Dave -- Anyone -- I need a leg to stand on...

[Guest guest]

Dave & All,

Dave - I know you seem to be the font of medical information here so

that's why I singled you out.

Is there any research leaning toward healthy diet recommendations

for people with PSC? I have some general dietary guidelines for

people with liver disease, but that's not going to hold water with

my husband.

We had quite the argument tonight about, of all things, switching to

organic milk (there's a dairy that will deliver in glass bottles --

just like in the old days!). This milk is twice as expensive as the

regular grocery store brand. But it has no antibiotics, hormones,

additives. The dairy is self-sufficient -- they grow their own feed,

milk their own cows, pasturize, bottle, & deliver their milk.

Everything I've read or seen seems to lead to a more organic diet

being easier for the liver to break the food down. Animal protein is

harder for the liver to break down, vegetable protein is better, etc.

My son (almost 5 now) has no bile duct obstructions, normal labs, no

infections, jaundice... nothing. Yet. He had 1 bout of ulcerative

colitis not quite a year ago. He shows no dairy intolerance. His

favorite thing in the world besides chocolate is MILK.

My position is that switching to a healthier diet will only help his

liver stay healthy longer and certainly can't hurt our waistlines.

But the problem is that the Hepatologist told us we didn't have to

change anything right now. He's a kid, let him eat chicken nuggets

and pizza, no dietary restrictions. So, that's what my husband is

sticking with. Josh is fine. No need to change anything. I am the

crazy one, joining a support group, getting these " organic " ideas in

my head. Why can't I just leave well enough alone... we'll cross

that bridge when we come to it... yadda, yadda, yadda.

Not that he'll read anything I give him, but is there something that

will bolster my theory? Or conversly, disprove it? If changing

Josh's diet and paying double for milk in glass jars isn't going to

make any difference, I'll certainly back down. I can't seem to get

my husband to read anything about PSC. He lives in blissful

ignorance while I suffer enough for the 3 of us. I'm so frustrated I

don't know what to do! I know it takes time to absorb and digest

such a serious diagnosis. I've just gotten my own head around it

and maybe that's why I'm upset. I'm ready to act - to do something

and he isn't. But we're going on 1 year after diagnosis now and

time's a-wastin'!

I would really appreciate any information.

Thanks!

Dana

(Mom of Josh; UC 3/04, PSC 4/04)

[Guest guest]

Dear Dana;

I wish I could point you to some good research in this area, but I

don't think I have researched this topic thoroughly enough to give

you good answers. Generally speaking, a good, well-balanced diet with

all the key nutrients and vitamins MUST help in the long run. But

when it comes to considering organically grown versus conventionally

grown produce and its impact on the progress on liver disease, I

don't know of any specific research in this area.

One issue has concerned me around the topic of milk and cheese, and

this is the hypothesis that certain microorganisms in milk might be

responsible for triggering certain types of inflammatory bowel

disease (especially Crohn's disease) in genetically susceptible

individuals. I can point you to a lot of research in this area if

you're interested:

http://www.psc-literature.org/Mycobac.htm

One of the recent articles that I read, gave me some concern about

cheese:

_____________________________________

J Food Prot. 2004 Dec;67(12):2719-26.

Efficacy of pasteurization conditions for the inactivation of

Mycobacterium avium subsp. paratuberculosis in milk.

Stabel JR, Lambertz A.

US Department of Agriculture, Animal Research Service, National

Animal Disease Center, Bacterial Diseases of Livestock Research Unit,

Ames, Iowa 50010, USA. jstabel@...

