Re: Not sure this is going well...

[Guest guest]

That's so true Alyssa! Life is not just about food. I eat practically the same

ol' thing everyday, and it really doesn't bother me. And since I had a bowel

obstruction last week, I'm not eating much beyond intro. I know someday I'll be

able to expand my food choices, so for now, I just " suck it up " !

I also have the joy of a rare side effect from my allergy med (Zyrtec), I'm

hungry ALL the time. This is certainly a different feeling, because I spent most

of my life with very little appetite. So it's 11:30 at night, and I'm highly

looking forward to breakfast already ;-). I'll probably dream of ice cream

sundaes all night long (and really, who can complain about ice cream sundae

dreams?)

Holly

Crohn's

SCD 12/01/08

>

> > THIS IS WHY IT'S SO HARD! He's getting to the point where he'd

> > rather just not eat. How do other teenagers do this?

>

> Well, I've never really been allowed to be a picky eater so it may be

> harder for your son if he is, but I sort of just deal with it. I mean,

> sometimes I'll get really frustrated and upset, but then I step back

> and look at what I'm getting upset about: food. And just the TASTE of

> food, really. COnvenience I guess too. But still, I figure life

> shouldn't be all about food, to where life isn't good anymore because

> of your diet. Other things should matter more. So I just suck it up

> and hope I'll be able to eat more things soon.

>

>

>

> Pour Dieu, pour terre,

> Alyssa 15

> UC April 2008, diagnosed Sept 2008

> SCD June 2009 (restarted)

> No meds =)

>

[Guest guest]

i ate them every day- twice a day for a year - loved them but no bananas anymore

:-( so now it's dccc/pecanflour pancakes - must have my pancakes :-)

eileen

>

> > Yeah, I made them twice and I could barely gag them down

>

>

> Yikes! What was your method for making them? I had them this morning

> and I wanted more! I just put a ripe banana and two eggs in my

> blender, blended it till it was completely smooth, then poured it in a

> pan and fried it in coconut oil. When they were done, I put a dollop

> each of coconut oil and butter, and drizzled honey over then whole

> thing.

>

> My family came in the kitchen exclaiming, " wow, that smells great! "

>

> Pour Dieu, pour terre,

> Alyssa 15

> UC April 2008, diagnosed Sept 2008

> SCD June 2009 (restarted)

> No meds =)

>

[Guest guest]

i ate them every day- twice a day for a year - loved them but no bananas anymore

:-( so now it's dccc/pecanflour pancakes - must have my pancakes :-)

eileen

>

> > Yeah, I made them twice and I could barely gag them down

>

>

> Yikes! What was your method for making them? I had them this morning

> and I wanted more! I just put a ripe banana and two eggs in my

> blender, blended it till it was completely smooth, then poured it in a

> pan and fried it in coconut oil. When they were done, I put a dollop

> each of coconut oil and butter, and drizzled honey over then whole

> thing.

>

> My family came in the kitchen exclaiming, " wow, that smells great! "

>

> Pour Dieu, pour terre,

> Alyssa 15

> UC April 2008, diagnosed Sept 2008

> SCD June 2009 (restarted)

> No meds =)

>

[Guest guest]

s tomato juice is approved legal so you can use that to make ketchup. It

just takes a long time to cook down.

Misty Kimble

CD - no meds

SCD - 19 months

> I've actually already done this and used to do it regularly. I just need to

find some affordable tomatoes so I can make some more spaghetti sauce and

ketchup.

[Guest guest]

s tomato juice is approved legal so you can use that to make ketchup. It

just takes a long time to cook down.

Misty Kimble

CD - no meds

SCD - 19 months

> I've actually already done this and used to do it regularly. I just need to

find some affordable tomatoes so I can make some more spaghetti sauce and

ketchup.

[Guest guest]

s tomato juice is approved legal so you can use that to make ketchup. It

just takes a long time to cook down.

Misty Kimble

CD - no meds

SCD - 19 months

> I've actually already done this and used to do it regularly. I just need to

find some affordable tomatoes so I can make some more spaghetti sauce and

ketchup.

