Diet and PBC..is there a link?

So... When i was first diagnosed last year my parents went hardcore on me regarding my lifestyle and diet. I became a vegan ( which is shocking because i am greek which means all i know is meat) and i slowed down majorily with socialising with mates( which meant if i was going out in the week my weekends were my rest bite and vice versa). When i made these changes my stats got better and my energy levels grew, itching more or less stopped and i lost weight ( i was never big but felt a bit more healthy etc).

Long story short i went back to work and my eating got lazy... No more smoothies or loads of veg but i kept to the vegan way. I went out or over worked myself... Recently everything has got worse again! Itching is at its worse.. My stats are terrible and my arse has definitely gotten bigger.

So i figured i need to go back to before and be strict again. But the hard part is i dont have the momentum to keep it up. Not to mention how annoyed i am with the fact that i am turning 29 and i have to deal with this crap. I should be living my life and not worrying that if i eat something overly sweet or meat that i am going to be up half the night itching. Does anyone else feel the same? That food and pbc are closely linked particularly with itching? I was thinking to create a food diary and monitor the level of itching to see the links... What is everyones thoughts on this? Do you see links??? Let me know. Thanks guys!

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  • Hi! I totally hear you! I was diagnosed earlier this year. I just turned 35 and have a 3 year old. I have done a lot of research on food, leaky gut, etc. When I was first diagnosed, I went on the AIP diet and my labs normalized in less than 6 weeks. I know it was the diet for sure. I recently moved so its been stressful and my diet hasn't been as clean. I just had repeat labs done that were elevated. Part of it I used as an experiment to see how my labs would be. Some people will tell you diet has nothing to do with PBC but it most certainly does and affects our bodies as a whole. I am going back to my clean eating routine, and although it sucks at times, I have enjoyed eating healthy foods and I feel great. I am thankful. If it keeps me from advancing this disease, I am going to do it, because I have a beautiful little boy and an amazing husband to live for! Do the best you can, eat well when you can and make it simple so its not so overwhelming.

  • Can you tell me what your actual diet involves?? To eat meat or not to eat meat... That is the question :(

  • Its a hard thing to answer. Meat is harder for the liver to process, especially red meat. I am not a big meat eater anyways, so it hasn't been hard to give up. I occasionally will eat wild caught salmon and some other fish. I would say if you do eat meat, try scaling back your amount and choose healthier meats. Like grass fed meat and organic. Supplement the difference with fresh veggies. Trust me, I know this all sucks. I am still trying to process it myself and wrap my head around the "why me" aspect, but its teaching me to live life in a much happier way. There is no guarantee for any of us in life. I take comfort knowing that each day is a blessing. I am choosing to eat a primarily mostly vegan diet filled with as much organic veggies as possible. It's my way of feeling like I am doing something about it. For breakfast I eat a cashew yogurt and put in strawberries, almonds, and some other things. For lunch and dinner I have salads, potatoes, sweet potatoes, I juice, make smoothies, etc. I honestly crave carrots and hummus on a regular basis now. Sweets are my downfall but I am working on it! LOL. I am not saying my diet is right for everyone, but its what I feel I have to do for myself.

  • I also consume liver friendly foods. I eat raw garlic, grapefruit, etc. I start my day with lemon water instead of coffee now. I am trying to tailor my diet to find what works for me and what I can maintain, so it doesn't feel like a chore.

  • I thought AIP diet has to eliminate grains, seeds, legumes, sugar, dairy and night shade. It sounds like you tolerate nuts and potatoes(a nightshade).

    Did your AMA M2 go back to normal? Are you still on Urso?

    Thanks,

    Jane

  • Hi Jane,

    Yes I did eliminate all of those foods for a month after I was diagnosed. I did start to reintroduce other foods after that. I was reading a lot about people having issues on a strict AIP diet long term, so I decided to try to add other foods in that didn't bother me. My AMA did drop significantly but I haven't had it checked again. Yes I am still on URSO.

  • Thank you for the quick response. I think I should try AIP again for a little while.

