Has anyone found a specific way of eating t... - PBC Foundation
Has anyone found a specific way of eating that helps PBC symptoms? I'm thinking does it help to cut out fat altogether etc. Advice please?.
The PBC Foundation 's Compendium and not only certainly do not advise to completely cut out fats, your body does need fat. But the good kind - no margarine, no (or as little as you can) fried fats, more Omega 3 rich foods (or supplements - discuss with your doctor of course, some say it can help with Sicca syndrome symptoms) like fat fish, salmon, sardines, etc.
One thing that is valid for anybody who eats 
is that you need to chew your food very very - very well. We often think that the mouth is a whole to throw food into the stomach, which it isn't. Digestion (which obviously PBC people have some issues with, or at least at times) starts in the mouth, not only through the mechanical process but also through the work of enzymes and other stuff in our mouth and saliva. That's why people with dentition problems often also have digestion/bowel movement problems.
So not only WHAT we eat counts, no matter if we have a healthy or a challenged liver, but also HOW we eat, and WHEN (not 3 huge meals a better, better 4-5 smaller meals, as the PBCF Compendium also recommends). And eating in a state of calmness, without agitation, hurry, or whilst being distracted by TV or reading - that helps for a good digestion and absorbtion of nutrients as well.
Good luck.
Thank you for this too- any information is food for thought. I really would like to 'nail this' problem. I shall take note of how I'm eating, not just what I'm eating!! Thanks again.
Hello issipy.
Interesting question and one that I'd love to be able to 100% positively reply to but unfortunately after 2yrs being diagnosed, I am still attempting to fathom this PBC out myself.
My hold-up is attempting to fathom out how to reduce or perhaps wipeout the itch I suffer most nights. I think with regards to that I have decided it's pretty much a difficult one that is not only frustrating but I think could be impossible unless one tried prescription drugs (I don't want to go down that route as yet).
I know that if one wasn't to eat then everything seems ok as the itch does vanish but as we all know we can't live without food for energy and body-building/repairing.
I always thought I did eat healthily and I noticed I got hungry towards noon but come the evening meal my appetite had waned. This is still the same now with PBC.
I know that there are certain things I no longer have, even for a treat (the odd glass of fizzy pop I've never been overly-partial to is one, don't want the additives). I find by eating as healthily as possible and just eating until I start feeling I've had enough (I don't eat large portions like I did whilst growing up) I have found that I do feel better and the fatigue has long since vanished.
I used to like juicing and blending fruit and the odd vegetable (carrot for one) but I find these days, I do tend to itch a bit more at night so I think the concentration of just 3 fruits together isn't the ideal in my case. Despite being advised to eat a lot of fruit and veg., I actually find that raw fruits and veg don't seem to make me feel better these days, I now prefer to cook apples and limit the fruit juice but I do still eat a lot of vegetables. My theory with raw fruit and veg is that they take longer for the body to digest them so our body is working harder.
I didn't used to eat a lot of fat prior to PBC but since, cut down even further. I have a cast iron griddle I use for cooking on at times and am strict where fat is concerned on even poultry. Gravy is one thing I don't partake of, never really did as growing up (find it difficult eating out where this is concerned here in England tho', seems to be the norm to drown food in the stuff!).
It has to be remembered tho', we do need a small amount of fat in our diet as certain vitamins are fat soluble. I think with fat it is the quality and type that is of more importance. I discovered rice bran oil not so long ago, it is cholesterol-free and pretty good for frying foods in and used sparingly very economical.
Thanks for that. Yes, my itching is worse at night too, and sometimes keeps me awake. It seems really wierd to me, as there is never a rash, just itching round my neck and the backs of my hands. I will try cutting out my diet coke, and like you I have already cut down on the fat- just would love to find a way of eating to suit me. Thank you again
Dear Issipy, I can tell you what I've found works for my own body: eating anything too high in fats makes me feel sick, bloated and makes my chest and shoulder pain worse. When I can stick to low protein, low carb, low fat diet (it's mostly raw fruit and veg) I feel on top of the world. But this is rare since it's almost impossible for me to maintain (I love food!). I feel better not having any caffeine or alcohol and by taking regular exercise. I realise this makes me sound like a nun - I am not and I have very little will power especially when I feel exhausted but I do believe diet and exercise play a role in PBC x
That's interesting, because I've had a bit of nausea recently.. could be the fat as well then. I have definitely felt better this week now I've cut down on the fibre (which I've done for IBS) and following someone else's comments I'm going to ditch the diet Coke too.
