Does anyone have any diet advise , what is good, what to avoid, still reeling from PBC diagnosis (stage1) but I want to do the best I can

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And manage this well

Thank you

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Welcome Newsroom.

Well I am not sure but you might be like majority of us on this site after PBC diagnose, that is you thought you were looking after yourself adequately and bang, along comes PBC.

Interestingly though it took 9mths from me seeing a doctor with itching (and fatigue (that has long since left me)) to being diagnosed with PBC (Dec 2010) I had repeats of the LFTs at intervals prior to diagnose and the one I had the day I had the AMA (& ANA) blood test without diagnose of PBC and taking urso, I noticed after receiving the print-out of the whole bloods I had during 2010 that mine had naturally started to come down.

All I did for the 10wks between this blood test and the last was take more note of what I was eating, scrutinize foods even more so no hidden MSG for eg got by me, nor did artificial sweeteners either. I did read up a bit about the liver and what could be good to have if you had a liver condition and came across a few things that are supposed to be good for the liver tho' not taken in abundance. Coffee is now deemed to be good (there is an article I posted on here about a month ago, just pop "Coffee" in the search and it is in Posts), liquorice (tho' not too much as it can cause blood pressure to go higher), this is another.

Make sure you get a good balance of foods to attempt to cover all the vitamins and minerals. If it is sunny try to get out there for a short time to build up Vit D supplies as certain fat soluble vitamins can be more of a problem to absorb with PBC.

I have been eating quite a bit of gluten-free foods over the last couple yrs due to a hospital consultant thinking my son (25 now) had developed an allergy to wheat due to over-use of antibiotics. Thought I cannot say it has made a really big difference, I think it is probably easier to digest than wheat products (but I still eat wheat products as I have allergies there).

I found in the first few months of taking urso that I suffered a it of bloating, thought my itch had got that bit worse but also I suffered with heartburn every night. These did vanish and I only persevered due to having my first repeat LFTs, GGT (and FBC) about 8wks following starting on urso and things had started to look up as my LFTs and GGT were starting to come down.

Although I had a heads up myself and stumbled across PBC several months prior to diagnose (I never mentioned to the GP), I think when I was informed I had PBC it did make it real and also at the same time scary. Emotions are all over the place. I even told my husband of only 19mths by that time that he could leave due to the fact I now have something that at present cannot be cured.

But as time starts to pass by and you dispense with the 'Why me?' you do want to start moving on with your life as it is precious (I never took mine for granted due to being left a widow in my late 20s with 2 young children to raise).

In my mind I think why should I sit down and let PBC control my life altogether when there are still things I want to do and I'm not quite 50 yet. I don't know what the future holds but once time passes and you get to the first year mark and then the 2nd and now I've just gone past my 3rd 'anniversary' you do start to just think that PBC is a nuisance more than anything if you itch. If I didn't itch I'd not know I had anything wrong.

There are good days and bad days. I always feel worse when the time comes for repeat bloods. I recently had mine and then got another new GP in surgery who sort of panicked and rang me about the LFTs and GGT having only compared them with the ones I had done back in May. Results that weren't bad when I got the print out as I've got all my print outs from 2010 so know at present they are still ok. If you can request a print out of your results. These days I don't bother scrutinizing them, I just glance, then put them away.

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PS I've just found a leaflet from the British Liver Trust that I have posted on here under the Post section you might find of some help.

I have just read it and I've not taken anything in that COULD occur with PBC (liver conditions), I'm of the thinking I'll deal with things as they appear and not mentally before.

Here's the link I posted again:-

britishlivertrust.org.uk/li...

[Newsroom]

Thank you for your reply and for the link to the liver foundation,I have printed it off. I am still coming to terms with my diagnosis and it is so helpful to hear from people who actually do live with this.