After being dignosed with PBC (and possible AIH overlap) I've gradually learned to accept the fact that I have PBC and it's not the end of the world...
AMAs and ANAs both well over 5000 titer and liver biopsy revealed stage 1 fibrosis & damage in my liver. Have been taking 5 x 150mg URSO for about six weeks now. I asked the liver specialist about diet but she said none nesessary! Then she said, musingly, almost as talking to hershelf, that "Your cholesterol will of course be going trough the roof, but that we will deal with medication."!
I was flabbergasted by my specialists' cavalier view on diet and autoimmune liver disease. Am quite slender and have been a lacto-vegetarian or over twenty years but I'd be very happy to get some dietary advice from you guys! The prospect of my cholesterol levels going throug the roof isn't especially appealing to me… Thanks in advance!
Terhen
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Terhen
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When I started having bloods in early 2010 after starting to itch which took me to see my GP, it was found that my cholesterol levels were a bit higher than normal but I then found out later on that it tends to be expected with PBC (can't say for other liver disorders as we are on about PBC here) due to bile compromisation, bile of which is needed to break down fats in the body.
There seems to be some conflict regarding cholesterol, the good and the bad. I know when I saw the hospital consultant he wasn't even bothered about this. Plus in my view (though it is my view and I can't say if it is right) urso was developed originally to use to dissolve gallstones that were formed by cholesterol. That to me then means that the urso will act upon cholesterol in the system. I suppose then it depends on each individual as to their intake of fat that contains cholesterol.
I think if I was in your situation with the consultant I'd perhaps after starting on urso after awhile request a re-check of the cholesterol levels. I expect some with PBC can have cholesterol levels of someone without PBC that can be treat with medication.
Perhaps someone else on this site can perhaps inform you of their experience as I do know from past postings that some have stated that they are having a problem with their cholesterol levels and that they are taking a medication.
Thanks for your answer! Maybe I was anit unclear in my message,, but I do definitely have PBC, the verdict is still out whether I have an AIH overlap...
I'm in Finland and here the dr:s like to have every possible test done and the final diagnosis "needs" a biopsy. (Maybe because Finns with chronical illnesses get the needed meds almost for free.)
Anyway the hepatologist was in the opinion that it is PBC that will cause elevated cholesterol levels. And by this she was talking 3x normal. My hair stood at the end when I heard this said in such a manner as hers, like it was just a little blib. I have never been on a diet in my life, well not to lose weight or count calories anyway, so feel like cutting my daily intake of fat down is difficult. As I understand it, humans need some fat in their die...
Sorry for rambling on! This has been quite an experience: learning that I have PBC and then enduring tons of tests and dics appointments. It feels like there is no corner of me that hasn't been scanned and like my blood has almost been changed due to the amount of blood thats been taken out of me...
All the best Peridot, I hope you keep on feeling well!
I am same as you Terhen. All bloods back to normal now. My cholesterol was 11 but down to 5 now. It changed once my liver got back to normal following the meds kicking in for AIH/ PBC. Chances are with you that it's as high as it will be, there is no reason to go higher. Everything will be under control now. I'd stick to your usual diet, it sounds fine to me. We've had some great discussions on here about diet, search through old posts - food for thought
The cholesterol is generally higher in those with PBC from my understanding even to no fault of diet, but from what I've read it doesn't increase heart disease and/or heart attacks. Cholestyramine is often prescribed for itching and may help cholesterol levels as well, but also the Urso should help lower it too, I think. If I'm wrong hopefully someone will come along and provide you with better information. I also think your Dr. could use a little more tact.
There are a lot of dietary restrictions for PBC out there. For example some sites like merckmanuals.com/profession... says you should stop with alcohol.
What is common is that you can get too little of fat solvable vitamins like A, D, E, and K.
But more basic stuff, for example of fat is bad or just unusable for a PBCer, I do not know. After starting with Urso, I regained 5 kg, so something changed: do I process fat better or was it that the Urso made the itch disappear, so I sleep much better.
Is there any proper evidence based food recommendations out there?