Mycobacterium avium subsp. paratuberculosis, the causative agent of a

chronic enteritis in ruminants (e's disease), has been linked to

Crohn's disease in humans. This microorganism is shed by infected

animals primarily in the feces but is also shed in the milk at much

lower levels. Therefore, dairy products from infected animals may be

one mode of transmission of this animal pathogen. This study was

designed to evaluate the effectiveness of the holder and high-

temperature short-time pasteurization standards on the destruction of

M. paratuberculosis. One hundred eighty experiments were conducted in

this study using a slug-flow pasteurizer unit and a laboratory scale

pasteurizer unit. Ultrahigh-temperature milk was inoculated at two

concentrations, 10(8) and 10(5) CFU/ml, with three different field

strains of M. paratuberculosis. Five different time-temperature

combinations were evaluated: 62.7 degrees C for 30 min, 65.5 degrees

C for 16 s, 71.7 degrees C for 15 s, 71.7 degrees C for 20 s, and

74.4 degrees C for 15 s. Three replicates of each experiment were run

for the pasteurizer unit, time-temperature combination, and strain of

M. paratuberculosis. Treatment of milk regardless of bacterial strain

or pasteurizer unit resulted in an average 5.0- and 7.7-log kill for

the low and high concentrations of inoculum, respectively. Milk

treated for cheese production (65.5 degrees C for 16 s) resulted in a

much lower and more variable kill. Results from this study indicate

that the current U.S. minimum standards for batch and high-

temperature short-time pasteurization of grade A milk significantly

reduced the survivability of M. paratuberculosis, but some bacteria

survived subpasteurization heat treatment of milk used for cheese

manufacture. PMID: 15633677.

__________________________________

I honestly don't know whether " organically " raised cows shed less

Mycobacterium than " conventionally " raised cows. Perhaps they shed

more because they are not treated with antibiotics? I also don't know

whether the pasteurization processes used by organic farmers are

superior (or poorer) than conventional growers, but I'll try to do

some further reading on this.

Sorry I don't have any good answers for you right now!

Best regards,

Dave

(father of (19); PSC 07/03; UC 08/03)

>

> Dave & All,

>

> Dave - I know you seem to be the font of medical information here

so

> that's why I singled you out.

>

> Is there any research leaning toward healthy diet recommendations

> for people with PSC? I have some general dietary guidelines for

> people with liver disease, but that's not going to hold water with

> my husband.

>

> We had quite the argument tonight about, of all things, switching

to

> organic milk (there's a dairy that will deliver in glass bottles --

> just like in the old days!). This milk is twice as expensive as the

> regular grocery store brand. But it has no antibiotics, hormones,

> additives. The dairy is self-sufficient -- they grow their own

feed,

> milk their own cows, pasturize, bottle, & deliver their milk.

>

> Everything I've read or seen seems to lead to a more organic diet

> being easier for the liver to break the food down. Animal protein

is

> harder for the liver to break down, vegetable protein is better,

etc.

>

> My son (almost 5 now) has no bile duct obstructions, normal labs,

no

> infections, jaundice... nothing. Yet. He had 1 bout of ulcerative

> colitis not quite a year ago. He shows no dairy intolerance. His

> favorite thing in the world besides chocolate is MILK.

>

> My position is that switching to a healthier diet will only help

his

> liver stay healthy longer and certainly can't hurt our waistlines.

> But the problem is that the Hepatologist told us we didn't have to

> change anything right now. He's a kid, let him eat chicken nuggets

> and pizza, no dietary restrictions. So, that's what my husband is

> sticking with. Josh is fine. No need to change anything. I am the

> crazy one, joining a support group, getting these " organic " ideas

in

> my head. Why can't I just leave well enough alone... we'll cross

> that bridge when we come to it... yadda, yadda, yadda.

>

> Not that he'll read anything I give him, but is there something

that

> will bolster my theory? Or conversly, disprove it? If changing

> Josh's diet and paying double for milk in glass jars isn't going to

> make any difference, I'll certainly back down. I can't seem to get

> my husband to read anything about PSC. He lives in blissful

> ignorance while I suffer enough for the 3 of us. I'm so frustrated

I

> don't know what to do! I know it takes time to absorb and digest

> such a serious diagnosis. I've just gotten my own head around it

> and maybe that's why I'm upset. I'm ready to act - to do something

> and he isn't. But we're going on 1 year after diagnosis now and

> time's a-wastin'!

>

> I would really appreciate any information.

>

> Thanks!

> Dana

> (Mom of Josh; UC 3/04, PSC 4/04)

[Guest guest]

Dear Dana,

I was in exactly the same shoes as you after my son was diagnosed. I

immediately went to Whole Foods to start buying organic foods. Since my

son is of college age this was a wasted effort, he just got in his car

and went out after dinner to get his own junk food. He flat out told me

that since his doctor said that he didn't need to make any diet

restrictions, that he was listening to her and not me.

I do however buy a good organic milk in cartons at any of the grocery

stores here in MI.. My son particularly likes it.

I don't know if you would have it in your area but it is called Horizon

Milk [$3.90 a half gallon] It comes from Boulder Co. so maybe you can

get it where you live as well. Here is the number to check.