It's not easy deciding what to eat and still 'have a life' is it?
Thanks for your thoughts- I'll do my best.
Dear Issipy,I'm trying to cut out the diet coke too.I have known for a long time that the sweetner aspartame is bad for everyone.I read an article last week about the harmful effects of aspartame on people with autoimmune conditions and have managed to cut down from 3 cans a day to 1 a day.Last night I had the first pain free night since Christmas.It could just be a big coincidence, but I'm planning to be diet coke free from next week !!! It's addictive stuff but we don't realise it until we try to go without it !!!
Good luck.
Fudge13
There is no such thing as coincidence :)). Good for you. There is terrifying research out there about effects of cokes and aspartame (which is in other food and beverage stuff as well), glad you got there by yourself. It's a kind of addiction, be confident and determined, good luck.
yes,thanks for that. I'm trying hard to cut it out altogether. It is very addictive,but also very harmful.
Hi there, have you got a specific problem that you are trying to address? I think we are all different and react differently to foods. I am one of the lucky ones that doesn't have the itch, but I have had the start of it if I eat too much chocolate. I don't know if that is the fat or sugar but it definitely makes me itch when I overdose. I have also noticed in the past that if I eat too many carbs like pizza and chips or fish and chips, along with the fat (talking takeaway), I get an horrendous pain all down my right hand side and dont know what to do with myself. If I eat too many carbs I look 7 months pregnant and feel like I need to eat more. Also notice if I eat too many carbs that I get joint pain. I cant drink even a glass of wine, it makes me want to fall asleep instantly, but I seem to be ok with other alcohol like lager, port, sherry and even whisky, not that I drink very often. I think it is worth keeping a food diary of your normal eating habits and a list of symptons so you may be able to identify what effects you and in what way. Like I say, we are all different, I eat a salad every day for lunch and dont have a problem with raw vegetables. I have upped my protein as I have lowered my carbs and I definitely feel less fatigue.
That's interesting- I originally visited the doctor with pain and discomfort down my right hand side, but he said it was IBS (which I do have) but I didn't feel that was right. I am now keeping a strict food diary (I joined Bootsdiets.com) and have cut right down on my carbs and fats, but I'm still getting the itch. Last evening I didn't have my usual diet coke, and it is a bit better this morning, but I haven't had chocolate for a while, so I'm not blaming my best friend!!
I am the same as you with wine though- goes straight to my head,a and I have a theory that if the liver is compromised in any way it's probably best to avoid alcohol.
As you say we're all different, and let's hope with some care we can find a way of eating that helps .
Thankyou again for your experience- it all helps.
Having watched the Horizon program on 'fasting' (its been repeated twice now!), where the guy fasted for 2 days a week to lose a bit of weight and to help with all sorts of medical problems, I have taken up this regime. A woman must not have more than 500 cals on a fasting day and a man 600 cals, and you do 2 days a week (It can be any 2 days). I use Cambridge diet shakes for my 450 cals because they have all the nutrients included so that you don't get run down. Its worked for me to lose weight and get rid of the 'itch' and help with 'hot flushes' (age related!!). Plus I feel I'm letting my liver have a rest for 2 days!
Worth talking over with your consultant, maybe?
Not seen the Horizon prog on 'fasting' but personally I'm a bit unsure. I know for a fact that shortly after diagnose until about 6mths ago I had sort of down days where I'd not had a good night due to the itch and felt this PBC had chained me up so I did have the odd day (totalled 6 in 18mths) where I didn't eat anything.
I can positively say that the itch vanished for a few days despite eating again sensibly the following day. But for me, even eating very little (just prior to Christmas I had what was apparently that sickness (norovirus) bug and couldn't keep anything down in the day if I had had of tried. Only lasted 2 days and by the aft of 2nd day I was eating light and felt better), well I simply lose many pounds in weight and I'm not huge to start with (5 ft 2 inches tall and at present pan out around 8stone 12 to 9 stone 2 (on a good day)).
