffins,brownies, and

>pancakes (pancakes were yucky--need a different recipe). how long

>before you just finally " got over it " .

>christine

>

>

>

>

__________________________________________________________________

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[Guest guest]

,

I'm still pretty new at this gf thing myself. My 5yo dd was dx by bloods and

then biopsy in July, and then my dh had a surprise positive dx by biopsy

(negative bloods and no symptoms except mild anemia) in Aug. When I first heard

over the phone about my dd I wanted to cry so badly, but my 3 dc were right

there. I ended up crying in the car on the way to a play date, and then again

the first time I went to the grocery store looking for gf items. Right there in

the pasta aisle, looking at a package of Tinkyada spaghetti for $3.49 I just

started crying (must have seemed like a lunatic to the other shoppers). Then I

was in denial for a while because it seemed so hard. That was in Sept, I think.

I was more upset for myself because now I will have to do this not just for the

next 12 yrs or so, but for the rest of our lives because of my dh. I felt like

it wasn't fair, and, yes, I felt angry, too, that I have to do all this. My dh

doesn't cook, so it's all on me. He's perfectly happy as long as I make food

for him to eat, and my dd's appetite has made an amazing improvement now that

she can actually digest food. So really, I had the worst adjustment of

everyone.

Anyway, it has now been 5 months and I have to admit I'm getting used to the gf

lifestyle. It's really not so bad. We've found products and ways to fix foods

that we all like and can actually afford. Whenever there is a birthday party or

some other event (we've had a family holiday dinner, Thanksgiving with friends,

potlucks, even a 10 day vacation to my in-laws in FL) I bring food for my dh and

dd to eat. I don't love that part at all, but it is keeping them healthy, so I

am accepting it, and it is becoming second nature. I do all baking gf and all

dinners gf, but breakfast, lunch and snacks are mixed. I have to keep my two

other dc on gluten for future testing. So all this is to say that I've been

there too, and yes, you do get used to it.

HTH,

Laurie in NJ

" christineheiner " wrote:

>i heard back from the docs office about my dh and 3 more of my kids----

>all have tested negative. i am really glad to hear that, but i turned

>around and had another bawling session, anyway, because i feel so bad

>for my other girls. actually, they are taking it better than me, but

>i'm not sure molly really understands it all. the twins needed a 10

>hour project for school, so their project is " learning to cook gluten

>free " . they have already made banana bread, muffins,brownies, and

>pancakes (pancakes were yucky--need a different recipe). how long

>before you just finally " got over it " .

>christine

>

>

>

>

__________________________________________________________________

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[Guest guest]

,

I'm still pretty new at this gf thing myself. My 5yo dd was dx by bloods and

then biopsy in July, and then my dh had a surprise positive dx by biopsy

(negative bloods and no symptoms except mild anemia) in Aug. When I first heard

over the phone about my dd I wanted to cry so badly, but my 3 dc were right

there. I ended up crying in the car on the way to a play date, and then again

the first time I went to the grocery store looking for gf items. Right there in

the pasta aisle, looking at a package of Tinkyada spaghetti for $3.49 I just

started crying (must have seemed like a lunatic to the other shoppers). Then I

was in denial for a while because it seemed so hard. That was in Sept, I think.

I was more upset for myself because now I will have to do this not just for the

next 12 yrs or so, but for the rest of our lives because of my dh. I felt like

it wasn't fair, and, yes, I felt angry, too, that I have to do all this. My dh

doesn't cook, so it's all on me. He's perfectly happy as long as I make food

for him to eat, and my dd's appetite has made an amazing improvement now that

she can actually digest food. So really, I had the worst adjustment of

everyone.

