Hi have just been diagnosed with PBC..a bit daunting but found all your posts very interesting.many thanks what diet guidelines if any?

[Disy]

Having liver biopsy this week to determine how much damage though the ultra sound didnt pick up anything.

[JennerLayne]

Hi Disy,

I'm relatively new here myself although I've had digestive issues for the past 10-15 years. Upon meeting me in March (pre-PBC dx), my gastroenterologist suggested I go gluten-free and also switch to smaller meals several times daily because I was bloated, swollen, having daily belly aches, and suffering what felt like Irritable bowel syndrome. I had never had a doctor 'call me out' on my obese weight before, and instantly, I switched to GF and began feeling better. I've dropped about 40 lbs in almost five months and many digestive issues have been resolved. After the first 10 lbs or so, I received the PBC dx, so the doctor said it is just as well that I get into a healthier diet.

He recommended eating less fat, lower my salt intake to keep water gain minimal, and eat smaller meals 5-6x daily. I eat more chicken and fish and stay away from a lot of red meat (for me, it seems harder to digest), and of course now, I stay away from gluten and believe it has made the most difference in my skin (rosacea seems to have cleared somewhat), my belly is no longer distended and my energy level is somewhat higher. I would suggest asking your doctor if there is something specific you should do and otherwise, experiment and see how you feel when you change your dietary intake.

Let us know how your liver biopsy comes out. Given the US didn't pick up anything, perhaps your biopsy will also show little or no damage to your liver. Stay positive!

[Disy in reply to JennerLayne]

Thankyou Jennerlane..

have been reading different posts and realising I may have had this for years. My LFTs have been high for years and knew something wasn't quite right and now I know why. Thank God I decided to change Doctors. It is all a learning curve like you said. I will let you know about biopsy. Am having it done on thursday. By the way I am in the land of down under. ..!!!

Cheers and thanks again

[Magnolia]

Welcome Oscardog, you'll find this group is extremely helpful.

[Magnolia]

Welcome Disy, you'll find this group so helpful, I know I have.

[Elsaval]

Welcome Disy

I was diagnoised in Sept 2013. I'm doing well having no problems. My liver scan was normal too. Let us know how your biopsy comes out. I wish you all the best!!

[Puddles]

Hi Disy and welcome, I too am from Down Under I was just diagnosed a couple of months ago, I had normal ultrasound and was found to be stage 1 on biopsy. My Dr didn't really give any specific diet guidelines, I take a few supplements - Vit D, Calcium and Vit. I just try to eat a normal healthy diet.

Good luck with your biopsy

Puddles

[Disy in reply to Puddles]

Thankyou Puddles...I wish you Good Health as good as it can be.

I have to laugh though when you say The long version of PMC ..the cirhosis bit I am sure their glances change...so I stick to PMC lol!!!. Where down under are you ? I am in SA. Yes have read that due to PMC our body cannot obtain vitamin D from the food we eat. I thought once I find out what stage I am after biopsy I might head along to a dietician.

Take care

[Puddles in reply to Disy]

Hi Disy,

I am in Melbourne (a very wet and wild Melbourne today!!) Yes many people have never heard of PBC and of course everyone has heard of cirrhosis - and they draw their own conclusions! I just describe it as an autoimmune disease of the liver - not everyone with PBC even progresses to cirrhosis. In early stages (which can last for many many years) the liver is usually functioning pretty normally. I have just had borderline calcium and vit D over the years so thought it would be good to keep it topped up. And the Vit E my Dr suggested as it has been shown to have positive effects in fatty liver disease, and though this condition is different she felt it would do no harm. So with those and my Urso I fair rattle in the mornings LOL

[Disy in reply to Puddles]

That is interesting about the vitamin E. Good to know. I changed my vitamins to the gummies variety cos of my lapband..easier to get down. Are there any side effects from the Urso..my gastro doc has talked about the briefly..

[Puddles in reply to Disy]

I have been taking the Urso for about 8 weeks now, having blood tests in 3 weeks to see if any improvement in my LFTs. The first week I had the very slightest nauseous feeling and after that nothing, really wouldn't know I was taking anything different. I think for most people there are very few side effects though there are a couple of posts I have seen here that have had upset stomachs.

