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a still mysterious disease and a personal theory

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Hi,

I don't visit this site much, but I was diagnosed with PSC in 2000. Up

till about 5 or 6 months ago I had on and off symptoms (itching,

fatigue) but for the last several months I've been very healthy and no

symptoms. This came after I decided to see if an all organic diet would

help. So far, it seems to me like it definitely has. For the last

couple of months, I've felt great, and its been easy to forget that I

have a chronic disease.

This leads me to wonder this: maybe this disease is related more to

what we eat than we think. The fact of the matter is this: very little

is known about the causes of this disease. On an article I looked up,

it said this: " Researchers do not know what causes PSC. Among the

theories under investigation are the possible role of bacteria,

viruses, and immune system problems. " This is definetly not conclusive,

and leaves me to harbor this attitude: there is nobody who knows what

this disease is all about.

For myself, I have my own theory of what might have caused my

particular case (I say " my particular case " because maybe there are

differnet causes for different people- who knows?) of PSC. A genetic

predisposition facilitated by the large amount of genetically altered

(unnatural) substances that I consumed throughout my life. In this

scenario, maybe I'll have a chance to turn back this disease. This is

just a theory, and it may be wishful thinking, but so far, I can't find

any findings to disprove it.

This is more of a rant than anything.

PSC, 2000

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That is very interesting. I hope that you continue to do well. My

uncle is an internal medicine specialist and he's always saying that

vitamins help and that pretty much everyone needs to cut gluten from

their diet and all the processed foods. So I think that you may be on

to something. I need to learn how to eat better.

Good luck and thanks for sharing!

PSC 8/07

PBC 10/06

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I don't doubt your theory at all, . We were totally organic

eaters until a few months ago when we kind of fell off the band wagon

and got back into some old habits. We used to eat a lot of foods that

were fermented/canned in the old ways (live foods, kind of probiotics)

and did not allow any processed sugar in our home. But it got really

expensive and we went through a hard time so we stopped. A few months

later is when my daughter got sick. I also think it is a mix of

genetic predisposition - but that is just a slightly informed opinion

based on what I have read from other people and our experience.

Mom of Pearl Ann, age 3, PSC/Crohns 8/07

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Perhaps you would consider sharing with the group the mainstays of your current diet in case others would like to try it as well. Glad you have found something that works well to keep you feeling well. Hettinger

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,

I totaly agree with you. What we eat is a BIG factor. I take Aloe Vera juice 2x a day. Not the cheap stuff you find at Walmart but good stuff and I have noticed a HUGE different. Buying organic stuff is expensive but again I think the cost of medicine when you get sick and the hospital stay, not to mention the non money factor of feeling bad I think it averages out.

My rational is this.... Everything you eat goes to the liver so if you eat stuff that has lots of hormons and other junk, your liver has to work harder to process it. If you eat things that don't have much other than the actual food, then your body processes the food and doesn't have to worry about processing the chemicals.

Just my 2 cents...

Armanarman_shirin@...

a still mysterious disease and a personal theory

Hi,I don't visit this site much, but I was diagnosed with PSC in 2000. Up till about 5 or 6 months ago I had on and off symptoms (itching, fatigue) but for the last several months I've been very healthy and no symptoms. This came after I decided to see if an all organic diet would help. So far, it seems to me like it definitely has. For the last couple of months, I've felt great, and its been easy to forget that I have a chronic disease. This leads me to wonder this: maybe this disease is related more to what we eat than we think. The fact of the matter is this: very little is known about the causes of this disease. On an article I looked up, it said this: "Researchers do not know what causes PSC. Among the theories under investigation are the possible role of bacteria, viruses, and immune system problems." This is definetly not conclusive, and leaves me to harbor this attitude: there is nobody

who knows what this disease is all about. For myself, I have my own theory of what might have caused my particular case (I say "my particular case" because maybe there are differnet causes for different people- who knows?) of PSC. A genetic predisposition facilitated by the large amount of genetically altered (unnatural) substances that I consumed throughout my life. In this scenario, maybe I'll have a chance to turn back this disease. This is just a theory, and it may be wishful thinking, but so far, I can't find any findings to disprove it.This is more of a rant than anything. PSC, 2000

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Hey

I think there's a lot to be said for diet and its impact on a whole

host of diseases (not just PSC). While I've not made the total switch

to an all organic diet, I've been more careful with what I eat and

gone " back to basics " over the past year. So that means I use real

garlic instead of garlic powder when cooking. Yes, it's not as

convenient, but then if it means feeling better, I'm all for it.

Following a gluten-free diet has also made a difference even though I

tested negative for gluten sensitivity via blood tests but positive

via food intolerance testing [go figure]. On a side note, I didn't

realize how much I ate bread until I attempted cutting out gluten.

Some of the alternative " bread " products would be put to better use

soaking up oil spills or as a door stop than for human consumption. :)

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Hi ,

I totally agree with you about the role of diet with PSC.