Anyway, it has now been 5 months and I have to admit I'm getting used to the gf

lifestyle. It's really not so bad. We've found products and ways to fix foods

that we all like and can actually afford. Whenever there is a birthday party or

some other event (we've had a family holiday dinner, Thanksgiving with friends,

potlucks, even a 10 day vacation to my in-laws in FL) I bring food for my dh and

dd to eat. I don't love that part at all, but it is keeping them healthy, so I

am accepting it, and it is becoming second nature. I do all baking gf and all

dinners gf, but breakfast, lunch and snacks are mixed. I have to keep my two

other dc on gluten for future testing. So all this is to say that I've been

there too, and yes, you do get used to it.

HTH,

Laurie in NJ

" christineheiner " wrote:

>i heard back from the docs office about my dh and 3 more of my kids----

>all have tested negative. i am really glad to hear that, but i turned

>around and had another bawling session, anyway, because i feel so bad

>for my other girls. actually, they are taking it better than me, but

>i'm not sure molly really understands it all. the twins needed a 10

>hour project for school, so their project is " learning to cook gluten

>free " . they have already made banana bread, muffins,brownies, and

>pancakes (pancakes were yucky--need a different recipe). how long

>before you just finally " got over it " .

>christine

>

>

>

>

__________________________________________________________________

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[Guest guest]

---

I don't see it as something to get over in the sense that there will

always be occasional things that you can't do and regret, and I am not

sure that it helps to look at people who are worse off. E.g, for a

while I dated a guy with a spinal cord injury and while I felt lucky

compared to him since he couldn't walk and had trouble with his hands

and other things, it was two separate situations.

What has helped for me is realizing what a character-building

opportunity I was given. Food is nice, but, in the scheme of things,

not that important. Having to be GF really gives me an opportunity to

put that into perspective.

Janet

> i heard back from the docs office about my dh and 3 more of my kids----

> all have tested negative. i am really glad to hear that, but i turned

> around and had another bawling session, anyway, because i feel so bad

> for my other girls. actually, they are taking it better than me, but

> i'm not sure molly really understands it all. the twins needed a 10

> hour project for school, so their project is " learning to cook gluten

> free " . they have already made banana bread, muffins,brownies, and

> pancakes (pancakes were yucky--need a different recipe). how long

> before you just finally " got over it " .

> christine

>

>

>

>

>

>

>

>

[Guest guest]

---

I don't see it as something to get over in the sense that there will

always be occasional things that you can't do and regret, and I am not

sure that it helps to look at people who are worse off. E.g, for a

while I dated a guy with a spinal cord injury and while I felt lucky

compared to him since he couldn't walk and had trouble with his hands

and other things, it was two separate situations.

What has helped for me is realizing what a character-building

opportunity I was given. Food is nice, but, in the scheme of things,

not that important. Having to be GF really gives me an opportunity to

put that into perspective.

Janet

> i heard back from the docs office about my dh and 3 more of my kids----

> all have tested negative. i am really glad to hear that, but i turned

> around and had another bawling session, anyway, because i feel so bad

> for my other girls. actually, they are taking it better than me, but

> i'm not sure molly really understands it all. the twins needed a 10

> hour project for school, so their project is " learning to cook gluten

> free " . they have already made banana bread, muffins,brownies, and

> pancakes (pancakes were yucky--need a different recipe). how long

> before you just finally " got over it " .

> christine

>

>

>

>

>

>

>

>

[Guest guest]

---

I don't see it as something to get over in the sense that there will

always be occasional things that you can't do and regret, and I am not

sure that it helps to look at people who are worse off. E.g, for a

while I dated a guy with a spinal cord injury and while I felt lucky

compared to him since he couldn't walk and had trouble with his hands

and other things, it was two separate situations.

What has helped for me is realizing what a character-building

opportunity I was given. Food is nice, but, in the scheme of things,

not that important. Having to be GF really gives me an opportunity to

put that into perspective.

Janet

> i heard back from the docs office about my dh and 3 more of my kids----

> all have tested negative. i am really glad to hear that, but i turned

> around and had another bawling session, anyway, because i feel so bad

> for my other girls. actually, they are taking it better than me, but

> i'm not sure molly really understands it all. the twins needed a 10

> hour project for school, so their project is " learning to cook gluten

> free " . they have already made banana bread, muffins,brownies, and

> pancakes (pancakes were yucky--need a different recipe). how long

> before you just finally " got over it " .

