Diet

[Sandie1]

Are there any foods/drinks which would be harmful, or unhelpful with having PBC

[Hidden]

Hello Sandie1.

I did ask pre-diagnosis and after diagnosis regarding foods that maybe should be avoided with liver problems. The consultant said to just eat normally.

I have been a bit of a staunch supporter of a lower fat diet for many years, eating fried foods for me is something of a rarity and still is. With PBC it can be the fats that can be more of an issue as bile is required for breaking them down so to me a diet with less fat intake might be more beneficial as the system has then less to deal with. Though I have never asked anyone medical, I seem to think myself that perhaps bile is produced on a supply and demand and excess stored in the gallbladder if we have one (I still have a gallbladder).

For me I just try to cut out certain food additives that I have always been a bit wary of as to me most are not natural to food. I have never been partial to artificial sweeteners so don't go in for diet yogurts, drinks, etc.

On the whole I think quality regarding food and drinks are to me more important than quantity. I also tend to cut off from eating following the evening meal and I find I feel better with it. I did come to realise that over the years as I got older (I am nearly 52 now, been diagnosed with PBC since I was 46) my appetite did start to change. I can eat exceptionally well at breakfast and also lunchtime but then as the day wears on tapers off and often I find I cannot eat a large evening meal. I rarely eat and feel overly-full. I sometimes just have a plain biscuit with a drink around 9p.m. if I feel the need.

[Rockie in reply to Hidden]

Hi Peridot. I fully agree with you. You cannot continue eating whatever you used to eat before PBC. For me gluten, fatty foods, I avoid. Do you also find that some days (sorry it is sort of personal stuff) you tend to go to the loo more than other days. I no longer have the loose stools, but can somedays go to loo for about 8 to 10 times, and other days feel sort of constipated and go maybe 3 times to the loo. Sorry for asking this, but only PBC people can answer these questions. Have a good weekend to all of you

[Hidden in reply to Rockie]

Hello again Rockie.

Well I would say I still eat the same as I did pre-PBC diagnosis. I reduced fat intake in my diet as a young adult. I was born in the 1960s and back then take aways weren't the 'in thing'. Fish and chip shops seemed to be the only take away food outlets locally and these were something back then as a treat as opposed to a regular occurrence. I've never got used to having take aways though they are now rife everywhere.

I haven't really noticed much in the bowel habits are regarding big changes since PBC diagnosis and starting urso. I know I started to become a bit constipated in the early days of urso but all I did was add a bit more additional fibre to my diet and I don't seem to have the problem. Pre-diagnosis I would say I was pretty normal regarding bowel habits. I do think the urso plays a part in the bowels and my theory is that some days depending on what we eat and the balance of the bile, this might be some explanation.

[Rockie in reply to Hidden]

Hi Peridot. Thanks for responding. You seem to be really coping or shall I say accepted and just go on. What else can we do?

[gmo3352]

Hi Sandie 1! When I was diagnosed with PBC, I was found to be in stage 4, so perhaps my diet is more strict. My specialist said any alcohol, in any form, was toxic, including meats or chicken cooked in wine, wine dressings or gravies, fruits poached in wine or brandy, even beer in chili, etc. I was a little surprised how much I cooked with wine! She said to work on greatly limiting sodium, and again, I was stunned at sodium contents in canned foods, and drinks, such as soup and sodas. she also told me a cup or 2 of coffee or tea a day was beneficial, apparently it helps with water retention. She said fresh fruits and vegetables are a must, and suggested drinking more water. Like Peridot, I try to stay away from fatty foods. They just hurt later.

I hope this helps. All the best to you!

[Hidden in reply to gmo3352]

Hello gmo3352.

I was originally asked after my first abnormal LFTs (the liver function test) back in early 2010 how much I had been drinking alcohol-wise! I stated to the doctor that I hadn't had any alcohol in 3 months (festive season and definitely not over the top either) and I wasn't much of a drinker that is truthful. He re-did the LFTs as routine and when another GP got the results he stated when he rang me at home with the results and where to go next regarding the bloods and also the fact I had presented to a GP with itching that the first thing a doctor would ask regarding elevated or abnormal as in higher LFTs was if you were a regular drinker.

Apparently the odd glass of alcohol isn't of much of an issue in PBC unless one is at a later stage or has cirrhosis. It is said that we are quite tolerant in earlier PBC even of certain medications that can have an effect on the LFTs. I still stand by the fact though that even the odd glass of alcohol might raise the LFTs slightly regardless of how you really are with PBC and to I'd rather try to avoid any rises in the LFTs as to me it might take longer for them to start to come back down again. But it is personal choice.

I have never added salt to food I have been cooking or any baking since I left home as a young adult. I just feel that it is not needed. I know my parents used to add salt to water that potatoes were boiling in as did other family members and neighbours. I've never had a salt pot at my table for dining. I do think manufacturers add enough of the stuff to certain foods as it is without adding further.

I did once read that coffee was also good as an anti inflammatory and I think this is why it is said to be beneficial for anyone with a liver disorder. Onions are also said to be anti inflammatory too. Years and years ago when I was growing up I had a GP who was very into foods that were more beneficial. I worked locally in a greengrocers as a Saturday girl and this GP used to come in. He swore by onions and also melon in the diet for good health. According to him melon is good for settling the stomach and onions as already stated. Out of interest this GP lived to a good ripe old age.

