PBC Foundation
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I am newly diagnosed but tbc (was told by Consultant but alas GP still awaiting confirmation - letter seems to have gone astray). In short-term, can someone advise on what foods are best to be avoided please and what can be eaten often, as I am feeling hunger pangs but suffer the consequences. Consultant recommended I go on the main medication but I have opted to wait until my next CT scan in April 2016. With thanks

5 Replies

OK honey couple of things. Your gp can chase your letter or even you can chase your letter. If you have PBC confirmed in the letter you should go on urso straight away. Pointless waiting for a ct scan. A ct scan won't confirm PBC only a biopsy can. There aren't really any food limits but listen to your body. Basically low fat & healthy. Boring I know but after a while your body will let you know. I can't eat Indian food because of the gee ( butter) I used to love going to the Indian but it has the same effect as alcohol sends me immediately to bed whilst it deals with it. Can last up to three days. So I avoid both. Join the PBC foundation they have an online compendium with lots of advice xx


I agree with teddybear, go on the urso now, and worry about the food later, the urso is more important.


Thank you so much TeddyBear 7 for reply. Re the missing letter......... this has been an ongoing issue as the Trust I am under uses a software application which my surgery does not have, hence the letters have not been received. I have chased; one report in August was faxed to GP. My Gastro Cons rang last Monday to discuss latest findings and said letter would be faxed over. Alas, I had apt with GP yesterday to discuss and guess what........... he has not received anything.

Regarding the CT: the Haematology Team recommended this for April/May 2016 as the complication is that I also have enlarged lymph nodes in stomach and I said I would want to take any medication of the PBC medication until the CT scan in 2016 has been reviewed. However, I will be advised by my GP once he gets the elusive letters/reports from Gastro Cons.

All my symptoms are variable, so am keeping a food diary to see what makes a difference, but will definitely be eating low fat (I don't drink alcohol) and no many carbs, so I guess it will be fruit and veg for me!

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I was told to eat little and often.a lot of pbc sufferers find they cant tplerate red meat very easily

I actually find carbs are good not bad also they give enetgy and help with the nausea if you get any.anything too acid gives me tummy ache..so i avoid orange juice etc.bananas are good as they are a healthy carb.also stick with not too much fat in anyone meal your body may struggle to process it.fatty stuff e.g.shop fish and chips made me sick quite a few times so i stopped having it.one other thing i only have quite small meals now.

If we got out a light bite or childs portion then i can have a small pud.hope this helps.cazer

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Thank you so much for advice on diet, much appreciated


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