Food to eat

[donsheray]

OK, I know to cut down on salt but is there any other foods I should or shouldn't eat? My Dr. left me twisting in the wind so far what I've learned about PBC I found online. Last month I had to go to the ER after throwing up blood I was in ICU for 3 days. I had an endoscopy done where 4 varcies were banded. Anyway, back to my question, What foods to eat and avoid???

[dianekjs]

Hi there. Well, obviously no alcohol, but I imagine you know that. In general, you should eat real, whole, fresh foods and avoid processed foods. Since the liver filters toxins from the body and it's function is now compromised, you should be avoiding potential toxins you put on or in your body. That means organic fruits and veggies when possible, grassfed/pastured meats if available, free-range eggs, seafood less likely to contain high levels of mercury, etc. Try to cut way down on sugar as well. Lots of healthy omega 3 fats, while avoiding trans-fat and commercially processed vegetable and seed oils. Many - possibly most - benefit from reducing or eliminating wheat as well. It sounds difficult but really isn't once you make the adjustment. FYI, most doctors won't tell you this, although growing numbers of rheumatologists are advising patients to cut gluten and sometimes dairy. Your nutrition is a huge part of your health, and one of the few aspects that you can control. It's well worth the effort to ensure you are as well nourished as possible. Good luck and try to stay as positive as possible - it helps!

[Mobetta2013 in reply to dianekjs]

Thanks for your opinion on what to avoid eating and what to aspire to eat. I'm only giving my opinion but... There is a program called Whole30. Promotes eating like you just described. When I am on the program I feel wonderful! When I dont I have intestinal issues, often in the middle of the night disrupting my sleep and leaving me lethargic. Whole30 promotes clean eating and is an awesome resource. Just google the name and read about it. They have book, audio book, newsletter, etc. It's worth your time to at least look into it. Good luck and stay well

[dianekjs in reply to Mobetta2013]

Hi Mobetta - yes! I'm familiar with Whole 30 and have the book "It Starts With Food" by the same folks that founded the Whole 30 program. I am not quite as strict as the 30-day elimination diet now, but follow many of the same guiding principles. I think it's a great way to isolate what may be causing issues. Thank you for your comment and I'm so glad you've found something that makes you feel great!

[Jojowen]

I find eating difficult sometimes and juicing has become the solution to this. If you juice you can get all the nutrients you need. It is fun to try new combinations of veg and fruit.

Hope you feel better soon,

j

[teddybear7]

Well I haven't been told to cut out salt. But I eat low fat low sugar no alcohol mainly because if I do that I can actually get up and do something in a morning.

[GrittyReads]

Hi,

So sorry to hear you've had so little advice from medics about food ... and presumably everything else as well, if what you say about searching online about PBC, means finding out everything about PBC online!!

So first, contact the PBC Foundation, if you have not done so already. They host this site on 'Health Unlocked' and there is a link to the PBC F site at the top of this page. Assuming you are in the UK, it's then easy to phone an advisor and get whatever info you want, as well as an informed, sympathetic listener. You can also try the British Liver Trust, and they can provide an informative DVD.

If you join the PBC F they will send you their fact folder, which is a mine of information, including stuff on diet, and is far more up to date than most things online (obviously you can read the site online too) . I would avoid much of what is online, as a lot of it is old, out-of-date and overly scary. Urso has made a lot of difference to improve peoples lives with PBC, and other advances are always being made.

I would follow some of the previous discussions on here, as you will soon find folk who are in a similar situation to you, and can ask them questions. One of the problems with PBC is that it is quite variable, so a lot of our personal experiences are very different. It might also help to say a little about your experience so far: symptoms, why you went to the medics, what tests and results etc. That way, fold with a similar experience can get back to you.

After a quick read of the above, I'd agree with most of what Diane says, although I find I get constipated on a completely gluten-free diet (despite adding loads of fruit and veg). I'm dubious about juicing as I prefer all the fibre - there have been some pieces questioning juicing. Also, you need to be sure your vits and minerals are good, and balanced - don't go mad on Vit D or whatever; a lot of these chemicals have to exist in a balanced feedback situation with each other, and some are harmful if taken to excess. I would ask to have a vit and mineral check - but I have no idea how easily different GPs etc will provide this: my GPs seems to be hog-tied by the 'red tape' of local hospital labs. Also exercise, watch your weight, get rest, and try to have fun. Look after yourself, the best way to beat this is to distress and live a full life.