I was diagnosed with a lot of food allergies (soy, nuts, gluten, in

2003-4) and found those things very common in my diet at the time. I

have since cut out those things and basically shop at the health food

store (still reading ingredients and watching my diet). I have had a

huge turn around since changing my diet. Before I was sick all the

time and was still having a lot of problems with my j-pouch (post UC

tx, 2002) and since then have not been completely symptom free, but

definitely a lot better.

Well good luck to you and thanks for sharing!

Jarad, 27

PSC dx 1996

UC dx 1999

Jpouch 2002-3

Food Allergies 2003-4

Osteoporosis 2006

Back surgery 2007

>

> Hi,

> I don't visit this site much, but I was diagnosed with PSC in 2000.

Up

> till about 5 or 6 months ago I had on and off symptoms (itching,

> fatigue) but for the last several months I've been very healthy and

no

> symptoms. This came after I decided to see if an all organic diet

would

> help. So far, it seems to me like it definitely has. For the last

> couple of months, I've felt great, and its been easy to forget that

I

> have a chronic disease.

> This leads me to wonder this: maybe this disease is related more to

> what we eat than we think. The fact of the matter is this: very

little

> is known about the causes of this disease. On an article I looked

up,

> it said this: " Researchers do not know what causes PSC. Among the

> theories under investigation are the possible role of bacteria,

> viruses, and immune system problems. " This is definetly not

conclusive,

> and leaves me to harbor this attitude: there is nobody who knows

what

> this disease is all about.

> For myself, I have my own theory of what might have caused my

> particular case (I say " my particular case " because maybe there are

> differnet causes for different people- who knows?) of PSC. A

genetic

> predisposition facilitated by the large amount of genetically

altered

> (unnatural) substances that I consumed throughout my life. In this

> scenario, maybe I'll have a chance to turn back this disease. This

is

> just a theory, and it may be wishful thinking, but so far, I can't

find

> any findings to disprove it.

>

> This is more of a rant than anything.

>

>

> PSC, 2000

>

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I need to do good allergy tests. Does a regular allergy doctor do the testing or is it a special doctor? Sorry for the ignorance. What kind of test is it? blood? skin?

Thanks.

Armanarman_shirin@...

Re: a still mysterious disease and a personal theory

Hi ,I totally agree with you about the role of diet with PSC.I was diagnosed with a lot of food allergies (soy, nuts, gluten, in 2003-4) and found those things very common in my diet at the time. I have since cut out those things and basically shop at the health food store (still reading ingredients and watching my diet). I have had a huge turn around since changing my diet. Before I was sick all the time and was still having a lot of problems with my j-pouch (post UC tx, 2002) and since then have not been completely symptom free, but definitely a lot better. Well good luck to you and thanks for sharing!Jarad, 27PSC dx 1996UC dx 1999Jpouch 2002-3Food Allergies 2003-4Osteoporosis 2006Back surgery 2007>> Hi,> I don't visit this site much, but I was diagnosed with PSC in 2000. Up > till about 5 or 6 months ago I had on and off symptoms (itching, > fatigue) but for the last several months I've been very healthy and no > symptoms. This came after I decided to see if an all organic diet would > help. So far, it seems to me like it definitely has. For the last > couple of months, I've felt great, and its been easy to forget that I > have a chronic disease. > This leads me to wonder this: maybe this disease is related more to > what we eat than we think. The fact of the matter is this: very little > is known about the causes of this disease. On an article I looked up, > it said this: "Researchers do not know what causes PSC. Among the > theories under investigation are the possible role of bacteria, > viruses, and immune

system problems." This is definetly not conclusive, > and leaves me to harbor this attitude: there is nobody who knows what > this disease is all about. > For myself, I have my own theory of what might have caused my > particular case (I say "my particular case" because maybe there are > differnet causes for different people- who knows?) of PSC. A genetic > predisposition facilitated by the large amount of genetically altered > (unnatural) substances that I consumed throughout my life. In this > scenario, maybe I'll have a chance to turn back this disease. This is > just a theory, and it may be wishful thinking, but so far, I can't find > any findings to disprove it.> > This is more of a rant than anything. > > > PSC, 2000>

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The staples of my natural (to clarify, I eat all natural, not always

organic) diet are rice, beans, vegetables and whole wheat and whole

grain breads. I believe, though, that what is most important for me,

given that I'm getting all the essentials, is what I don't eat

(avoiding processed foods). I also eat a vegetarian diet, for one,

because natural meat is expensive, and two, I'm afraid of the

effects on my mind that the byproducts of animal protein will have

(ex. hepatic encephalopathy). This is a very rigid, inconvenient

diet, but I've been motivated to keep it up because I've been

feeling great.

>

> Perhaps you would consider sharing with the group the mainstays of

your current diet in case others would like to try it as well.

>

> Glad you have found something that works well to keep you

feeling well.

>

> Hettinger

>

>

> ---------------------------------

> Got a little couch potato?

> Check out fun summer activities for kids.

>

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