PBC Foundation
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Hi thank you all for your advice. I am taking my urso, and so what if I itch. I have had a lovely day today with my friend. We went to the Christmas market in Manchester....I wondered about diet. I have been reading on certain medical websites, even the mayo one and I am wondering what is the right way to go. Some say for PBC and AIH we need a high protein diet; and others say we need to limit the protein we eat, because our liver does not work properly, and can't process protein properly, even my dietician said I need to eat more protein, she is not a specialist in liver disorders though. It's so confusing, I just want to do right and look after me. Could anyone tell me which is the best way forward here please.

I have also been reading through posts on here, some who are very shocked at their diagnosis....I was diagnosed in March 2012, which came as a huge shock to me, and I still worry about the future. My friends are very good to me, and they realize I can't do everything I used to do, but sometimes I have to stay home as I can't do a lot of what we used to. If honest sometimes you do feel isolated. I am scared of what might happen, but for now am going to get on with life as best I can, because I have to. I am not caring for my sick friend anymore her family are getting carers in...which is wonderful, as it means less stress for me. Stress makes PBC and AIH much worse. When you have both, it is difficult sometimes to identify which of the two are playing up on any given day, and I am still learning;. I also find that when the PBC and AIH are active I lose weight, when they settle, the weight goes back on lol....confusing as hell but I am alive and that's what is important.

I wish you all a very happy Christmas, and a healthy new year. xxx conniefused

7 Replies

Just realize you are a beautiful person and that you are not alone which I have discovered by reading everyone else life, I too have Please b c and no one understands it, they all think I am a hyperchondriac.


conniefused, I diagnosed 11 months ago, living in N. Wales, getting very poor assistance, now locked into Manchester NHS and visiting Newcastle Transplant dept. in early January. I too had appointment with Dietician, her first sentence was you need a High Protein Diet .... I queried this and she said lets re meet once she looked into it deeper... seems like butter (bad for you / good for you, eggs 1/2 glass of red wine ETC). seems they now have changed "their" minds on Protein, and now its good to eat lots of protein. PBC is difficult enough to comprehend, it simply can make unmeasurable little difference can it? or "They" would really have a clear and set idea! I guess we are all learning, and unusually for me, I think listen to your body is good advice... I now eat Shreddies, milk, a dash of cream and syrup, along with fruit, this makes up 80% of my diet, It just feels right.... Good Luck and have a relaxing time over the holidays, Charlie PBCnPCB


Hello conniefused.

To be perfectly honest I do not take much notice at all about what we are supposed to eat andnot eat/drink with having PBC. I think some things (ie alcohol for one) are common sense (to not have or perhaps have as a minimal drink of the odd occasion). I have not read anything that states you should avoid anything (other than alcohol being mentioned really) plus my consultant told me to have what I wanted as I did ask.

I try to follow the lifestyle of trying to eat healthily and having different sorts of foods that would cover the different food groups. The one thing I do try to limit is fat in my diet. I have become more relaxed about everything now that I have been diagnosed with PBC for 3yrs. I think after you tot up another year and you know you are doing quite well you just get on with living.

I started to hate having a meal out due to the fact that majority of establishments be it restaurant or pub seem to rely heavily on adding dressings and gravies to their meal that are pretty much very high fat content. (Plus I don't find eating anything that is vinegary very good these days as altho' I seem to be fine with having the odd bout of heartburn at urso brand change twice in the last 12mths., heartburn was one temp side-effect for me.

A few nights ago Iwent out with my husband and father-in-law as his xmas get-together for a meal and I chose a roast turkey meal and asked to omit any gravy. it was a new country pub and the food was made from scratch on the premises to order. The meal was clean and well-presented and I did ing enjoy eating it all. (We do try to eat before 6p.m. as I find it works better for me somehow.) I couldn't have managed a dessert but my husband and I shared a Tiramasu which was lovely. I passed on the ice-cream that was included. For me the fatcontent that would have been in this meal did feel OK due to the fact I'd not had much of it during the day. That night I just felt a mild itch so nothing untoward there.

I do try to concentrate more on food additives as I do deem a lot to be bad news. I still think the quality of the food stands for a lot and even on a low budget you can cook pretty simple meals yourself and you know what's in the dishes you prepare then.

I'm fortunate that I've not felt the fatigue since prior to diagnose in 2010 and later in 2011. I still go out and about as normal. It's night time I do not like as I start feeling prickly and then uncomfortable. I don't think I could confine myself to sitting at a cinema to watch a film these days. I always found it hot in there prior to 2010 and now I think I'd feel so hot and then start to itch I'd rather not bother.

I wasn't exactly shocked at diagnosis having stumbled across PBC months before it was ever mentioned by a doctor. My big gripe is how I was treat following diagnosis. Find that some doctors just do not think it is much to have, give you a script for the urso and then send you on your way. Then you manage to get a GP who goes all dramatic on you. I saw the GP beginning Dec and she simply got all dramatic on me when I said I'd gone in and kept the appt following the blood repeats due to her colleague ringing me at home later day and confusing me. (This other GP who rang she only compared my current LFTs against the ones I had in May this yr and made it sounds really bad. I informed her that this time of yr since 2011 my LFTs seem to have risen slightly and then they go down early the following yr. Looking at the printout of them myself I was not worried in the slightest.) The GP I went in to see then following the colleague's phone call, she thought when I said I was confused, it meant I was starting to feel effects of PBC!!! I told her I was confused as in confused as to what the results were and also at the same time confused that another GP had got involved in them.

I'm not quite convinced that stress can make PBC worse. I think suffering from stress and having PBC could be a case that when we're feeling stressed we tend to not be able to carry out things like we normally would and also for some of us like me we find our appetite just diminishes. This then has a knock-on effect in the system as I know for a fact that later in the day for me, I itch after eating spaced out throughout the day. I know if I didn't eat in a day I'd not itch as prior to start of 2013 I did have the odd day where I felt down with this PBC after a bad night of itching and then found I couldn't eat so didn't for the day and I then didn't itch.

Not sure about diet in AIH at all as only have PBC so cannot make a comment there. There are certain foods though that are thought to be good for the liver, coffee is one (but obviously drunk through the day moderately. I have 2 cups a day normally). Licorice is another but that has to be also eaten moderately especially if you have high blood pressure (I don't ) as it can raise blood pressure.


I have been doing some testing now with what I eat. I was for a while on low-carb diet, but then I decided to try how I would feel when I eat 'normally' again. I have to say that I feel much more tired. So after the chirstmas I'll continue my low-carb and raw food diet, just because I feel better and more energetic. I found this link concerning the raw-food and pbc (propably an advertisement), but still worth to try if it improves how you feel in everyday life.



Hey sunny what do you eat then?


Hi! Well, I eat vegtables, nuts, lenses, cheese, all milk products, eggs, fish, fruits. Diet is not hard, but I have always been a bread eater, and that part is sometimes hard. So simply, I don't eat any sugar, flour products, potatoes and rice. So this is not a raw-food diet, but I try to eat much fresh products, like carrots, cauliflower, tomatoes, and such. :)


Thanks for that.. I've slipped of late.. But mostly good.. O like to see what works for other people. X


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