1-. I also use their butter and my son likes to take his

pills with their organic grape juice. I do shop a lot at Whole Foods

now so at least when my son is home he is getting more organic foods.

We do have a nutritionist coming to the conference at my insistence. It

is one of the things that I am most interested in. Remember this

conference is as much about the caregiver as it is the patient.

I don't think I will ever stop trying to improve my son's diet so he

will probably move to the other side of the country as soon as he can!

At least your son's habits and taste can still be influenced. Eating

healthier can't be wrong for anybody so keep trying to find healthy

foods that he likes. It's what you have 80 percent of the time that

matters. That other 20 percent will let him be a kid.

Good luck,

Lee

>

>

> Dave & All,

>

> Dave - I know you seem to be the font of medical information here so

> that's why I singled you out.

>

> Is there any research leaning toward healthy diet recommendations

> for people with PSC? I have some general dietary guidelines for

> people with liver disease, but that's not going to hold water with

> my husband.

>

> We had quite the argument tonight about, of all things, switching to

> organic milk (there's a dairy that will deliver in glass bottles --

> just like in the old days!). This milk is twice as expensive as the

> regular grocery store brand. But it has no antibiotics, hormones,

> additives. The dairy is self-sufficient -- they grow their own feed,

> milk their own cows, pasturize, bottle, & deliver their milk.

>

> Everything I've read or seen seems to lead to a more organic diet

> being easier for the liver to break the food down. Animal protein is

> harder for the liver to break down, vegetable protein is better, etc.

>

> My son (almost 5 now) has no bile duct obstructions, normal labs, no

> infections, jaundice... nothing. Yet. He had 1 bout of ulcerative

> colitis not quite a year ago. He shows no dairy intolerance. His

> favorite thing in the world besides chocolate is MILK.

>

> My position is that switching to a healthier diet will only help his

> liver stay healthy longer and certainly can't hurt our waistlines.

> But the problem is that the Hepatologist told us we didn't have to

> change anything right now. He's a kid, let him eat chicken nuggets

> and pizza, no dietary restrictions. So, that's what my husband is

> sticking with. Josh is fine. No need to change anything. I am the

> crazy one, joining a support group, getting these " organic " ideas in

> my head. Why can't I just leave well enough alone... we'll cross

> that bridge when we come to it... yadda, yadda, yadda.

>

> Not that he'll read anything I give him, but is there something that

> will bolster my theory? Or conversly, disprove it? If changing

> Josh's diet and paying double for milk in glass jars isn't going to

> make any difference, I'll certainly back down. I can't seem to get

> my husband to read anything about PSC. He lives in blissful

> ignorance while I suffer enough for the 3 of us. I'm so frustrated I

> don't know what to do! I know it takes time to absorb and digest

> such a serious diagnosis. I've just gotten my own head around it

> and maybe that's why I'm upset. I'm ready to act - to do something

> and he isn't. But we're going on 1 year after diagnosis now and

> time's a-wastin'!

>

> I would really appreciate any information.

>

> Thanks!

> Dana

> (Mom of Josh; UC 3/04, PSC 4/04)

>

>

>

>

>

>

>

>

>

[Guest guest]

Thank you Dave,

It seems strange to have 2 different treatment standards (for

pasturization) for milk processed for drinking and milk processed

for cheese production. (Way too many " fors " in that sentence!) I do

know the dairy I'm looking into say they follow the national and

state (MD)pasturization regulations. I'll have to ask some of my

friends who buy this milk if they've noticed an increase in any type

of bowel/digestion problem since switching to it.

I'm just trying to take everything with a grain of salt. Even what

the doctors, the supposed " experts, " say. After all, 30-40 years ago

our mothers were told that breast milk was bad for babies and that

formula was better. Now look what's happened -- a complete flip by

the medical community! Now formulas have added chemicals to make

them " more like breast milk. " Doctos look down on new moms who don't

even try to nurse. Cigarrettes and alcohol, once hawked as " tonics, "

are bad for you now.

Well, I'm still going to plant my little garden in the spring and

not use any pesticides. At least that way I'll know exactly what's

going into my son's belly.

Thank you for the Mycobacterium article. I've always wondered if

organic milk was as " safe " as regular. Now I'll have to check into

if further.