> christine

>

>

>

>

>

>

>

>

[Guest guest]

I would just like to jump in here and disagree just a little bit. I

think food is very important! BUT I don't think GLUTEN food is

important. Heh heh. I have experimented more with food, and learned

more about how to cook " exotic " things due to having celiac.

Sometimes I wonder, if I hadn't had celiac, if I might be a boxed

macaroni and cheese kind of cook... and I'm glad that I'm not,

because I have so much fun experimenting in the kitchen. I wanted

to jump in, not to invalidate the down side to celiac, because of

course it can be difficult and stressful and make dinner parties less

fun (though they are more fun if you bring exciting things with you

that you and other people WANT to eat), but because I think it is

possible, especially for the celiacs diagnosed at a young age, for

gluten to become something you don't care about or miss. I remember

at the celiac conference a non-celiac mom expressing surprise (and

happiness) at their teenage celiac expressing a similar attitude. So,

if you are a celiac mom (or dad) of a newly diagnosed little one, I

hope that you can take heart at this, and know while it might be

tough to turn down those ice cream cones now, it can get easier for

them as they get older and even be something that becomes a positive

part of their identity.

-

>

> ---

>

> I don't see it as something to get over in the sense that there will

> always be occasional things that you can't do and regret, and I am

not

> sure that it helps to look at people who are worse off. E.g, for a

> while I dated a guy with a spinal cord injury and while I felt lucky

> compared to him since he couldn't walk and had trouble with his

hands

> and other things, it was two separate situations.

>

> What has helped for me is realizing what a character-building

> opportunity I was given. Food is nice, but, in the scheme of

things,

> not that important. Having to be GF really gives me an opportunity

to

> put that into perspective.

>

> Janet

[Guest guest]

I would just like to jump in here and disagree just a little bit. I

think food is very important! BUT I don't think GLUTEN food is

important. Heh heh. I have experimented more with food, and learned

more about how to cook " exotic " things due to having celiac.

Sometimes I wonder, if I hadn't had celiac, if I might be a boxed

macaroni and cheese kind of cook... and I'm glad that I'm not,

because I have so much fun experimenting in the kitchen. I wanted

to jump in, not to invalidate the down side to celiac, because of

course it can be difficult and stressful and make dinner parties less

fun (though they are more fun if you bring exciting things with you

that you and other people WANT to eat), but because I think it is

possible, especially for the celiacs diagnosed at a young age, for

gluten to become something you don't care about or miss. I remember

at the celiac conference a non-celiac mom expressing surprise (and

happiness) at their teenage celiac expressing a similar attitude. So,

if you are a celiac mom (or dad) of a newly diagnosed little one, I

hope that you can take heart at this, and know while it might be

tough to turn down those ice cream cones now, it can get easier for

them as they get older and even be something that becomes a positive

part of their identity.

-

>

> ---

>

> I don't see it as something to get over in the sense that there will

> always be occasional things that you can't do and regret, and I am

not

> sure that it helps to look at people who are worse off. E.g, for a

> while I dated a guy with a spinal cord injury and while I felt lucky

> compared to him since he couldn't walk and had trouble with his

hands

> and other things, it was two separate situations.

>

> What has helped for me is realizing what a character-building

> opportunity I was given. Food is nice, but, in the scheme of

things,

> not that important. Having to be GF really gives me an opportunity

to

> put that into perspective.

>

> Janet

[Guest guest]

I would just like to jump in here and disagree just a little bit. I

think food is very important! BUT I don't think GLUTEN food is

important. Heh heh. I have experimented more with food, and learned

more about how to cook " exotic " things due to having celiac.