  • None veg can be a healthy diet if we choose the right kind of meat products. it is also recommended for liver diseases. meat based amino acid is better and faster to regenerate dead cells in liver cells..plant based energy helps reduce pbc fatigue no doubt and good for digestion as well..

    My food vs pbc in 3 years:

    Before I was told I have a reactive hypoglycemia due to pbc, I used to eat all kinds of things tho most of the time very healthy and my enzymes were normal alp 96 ast 30 and alt 58

    December 2016 one month vacation when I drink alcohol everyday for a month my alp 115 ast 32 and 60

    After March 2017 I follow diet for reactive hypoglycemia and still drink 4 beers every week and my alp 90 ast 29 and alt 48

    In conclusion, I didn't find lot differences but fatty food, sugary food and alcohol no doubt effect liver function.So,i won't recommend hard liquor, sugary food and too much fatty food and rest everything in moderation won't harm πŸ‘πŸΌπŸ‘πŸΌ

    One thing keep we have to keep in mind is we all are effected different ways by pbc!!!

    You are only 29 enjoy don't let pbc run over your life..I'm 39 male and still think I'm young 😁

    Good luck

  • πŸ‘

  • I am beginning to get my healthy, good for the liver list organized. I do eat one avocado each day at lunch, healthy fat for liver. I researched liver friendly foods. Found a helpful site listing the foods & it tells how these foods help the liver. 😊

  • I just lost 5 lb in 2 months..Eating lean meat, green vegetables and legumes!

  • I have always eaten a lot of veggies. I bake most all meat. My downfall is sweets. I don't overdo but love my desserts. I'll get it together. I love cherries πŸ’. I do know which fruits to avoid. Quiet an eye opening experience

  • Anything high in sugar.. I used to eat one banana , one apple, one plum or peach and seasonal fruits every day until I was diagnosed with reactive hypoglycemia not any more...my suggestion avoid or minimize sugary fruits..

    these days I eat fruits after checking their sugar contain.. mostly strawberries,raspberries, blackberries, kiwi!

  • Yep! I have the list of which are ok & which are not. πŸ‘πŸ˜Š

  • And I love chicken...husband won't touch it. If it were just me, I could be a health nut. But can't expect everyone else to sacrifice what they love. Makes it a little bit of a challenge, but it's all good😎

  • Hi xXxAndzxXx,

    From my experience, diet has a lot to do with it. I was told by a naturopath that one can turn autoimmune disease around through a good diet.

    I've also read a lot, and watched a lot of videos on the subject and there's always ones who give their testimonials about curing their autoimmune disease through a strict but healthy diet. And I do mean radical changes. No gluten, dairy, unhealthy fats, processed foods, carbs, simple sugars and even lean meats. It's not an easy switch.

    For 8 months I was strict. I mean "scared- straight strict." Spinach-beetroot smoothies twice a day, and I cut out ALL of the stuff I mentioned above. Plus I ate low sodium and followed a diet like I was in a later stage of PBC. (I was DX early stage)

    I felt normal again. I lost over 70 lbs. too. My labs looked much better. My alk phos fluctuated between 130-170, my AMA-M2 came down to 42 from 87. Every other LFT was in normal range. ⚑⚑That's when family came to visit. They were here for a month. I cooked and cooked... (I love to cook, eat, and entertain) anyway, I ate waaaaay off my strict plan. It's been almost 3 months of cheating. And after they left I haven't been back on track like I thought I would. It's been super hard! 😳

    This Monday I have my 6 month ultrasound and more labs. For the last month my upper right side has ached ever so often, and my muscles ache/burn at night, not to mention I am again experiencing low grade fever/flushing like when I was first diagnosed last year. Ugh! It's my own fault.

    So, I am a firm believer that diet can have a big effect on our AI's for sure. Man, I dread Monday... I sure hope they don't weigh me. πŸ˜•

    I know exactly what I need to do. I have to get my head around it and start doing it again. πŸ‘

    Stella❀

  • I guess we need to do it... Be strict because i am too young to have this illness hold me back.

    I am not much of a cook ( i dont really enjoy it) but i have been researching some good healthy chefs and maybe a class i can attend to spark an interest.

