Nutrition suggestions

[DonnaBoll]

The question of nutrition or a "PBC diet' comes up periodically, often from newly diagnosed patients. Maybe if you could just post here what dietary changes you've made that you found helpful - or even not helpful - someone may be helped by that as well. Sharing experiences can make life easier learning from others. Thanks for sharing here.

[PBCRobert Partner]

m.youtube.com/playlist?list... is the presentation from the PBC Patient Conference fro. Prof. Bernadette Moore on diet and PBC.

[Wocket in reply to PBCRobert]

says the page isn’t available

[DonnaBoll Administrator in reply to Wocket]

it did come up for me ??? not sure what happened.... wasn't there another link you had to click on?

[Wocket in reply to DonnaBoll]

Doesn’t work for me. Maybe it’s because I’m using an iPad

[butterflyEi]

I only have red meat maybe twice in a month, I find the following day I feel sluggish. Apart from that I mainly have a plant based diet and avoid ready prepared supermarket foods. I am lucky to have retired and have the time to spend making my own foods from scratch so I always know what has gone into the meal.

[DonnaBoll Administrator in reply to butterflyEi]

thanks for sharing.. good for you for making your own food. I don't even like to cook! Prepared foods or processed foods definitely are not healthy.. often it's the salt content for one thing. Just eating healthy is such a large part of caring for ourselves with PBC.

[Wocket in reply to butterflyEi]

I tried a plant based diet but I put on weight because of the nuts and beans. I have always been a vegetarian so I’m back to that. I am also only eating 800 cal a day because I need to lose weight as I also have a fatty liver 😭

[Sister65]

I find that a mainly plant based diet makes me feel better as does intermittent fasting. I try to only eat between 11 am and 7 pm, but sometimes social commitments make that impossible so I am not too rigid about it. But I feel best when I'm consistent.

[DonnaBoll Administrator in reply to Sister65]

I have so many positive articles about intermittent fasting... was it hard for you to get used to at all?

[ortam]

I’ve noticed when I follow intermittent fasting with a healthy low carb my Alp numbers always seem to be the lowest.

I’m never in normal range but not high enough to add additional meds according to my Hepatologist.

[DonnaBoll Administrator in reply to ortam]

most of us are never in the normal range on the lab results.... important thing is that is fairly consistent and your doctor is satisfied with what they are. Right now I am trying to stay on a low carb eating plan as well.

[Sister65]

The hardest thing for me with regard to intermittent fasting was leaving cream out of my morning coffee, but I got used to it. Best thing was how I felt. The first 4 to 5 days, I constantly felt like I wouldn't be able to do it but then I felt so much better, it was easy. Great effect on sleep.

[DonnaBoll Administrator in reply to Sister65]

I use creamer for sure too. If it makes me a better sleeper then I might seriously consider it. If there a list of food that you don't eat... since you mentioned the creamer. Maybe because you weren't eating in the morning, I guess.

[Sister65]

I am not a breakfast eater so I just had to go to black coffee. Took some adjustment but now I actually like it better. If someone really likes breakfast, they would pic a different eating window which includes breakfast. There is a book called Fast, Feast, Repeat or Feast, Fast, Repeat, I can't remember which but I found it really helpful in figuring out what I wanted to do. Author makes no medical claims and it is very straightforward. I recently started leaning more vegetarian/pescetarian but not for heath, more for ethics

[DonnaBoll Administrator in reply to Sister65]

Thanks! I'll check it out. Sometimes I think I eat breakfast just out of habit- not sure I'm really hungry

[CeeCee101]

last year due to some digestive issues my gastro put me on Low Fodmap test diet. Def found out my triggers. Don’t ever do this unsupervised. Now since I was Dx with overlap rheumatoid arthritis cut out sugar and lower salt as on low dose prednisone. Not easy but can have small amount of 85% dark chocolate and that helped get over the cravings. However feel WAY better not having sugary stuff. Also mostly Mediterranean diet. Gluten free, dairy free but love almond milk. Was going to try the autoimmune protocol diet but WAY too restrictive.

[DonnaBoll Administrator in reply to CeeCee101]

Not familiar with Low Fodmap - can you explain it a bit for me?

[CeeCee101 in reply to DonnaBoll]

It’s complicated! A good internet search will help. It’s an elimination diet. Then add back in.

[DonnaBoll Administrator in reply to CeeCee101]

will check it out.. thanks!

[Beatrice110924]

My PBC has worsened over the last few months and I told my Gastro that I can't do any more as far as excersise and diet are concerned because I'm very disciplined.He told me that PBC was not controlled by what you eat, obviously within reason.

He said you have to live so not to worry too much about it ??