[Hidden]

Hello Disy.

Well I presume you are not in England due to the fact that you have been diagnosed with PBC and are now having a liver biopsy to apparently 'assess any damage not picked up by ultrasound'.

I had an ultrasound back in 2010 months prior to diagnose. The AMA blood test for me was the final test I had to give diagnose of PBC. I started earlier that year itching and at the time had fatigue pretty badly (I was working much more over the odds of a full-time week at the time tho').

Took almost 9 months from visiting the GP with the itch to get the diagnose and start on urso. The fatigue long since left me, still got the itch which is normally confined to night-time.

Now I had read up on PBC what I could understand of it months prior to being diagnosed and I never asked the doctor of hospital consultant if I had PBC but did say the morning the consultant mentioned doing some special blood tests for antibodies, I said then was it to check for PBC. He suspected I did have PBC as I found out a couple months later. My AMA had a 'high titre' but the ANA was negative.

There's never been any mention of liver biopsy from the hospital consultant but my GP did mention I'd 'probably have a biopsy' to which I told him that these days in England anyway if there is suspected PBC and you have symptons plus a positive AMA test it's not usually required and I wouldn't be having one anyway if that diagnosis was made.

Seems that in America is stands as the norm once someone has been diagnosed. I know that biopsies can be done if there is doubt about what could be wrong and I'd have probably agreed myself to have one back in 2010 had the antibodies tests been questionable or negative but I've no intentions of ever having one.

The reason is that regardless as others have said on this site too, it won't change the treatment as there is really only urso to take with PBC. Also the biopsied site might not be the actual part of the liver that is badly affected or possibly could be further affected than the rest of the liver as the liver is a pretty large organ, the largest in the human body. The one thing it normally does is give a positive result for PBC but in my opinion, with diagnose I can't see the point of one but it's individual choice if mentioned.

Out of interest my ultrasound gave a pretty much normal looking liver and other organs. As I understand it calculations of blood readings, think one is the GGT and the other LFTs can tell a medic if there is some inflammation of the liver. I was informed this when I saw the hospital consultant back in 2010 prior to having the AMA/ANA taken.

I know from day one of the being informed I had abnormal LFTs in 2010 I ceased having an alcohol, not that I was much of a drinker anyway. I haven't had any alcohol since and because I didn't partake much prior to diagnose, I don't even think about it (can be a problem for others who are drinking around one!).

I've never smoked as that is advised to cease if one has PBC apparently.

I have looked after myself even more since being diagnosed. I also started experimenting with milk thistle later last year and noticed my LFTs were better so have continued taking that during this yr.

I wasn't a fatty food eater prior to diagnose but now I take even more note. I know that rapeseed oil for eg and also rice bran oil (mine comes from Australia but it is sold here in England) are pretty good for cooking but I only use very sparingly. I am not a deep fried food fan at all and will only probably partake of a few fish and chips that we English love when on holiday for one meal, a treat. I juice and/or blend fruit and vegetables (carrots are good as is cucumber) to have with lunch most days I am able. I also try to have porridge made with mainly water and a splash of milk (no sugar) for breakfast most days as that is good for dealing with cholesterol apparently.

[Disy in reply to Hidden]

Hi Peridot

thank you so much for your information. Yes it is a bit daunting and a bit surreal and trying to soak up all the information. I have never heard of PBC before and now I need to deal with it. I have never been a smoker or a big drinker by any means. I know what you mean by the fatigue I am lucky to be working for myself. I do get very tired very quickly. Seem to have few cat naps through the day. Some days I have to drag myself out of bed.My specialist said that he wanted to do the biopsy to see how much damage had been done but I do understand your logic on this. The itching is usually on my chest area and my legs at the moment and found my skin to be very dry. I think I need to get a gallon or 2 of moisturiser lol.

anyway keep smiling everyone and have a great day..

cheers

[Hidden in reply to Disy]

Hopefully Disy that once you are taking urso daily and start seeing some better LFT results due to the urso then fatigue for you will perhaps start lessening off as it did for me. Mine is pretty much non-existent but I do at times after a bit of a restless night due to the itch start feeling that whacked out state around 3p.m. I'd break the bookies if bets were placed on me remaining awake beyond 10p.m. if been up since the crack of dawn and on the go as I never seem to manage to get to the end of a film later evening without falling asleep, just can't help myself. Happened last night and the irony of it is then by the time I go upstairs and drop into bed I feel wide-awake again, not good if the itch has reared its ugly head!