    Do you know any good meals?? Greek food is simple...meat and salad so this whole thing is a shock to me because i cant honestly eat just salad its so boring.

    Also, i have noticed that carbs are the worst.. I get so crazy hot at night when i have carbs for dinner...i.e. Pasta etc.

    Does anyone else get that way? Overly hot at night where literally to the touch you feel like you are on fire??

  • From what I've read, white meat, fish, veggies & some fruits. If you will google liver friendly foods, you will find a wealth of information & all the foods your liver likesπŸ‘ the link I kept is Liver Doctor.

  • I read recently that most nuts and sunflower seeds have too much copper in them.Very bad for the liver. We need a tiny ammount of copper in our bodies. Shame i have emjoyed them as acpart of a healthy diet for years! Except hazelnuts -not as bad.

    Interestingly as i understand it, the copper IUD contraceptive is designed to leak copper into the body as a contraceptive over many years. Just before my PBC dx. I had my coil removed surgically as it had moved and got embedded in my uterus...

  • And I love peanuts, almonds, cashews. Had read sunflower seeds were healthy for the liver. Glad you shared that bit of info. I'm still figuring out my diet☹️lol! 😊

  • Hi Gwillistexas

    sorry so slow to get back to you. I hope the diet is getting clearer. I think while it makes sense that there are general damaging foods that affect us all, it's probably also true that as we are all so different -there isn't really an obvious 'type ' of individual that's prone to PBC from what I know- we have to keep in mind the balance our own body needs to maintain health with respect of course to the dietry restrictions of our condition .From reading here and else where we share similarities - recognisable symptoms as markers of PBC but then again so many differences too. I am finding that (on the whole) clean simple foods that don't demand too much of my bile ducts and liver, plus the Urso medication that for now is working have really improved my blood tests results. I also am well aware a) so far so good - I am lucky!; and b) this could all got pearshaped no matter what I do.This is the uncertainty we live with. I think anything that seems to delay the progress if the disease is worth going with. I eat little meat am 80% vege, still indulge in a little sweetness, exercise by walking miles and staying active . I think mentally and emotionally it's important to work at and improve what's needed there if you do to support yourself. Be ready to try new things if it feels right. Staying positive will not always be easy. Fear and anxiety will come and go .But we are not our disease. we manage it as best we can. My take on it all. Believe me i have been so in shock and in such a dark frame of mind about this whole thing.As I suspect many of us have. That will come and go and all of us will carry on as best we can in the world we live in. These pages testify to that. Like every one here i will find out how to be brave and resourceful negotiating what PBC might hold in store.That's the value to me of being able to communicate here. I am not on my own and glad to be able to come here when I need ask questions or just rant a bitπŸ˜… There I go.....

  • Lol! Thank you so much. You have a very healthy way of thinking about all this. Much appreciated 😊

  • I generally behave but not always. I do notice if I eat something I shouldn't I get pains and itching (which is now mild since Urso) increases.Does anyone else find they can take the Urso then burp it out? horrible too and something to watch for as it'unexpected when it happens. Why I wonder does this happen. I tend to eat and take Urso whilst on the move. I have life long ADHD symptoms which leave me restless and anxious.

  • Yep I get ya.. however get back in that saddle and do what you know and feel works for you ..

    I cut out alcohol, reduced carbs and increased veg.. switched to almond milk, goats milk in my tea.. literally a thimble full and hard goats cheese now and again ..

    I eat eggs .. good all round nutrition ( organic)

    Don't use butter .. and cut back on sugar .. I agree with the response that fruit high in sugar is not good and I do eat berries , apples , pears .. I stopped eating bananas ..

    I have an acupuncture therapist who works on liver, gallbladder and spleen points with her needles and it helps .. not for everyone I know but each to their own. Conventional meds don't do everything ..

    reducing carbs and sugary foods helps with itching

    I have organic white wine vinegar in the morning - known to be good liver helper as is good coffee btw.. a proven good liver food.. 2 cups a day will do it ..