Take care. G

[GrittyReads]

That should be 'de-stress' !!

Sorry!

[Hidden]

Hello donsheray.

Well I did ask the consultant when I went for my first hospital appointment as it was shown there was something amiss in the biliary system but at the time I hadn't got the diagnosis of PBC. (I had the antibodies check that day, was informed PBC 6wks later in Dec 2010.)

I was said to have a pretty normal looking liver and bile ducts quite clear when I went for the hospital appointment. I so far seem to just be stuck with the itching as well as the abnormal LFTs (that have slowly come down over the past 4yrs by being on urso). Fatigue left me long since.

Apparently we can eat anything with PBC, no special diet (though some in the very late stages of PBC are said to be advised to have a high protein diet). Some things to me are common sense (ie alcohol - I chose to not bother at all after my first abnormal LFTs early 2010. I just do not think about alcohol as I was never that bothered prior and it was more of a celebratory thing for me). I also try not to have any medications (been the norm with me for years) and so far so good, just urso.

You might find some say eat organic, all well and good if you can afford to do so. I can't afford to eat wholly organic. I do buy odd things as I know that with majority of them, you are buying certain foods with the guarantee that there are no additives in them. (I sometimes treat myself to a packet of Sainsburys organic digestive biscuits for instance.) Interestingly enough I've always had an interest in food and quality of it over the years and have always tried to steer clear of certain things (MSG and artificial sweeteners for two). I've been watching a programme on UK tv called "Food Unwrapped" for a few years now and it can be pretty surprising to find out that certain things one might find to be a nasty additive is in fact nothing of a major dilemma.

I prefer to eat foods that I prepare myself and if buying something to add out of a jar for instance, I can check the ingredients. I find a lot of the more traditional foods seem less troublesome along with certain foods that are quick and easy to prepare. At the moment my husband and I are going through a bit of a stir-fry phase. I use various vegetable mixes for variety and usually put some cubed fresh chicken pieces into a pan with a teaspoon of cooking oil (I tend to buy the rapeseed) and brown. I then add the vegetables with bean sprouts and then when that has cooked in several minutes, I just sprinkle a tiny amount of freshly ground Himalayan rock salt over, nothing else. We both find it a pretty simple but tasty and nutritious meal. I also buy a packet of prawn crackers which I've seen the ingredients in to serve with.

Interestingly my brother and I were discussing food when he had his evening meal here yesterday, he reads certain things and he was saying about gluten-free. I've tried a bit of gluten-free myself in the last few years as my adult son when still living at home had a bti of a bowel problem thought to be caused by over-use of antibiotics when he saw a hospital consultant. He was advised to steer clear of wheat for awhile and over time he has got back to normality. I bought certain things like gluten-free flour and baked with that for awhile but over time I have gone back to my usual. I personally don't think eating gluten-free makes much of a difference and as my brother was saying last night, majority of pre-prepared and processed gluten-free products are much much higher in sugar content. I think in having PBC and the liver having to deal with sugar (stored as glycogen I think that is right to say), perhaps a bit of a cut down on products with processed sugars might be a good idea now. It was interesting to find out that one of my brother's old school pals who he still sees regularly and who was diagnosed with Coeliac Disease over a decade ago now doesn't buy any gluten-free foods. He knows what is deemed gluten-free and will just opt to eat those and he seems to be managing quite adequately. Corn and rice for eg are gluten-free. I know when I did adapt a more gluten-free diet my bloods showed no difference in readings at that particular time (as I seem to have been following a pattern over the last few years with my bloods, part of year they go up a bit and then another they drop).

Knowing that bile is required for the breaking up of fats mainly I try to go with the routine that less fat is better for myself. We have to have some fat in the diet to absorb certain fat-soluble vitamins like A, D & K for eg. I choose to not eat any take-aways or fast foods myself, I was never that bothered pre-PBC diagnosis. I only eat the odd fish and chips for eg if I am holidaying.

Eating little and often is a good thing apparently in PBC. I could go with this but I then have my own theory that the more we eat at intervals the more bile is required as our gallbladder tends to empty when we have eaten. I do connect bile with the itch and to me think the more bile we require for digestion the more used bile there is in the bloodstream that to me equals that bit more of an itch as I go up and down at night itching, some nights it is less prevalent than others.

