45 yrs old next week & today told I have PB... - PBC Foundation
45 yrs old next week & today told I have PBC. Are there any restrictions to diet & taking medications. My doctor said to lead normal live.
Hi Snowqueen
My heart goes out to you! I was 45yrs when diagnosed and I know what a shock diagnoses is.
There are quite a few meds to avoid - but your doc/consultant will probably say speak to them and check before taking any over the counter medicines and herbal remedies.
As to food - I was advised to listen to my body and if something didn't agree then just avoid. As the years have passed more and more things go on the avoid list - in particular bread, cereals (not oats). Cant tolerate fried food or rich food, no longer eat cheese (unless Im spoiling myself), have goats milk instead of cows, little or no red meat and so it goes on. Basically simple foods that are easy to digest.
I hope that helps
Take care x
Hi Val02. Your advice is very helpful. Unfortunately I have not seen my consultant yet as I am still waiting for an appointment as I was given the diagnosis by a private doctor. I know what you mean about the bread as I have had lots of problems when I have eaten it. Will put in my avoid list too! Thanks again.
I eat a basically gluten free, dairy free diet, red meat free diet. Salmon, chicken, sardines, fresh veggies, fruits, gluten free pasta, brown rice and breads and lots of salad.. Small meals eaten more often works best for me. Yes, i do treat myself to cheese every now and then, because i love eggplant parmesean with melted mozzerella. For a treat, i found a dairy free frozen desert that is delicious by Artic Zero. I use Coconut Secrets raw coconut aminos(low sodium soy sauce substute )and thai peanut sauce for seasoning that are both also gluten free. I do use an olive oil cooking spray. I stopped drinking soda and using white sugar almost a year ago. In that time period, i dropped twenty two pounds and feel so much better. Stay focused on positive thoughts and being joyful. I firmly believe that we become what we believe about ourselves, which is why I meditate about being healed, happy, and energetic. Namaste. Judi
Thank you for your reply. I understand that celiacs can be associated with PBC. Did doctors advice you to follow a gluten free diet or is it your own choice? I also believe in positive thoughts as I have always been a positive person but its so difficult to keep a brave face all the time for the children etc. At the moment I keep breaking down but hope to join a yoga class soon & hopefully this will help. Thanks again.
I do not have celiac disease. I chose to eat this way because I personally believe it is a healthier choice for me. You will find what works best for you. In the meantime whenever negative thoughts arrise, acknowledge them, take a deep cleaning breath and find an affirmation that brings you to a peaceful feeling and the fearful thoughts will melt away. Namaste Judi
Hi snowqueen13,
Welcome to the forum. Not the best of days hearing you have this condition aye! We've all been there, so we all know what your going through. Don't be afraid to ask questions however daft you think they may sound or even if you just need to have a little moan. We're a friendly bunch honestly!
My gastro consultant advised me that Paracetamol is safe to take as a pain killer, but to avoid taking Asprin based medication and any over the counter medication. My GP has also prescribed me with other pain killers such as CoCodamol, Tramadol and Naproxen. But if at all unsure speak to your doctor/consultant.
The only thing the consultant said about food was to eat a low salt, low fat diet but not to cut them out completely only the bad fats. I do not drink alcohol but the consultant said that one or two alcoholic drinks every now and again will not do you any harm.
Best wishes
Thank you mumofthree for your advice & support. I am trying to get as much information so I don't do anything to make matters worse! The NHS in Spain is so slow so I think I will be a regular in this forum. Thanks again.
Hi
i've known i've had PBC for 13 years now and have learnt to listen to your body, i find that if i eat too much fat i get tired and the itch increases. if i have alcohol then i sleep for 48 hours and itch like mad yet other people have no problem. log on to the PBC foundation web site. The only advise i got about diet was to eat little and often and i could have the odd tipple.
all the best
Thanks for your reply. I have now taking note more of what my body is saying, especially the itching! Eating small amounts throughout the day is helping me too. Thanks again & best wishes.
Hello snowqueen.
I didn't get any advice with regards foods, etc to avoid once I was diagnosed with PBC in 2010. I remember asking the consultant myself if I should change my diet but he just said prior to taking the AMA/ANA blood test, "The liver likes calories".
For me alcohol was a definite no-no after the first LFT in 2010 but I wasn't a drinker prior so I've had no problems whatsoever quitting the odd one altogether, I just do not drink even at celebratory functions now.
