I'm curious about your appetite. Does anyone experience having 'no appetite' and if so, what do you do to encourage food intake?

[JennerLayne]

For the past two years or so, I've had a very low appetite and don't always eat meals, as I should. I've heard that with PBC it's better to eat small meals throughout the day to help support better digestion. Even so, there are many days when I don't have enough caloric intake to support my output of energy ---- driving me to feel more fatigued than I already am. I worry that although I am on vitamin supplements, I'm not getting enough nourishment and noticed my skin is getting dull and my hair is starting to fall out in chunks. Just a note: my Gastro postponed starting meds at the time of DX due to a suggested move to a Gluten Free diet (which has helped immensely and caused a 35 lb. loss). He anticipates I will start meds in Sept when the change in my weight levels out. So, it isn't the introduction of new meds causing my lack of appetite. Thanks for your tips on stimulating appetite or ideas on how to increase food intake. I'm currently eating about 1,000 or less calories per day and just don't feel hungry at all.

[Hidden]

I do find I don't feel like eating but often try something small and sweet (like a few raisins) and then very shortly afterwards feel hungry. I saw a good dietician (western registered but holistic, worked in a new york hospital liver unit for 1 year) who said eat at these times: morning (for me around 7.45am) 10.30am, 12.30 - meal at each of these with some protein -2.30 snack of dried fruit, 5pm soup, 7pm evening meal, 10pm bedtime snack. Yes, that often. smaller meals than normal. It really helps. I also realised I wasn't eating enough protein and that really makes a difference. Eggwhite omelettes in the morning (no fat). Oil fish three times a week, eggs 3 times a week lots of greens every day. If you are eating mainly carbs you will be getting tired. I've just had a couple of days with no protein (except nuts) and feel rubbish. I can do exercise, sometimes vigorous like playing tennis, but have to up how much I eat because of the low fat diet. You have to eat 4 x the amount of carbs to get the same amount of calories as in fat. Oh, and eat good fats. Walnuts, almonds, olive oil etc. Not eating can be self-fulfilling, self-punishing even. Food can still be fun - add flavour with lots of herbs, make a curry but use water to cook the onions, buy some really tasty sourdough bread and have some smoked salmon on it. Enjoy!

[sistergoldenhair in reply to Hidden]

Hi, Although I don't eat timely like Twotulips, I do eat 3-4 small meals, and then snack on fresh fruit and veggies, sometimes a chunk of cheese or pickle. I was told protein is very important so your muscles stay stronger and don't atrophy as mine were starting to do. The fiber helps keep everything moving..............and lots of water! I am not saying I don't ever have a treat, popsicles are probably my weak point but only a certain kind:/..........When I go through days I don't want to even put food in my mouth, I try to start with a little oatmeal or piece of toast with peanut butter. I also make smoothies once in awhile with whey protein powder, or just mix it with oj. Thoughts and prayers, cyndy

[Lynne-k-g in reply to Hidden]

I don't have much of an appetite my doctor has prescribed me ensure plus, which is a flavoured milk like drink, it contains all the nutrition you need for the day, I eat as and when I feel like it hope this is of some help

[Val02]

Hi - I have Complan or something similar when I don't want to eat - it helps. You could also try making smoothies you may find you can drink them.

[Hidden]

Hello JennerLayne.

Well I find myself that I can eat and eat during the day up until around 5p.m. and then I often do not feel like evening meal. I go as the saying, "Breakfast like a King, Lunch like a Queen and Dinner like a Pauper". I've found for many years in fact that I tend to feel at my hungriest morning and early afternoon. This hit me when I reached my mid-30's and I am now not far off 50.

I think myself that some days I do not eat enough for my output either but I try not to think about it. I keep wondering and wondering about PBC at times, trying things since diagnose 2010 and I've sort of worked out a few things as I have gone along. (The one I cannot crack to try to rid is the itching at night.)

I know that when I get up of a morning I am not itching and feel normal, it is as the day progresses to evening meal time I start feeling that mild prickly sensation and I know it is due to the digestion process all those hours on (it's said 8hrs for food to actually process properly into the system). I seem to think that perhaps in PBC the body is telling one to start easing off . I've found myself that if I eat later evening I sometimes do feel the itching that bit more and odd times it has been more prolonged as in I normally cease itching around 5a.m. but eat later at night and I have a time or two got up in the morning still feeling the itch for awhile.

Myself I feel far better not eating huge meals and I adjust accordingly, if I don't feel like much evening meal, I don't put much out. I then have a small snack couple hours after eating to 'tide myself over' as I have been known to be awake during the night and itching and then start to feel empty and tummy rumbling.

I do reckon it is far better concentrating on quality of food as opposed to actually bothering about quantity. I did lose a bit of weight 2009 and during 2010 but nothing significant. My weight has remained steady for the last yr now, normally hover on the 9 stone mark, ups slightly at the female time of month and then drops back to what I am.

I know I've never tested deficient in any vitamins and mineral except was on the line for Vit D couple years ago but managed to utilise the sun more and on recheck was perfectly fine. My ferritin level has been just under the normal level but it has been testing the same now for some time so again with PBC it has now been considered by other blood readings that it is within a normal range for one with PBC.

I think if you are concerned about deficiencies and know yourself you seem to be suffering with regards to not eating as you yourself consider normal then it would be wise to seek medical advice.

Meanwhile you could try to add things like milk drinks for eg to your daily diet and I take mixed dried fruit and mixed nuts of the non-salted variety when I go out for walks at weekend to give a calorie boost. Bananas are also a favourite of mine and if I do feel like a snack if hungry later afternoon, I will think nothing of grabbing a cereal with a bit of milk of the non-sugar type normally.

[Firefly33]

At my initial consult with my liver specialist, one of the first questions she asked me was "How is your appetite?" I thought it a bit unusual. But I told I had had no appetite for years. I don't get hungry OR thirsty...ever. It's an effort to do either, but my sweet hubby encourages me to drink my fluids numerous times each day. Dr. said no appetite is a very common symptom of people w/ pbc.

I have to watch the clock and cook food for family members who have normal hunger pains though. Lol! So I eat when they do, because I get weak and more tired if I don't. Btw, my nutritionist had me cut out red meat (eat a lot of chicken and some fish) & caffeine, and was already eating gluten-free prior to pbc diagnosis Oct. 2012. Weight loss? Nope. I wish for that!

[Junolee]

Oh I could eat for ever I have been on steroids for the past year, down now to 2.5mg so am hoping my appetite won't be quite so big. Having said that I have put on little weight, couple of lbs here and there at holiday times that I quickly lose. I eat mainly low fat, lots of fish, fruit and veg, eggs once a week and red meat every couple of weeks (never did before but need to keep my iron up). Do have some treats but often have to stop for a few days as I get that liver pain that I think suggests working overtime to process. I drink lots of water, no fizzy or alcohol but love my coffee, green and herbal teas.

[korrie]

My mother has pbc. For the past 2 years she has lost a lot of weight. She goes days without eating. Her liver doc says it has nothing to do with pbc. We are perplexed. When she does eat its just once a day. She does drink the Ensure shakes as well as milk shakes. We have told her to eat smaller meals. The smell of food or even just looking at it makes her lose her appetite.