Fatty foods?

[Guest guest]

So , why are fatty foods a problem? Are they a problem only if you have UC?

has

had psc since '94 and no one has said he needs to change his diet. Did I miss

something?

, wife of (psc 94, CCa 07, waiting for tx)

[Guest guest]

My docs said I do not need to change my diet, but I have noticed that I

do not tolerate fatty foods well. Bile is what helps with digestion of

fatty foods, so the doc said this maybe a natural progression of having

PSC. I also have increased white, floaty stools after eating a fatty

meal which is a sign of not having enough bile into the intestine from

the liver

PSC 5/2007 Listed

>

> So , why are fatty foods a problem? Are they a problem only if

you have UC? has

> had psc since '94 and no one has said he needs to change his diet.

Did I miss something?

>

> , wife of (psc 94, CCa 07, waiting for tx)

>

[Guest guest]

I " pay for " a rich chocolate malt on the very few occasions I indulge. In my

case, it's primarily due my missing gallbladder. The gallbladder serves as a

reservoir for bile, which is released when your system senses fatty foods.

Without the reservoir, fatty foods have a tendency to get a free pass (so to

speak).

I feel a lot better if I keep my fat intake well below the recommended value. I

shoot for 30 gms/day or so. I don't think it's related to PSC, at least in my

case.

Arne

56, UC 1977, PSC 2000

---- scottefranson wrote:

=============

So , why are fatty foods a problem? Are they a problem only if you have UC?

[Guest guest]

Hi ;

Can I recommend reading this article from almost 40 years ago?

Chronic Cholangitides: Aetiology, Diagnosis, and Treatment

Sheila Sherlock

Br Med J. 1968 August 31; 3(5617): 515–521

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1986450

Glad to hear that is doing so well in the CCA treatment, and I

wish him all the best in his upcoming transplant!

Best regards,

Dave R.

>

> So , why are fatty foods a problem? Are they a problem only if

you have UC? has had psc since '94 and no one has said he

needs to change his diet. Did I miss something?

[Guest guest]

Hi:

A lot of us (myself included) find that eating a reduced fat diet

reduces itching (and sometimes pain). I have had PSC for 22 years

and generally eat a low fat diet but on the weekends wouldn't restrict

myself. For the past 1.5 years though I've had many problems with

itching and some pain - I find that eating 5-10gms (maybe < 20-30 per

day) helps a lot. Also, bile acids are made from fat so my theory is

that reducing the fat reduces the use and production of bile acids.

Anyway, it seems to help me.

> >

> > So , why are fatty foods a problem? Are they a problem only if

> you have UC? has had psc since '94 and no one has said he

> needs to change his diet. Did I miss something?

>

[Guest guest]

and I had to laugh when he read this article to me, . Our

youngest child, born just two weeks ago, has a genetic disorder called

MCAD. It keeps her from being able to break down medium chain fatty

acids. So where do we go from here... Sometimes all you can do is

laugh. And we all have to be tested. I'm not sure what we'll do if

Pearl has this disorder. She has a 25% chance of having it. The oils

that we use at home tend to have these fatty acids in them - palm oil

and coconut oil, for example. It seems to be that " healthy " is

constantly having to be redefined in our family.

[Guest guest]

Hi and ;

I'm so sorry to hear about your baby's MCAD diagnosis. I don't know

much about MCAD, but did notice that the MCAD gene is fairly close to

the IL-23R gene that has been showing up as a risk factor for

autoimmune diseases in recent months. I'm not sure whether this is

significant, or just a coincidence?

Have your baby's doctors given you advice on how to manage this

inability to break down medium chain fatty acids? Is the key preventing

fat breakdown by avoiding periods of fasting? Do you have to provide

alternative sources of energy such as carbohydrates? I do hope that

Pearl Ann does not have this condition as well. I can see that you must

be in quite a dilemma about what foods to prepare. Please let me know

if there is anything that I can do to help in getting information.

Best regards,

Dave R.

[Guest guest]

Hi ;

A more up-to-date article on nutrition issues in PSC and PBC is this one:

Alnounou M, Munoz SJ 2006 Nutrition Issues In Gastroenterology, Series #37. Nutrition concerns of the patient with primary biliary cirrhosis or primary sclerosing cholangitis. Practical Gastroenterology April 2006: 92-100.

http://www.healthsystem.virginia.edu/internet/digestive-health/nutritionarticles/April2006.pdf

I hope the link comes though; I'm not sure whether it will be split onto 2 lines, requiring you to cut and past the URL into your web browser?

Fat malabsorption is discussed on p. 95.

Best regards,

Dave R.

[Guest guest]

Thanks! Those links are helpful.

How do they test for the vitamin deficiencies? It is just a blood test?

If you have a deficiency do you just take more vitamins, or do you have to eat

medium chain

fatty acids for any of them to be digested?

and , so sorry to hear about the MCAD diagnoses for your newborn.

As if any of

us need more to worry about. God Bless.

[Guest guest]

Thanks for your concern, . Since Nikka is so young we are mainly

concentrating on getting her fed every 2-4 hours. I am nursing her so

that means getting up all night and feeding her. I know that most

people have to do this, but it seems different when your child's life

could hang in the balance and your baby acts as if they aren't hungry.

The doctor said there is no need to supplement with carbohydrates at

this point. We also have to take her blood sugar if we suspect

something is wrong. Beyond that, the only medication she has to take

is carnitine which cleans out the blood of the medium chain fatty

acids (cleans up the " trash " that the missing enzymes are supposed to

take care of). Apparently carnitine does not do its job very well, but

it helps some.

>

Pearl has a 25% chance of having it if and I are only carriers

and a 50% chance of having it if one of us actually has the disorder.

If she does have the disorder it is going to be tough to figure out

what to feed her. We try to be very careful eaters and spent years

trying to figure out what was best and healthiest for our family. Our

children having these diseases and disorders has sent us searching again.

What is interesting is that one of the risks of having MCAD is getting

severe liver disease. I'm not sure if that means just fatty liver or

something beyond that as well. We suspect a link with Pearl because

the chances of both children having such rare and seemingly random

diseases/disorders seems pretty low ( has actual numbers).

is interested in finding more information on the affected genes.

If you have more information about the IL-23R gene we would

appreciate seeing it.

>

[Guest guest]

Hi and ;

Thanks for taking the time to explain how you are coping with Nikka's

MCAD deficiency. When you first mentioned it, I looked it up on the

Online Mendelian Inheritance in Man website:

http://www.ncbi.nlm.nih.gov/entrez/dispomim.cgi?id=607008

http://www.ncbi.nlm.nih.gov/entrez/dispomim.cgi?id=201450

This site does mention that it " typically presents in the second year

of life as hypoketotic hypoglycemia associated with fasting and may

progress to liver failure " , but it doesn't give much info on whether

or not this can resemble PSC, and it doesn't give much attention to

treatments.

As I mentioned earlier the location of the MCAD gene (1p31) is not

too far from the IL-23R gene (1p32.1-p31.2):

http://www.ncbi.nlm.nih.gov/entrez/dispomim.cgi?id=607562

which has recently been associated with Crohn's disease, ulcerative

colitis, psoriasis, rheumatoid arthritis, and autoimmune thyroid

disease. A list of abstracts of papers discussing IL-23R can be found

at:

http://www.psc-literature.org/IL-23R.htm

Best regards,

Dave R.