PSC, UC, Addison's and Osteopoenia

[Guest guest]

In the course of the last 10 years I have been diagnosed with a whole

bunch of fun stuff.

Primary Sclerosing Cholangitis

Ulcerative Colitis

's disease

Osteopoenia

Does anyone else have this rather unique combo or have any idea how I

can try to avoid building on this collection?

I have heard that I may be Gluten Intolerant, but that was not a

medical opinion.

Anyway, nice to meet everybody!

[Guest guest]

I wish I knew how to avoid building on this unique combo of illnesses. I have a J-pouch, UC, pouchitis, PSC & Autoimmune Hepatitis. I almost had colon cancer, so I dodged that bullet anyway. I've had melanoma and a toxic megacolon.

Marie

To: From: mitchdavis80@...Date: Wed, 31 Oct 2007 18:05:21 +0000Subject: PSC, UC, 's and Osteopoenia

In the course of the last 10 years I have been diagnosed with a wholebunch of fun stuff.Primary Sclerosing Cholangitis Ulcerative Colitis's diseaseOsteopoeniaDoes anyone else have this rather unique combo or have any idea how Ican try to avoid building on this collection?I have heard that I may be Gluten Intolerant, but that was not amedical opinion.Anyway, nice to meet everybody! Climb to the top of the charts!  Play Star Shuffle:  the word scramble challenge with star power. Play Now!

[Guest guest]

Hi Mitch,

I basically have everything you do except the 's.

I had my large intestine removed for UC.

Also, I've been diagnosed with a lot of food allergies - soy, nuts,

gluten, etc. I also had 2 herniated discs in my low back which I had

surgery for. Well good luck to you, this is a great group.

Take care!

Jarad

>

> In the course of the last 10 years I have been diagnosed with a

whole

> bunch of fun stuff.

>

> Primary Sclerosing Cholangitis

> Ulcerative Colitis

> 's disease

> Osteopoenia

>

> Does anyone else have this rather unique combo or have any idea how

I

> can try to avoid building on this collection?

> I have heard that I may be Gluten Intolerant, but that was not a

> medical opinion.

>

> Anyway, nice to meet everybody!

>

[Guest guest]

Mitch,

I have a few of the same as you, mine are:

Primary Sclerosing Cholangitis

Crohns (2/3 of colon removed)

Gerd

Osteopoenia

3 Pulmonary embolisms (now they think I have an autoimmune clotting

disease too, joy, joy)

My father learned last year that he has celiac (gluten intolerance),

it is a very hard diet to follow, he is following it very strictly

(I'm so proud of him) and still the doctors say that the tests show

he is ingesting it somehow.

>

> In the course of the last 10 years I have been diagnosed with a

whole

> bunch of fun stuff.

>

> Primary Sclerosing Cholangitis

> Ulcerative Colitis

> 's disease

> Osteopoenia

>

> Does anyone else have this rather unique combo > I have heard that

I may be Gluten Intolerant, but that was not a

> medical opinion.

>

[Guest guest]

I feel like I'm eating radioactive waste or something. I should really

go to an allergist. What are everyones eating habits like? I've always

eaten rather healthy foods. Fruits, Veggies, meats without seasoning.

It boggles the mind.

My dad has diabetes and had sarcoidosis and everybody says it's just

genetic

> >

> > In the course of the last 10 years I have been diagnosed with a

> whole

> > bunch of fun stuff.

> >

> > Primary Sclerosing Cholangitis

> > Ulcerative Colitis

> > 's disease

> > Osteopoenia

> >

> > Does anyone else have this rather unique combo > I have heard that

> I may be Gluten Intolerant, but that was not a

> > medical opinion.

>

> >

>

[Guest guest]

Not sure that " fun " is the first thing that comes to mind .....

But my own amusing selection includes (in order of diagnosis from most

recent to first):

Osteoporosis

Primary Sclerosing Cholangitis

Ulcerative colitis

Lichen planus -- seems to be mostly gone

Deep venous thrombosis (x2)-- I guess my left leg was " jealous " for

not having had one so I got the second one about 6 months after

stopping coumadin.