Sometimes I wonder, if I hadn't had celiac, if I might be a boxed

macaroni and cheese kind of cook... and I'm glad that I'm not,

because I have so much fun experimenting in the kitchen. I wanted

to jump in, not to invalidate the down side to celiac, because of

course it can be difficult and stressful and make dinner parties less

fun (though they are more fun if you bring exciting things with you

that you and other people WANT to eat), but because I think it is

possible, especially for the celiacs diagnosed at a young age, for

gluten to become something you don't care about or miss. I remember

at the celiac conference a non-celiac mom expressing surprise (and

happiness) at their teenage celiac expressing a similar attitude. So,

if you are a celiac mom (or dad) of a newly diagnosed little one, I

hope that you can take heart at this, and know while it might be

tough to turn down those ice cream cones now, it can get easier for

them as they get older and even be something that becomes a positive

part of their identity.

-

>

> ---

>

> I don't see it as something to get over in the sense that there will

> always be occasional things that you can't do and regret, and I am

not

> sure that it helps to look at people who are worse off. E.g, for a

> while I dated a guy with a spinal cord injury and while I felt lucky

> compared to him since he couldn't walk and had trouble with his

hands

> and other things, it was two separate situations.

>

> What has helped for me is realizing what a character-building

> opportunity I was given. Food is nice, but, in the scheme of

things,

> not that important. Having to be GF really gives me an opportunity

to

> put that into perspective.

>

> Janet

[Guest guest]

>

> Here's an offbeat take. How about thinking about how lucky you are

> to ONLY have Celiac in your life.

>

>paul----i appreciate what you said, i have actually been thinking

that it must be really hard for the people that also can't have corn,

milk, rice, etc.---- and hardly any other disease can be controlled

strictly with diet.

but------your reply almost made me laugh (in a sick sort of way,

because life can be so ironic). in the last 8 months my husband lit

himself on fire(not on purpose, i had a hysterectomy, my baby had

tonisils and adenoids removed and an inguinal hernia repaired, one

child had a biopsy (for something else),then we discovered celiac in

the family (which involved another biopsy). in just slightly over 3

years my sister died of cancer, a nephew committed suicide, and my

grandmother died and i had 2 other surgeries and an emergency c-

section. my baby was close to dying in the womb and had what seemed

to be lung problems. she actually had pretty bad acid reflux and at

10 months old she had fundoplication surgery done---a hiatal hernia

was discovered and repaired at the same time. just a few weeks ago i

got a phone call from the school because my son had brought a knife

and had been in the bathroom threatening to slit his

throat............enough feeling sorry for myself!!!! when i think

about it i really DO feel like we have been blessed in so many ways----

sometimes i just have to make an effort to remind myself of the good

things. sorry about this rambling post.

christine

christine

[Guest guest]

>

> Here's an offbeat take. How about thinking about how lucky you are

> to ONLY have Celiac in your life.

>

>paul----i appreciate what you said, i have actually been thinking

that it must be really hard for the people that also can't have corn,

milk, rice, etc.---- and hardly any other disease can be controlled

strictly with diet.

but------your reply almost made me laugh (in a sick sort of way,

because life can be so ironic). in the last 8 months my husband lit

himself on fire(not on purpose, i had a hysterectomy, my baby had

tonisils and adenoids removed and an inguinal hernia repaired, one

child had a biopsy (for something else),then we discovered celiac in

the family (which involved another biopsy). in just slightly over 3

years my sister died of cancer, a nephew committed suicide, and my

grandmother died and i had 2 other surgeries and an emergency c-

section. my baby was close to dying in the womb and had what seemed

to be lung problems. she actually had pretty bad acid reflux and at

10 months old she had fundoplication surgery done---a hiatal hernia

was discovered and repaired at the same time. just a few weeks ago i

got a phone call from the school because my son had brought a knife

and had been in the bathroom threatening to slit his

throat............enough feeling sorry for myself!!!! when i think

about it i really DO feel like we have been blessed in so many ways----

sometimes i just have to make an effort to remind myself of the good

things. sorry about this rambling post.

christine

christine