Hi, I have high cholesterol just now but no one is worried. My good cholesterol is also high. Told it can be treated by statins but I have decided to leave well alone just now. A few years ago it was sky high and came down itself, so hoping it will do the same again. I have had PBC for 16 years and have never changed my diet and drinking just the occassional drink. Obviously I get the usual symptoms of PBC and some of the stranger ones too but my philosophy is to just get on with life and enjoy it as much as I can.
Tut tut tut to your specialist. If only medical people would realise the effect that their cursory remarks have. When I first saw a specialist last year in this country (last year) I said to her that I would probably die from something else, she quickly told me "let's look at 10 years", I was flabbergasted! I had been living in France have all my medical history and my blood results all in normal range, scan said no fibrosis or cirrhosis. Next time I saw her she said she said about name change for pbc, i said makes no difference to me I 'm going to end up with cirrhosis and she said " not according to your test, she done a blood test that picks up on fibrosis and I had none. So life was back on track and I now feel positive again.
My point is that they are a special breed of person specialist and not always aware their words can have on their patients. Some people regardless of weight or diet have high cholesterol. You can get cholesterol from foods but also cholesterol is made in the liver. I don't understand it fully to be able to explain here. Some people with pbc have or will get high cholesterol and some won't.
After my last visit to the specialist I went to my GP and asked her to get all my results blood and scans, as I am used to having them, she was able to do this on the computer. I feel more in control knowing the facts. I don't know where you are in the world but in the UK it seems that you own health is a secret to you. I am used to having all results including scans (i can't read a scan but i can read the conclusion). What I do find incredulous here is that doctors receptionist have access to your blood results and proceed to tell you results in front of a queue!
Is your cholesterol reading high now, mine is border line but i am overweight but don't take any medication.
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I see you said you are vegetarian. Do you eat a lot of dairy products? Cheese is the big offender. As regards to diet in my experience vegetarians generally eat a good diet. I was told to just eat healthily, i eat all things naturally, no ready made food, no fizzy drinks (justas a treat). Have you ever seen the food blog 101 recipes, its vegetarian and healthy, its a great blog from an American.
The point is that you do not only have PBC - but like me you also have AIH. This is quite different to only having PBC. You are most likely being treated with steroids - maybe if they get you stable on steroids you may be lucky to get on azathioprine or if you cannot tolerate it, then another immuno suppressant. I have not been able to get on aza so am in my fourth year of steroids. It makes staying healthy weight a struggle. However even my very good consultant would tell me nothing about what I should eat. I have high cholesterol and take rovuvastatin (one of the better statins). However I had to do my own extensive research on diet that suits me. Lots of fresh vegetables and salad, some beers and fruits, fish, chicken and lean cut meats, occasional seafood. Eat crap, feel like crap. Even though you say you have no issues on your weight, it does not always mean that your diet is good - so just eat well, live well, and just have occasional alcoholic drink if at all. All the luck x
I had high cholesterol and was told it was to be expected with the PBC think I was about 7.9 at that time. Strangely when I lost weight, which I needed to lose! my cholesterol went down to 4.5 so nothing to do with the PBC at all it appears. Sorry don't know much about AIH overlap in this regard.
Sorry I haven't responded before. I was in a dark(ish) place for awhile. Lost in scans, specialists appointments and fighting with bureocrats about my late fathers estate (dad died in April).
Thanks to you all for your replies, kind words and advise!
Am on Urso and just found that my liver markers have gone dramatically down in less than two months, yay! No on steroids because it's not yet sure if I actually do have AIH overlap or not. My liver biopsy showed some inconsistency with my blood tests witch do confirm PBC. I'm having a mrcp scan to rule out PSC overlap.
At BMI 18 I really don't need to loose any weight and as a vegetarian I mostly eat well, vegetables, fruit, berries and dark bread. Some milk based foods also, mostly yoghurts and skyr (if you know what it is...) Am sitting outside writing this on my phone so I don't have a dictionary handy, sorry for all mistakes I'm making!
Do any of you know is it ok to eat omega 3 suppliments? The doctors have told me to eat vitamin suppliments but absolutely no other natural remedies. I forgot to ask about omega3.
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