Dana

(Mom of Josh; UC 3/04, PSC 4/04)

>

> Dear Dana;

>

> I wish I could point you to some good research in this area, but I

> don't think I have researched this topic thoroughly enough to give

> you good answers. Generally speaking, a good, well-balanced diet

with

> all the key nutrients and vitamins MUST help in the long run. But

> when it comes to considering organically grown versus

conventionally

> grown produce and its impact on the progress on liver disease, I

> don't know of any specific research in this area.

>

[Guest guest]

Oh thank you Lee. Someone else in my shoes!

I know our local grocery stores carry some organic milk & dairy

products so I'll look for the brand you recommended. Though I doubt

Horizon Milk gets as far East as land. Most of the stores also

have an organic produce, frozen foods, and boxed food areas as well.

(I'm surprised at your milk prices though! I can get 1/2 gallon of

organic milk delivered to my house for $2.19! 1 Gallon of regular

milk ranges from $2.99-$3.45, but I haven't checked the organic milk

prices in the stores though. And to think my husband is whining

about $2.19!)

I've got my sister on my side, I guess it will just take time for my

hubby to come around.

Thanks for sharing your story.

Dana

(Mom of Josh (not quite 5 years old); UC 3/04, PSC 04/04)

> Dear Dana,

> I was in exactly the same shoes as you after my son was diagnosed.

I

> immediately went to Whole Foods to start buying organic foods.

Since my

> son is of college age this was a wasted effort, he just got in his

car

> and went out after dinner to get his own junk food. He flat out

told me

> that since his doctor said that he didn't need to make any diet

> restrictions, that he was listening to her and not me.

> I do however buy a good organic milk in cartons at any of the

grocery

> stores here in MI.. My son particularly likes it.

> I don't know if you would have it in your area but it is called

Horizon

> Milk [$3.90 a half gallon] It comes from Boulder Co. so maybe you

can

> get it where you live as well. Here is the number to check.

> 1-. I also use their butter and my son likes to take

his

> pills with their organic grape juice. I do shop a lot at Whole

Foods

> now so at least when my son is home he is getting more organic

foods.

> We do have a nutritionist coming to the conference at my

insistence. It

> is one of the things that I am most interested in. Remember this

> conference is as much about the caregiver as it is the patient.

> I don't think I will ever stop trying to improve my son's diet so

he

> will probably move to the other side of the country as soon as he

can!

> At least your son's habits and taste can still be influenced.

Eating

> healthier can't be wrong for anybody so keep trying to find

healthy

> foods that he likes. It's what you have 80 percent of the time

that

> matters. That other 20 percent will let him be a kid.

> Good luck,

> Lee

[Guest guest]

Dana, show him my email and he won't do any more complaining about the

milk which by the way can be bought in NY so you just might find it.

Lee

>

>

> Oh thank you Lee. Someone else in my shoes!

>

> I know our local grocery stores carry some organic milk & dairy

> products so I'll look for the brand you recommended. Though I doubt

> Horizon Milk gets as far East as land. Most of the stores also

> have an organic produce, frozen foods, and boxed food areas as well.

> (I'm surprised at your milk prices though! I can get 1/2 gallon of

> organic milk delivered to my house for $2.19! 1 Gallon of regular

> milk ranges from $2.99-$3.45, but I haven't checked the organic milk

> prices in the stores though. And to think my husband is whining

> about $2.19!)

>

> I've got my sister on my side, I guess it will just take time for my

> hubby to come around.

>

> Thanks for sharing your story.

>

> Dana

> (Mom of Josh (not quite 5 years old); UC 3/04, PSC 04/04)

>

>

>> Dear Dana,

>> I was in exactly the same shoes as you after my son was diagnosed.

> I

>> immediately went to Whole Foods to start buying organic foods.

> Since my

>> son is of college age this was a wasted effort, he just got in his

> car

>> and went out after dinner to get his own junk food. He flat out

> told me

>> that since his doctor said that he didn't need to make any diet

>> restrictions, that he was listening to her and not me.

>> I do however buy a good organic milk in cartons at any of the

> grocery

>> stores here in MI.. My son particularly likes it.

>> I don't know if you would have it in your area but it is called

> Horizon

>> Milk [$3.90 a half gallon] It comes from Boulder Co. so maybe you

> can

>> get it where you live as well. Here is the number to check.

>> 1-. I also use their butter and my son likes to take

> his

>> pills with their organic grape juice. I do shop a lot at Whole

> Foods

>> now so at least when my son is home he is getting more organic

> foods.