I think with a regime like fasting for a couple days and having PBC is you could perhaps be in danger of not getting enough nutrients if you are one whose system maybe finding it difficult to obtain enough vitamins and minerals (fat soluble vitamins spring to mind here, as well as Vits B and folate).
Is it also possible that this fasting could be good very short-term but notso for a longer period of time? Also I think perhaps it is worth thinking about how active one is (I'm very, feel hungry before noon even after having a decent breakfast, then find myself not feeling so by early evening).
Thanks for that. Do you get incredibly hungry though? Am seeing the doctor this afternoon- have not been referred as yet, but am planning a serious talk with doc today. I'm beginning to pick up lots of clues from the lovely people on this site.
Thanks again. Best wishes
Hello.
NO I don't get 'incredibly hugnry' but I know if I don't eat anything from breakfast until about 1p.m., I start to feel the tummy rumbles.
I don't tend to eat anything after tea of an evening and in the morning, if I have an early cup of tea, shortly after my stomach starts grumbling as it is empty and this dispels as soon as I have had breakfast. I find breakfast for me is the best time of day to eat.
I only just been diagnosed PBC but I've had the itch about 4 years but beening 64 I put that down age so I only use simple shower gel with moisteriser and then moisterise after shower it doesn't stop it but it eases it a lot for the past 12 months I have been slowly losing weight but still eating what I want (reason for blood test and finding PBC) I was made redundant last Aug doing nothing still losing weight been taking 1000mgs of urso since monday put on 1kg in 4 days it doesn't really answer you question but moisteriser might help the itch..
I find I can't fast at all, I have to eat my meals, I was always like this but even more so now. I am lucky in that I never took to fizzy drinks but so glad now as they contribute to osteoporosis too. I don't drink alcohol anymore, initially because I was on too many tablets including steroids and it's not recommended but now I have just got used to it and don`t need it. I try and be as low fat as possible (was always mindful of this) and generally don't have sickness or digestive problems, however, interestingly, like Peridot says I find too much fruit (& fibre) actually doesn't agree with me. Good luck! Like with the meds it's all about balance and most importantly balance with your own body so it's trial and error but we'll get there. You said something very true. You have to LIVE. We are all looking after ourselves for this very purpose. We have to have the best quality and enjoy life the best as we can when we are here
Well said Junolee- at least we are all doing our best for ourselves, and not expecting results without putting in some thought for 'us'. Thanks to everyone who has responded.
I hit the brick wall and went home from work last Monday as the itching / burning went off the scale. I was off work all week and decided to do some research. I have noticed every so often I eat and have abdominal pain and have to be near a bathroom so I decided to look up food allergy and I stumbled across Histamine Intolerence. I have also noticed if I was feeling unwell and hardly ate anything that the itching / burning was hardly there.
So what I thought was a healthy diet e.g. homemade spinach smoothies which obviously contained raw spinach, pineapple, banana, grapes, apple and ice and also eating strawberries and raspberries and fish ect I was actually eating foods that are high in histamine. There are also some foods that are low histamine but once eaten they cause high histamine levels.
Last week I started to detox my body and still got lots of detoxing to do. I also went to see a private dietician and emailed her my medical history, meds, symptoms and my theory re Histamine Intolerence. She did food allergy testing and airbourne testing to rule that out and I am glad to see that very little if anything showed up on these tests. I am now on an elimination diet, started Sunday and I am chuffed to say that I hardly had any itching / burning yesterday and I reduced sleeping medication and slept really well. I have taken myself off all meds apart from sleeping tablets and Westhroid / Levothyroxine for underactive thyroid. I have a wee bit of itching today but not really bothering me. I am eating lots of raw low histamine foods and only having one cooked meal in the evening. I have removed pork from my diet and reducing meat to once per week.
As I have underactive thyroid and PBC I am sure these two knock our systems for six and maybe my body is not producing enough diamine oxidase. I am also wondering if URSO is high in histamine and that is why it causes my body to itch and burn!!!! I had a quick read of Bear Fact and also noticed that another lady has mentioned that she has given up pork and meat.
What a difference a week makes!!
I hope you are well and getting some of the spring sunshine.
Sx