[Gioielli5]

Hi Sandie, I am a pescatarian and have only eaten fish and vegetables for the past 19 years. I believe that not eating meat helps my PBC a lot. I have never really suffered from the dreaded itch and other than feeling tired at times if I do too much ( which might well be just old age - nearly 62), generally my health is good. Have had PBC for 10 years now and on medication for past 6 years. Do keep quite active although overwriting from full time teaching 3 years ago obviously not as fit as then. My advice is same as others, better to eat little and often and avoid fatty foods and eat less meat!! Take care, Julie x

[teddybear7]

I eat low fat low sugar & healthy. Brown rice wholemeal bread vegetables etc. I can't tolerate anything fatty especially Indian food. I'm allergic to all fish anyway. And alcohol is a definate no as it sends me to sleep while it gets rid. I find low sodium salt helps. I don't know what stage I'm at .

[coutryquine]

When I asked my sister's consultant he said follow a normal balanced diet. This was after we had said nurse at gp surgery had given various diet plans every time she visited. So had one to cut cholesterol, one to help IBS and one to help osteoporosis! Each onr seemed to contradict the other so felt exasperated by consultants response to see dietician. She has taken charge herself and cooking more meals from scratch as best way to avoid hidden extras making easier to pin point triggers for unwanted side effects. With any health issue I think we all have to listen to our own bodies and be our own experts as no one size fits all. Easier said than done when you feeling like a wrung out old cloth as my old mum used to say! Take care everyone out there.

[dollydaydreams]

Hi Sandie, I am afraid i am a bit of a pig and took my gp's advice and eat what I want, I do have loose stools at the moment but this only started when I went on cholestyramine for the itch, I do cook with wine sometimes but only drink non alcoholic wine, there is a very good one sold by asda called FRE it's pink and called zinfandel and it tastes exactly the same, I was told a little alcohol does not hurt but I choose not to drink it, but i did have a brandy last night with no visible ill effect as someone tried to break into my house and shed while we were home, the police did catch him by the way and now i feel bad as he was a homeless person just looking for somewhere warm to sleep.

[Hidden in reply to dollydaydreams]

Hello dollydaydreams.

Yes I too eat as I want but I tend to be a low fat eater almost all the time, plenty of fruit and fresh steamed veg and cooking that I know what the ingredients are. Never had a chip pan so no problem there. In my home we tend to eat more fish and chicken as opposed to red meat.

I started to have the odd bottle of a non-alcoholic beer 2 years ago and on and off I pick one up at the supermarket. It is Erdinger and so far the best one I have had besides another one with 'dog' in the title. Never been much of a drinker and I only have half the bottle, my husband will gladly drink the remainder. The funny thing is since I started to itch early 2010 he has cut right down on his beer consumption and seems nowadays he only has around 4 bottles of beer at home spread out over the weekend. I know when I've ha d slightly disappointing result from the bloods it appears it is a time when he seems to appear to be guilty about alcohol and for a spell actually lays off it.

[Mary48]

Have been diagnosed for 12 years and have no gall bladder. I just follow a normal, Low fat diet, drink alcohol and eat fruit and veg. Think we are all different and over time learn what has consequences. Yes I do enjoy cream cakes, vodka and tonic, cheese; but have these occasionally.

What makes you comfortable food wise is best. PBC is a condition to be tolerated but no fought against, it has taken me a long time to realise this and now i live despite it

[Hils67 in reply to Mary48]

Ah so glad to see your reply Mary...I'm recently diagnosed and very apprehensive about having to cut out all alcohol. My partner is in a rock band, so going to gigs, having a few and dancing along to the music is part of who I am!! I also love cakes etc...so its so encouraging to hear you're quite a few years down the pbc line and still enjoy your food and drink 😀.

Thanks 😉

[Hidden in reply to Mary48]

Hello Mary48.

As you probably know by now I choose not to have alcohol but your mention of cream cakes, the odd time I buy one for a treat (my brother was here last week, bought a raspberry pavlova for after our meal that was pretty low fat so I reckoned I could warrant some. No problems following having).

Good on you too Mary48, yes PBC is better being there but us getting on with out lives regardless. I don't over think regarding having this PBC even though some days I feel I have had enough of the itch (but then the following day it's not very bad!), I have found that regarding diet, I just make on the spot decisions about certain foods (ie been eating pretty great all day, 'why not have that pavolva' for instance and take it from there).

[Sandie1]

Thank you everybody for your replies, its nice to know I am not alone, I find friends and family don't really understand because most of the time I look so healthy.

[tinypixie]

Sandie1, I think I'm a little different from many people. I find that I NEED to eat fat, particularly since I also suffer with dry eyes and mouth. I'm also quite thin so I need the calories. I avoid trans fats but I eat saturated fats (butter, etc) as well as the other types of fats. I'm not aware that eating fats bothers me.

I do try to avoid sugary foods since refined sugars are not "natural," and apparently make hard work for the liver. Also, I feel sick afterwards if I eat a sugary dessert.

I agree with Peridot not to have large meals since I feel terrible when I overeat, even by just one bite!

I don't drink alcohol because I feel quite sick afterwards, even after just a few tablespoons of wine.

I hope this different point of view helps!

[Debbiem40]

I was diagnosed with PBC in 2003 and in all that time my consultant has never told me to avoid any particular foods or not to drink alcohol. So I have just carried on as normal, wlthough I do watch my weight so do try to eat relatively healthy - but not as a result of the PBC.