Recently diagnosed with PBC negative which I don’t understand and a lot of people on here have been talking about levels etc. How come everyone seems to have regular tests and get told their levels? I saw the consultant in February who said I had PBC negative as well as cirrhosis. (I hadn’t felt ill up until my cirrhosis diagnosis due to alcohol in November 2017 which I quit straightaway and have stayed off)
Despite questions from me (obviously the wrong ones) I am unsure of my diagnosis, life expectancy, understanding blood levels etc. I see him again in May. Can’t even fill in the PBC app as the abbreviations for blood results bear no resemblance to the letter sent to my GP from the hep. Every waking moment I worry absolutely what I eat, or am not eating, my wee, poo and all other bodily functions, do I eat fat or not, salt or not, protein .?. it is really getting me down and I’m feeling quite depressed which is unlike me as I’m usually very positive. I’ve read everything I can understand on the PBC website and British liver trust and still feel lost. Does having cirrhosis already shorten my life more now that I have PBC. Anybody offer any help with questions, diet outlook etc
Thank you all, sorry for the rant!
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deborahfrog
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Welcome to the group. There's a lot of support and wisdom here. I'm wondering what you mean when you say "PBC negative"? Do you mean that you were diagnosed with PBC even though your AMA (antimitochondrial antibody) blood test came out negative?
Also were you prescribed URSO?
I'm sure this is all overwhelming for you right now.. but take a deep breath.. and take things step by step. We can help you as you settle in with new information.. we've all been there.
I'm sorry you have to wait until May for more clarification from doctor.
The first thing to think is that you are still the same person as the one the week before the diagnosis.... So take a mental rewind and think about what you ate before the diagnosis... We're you a fairly healthy eater??
The main thing is is that you have given up the alcohol... Really well done... That is a big thing...
Both pbc and alcohol can cause cirrhosis... So you've now taken away one cause... So that's good...
General food guidelines I always tried to follow is generally healthy eating.. Keeping fat levels down, my body tolerates smaller quantities more often, salt is not great for anyone so think you safe to assume not too much of that...
Protein is good... But pbcers apparently struggle to digest red meat as easily... So might be better with chicken, cheese, fish, eggs etc...
Oh and plenty of water to drink...
That's my personal recommendations so please don't assume it's a perfect list but generally sensible eating is the plan... Hope that helps...
If you have some specific questions you can go to your gp and see if they have any answers for you... Or ring the consultant sec and ask a couple of questions...
When you get your appt go with a written down list.. So you don't forget
What you want to ask.. Its easy to forget when you get in the room...
When I was first diagnosed levels etc were not so available.. 20 years ago... It was a case of go on ursodeoxycholic acid and let the liver consultants monitor blood tests..
Please try not to over analyse everything.. Just do what you can and keep living your life in your normal way
Very best wishes cazer x
You didn't rant, only expressed your present confusion and worries so well that we all recognise them here. Eileen and Cazer say wise things to you.
If you are not yet on URSO but have been diagnosed with PBC, then please ask your consultant to explain why this hasn't yet been prescribed for you.
Just below your post to the left, you'll see Robert's post "PBC and Life Expectancy. If you click on this and read it will give you great reassurance.
Don't worry about anything, especially blood levels. In time, when you are ready, you will know how they 'work'.
PBC feeds off stress, so focus on being kind to yourself, enjoying all you can, and start with giving yourself a great big hugging, dancing, laughing round of applause for what you have done already to take best care of yourself, avoiding alcohol, joining PBC Foundation, thinking about your diet, and sharing your concerns with people who understand them. You are doing a great job already and you will be fine. Best wishes
Thank you Gritty. I haven't had the strength to be on this site for a while and hesitated to reply to anyone, so your comment was lovely for me to see, and it's good to be back, as you say to this community of caring people.
I don't think I can add much to the lovely replies you've already received, other than do check what your Medic means by 'PBC negative'.
Like the others, I'm also guessing it means that he thinks you do have PBC, but without the presence of AMAs (antimitochodrial antibodies).
Most people are diagnosed as having PBC by the presence of both AMAs … AND having abnormal liver function tests (lfts) (this is where certain 'marker' chemicals are high - usually ALP, ALT, ALT, GGT, etc).