    Epsom salt / Himalayan salt baths Help my skin and regular creaming ( twice daily morning / evening ) with aveeno lotion contributes to keep my skin moist and reduce itching .

    I walk everyday .. at least an hour .. I find exercise energising and fit it into my early morning .

    I am more productive in first half of the day .. I work full time and am finding that I need to have a break by 2pm .. a rest helps me keep going for 3/4 more hours ..

    So .. if you haven't fallen asleep or thrown yourselves out the window at this point in my story .. well I'm impressed ! ..

    it's a routine .. with lots of factors covered but in long term I feel it works .. it's just changing behaviours and small switches which don't take from the joy ...

    I still socialise , go away for weekends walking and hiking up the green and pleasants....

    I just manage my energy levels like an economy .. so resting up prior to going out and after a weekend climbing / hiking I rest up and get some early nights ..

    my motto

    Do everything you want to do just add a little planning .

    So boogie, climb , go to music fest , sing , pray , meditate .. whatever works for you just ..

    Keep on keeping on and be the best version of you πŸ‘ŒπŸ’ƒπŸ»πŸ•ΊπŸ€Ύβ€β™‚οΈβ›ΉοΈβ€β™€οΈπŸš΄πŸΎπŸ…πŸ† xx

  • AWESOME! πŸ‘

  • Im 100% agree with you !

    I find almond milk is not nutritional as it has been advertised so I switch to soya milk which is little hard to digest but I drink small amount at a time!

    I quit eating apples and plums due to high sugar content since I'm diagnosed reactive hypoglycemia which is one of the side effects of pbc!

  • ^^^ Excellent advice and what's been working for me as well!

  • Great advice! How long have you been diagnosed? Do you mind sharing where your labs are? Thanks!

  • Hi

    I really don't get hung up on bloods except for one which I trust my consultant to monitor and talk to me about . Bilirubin levels .. mine is holding steady for now and I was diagnosed 5 years ago. Now stage 4..

    you can have excellent bloods but the symptoms don't match them .

    I have tests every 6 months and I know by my symptoms if I need them earlier than planned ..

    worrying only uses up energy .. and I want to use that for something more profitable .

    So don't get bogged down comparing your blood results to those around you in this community of ours.

    my best buddy has breast cancer .. having chemo. She is amazingly positive and takes her antiemetics and steroids and just gets on with life ..

    There are so many people managing long term conditions .. this is just one of them so Buckle up and look forward .. .

    Well you did ask... 😩

    😊😊

  • I know. Its just hard not to worry. I am 35 with a 3 year old and was diagnosed at stage 1. I am just trying to get a feel for how to manage it well. Were you diagnosed at stage 1?

  • Hi

    No I was told that I probably had it for a long time prior to that ..

    your stage 1 ...that's a good start

    Optimum time to b diagnosed

    Loads you can do to mAx out your health

    Many many Years of great life ahead provided you not a professional stunt woman 😊 That is ..

    Worry for a little bit then let it go .. it uses far too much energy and it's not productive ..

    so in the words of Dr Phil

    ' get out of the victims chair ' and live large ..

    πŸ’ƒπŸ» Enjoy your family life xx

  • Thank you. Yes you are right.

  • Yes great to read 😊 Just read yours now and feel my previous wordathan is not unique! thanks for posting all helpfull😊

  • I never had a itch so I guess that doesn't help your question but I can't eat meat that is fatty so I don't eat much red meat it feels harder for me to digest.

  • Hi D0ra! So glad to hear this for you! What diet are you on? I tell myself the bad stuff is poison too! I am obsessed with juicing these days!

  • Hi everyone!

    I used to do the juicing thing but stopped because most of it was fruit. We should share some recipes...like good liver foods or smoothies to help one another particularly start with the healtly eating.

    I found recently that putting lemon in a smoothy that i am not particularly keen on the content it over powers that taste so i mostly get the lemon taste and can drink it... That way i am getting all the good stuff so i am tricking myself.

    If that makes any sense. Lol

  • hi,

    i am the same but have 2 kids as well. I don't want them to struggle. i think diet is important but stress control is as important too. you are brave to keep a diary.

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