Recently diagnosed

[SewingFan]

Recently diagnosed and reading up on the condition and anything that may help over and above medication e.g. Diet, alternative supplements etc.

[ninjagirlwebb]

Generally eat a clean, healthy diet, avoid processed foods, minimal or no alcohol depending on your stage. Make sure your vitamin D & calcium is adequate as pbc patients are more suspectible to osteoporosis. Avoid raw shellfish like oysters.

Get a DEXA scan to establish a baseline for bone density comparisons every few years.

Hope this helps.

Haley

[SewingFan in reply to ninjagirlwebb]

Thank you for your good advice, this really does help. Reading up on info on PBC foundation which has been a great help. Has stopped me worrying quite so much.

[ninjagirlwebb in reply to SewingFan]

Don’t worry; if pbc is caught early & you respond to urso, life expectancy is the same as normal population as per my hepatologist. Just make sure you take the meds religiously.

[butterflyEi]

Hello SewingFan

As ninjagirlwebb has said follow a clean diet. Can I add that red meat can be difficult for some of us to process. I have been diagnosed for over 12 years but with hindsight know that I had it for at least 10 years prior. As I have grown older I take a multi vitamin without iron and a vitamin D+K spray each day to support my system. It would be good to run anything passed your specialist if you decide on supplements as he will know your medical history best. For myself I avoid fizzy drinks, red meat, processed and fatty foods. I make my own soups for lunch in winter and salads in summer. Some people find that cutting down on wheat products helpful whilst others find it difficult to tolerate dairy however it is important for bone density to have calcium containing foods. We are all different in what we can tolerate.

If you have not already done so join the PBC Foundation through the link above (free to join) it has a wealth of information in the member's section and the back copies of the Bear Facts magazine have useful information from experts. You may also like to look at the pinned post on PBC and life expectancy on the top right hand side of this page.

On YouTube you can find a recording where about 36 or 37 minutes into the presentation of female doctor speaks about vitamins.

youtube.com/watch?v=m7TyrhQ...(Not working as expected?)

There is also a very useful recording for newly diagnosed persons

youtube.com/watch?v=UO83trY...(Not working as expected?)

There is a lot of old information to be found on the internet which is out of date and incorrect and if you are searching it can be scary. I hope all of this is some help to you.

[SewingFan in reply to butterflyEi]

This has helped very much, thank you. I have joined the PBC foundation which Has given me so much information and made me feel a lot more relaxed coming to terms with the condition.

[Michi1]

About 40% of us also have celiac disease, many asymptomatic. You might want to get a test ASAP. If you cut out gluten and test later it won’t be valid. Gluten intolerance can affect you even if you don’t have celiac though so maybe it doesn’t matter. I discovered after cutting gluten for about two months and then reintroducing it that it makes me really sick. Dairy has a protein called casein that reacts for many much like gluten. I avoid that too and it seems to help.

[SewingFan]

Thank you for mentioning about celiac disease, I have often wondered if maybe I had this condition over the years but have never had a test. But shall definitely now after your advice. Many thanks