However, a small number of people have symptoms of PBC and high lfts, but they don't test positive for the AMAs. However, in these cases the medical rules (at least in the UK) is absolutely clear: that for an official 'diagnosis' of PBC there have to be 2 diagnostic tests to confirm the diagnosis of PBC... So, if either high lfts … or the presence of AMAs... are not noted, then there has to be a liver biopsy.
I guess the problem here, is that if you already have liver damage from drinking, then it may be harder to identify PBC-type damage. However, I've an idea the damage done can be different, but you may need to see a really high-flight PBC expert, to have your biopsy done and well-interpreted.
I would talk to the lovely people at the 'PBC Foundation' who host this site. See the links to the right above, or Google 'PBC Foundation' - you can email.
Otherwise you are doing the right things: not drinking, watching your diet, exercise, plenty of water … and as 220681 says, 'avoid stress and worry' - always the worst for liver and autoimmune issues: have fun, do things you love, and treat yourself - in healthy ways.
Take care, and od please check out the 'PBC foundation' site as it has loads of wonderful info as well as the latest 'medical relaeas about the exact diagnosis of PBc.
IT is confusing and rather scary, right???? I am one of the rare PBC Negative folks. That means that my AMA levels do not show the antibodies associated with auto immune diseases. Weird huh? I've questioned my diagnosis since i found that out, but a biopsy did confirm the diagnosis years ago. So, I have learned not to be attached t the diagnosis. I have really cleaned up my diet and general lifestyle over the years. I think the best thing I have done is to not take myself so seriously. I also have an intolerance to URSO, but was not offered it until I was about 15 years into this process. So, I rely on clean eating, try to keep in the no stress zone, and listen to my body. My lab numbers are always high, but my bilirubin is normal, my fibroscan shows no fibrosis or fatty liver. Think I'll be ok for another day....Be well
Wow. Thank you all for your kind words and amazing guidance. Just reading them has made me cry but in a good way as already I don’t feel so alone. Having you all to chat to is a comfort in itself.
I have got the PBC app and have been on the website and become a member but I think I speed read everything there in a panic and need to re read. The consultant has put me on Urso after debating it for over a year but so far no mention of any further tests. I think my biggest worry is how the PBC will affect my already damaged liver.
Mentally for me is coming to terms with the damage I have don’t to my body through alcohol without realising it and what the future holds. There’s nobody to talk to unless you go to AA which I don’t want to do and having given up overnight by myself when I had my diagnosis in November 2017 I don’t want to sit in a room and talk about alcohol. It’s a vicious circle!!
Could you get some cognitive behaviour therapy (CBT) to firm up your already great achievement in avoiding alcohol? You've nothing to blame yourself for: alcoholism is a disease. And to the extent that all of us may have done things which weren't optimal for health, it's all just spilt milk, we can forget about what we can't change and focus on what we can. You can do this!
I hadn’t thought of CBT. I feel a bit overwhelmed with it all. Husband doesn’t come to any appointments or want to talk about it, probably because he’s had years of telling me to quit drinking and then when I finally do I have PBC as another illness. He’s a bit of bury head in sand sort I’m becoming to realise. I do feel very isolated and you guys are the only ones who understand for which I am thankful
I also gave up alcohol over night by myself. It took 6 months for people to talk me into an AA meeting. Its an incredible support group and it saved my life. I've been sober 38 years now. If you'd like to chat privately about it, feel free to send me a private message. I also have PBC.
You can have quite a bit of damaged liver without it causing a huge issue... As you say its confusing with the 2 things but the alcohol damage will not get any worse now... So give your self a pat on the back for giving up and park that to one side if you can...
The pbc may only be in early stages... As someone else probably worth asking for better assessment next time you go and ask to see a liver specialist...
You could also ask to see a dietician..
With pbc they will watch the blood tests.. Alp, alt, bilirubin, and albumin are the main ones... Which hopefully will be stable.. But these tend to be their best guides...
I totally understand the eating thing. I completely lost my appetite because I didn't know what to eat that would help me. For me, I had a life changing experience when I read Liver Rescue by the Medical Medium. I've been eating most, if not all, of the foods that he says are good for our livers for the last 6 months. It has made an incredible difference for me. I eat a very balanced diet of fruits and veggies and grains, keeping fats low. My appetite is up and I always know good, nourishing (for my liver) choices when I'm hungry. Knowing that I'm supporting my liver makes me smile, which is a good enough reason for me. Take good care.
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