[Guest guest]

Thanks Carol. He is a bit angry and I have to admit, I am too. The realy

frustrating thing is that we have never eaten the Standard American Diet. No

fast food (3 of us are gluten free), I make homemade everything and have always

been very careful about how much sugar all my kids were eating. My kids

consider me a health food fanatic. A " normal " dinner for us in the summer is

grilled chicken or salmon with 5-6 large red, yellow and orange peppers or

zucchini (grilled also), a pot of rice and a bowl of salad. Dessert might be

homemade cookies or a berry cobbler, only sweetened as much as needed. Eating

out normally means going to the health food store for salad bar in their deli or

someplace like Chipotle, where we would all get chicken or steak salads or

burrito bols, water to drink - no pop. This son, however, has a sweet tooth and

can put away tons of ice cream (that my husband insisted on buying) and manages

to get candy at school and over does it. That has stopped. He's scared and

realizes that he can't do that anymore. He has spent some time online looking

up UC and is scared to death of the thought of surgery and all that involves.

He remembers when I had to go on prednisone and how awful it was, so he doesn't

want that either. He loves football and doesn't want anything to interfere with

him being able to play.

Thanks for letting me vent! I had honestly thought I was protecting my family

from the typical American diseases by being so careful with what I fed them.

Obviously, it wasn't enough!

Liz

Carol

>

[Guest guest]

Wow, thanks for this. This is very interesting. My grandmother had crippling

rheumatoid arthritis and I have dealt with several auto-immune problems

(including " colitis " , arthritis, kidney disease, thyroid disease and psoriasis).

My dietary changes have kept me in excellent health and I only have minor

problems with thyroid (small dose of med needed everyday) and psoriasis (not

bad, but not gone). Guess my son just needs a little more help than that.

Hopefully, someday he'll be able to return to a somewhat " normal " diet, which

will still be gluten free and low carb/sugar.

Thanks,

Liz

>Well don't beat yourself up about it - very possibly he had a genetic

propensity for it - in which case, he's lacking a peacekeeper protein in his

intestinal wall that is supposed to keep the pathogenic bacteria from

penetrating the cell walls; and this breaching of the integrity of the

intestinal wall is what causes

the body to respond with the auto-immune response and the inflammation.

So part of the bodies natural regulatory system is non functional.

You could not have known this as the research for this is brand new as of a few

years back:

http://www.medicalnewstoday.com/articles/84651.php

The key abnormality is a deficiency of the T-bet protein in

" dendritic " cells -- white blood cells that capture identifying

antigens of foreign microbes and activate the immune defenses. T-bet, discovered

in 2000 in Glimcher's laboratory, is a " master regulator

gene, " a transcription factor that orchestrates a pro-inflammatory

response of the immune system. T-bet had been found to play a role in the body's

handling of infectious microbes and cancer cells and has

been implicated in rheumatoid arthritis and asthma, but the discovery of its

pivotal part in the innate immune system in inflammatory bowel disease came as a

total surprise.

" We have identified a new molecular player, T-bet, and when it's

> missing, there is spontaneous onset of the disease in the mice, " said

> Glimcher. " The importance of this study is that we now have a novel

> model for ulcerative colitis: The disease appears in 100 percent of

> the animals and looks just like the human disease. "

>

> If some people develop ulcerative colitis because of T-bet DNA

> variation or polymorphisms, it may be because of an inherited

> variation in the DNA affecting the T-bet gene. The researchers are

> following up this lead.

>

>

> Here's the video:

>

> http://www.hsph.harvard.edu/multimedia/video/2007/LaurieGlimcher/

>

> Mara

>

[Guest guest]

Wow, thanks for this. This is very interesting. My grandmother had crippling

rheumatoid arthritis and I have dealt with several auto-immune problems

(including " colitis " , arthritis, kidney disease, thyroid disease and psoriasis).

My dietary changes have kept me in excellent health and I only have minor

problems with thyroid (small dose of med needed everyday) and psoriasis (not

bad, but not gone). Guess my son just needs a little more help than that.