My itch is usually to my legs below the knees and my feet and toes at night. Whilst resting in the evening before bed I can put my feet up with a film on and I start feeling itchy round the buttocks area and thighs. Quite bizarre how random the itch can be!

[Val02]

I have become short of iron and vit D as a result of PBC. I get the Vit D on prescription in the form of a daily tablet - its 800ul which I think is twice the normal daily dose. Absolutely to side effects. And for my iron I take Floradix Iron preparation which my doctor recommended as very gentle on the digestion (but I have to buy myself).

Levels are much better now. You may want to ask for a Vitamin test to check - as if your not feeling great malabsorption of vitamins can be the cause. Speak to your consultant mine was happy to arrange.

[Hidden]

I am trying not to end up taking additional tablets and potions every day now I have PBC although I know that at times cannot be avoided.

I know with iron prior to taking a short (30 days) of iron tablets (ferrous fumerate - I will mention a bit more about this shortly) back in early 2010, the GP did the LFTs at the time as it can be the norm to check if being given iron supplements by a doctor. That's when they LFTs were discovered to come back abnormal but I did go to the GP with fatigue and also itching at the time so suppose it was routine. At the time he also checked the prombothin time which is for the blood clotting (had since and like previously, always normal).

I know in late stages of PBC the liver can actually start to store iron plus with another liver condition (forgets name) the liver continuously stores iron so patients with that condition have to keep having medical intervention. (I found out all this out during 2010 when I was trying myself to figure out what was up with me and then bloods for this and that kept returning back normal.)

My slightly lower iron levels has been put down to frequent nosebleeds of which I had ENT appts for last year and one earlier this yr. My last blood test 6wks after the ENT appt this year showed there to be no drop in ferritin and it is currently no cause for concern to my GP. Expect the next bloods in Dec., it will be compared.

It is true that Vit D in a good body level can give a good energy boost. (I was reading up on Vit D injections awhile ago as back in 2010 my GP reckoned I should have Vit D supplements (he didn't say how) but when I went to the hospital the consultant did another blood check for Vit D and said that due to the level being on the line between what is considered normal and abnormal it 'wasn't bad' and didn't recommend.

I have seen Floradix iron preparation in a health magazine several yrs ago and know Holland & Barratt did stock it. I have a friend who takes that. I know I found it odd in 2010 when I was given a script for the ferrous fumerate as 10yrs prior when I went to give blood and was told I needed my own iron supplies that day and had to visit the GP, I took along some OTC iron I had bought, 14mgs the standard for OTC and it was ferrous fumerate. At that time she said fumerate wasn't the best and her script gave me ferrous sulphite. In 2010 I was given a script for high dose ferrous fumerate which I thought odd. I asked at the pharmacy as knew you used to be able to buy the ferrous sulphite OTC from the pharmacist and it was a lot lot cheaper than script price. What I'm saying is that things change with regards to medical treatment and little wonder at times it gets all confusing.

[Puddles]

Just wanted to say good luck with your biopsy tomorrow,

Puddles xx

[Disy in reply to Puddles]

Thank you Puddles..all ready for so called day surgery through the X Ray dept. Have to be there at 1pm. Will be glad and ready for the next step. Twas my b/day today..another year older and another year wiser so they say lol!!

Do you ever feel uncomfortable or a bit sore in the liver area. I even get a bit of itching on my chest and arms. What strange symptoms we have. I know this is a serious condition and all of that. I never realised all these strange symptoms I have been experiencing marry up together to show PBC.

[Puddles in reply to Disy]

Happy Birthday!

Yes I have had soreness in the liver area, in fact before they accidentally found I had positive AMA I had been for a liver ultrasound and been getting it checked out. Ultrasound was normal and the slight elevation in my LFTs they weren't concerned about. Once they found the AMA they were more interested in my LFTs. It is really more of a discomfort than pain and don't know if it is just psychological but since starting the Urso I haven't noticed it anywhere near as much.

I haven't really had any itching to date, but it is a very common symptom of PBC.