I know low salt, carbs, etc. But it doesn't matter what I eat or how much, I am genuinely miserable after a meal. I do have a hiatal hernia so eating has always been an issue. Any suggestions would be greatly appreciated.
I cannot seem to get my diet down to where ... - PBC Foundation
I cannot seem to get my diet down to where I am at least comfortable after a meal
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PBC2012
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PBC2012
Great question! I am right there with you. I am to the point that I think I would rather have hunger pains than deal with the misery that comes with eating.
I had to decline an invitation to a graduation party tomorrow because of this very issue. Another reason I feel alone and isolated.
I understand totally. My fiance keeps wanting to go out for a nice dinner and movie ....well the money spent on dinner would be a waste and I would never make it through a movie. It's frustrating how the simple things are now the complicated things. Him and I use to love watching shows like Hells Kitchen, Masterchef and other cooking competition shows together....now I am lucky if I make it up past 8 pm. I never ever thought my life could change so dramatically so quickly
Im right there with ya as well....I get so embarrassed because of the bloating and other unplesent things after eating. I don't have an appetite as such but know I have to eat. I have been invited out for dinner as my birthday is near, but don't feel I could go.....which leaves me feeling very isolated..
I am also nevr later than 9pm for going to bed because I cannot stay awake past that time....like PBC2012 I nevr thought my life could change so much so quickly either.
Low fat....Low salt.....now I was not told about this by my consultant so have been eating normally/vegetarian...may be I should try this...am just fed up of digestion issues. I do have gallstones which am waiting for surgery to remove, but this should not cause the issue of no appetite and..nasty, embarrassing digestion trouble.
xxconniefused
I asked my GP what I should eat and was just told to eat what I want and carry on as normal, but I also sometimes think I would be better off not eating as I feel dreadful after any food, even the mention of food sometimes makes me feel sick, hubby will sometimes ask half way through the day what would you like for dinner........well nothing really so go away, but I have to eat to keep him happy. my stomach is starting up even now and I am only talking about it.
the PBC COMPENDIUM by the PBC Foundation. Good tips on HOW to eat also, not only WHAT. Make your meals appealing, savoury, by decorating it or mixing stuff, natural spices (for ex Tumeric, is a spice AND a natural remedy found useful by some with PBC, for the itch) etc. It's all in the eyes, some say.
5 meals a day - small ones, not wedding-type meals.
chew well, enjoy every bite.
get treats of fruits and vegetables
add honey instead of sugar, whenever you really need it, etc.
That sounds wonderful, Cristina. I have also heard that 5 small meals will also help one lose weight. ?? -
Foundation question - How does one on this side of the pond get such information. Do you know if there is a "leg" of the Foundation over here that would send us "stuff"? -
I feel the same - really id like to stop eating it just makes me feel ill, but i eat because i know i should but its such a struggle. Id really like to know some food stuffs that are PBC friendly and dont leave me in misery, and i dont mean the general advice as I already follow that and it hasnt helped!
I dont have this problem at all. I seem to be able to eat what i want when I want. i just dont eat too much too late at night or get the awful acid reflux.
The only eating problem I get is that my mouth and tongue get ulsers, sores and abscesses on a regular basis which means eating hurts.
It seems to me that so much is still unknown about PBC. I haven't even been to see my specialists yet so you can imagine the questions I will have! There are many days I would rather not eat at all but I am also diabetic so I have to eat. The other thing is I feel and, in the mirror in my mind, look like I could be pregnant from the bloating! Not a plesant sight or feeling. I am just happy to know I am not imagining all these different things ...thanks everyone for letting me know I'm not alone, even with the very unpleasant stuff!
I don't have the 'loss of appetite' issue, but I do have to watch what I eat or else I pay for it with acid reflux.