[dianekjs in reply to Hidden]

Hi, I do think it's important to differentiate a true gluten-free diet as part of a healthy nutrition plan that emphasizes real, whole foods, from a pseudo gluten-free diet that seeks to replace foods containing gluten with commercially processed, packaged substitutes - which misses the point entirely by merely swapping one problem (for many folks) for another. Commercial food manufacturers seized upon a huge marketing opportunity and flooded supermarket shelves with new products boasting gluten free equivalents of the traditional dietary staples and favorites that people trying to make the switch have a hard time giving up. The problem is that the majority of these new products are more often than not loaded with questionable ingredients and often just replace one problem with several different ones. They're convenience foods of a different color. Eliminating gluten containing foods for many of us doesn't mean reaching for a box of gluten free pasta to replace conventional pasta - it means using spaghetti squash or zucchini noodles and topping with shrimp in olive oil and garlic sauce or a savory meat sauce (as one example) . Your brother is absolutely correct that these supermarket stand-ins are high in sugar - and chemicals, starches, and stabilizers. I respect that gluten may not seem to make a difference for you, but it does for many of us - and has been implicated in many studies as a facilitator of autoimmune processes. I think everyone battling these diseases needs to experiment and find what they seem to do best on. We're all different, and there's not only one right way. All the best.

[Hidden in reply to dianekjs]

I think with all the theories and information out there particularly in the media it gets all confusing at times. One year we are said not to have this to eat, another that and nowadays it seems that things deemed bad are good and vice-versa.

I don't think anyone needs to be on a gluten-free diet unless it is absolutely necessary.

After all, going back a bit in time, my late gran for eg (who was born 115yrs ago) was raised with gluten-containing products, flour mainly from wheat.

I do think that when we are born and the time comes for weaning our system starts to tolerate what foods are available and we adapt. I find certain fast foods that I rarely consume something that just does not appeal to me nor make me feel good eating but the younger generation now (I am 51 next month) they seem to consume it frequently, more than likely because that is what they have known.

At present in the UK there is an interesting programme that started this week on the BBC2 channel all about decades of how we lived, in particular what we ate. The first programme that I watched was about the 1950s and it started when rationing of food was still around but later that decade food was no longer in very short supply and things started to change. It was interesting to find out that frozen fish fingers by a brand that I and I expect a lot on this site grew up with came into being in the later 1950s. I always thought they were more a late 1960s creation.

[Junolee]

Yeah. I think eat what suits you and don't eat what you find hard to tolerate. When I was first diagnosed I went all out to be so good, clean wholesome food etc as the years went by I have fallen off this slightly and have a few treats and even the very odd glass of wine. My liver functioning blood results have gotten better and better which suggests to me it's the meds rather than the diet. I tend towards a low fat/little meat diet (which causes me low iron) and at ideal weight for me so don't want to give impression that you can over do it with no consequence but having seen dietitian and with GP and consultant saying to eat what suits I think sometimes we can be a bit precious about this aspect of things. Will say though I have been told categorically by all 3 definitely not to cut gluten unless diagnosed with coelic disease, which I've been tested for lots of times due to anemia. I do know people feel better without it but it doesn't appear to affect me.

[Hidden in reply to Junolee]

Me neither Junolee.

I did ask before I was diagnosed with PBC late 2010 when I had my first hospital consultant appointment, the day he said he was doing some antibodies checks, should I change anything dietary.

He just said there is no need to, and added, 'the liver loves calories'.

I just think from a personal point of view that continuing a diet already established that to me wasn't full of junk food, high fat, etc prior to being PBC diagnosed I just try to cut back a bti mroe on any fat intake. For me I don't think I've had any problems since being diagnosed with what I eat. The itch hasn't really changed considerably although the rare occasion I don't tend to feel very itchy I think that day I've possibly managed to have a good balance of bile to what has been consumed as that is my only theory there but I think with certain things of PBC seems with the itch and probably fatigue in particular, there doesn't seem to be much of a definitive pattern. I know I itch at night but I never know how it will be.

My liver function tests over the last 4yrs since taking urso have got better and better though it has been on a steady scale as certain times in the year they come out with a little drop or a little higher than previously but it seems to be working out that is the norm in my case.