>> We do have a nutritionist coming to the conference at my

> insistence. It

>> is one of the things that I am most interested in. Remember this

>> conference is as much about the caregiver as it is the patient.

>> I don't think I will ever stop trying to improve my son's diet so

> he

>> will probably move to the other side of the country as soon as he

> can!

>> At least your son's habits and taste can still be influenced.

> Eating

>> healthier can't be wrong for anybody so keep trying to find

> healthy

>> foods that he likes. It's what you have 80 percent of the time

> that

>> matters. That other 20 percent will let him be a kid.

>> Good luck,

>> Lee

>

>

>

>

>

>

>

>

>

[Guest guest]

Dana,

Quickly, I just had a thought - IF your child ever gets really sick

with this disease (no guarantee that he will if research continues to

get better), then he's going to have dietary restrictions. If you can

make his diet healthy now, the less traumatic it would be if you had

to limit his fat, sodium, or even protein. I have cirrhosis, so I'm

LOTS farther along, but I've had to eliminate most fats, all but

2,000 mg of sodium per day, and I try to limit animal proteins to one

serving per day. The salt is the only thing that the docs insist on

other than no drinking of alcohol. The others I do because at least

with the fats, I can FEEL the difference. I haven't elminated

processed foods because my family wouldn't eat without them since I'm

sick so much, but I have stopped consuming nutrasweet, MSG, and

saccarine (sp) because I can FEEL a difference with those, too.

I'd look at it like this - if you think you may have to run a

marathon, best to be in training BEFORE race day...We just switched

to organic milk - I don't know the name, but it is in the dairy case

in Safeway, Giant and Target here in Northern VA. It is in a red half-

gallon container with a cow on it. It costs about $3.00 to 3.50 per

half gallon depending on where you get it. It has a long expiration

date, so when it goes on sale, I stock up. I try to buy organic

vegetables when I can.

Hope this helps,

Deb in VA

PSC 1998, UC 1999, Listed Ltx 2001, MELD 18

>

[Guest guest]

Thanks Deb,

What you're saying is common sense. My son is not quite 5 yet, he

needs his fat, he needs lots of protein, yet he's a finicky eater

just like most preschoolers. I know with UC in little kids there's a

worry about slowed growth, delayed puberty, etc. so that, plus his

asymptomatic PSC, is probably why the doctors didn't place any

dietary restrictions on him. But if I can start a trend toward

healthy eating now when he's so young, it will only make things

easier on him when (and hopefully IF) his health takes a downturn.

I'm not going to totally eliminate his precious Mc's Happy

Meals (eww yuck!) but Chick-fil-A has their own version of a Happy

Meal that's a tad bit better and he likes them just as well. (This

is probably making quite a few stomachs churn at the thought of all

the fat and grease!) He will eat my homemade nuggets with some

bribing, but not all the time. On the flip side, he prefers steamed

broccoli with a little butter and garlic powder to hot dogs. So I

pick my battles.

The fact that he's fine right now does make it easier. I guess I

want to be prepared for the worst but hope for the best. Your

marathon analogoy is right on target.

I bet I can get the same organic milk in my Giant or Safeway up here

in Frederick. It's worth a shot and my husband might not even notice

the label :-)

From the responses I'm getting, it looks like I'm on the right

track. No need to make sweeping changes, just small adjustments here

and there. Now I'll just have to weather the storm with my hubby

over this.

Dana

(Mom of Josh 3/04, PSC 4/04)

>

> Dana,

> Quickly, I just had a thought - IF your child ever gets really

sick

> with this disease (no guarantee that he will if research continues

to

> get better), then he's going to have dietary restrictions. If you

can

> make his diet healthy now, the less traumatic it would be if you

had

> to limit his fat, sodium, or even protein.

>

> I'd look at it like this - if you think you may have to run a

> marathon, best to be in training BEFORE race day...

[Guest guest]

Regarding organic milk and the cost and availability, one alternative

is to use soy milk. I buy soy milk (regular, vanilla, or organic,

depending on what variety is on special at the time) in quart cartons

at one of my local grocery stores. It does not require refrigeration

until opened. Regular price is about $2.00 per quart, but I stock up

when it is on special for $1.00 or less. I use it on my breakfast

cereal. My husband drinks it instead of milk and prefers the flavor.

Margie in MO

PSC DX 3/99