I do identify with the early to bed people - I am usually dozing on the lounge from about 6pm onwards - I try to stay awake until I go to bed around 9.30pm (hard ask most nights) - the flip side of this though, is I wake up around 4am and because I can't just lay there I get up........ Bit of a 'catch 22' 'early to bed early to rise' and it makes for a very tired girl during the day. (
I dont have a loss off appitite, did at first but i find when i have eaten my meals i usually have to be sick afterwise as i dont seen to be able to digest it afterwards and find it really uncomfortable as if its just stuck in my stomach.xx
I used to have horrible pains in my "gut" after eating - almost like labor pains (if I can remember that far back). My PC (I believe that is about the same as a GP) put me on Ranitidine for GERD and it has helped tremendously. Not that I don't get an occassional "OOOOO" lol but it is more rare. We will see what happens after the GB comes out Thursday.
On bad days I drink Ensure and other liquid nutritional drinks.
That might be an option ....I am also diabetic so I will have to check with my regular physician ....thanks!
I have learned that I feel best when I follow a Clean Eating Plan and at 60% carb and 40% protein rule. If I eat high fat and or sugar for example cake with icing I get bloat and diarrhea while running.
I have learned that I feel best when I follow a Clean Eating Plan and at 60% carb and 40% protein rule. If I eat high fat and or sugar for example cake with icing I get bloat and diarrhea while running.
It is difficult to follow clean eating but it really is worth it. I feel better; have more energy and very little bloating. This takes planning ahead for everything and my husband is good at helping me out.
I also eat smaller amounts and at least 5 times a day. When I follow this, I feel the best but will admit that I still get very tired in the evening after work is difficult for me to get anything done. I just want to crash on the couch by about 6 PM
have any of you been tested for Coeliac - a simple blood test in the UK? it has not solved all the dietary issues but has helped a bit - lactose intolerance can be a problem re the OOOO problem !!! I too have a hiatus hernia and take esomeprazole which helps massively - before I was diagnosed coeliac and Pbc I used to say I felt at my best if I ate nothing at all!!
I was just recently diagnosed with PBC but have had weird digestion since last summer that's when my fatigue started as well. Yes I do agree it can get VERY uncomfortable. I think every person is different... since being diagnosed I used every meal as an experiment. found things that upset me and things that can take that OOOOO feeling away. (I don't eat out and record everything that goes into the dish then wrote at the end of it how I felt at the end of the meal.) for me its the Protein. in the last 2 weeks I have cut chicken, Pork and red meats out of my diet and started feeling better, obviously still get the occasional upset stomach. I also found out that a bit of Rice or Rice noodle help ease upset feeling. although it seems seafood does agree with me, Thank goodness, my family is from the Northwest Coast of BC giving up seafood would of sucked!!!
PBC2012 Are you eating several small meals or three larger ones? Vegetable carbs are good, just stay away from the sugary stuff and the salty stuff, they both make me uncomfortable, especially the salt. As soon as I have too much, my liver hurts. What sort of protein are you eating, lean chicken or heavily saturated red meats? You might try some vegetable proteins for awhile to give your liver a rest. I have some wonderful recipes using lentils and beans. Try getting an Indian cookbook. My husband is from India and vegetable protein need not be bland/boring/tasteless. Actually, if I could choose only one food to eat for the rest of my life, it would be Dal, made with lentils, and eaten over brown rice. Anyway, some thoughts. Experiment a little and get back to us. I would think just eating smaller meals for awhile is going to be your best bet. Give your liver a rest.
I hear a lot of you have a hiatal hernia. I had one too. It was a real problem. I had to watch what I ate, when I ate it and make sure I didn't eat before going to bed or laying down. After I discovered I had varices (hemoroids in my esaphogus) due to portal hypertension associated with PBC, I decided to start sleeping sitting up because I couldn't stand the thought of coughing up blood in the wee hours of the morning when I was told a bleeding issue often happens. I've been sleeping sitting up for a few years, now, and I swear I don't have a hiatal hernia anymore. I can lie down, now, and sleep the whole night without a problem if I wanted to (have done so, actually) but I'm so used to sleeping sitting up in a Lazy Boy reclining stuffed chair that I actually prefer sleeping this way, now. All I can tell you is that I know I had a hiatal hernia and, as far as I'm concerned, now I no longer have one. I don't have the xrays to prove it but I don't hurt any more and that's the whole point, isn't it?
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