While I didn't test positive for celiac-markers, I showed an

intolerance to gluten, soy and a whole host of other foods. Leaving

them out of the diet means little to no itching. Of course,

periodically I slip up (like last weekend) so now I'm still feeling

the after effects.

On the plus side however, since taking URSO for the past 9 months, I

now have LFTs that are mostly within normal limits instead of

somewhere in the stratosphere. My UC continues to be in remission but

I have a lovely constellation of ulcers that I saw following the most

recent colonoscopy. We can play connect-the-dots with them .....

[Guest guest]

It's always good to have a sense of humor.

I've noticed that i get sick after I eat wheat. Particularly whole

wheat, as my mom has been pushing it for the past few years. If I eat

mostly east asian food and vegies, i don't get messed up as badly.

I just got this new Kashi cereal which is pure wheat, oats and barley.

No sooner did i eat a bowl that I felt sick as a dog and my stomach

felt bloated. I feel weaker in the bones (somehoe) and my stomach

feels like somebody is stabbing it. Hard to explain

>

> Not sure that " fun " is the first thing that comes to mind .....

>

> But my own amusing selection includes (in order of diagnosis from most

> recent to first):

>

> Osteoporosis

> Primary Sclerosing Cholangitis

> Ulcerative colitis

> Lichen planus -- seems to be mostly gone

> Deep venous thrombosis (x2)-- I guess my left leg was " jealous " for

> not having had one so I got the second one about 6 months after

> stopping coumadin.

>

> While I didn't test positive for celiac-markers, I showed an

> intolerance to gluten, soy and a whole host of other foods. Leaving

> them out of the diet means little to no itching. Of course,

> periodically I slip up (like last weekend) so now I'm still feeling

> the after effects.

>

> On the plus side however, since taking URSO for the past 9 months, I

> now have LFTs that are mostly within normal limits instead of

> somewhere in the stratosphere. My UC continues to be in remission but

> I have a lovely constellation of ulcers that I saw following the most

> recent colonoscopy. We can play connect-the-dots with them .....

>

>

>

[Guest guest]

There's an interesting dietary approach that someone had some

questions about in a previous post that I'm thinking has some merit in

how it attempts to explain some of our dietary issues. Called the

Specific Carbohydrate Diet, it basically suggests that anyone with

dietary issues such as IBS, IBD, and/or celiacs could benefit.

In a nutshell, the diet advocates for eating only carbohydrates that

are monosaccharides. The suggestion is that our intestines are unable

to properly metabolize complex carbohydrates, or disaccharides, which

means that sugars are going to the large intestine undigested. As a

result, the resident bacterial population has a ready source of energy

leading to gas, bloating, intestinal discomfort, and diarrhea.

I've grossly over-simplified the model here. For anyone interested in

further reading, here's the URL:

http://www.breakingtheviciouscycle.info/beginners_guide/the_science_behind_the_d\

iet2.htm

As far as how it works in practice, I know of only one person who

tried this diet and it worked insofar as offering him partial relief.

My co-worker's father had little success with the standard meds for

treating his UC (including Mesalamine and steroids). He tried the diet

and it made the difference in being able to travel in a car for about

an hour without having to use a washroom.

While I'm not as optimistic as the researcher who developed the model

in being able to say that diet alone could cure our issues, I think it

plays an important role and certainly may account for why some foods

are so problematic (i.e., wheat).

[Guest guest]

Mitch,

The whole wheat hasn't traditionally been eaten straight. It has

always been fermented or soaked somehow. It is a lot heavier that

way, but it is much easier to digest. The nutrients in whole grain

simply are not as available if they haven't been predigested yet.

Rice is a great way to start with soaking. I use whole grain basmati

rice and soak it in a tablespoon of vinegar, lemon juice or yogurt.

Leave it for 7-24 hours and then cook it at a low temperature. You

will find it much easier to eat than even cereals like Kashi. We

sometimes eat it as a breakfast food with cinnamon and some sort of

natural sweetener. And, by the way, you can't taste the vinegar or

the other fermenters. This also works with raw nuts (soak and then

cook in a warm oven or dehydrator) and other whole grain flours. The

Weston A. Price Foundation has a lot of information on this and some

good recipes. Just look them up on the web if you are interested.