Hello,
A few months back I had participated in a study. This study was with patients at Yale new haven hospital and also patients at Mayo clinic. I was on a vitamin to help reverse the progression of PSC. Each month I would go and get blood work done and it showed improvement each month. Has anyone else take part in this study? How did it go?.
what was the vitamin?
I have not heard about this. How can I get more information?
Thanks Clayton Rayson
YALE is studying vitamin D but I have no idea which vitamin study they are using on PSC. We are all taking vitamin D [I hope] our doctors prescribe it. Mine actually had the pharmacy give it to me. I take 25k once a week and about 5k a day. Now that it is Spring/Summer, I try to get more sunshine also.
Let us know which vitamin IF YOU KNOW.
Mona
Vitamin D is a fat soluble vitamin. It needs to be eaten with fat to be absorbed properly. I am curious how the recommended low fat diet jives with this.
I take my vitamins/supplements with Glucerna or other [Ensure/Boost]. Those drinks are balanced with everything...including oil. When I'm ON IT, I make my own natural fortified drink with better oil and ingredients. And, I drink/eat coconut oil. I only use coconut and olive oil. Supposed to take LARGE spoon of coconut oil with every meal or while taking pills. I KNOW, YUCKY LOL...if it's not liquid, it is the consistency of Crisco oil. But so good for us. I buy non-flavored for cooking. There are Coconut capsules but the stomach has to digest the cap first. I take a couple a day but not for the intention of helping other supplements.
Mona
@mona
good to hear. does your doctor recommend low fat to help manage psc? how about fish oil?
i also take coconut oil in my coffee. it tastes good and is great for us.
LOW FAT...YOU MEAN BORING :) LOL
Yes, absolutely. Have to get that oil in there though. Low fat helps the inflammatory process which UNFORTUNATELY, we are ALL about. Fish oil YES. I take the ?? Watson's Fish oil. I'd have to go get it to be sure. I make a drink and pour some in. It's flavorless but my BRAIN doesn't think so. Too funny.
I THINK our biggest problem is eating and NOT eating. We have to watch what we put in our mouths all the time. Don't get me wrong, I AM A BAD GIRL. However, I know what I am WILLING to pay the price for. I have a hard time digesting raw veggies. So, when I cheat it's not a steak...it's a chicken Caesar salad. LOVE IT!!!! We're all a little different.
Mona
well, bile is necessary to digest fat. i suppose that is why they recommend low fat. this doesn't make sense to me though. i would think if you kept the bile demands high by consuming good sources of fat, you would keep the bile ducts open and flowing freely. this is something that always confused me. then again the whole low fat mantra is pervasive across most health professionals so i suppose it is no different with liver specialists.
Vitamin A il see if I can find my packet on it later on.
bubba29 said:
well, bile is necessary to digest fat. i suppose that is why they recommend low fat. this doesn’t make sense to me though. i would think if you kept the bile demands high by consuming good sources of fat, you would keep the bile ducts open and flowing freely. this is something that always confused me. then again the whole low fat mantra is pervasive across most health professionals so i suppose it is no different with liver specialists.
another fat soluble vitamin
Ryan Donohue said:
Vitamin A il see if I can find my packet on it later on.
bubba29 said:well, bile is necessary to digest fat. i suppose that is why they recommend low fat. this doesn't make sense to me though. i would think if you kept the bile demands high by consuming good sources of fat, you would keep the bile ducts open and flowing freely. this is something that always confused me. then again the whole low fat mantra is pervasive across most health professionals so i suppose it is no different with liver specialists.
We have problems with ADE and K. Yes, all fat solubles. Because we have inadequate bile to break it down. That is why we have to have the low fat diet. We can't break it down. We have to substitute them in.
Mona
Hi Ryan . I am also very interested in which vitamin was being used in the trial. I have a 22 year old daughter diagnosed 12 months ago in Melbourne, Australia and would be most interested to learn more, Thank you so much for sharing your experience in the study. Kindest regards
Andrea
ok, i obviously need educated. i was under the impression that during flare ups, the bile ducts become constricted thus reducing the amount of bile available for fat digestion. when in remission from pcs, does the liver produce less bile than a healthy liver?
also, in the absence of fat, are the fat soluble vitamins in supplement form bioavailable for the body to digest and absorb?
Mona said:
We have problems with ADE and K. Yes, all fat solubles. Because we have inadequate bile to break it down. That is why we have to have the low fat diet. We can't break it down. We have to substitute them in.
Mona
when in remission from psc, are there still lower than normal bile levels available for fat digestion in the psc patient?
Mona said:
We have problems with ADE and K. Yes, all fat solubles. Because we have inadequate bile to break it down. That is why we have to have the low fat diet. We can't break it down. We have to substitute them in.
Mona
it seems that these fat soluble vitamins need to be consumed with fat in order for the body to absorb them. supplementing them without fat may be worthless.
Mona said:
We have problems with ADE and K. Yes, all fat solubles. Because we have inadequate bile to break it down. That is why we have to have the low fat diet. We can't break it down. We have to substitute them in.
Mona
Mona:
I was thinking about your statement. if you have inadequate bile why do you take fish and coconut oils?
Mona said:
We have problems with ADE and K. Yes, all fat solubles. Because we have inadequate bile to break it down. That is why we have to have the low fat diet. We can't break it down. We have to substitute them in.
Mona
Hay Bubba...Inquiring minds want to know LOL great that we are interested in HELPING OURSELVES
I'm not a doctor and we are all different. But, I think whether there is a flare-up or not, WE ACT LIKE THERE IS TO KEEP IT DOWN. Inflammation is our NASTY OLD FRIEND. Celery and radish STIMULATE bile and artichokes increase bile production. Technically, a high-fat diet MAY stimulate bile. Now, we don't want a high-fat diet because we are defeating the purpose. Cirrhosis for example: decreases bile production. NOT having a Gallbladder for the bile reservoir is a BUMMER [I let them take mine out]. So, in that respect we are different.
Adding the Coconut oil is so great [for everyone]. Great for skin care, weight loss, maintaining cholesterol levels, stress relief, increased immunity, proper digestion.... I take many enzymes...several times a day to aide digestion. Fish oil was prescribed by my doctors at Loma Linda.
Mona