Hopefully, someday he'll be able to return to a somewhat " normal " diet, which

will still be gluten free and low carb/sugar.

Thanks,

Liz

>Well don't beat yourself up about it - very possibly he had a genetic

propensity for it - in which case, he's lacking a peacekeeper protein in his

intestinal wall that is supposed to keep the pathogenic bacteria from

penetrating the cell walls; and this breaching of the integrity of the

intestinal wall is what causes

the body to respond with the auto-immune response and the inflammation.

So part of the bodies natural regulatory system is non functional.

You could not have known this as the research for this is brand new as of a few

years back:

http://www.medicalnewstoday.com/articles/84651.php

The key abnormality is a deficiency of the T-bet protein in

" dendritic " cells -- white blood cells that capture identifying

antigens of foreign microbes and activate the immune defenses. T-bet, discovered

in 2000 in Glimcher's laboratory, is a " master regulator

gene, " a transcription factor that orchestrates a pro-inflammatory

response of the immune system. T-bet had been found to play a role in the body's

handling of infectious microbes and cancer cells and has

been implicated in rheumatoid arthritis and asthma, but the discovery of its

pivotal part in the innate immune system in inflammatory bowel disease came as a

total surprise.

" We have identified a new molecular player, T-bet, and when it's

> missing, there is spontaneous onset of the disease in the mice, " said

> Glimcher. " The importance of this study is that we now have a novel

> model for ulcerative colitis: The disease appears in 100 percent of

> the animals and looks just like the human disease. "

>

> If some people develop ulcerative colitis because of T-bet DNA

> variation or polymorphisms, it may be because of an inherited

> variation in the DNA affecting the T-bet gene. The researchers are

> following up this lead.

>

>

> Here's the video:

>

> http://www.hsph.harvard.edu/multimedia/video/2007/LaurieGlimcher/

>

> Mara

>

[Guest guest]

Wow, thanks for this. This is very interesting. My grandmother had crippling

rheumatoid arthritis and I have dealt with several auto-immune problems

(including " colitis " , arthritis, kidney disease, thyroid disease and psoriasis).

My dietary changes have kept me in excellent health and I only have minor

problems with thyroid (small dose of med needed everyday) and psoriasis (not

bad, but not gone). Guess my son just needs a little more help than that.

Hopefully, someday he'll be able to return to a somewhat " normal " diet, which

will still be gluten free and low carb/sugar.

Thanks,

Liz

>Well don't beat yourself up about it - very possibly he had a genetic

propensity for it - in which case, he's lacking a peacekeeper protein in his

intestinal wall that is supposed to keep the pathogenic bacteria from

penetrating the cell walls; and this breaching of the integrity of the

intestinal wall is what causes

the body to respond with the auto-immune response and the inflammation.

So part of the bodies natural regulatory system is non functional.

You could not have known this as the research for this is brand new as of a few

years back:

http://www.medicalnewstoday.com/articles/84651.php

The key abnormality is a deficiency of the T-bet protein in

" dendritic " cells -- white blood cells that capture identifying

antigens of foreign microbes and activate the immune defenses. T-bet, discovered

in 2000 in Glimcher's laboratory, is a " master regulator

gene, " a transcription factor that orchestrates a pro-inflammatory

response of the immune system. T-bet had been found to play a role in the body's

handling of infectious microbes and cancer cells and has

been implicated in rheumatoid arthritis and asthma, but the discovery of its

pivotal part in the innate immune system in inflammatory bowel disease came as a

total surprise.

" We have identified a new molecular player, T-bet, and when it's

> missing, there is spontaneous onset of the disease in the mice, " said

> Glimcher. " The importance of this study is that we now have a novel

> model for ulcerative colitis: The disease appears in 100 percent of

> the animals and looks just like the human disease. "

>

> If some people develop ulcerative colitis because of T-bet DNA

> variation or polymorphisms, it may be because of an inherited

> variation in the DNA affecting the T-bet gene. The researchers are

> following up this lead.

>

>

> Here's the video:

>

> http://www.hsph.harvard.edu/multimedia/video/2007/LaurieGlimcher/

>

> Mara

>