I think if possible it is best to avoid alcohol as mentioned but also try to limit any over-the-counter (OTC) drugs if not really needed. I did in the past of an occasion if I had a headache for eg grab a couple of paracetamols (rewind a decade prior and I used to buy aspirin until it was deemed a bit of a bad guy, now it seems paracetamol has been under the spotlight!), nothing heavy. I hadn't had a GP prescription since 1999 when I had a bout of tonsillitis and was given antibiotics (that I then developed thrush from!).
I try to steer clear of a lot of fat. Given bile acts upon fats like a detergent to me anyway it makes sense the less fat we have the better for the biliary system. I try to eat the good fats if I do any cooking. Rice bran oil is apparently free of cholesterol and good to fry foods in if required but I only use a teaspoon if making a chicken dish to seal it. Rapeseed oil is also deemed a goody.
I try to juice/blend fruits and vegetables (carrots and cucumbers are good) to have once a day when possible and for me I think it does better than eating the actual full fruits as I still wonder about what the fruits/veg have been sprayed with. Unfortunately in England at the moment the price of food has dramatically risen so at times it can be difficult to buy what I did once of a day buy if possible, organic fruits and veg. I do eat bananas a lot, almost one a day due to certain mineral content.
I do not drink fizzy drinks like coke, never have been partial so that is of no bother to me either. I avoid foods that have MSG in them and I also do not go in for diet products with artificial sweeteners as I think the body has enough to cope with without causing more hassle. So for me if I buy a yogurt for eg., it has to be the normal with sugar added as opposed to aspartame or whatever other artificial sweetener a diet version contains.
Hope this has contributed somehow.
Thank you for your really helpful reply. I will start to make changes in my diet & cooking too. In Spain we use alot of olive oil so your comment is very interesting. Thanks again & best wishes.
Hello again snowqueen13.
It wasn't so long ago I reqad up a bit about cooking oils. I had in the past always bought the extra virgin olive oil but I then found out that it is only actaully recommended for best use as it comes in dressings as opposed to being heated for cooking.
I can't say now where I read about oils exactly but know it did state that seed oils were pretty good. The rice bran oil I have been buying in the last yr is actually sold over here in England but it comes from Australia. Does state on the attached notelet on the bottle that it is perfectly good for cooking with and it has no cholesterol.
My mother-in-law lives out in Malaga now she is retired. I've never been but when she has been over at intervals, she says she misses eating an abundance of fish that is in good supply out in Spain. I do like fish myself, have tried quite a lot of different types in the last few years so know certain ones (monkfish for eg) I do not like (monkfish for eg), others I really do (Scottish trout).
I am also a bit of a firm believer now with having PBC that fresh can be best but also foods that don't contain many additives or none at all where possible. I tend to cook more simple but at the same time what I'd consider as pretty nutritious (ie steamed salmon poached in skimmed milk, new potatoes and steamed vegetables). I upped the amount of rice that we eat now, vary between white or brown.
I just eat as normal only advice I've had is on this forum I drink more green tea now I drank it before but it helps if bloated feeling comes on I had 1/2 shandy the other week felt like I'd had 6 pints so thats all I don't consume anymore your body will tell you
I am interested to hear if any others have similar experience to me? Firstly I am male, you know, compartmentalised, unemotional, and tough.. (well I hope you get my drift here 
) Diagnosed in early Feb 2013 with asymptomatic PBC - my Dr. put me on Urso and consultant put me on beta blockers for varicees that are present. My bloods show I have had PBC for at least 4 years, and who knows possibly 30 years? Here is my interest : Asymptomatic, well I felt less strong than I was at 18 (now 59) currently fatigue or lethargy means I simply fall asleep during the day with out choice! teeth giving problems, and now we can look back and see my finger (and toe) nails display liver issues symptoms (and have done for years) my golden tan in winter is now explained !, but SINCE diagnosis I am a different person, bloating, mood swings, brain fog, fatigue, all these symptoms when 5 months ago I had never heard of PBC or any of the symptoms associated with PBC. So what happened? did i react to the diagnosis and give in to symptoms? is it just a co-incidence, and these symptoms were about to "flower" anyway? or is it the URSO ? Any one else have similar story? -
As for diet, I too listen to my body, I used to eat cheese daily about 5 years ago and by the time of diagnosis I hardly ate cheese at all, I keep fat intake low by choice, I used to enjoy a pie, not now. I used to enjoy the occasional pint or glass of wine, now I do not want alcohol and one glass of wine is enough (too much) if I do take a glass. Weetabix I eat 2 times a day with banana,milk and syrup, little and often is the motto, I used to love butter, now I prefer pro-active Flora, Are Kippers good for our condition? Will try Green Tea for anti bloating.
