I am currently under investigation for PBC. My hepatologist is carrying out a few more tests as he doesn’t want to formally diagnose me until they come back. Basically my liver test results are not where he would expect them to be. He advised me to join the PBC organisation and I have a follow up appointment in April. Recently I have started to get an uncomfortable feeling in my stomach just under my chest bone when I have been eating I find the only way I can feel better is to lie on the floor and stretch it out for a considerable time. Has anyone else had this? Or is it unrelated.
Uncomfortable stomach: I am currently under... - PBC Foundation
I have never read that your issue is pbc related & I have read many pbc related medical journals. Since it appears to be a stomach issue, you really should let a gastroenterologist check it out for you. Good Luck.
I was diagnosed with PBC in 2016 and my main symptom was as you described. It usually started after eating and a lot of times would be worse at night. It took some time to figure out what it was, but I am quite certain it is PBC related as it stopped as soon as I started taking the ursodiol. If I forget to take my medication for a day or two then that same feeling returns. Hopefully they figure out what is causing your pain/discomfort. Keep us updated and wish you the best!
I used to suffer the same pain and had done for years. I remember layed half on bed ,half off to stretch it out. I also use to lie on floor and get my daughter(a toddler at the time) to lie on my stomach. Cant say if PBC related thougg.
I have been diagnosed with PBC/AIH and celiac and very rarely have suffered it since on meds and gluten free.
Hope you get relief and answers soon.
Thank you for your reply. It’s driving me mad and making me feel like not eating to save the uncomfortable feeling I get as soon as it hits my intestines. I will mention it to my doctor at my next appointment and see what he says.
Hi Karenlouise75, thanks for your post. Did your doctor suggest smaller meals more frequently? That is a help. I'm on urso. I sometimes have gastrointestinal discomfort, but even when i don't (mostly) i like to rest 45mins to an hour in a position that allows freedom around whole abdomen. I like to think it must help if my liver is having a hard time from PBC, and I want to be kind to it. This is a luxury really. In a busy working life it would be very difficult to achieve this. My thoughts are very much with people who are not yet retired and struggle with these issues. I'm not sure that's any help, but I certainly sympathise. Best wishes.
I would suggest that you have a good search and in-depth 'read around' on the website of the UK's 'PBC Foundation' who host this site, here, on the (wider, all-health-related website) 'Health Unlocked'.
The 'PBC Foundation' was started over 10 years ago by it's founder, Collette Thain, who had been diagnosed with PBC, but could find very little about PBC, or help available.
On the site, you will find a copy of the published guidelines (or protocol) that have been worked out (in the last year or so) by the UK's and Eu's leading experts and consultants on PBC: these give the 'official' diagnostic procedures or criteria for PBC. Although symptoms - such as the gastric pains etc. that you describe - are important in helping consultants to begin to search for what may be wrong … the absolute diagnosis of PBC should be based on rigorous medical testing and examination.
Officially, there need to be 2 out of 3 positive tests for a diagnosis of PBC: these are:
1) the presence of AMAs, (antimitochondrial antibodies) … and/or:
2) abnormal results for lfts (the 'liver function tests') that are typical of PBC … and/or:
3) a liver biopsy, which shows damage to the minute biliary tubules of the liver, that is typical of the damage found in PBC.
Usually … 1) and 2) are tested first, and if both are present, then that is enough for a diagnosis of PBC, and treatment with Urso usually begins.
If one of these is absent (some people with PBC don't have AMAs) then a biopsy will usually be done - although increasingly a fibroscan may be done, first.
The common early symptoms for PBC are: itching, tiredness, joint and muscle pain, as well as various digestive upsets, but although symptoms should be taken into account when diagnosing someone, the diagnosis of PBC should always be based on the 3 medical tests listed above. If you have been diagnosed with PBC, then you should fit in with the criteria above - you should be able to see and read all your medical notes to see what has - and has not - been done.
Meanwhile, the pains you describe are not to be ignored, and I would expect a quicker response from my GP and/or consultant if I had been diagnosed with PBC and began to have disturbing pains.
NB Having, or not having, certain symptoms does not invalidate anyone's 'official diagnosis', nor their right to be further investigated if they are worried or in pain.
Thanks for the reply. I have positive AMA but my Liver function showed a low number on my last test. I have had a fibroscan but this was inconclusive this time as it did not give a consistent reading. I have had more bloods done and will have another scan on my next visit so he can compare my levels over a few months. I would say my stomach is more uncomfortable than painful. It just feels as though it’s being squashed. But I will get it checked.
Wow. You really learn something new each time, reading through these posts. If this issue is really bothersome, you might want to see a doctor right away instead of waiting for your next specialist appointment. Why suffer in the interim?!
Hi I suffer the same. I would suggest you ask them to check you don’t have a hiatus hernia. During a recent endoscopy they found I had one and a gastric polyp. Good luck.
After posting a response to you I had second thoughts. I had assumed anyone in serious pain would get their doctor to investigate thoroughly. But I had forgotten that I myself ignored very serious pain!! I strongly reccommend that you ask your doctor to investigate the cause urgently. If you feel that it will be difficult to push for this at a time when everthing seems "up in the air", PBC Foundation will help you to express this additional concern to gp if that would help you. Pain is always a warning. Best wishes
Thanks for the reply. I wouldn’t say it is a pain. It’s just an uncomfortable feeling just under the top of my chest. More of a pushing feeling on my organs.
Thanks for your reply. It is a constant effort for me to think about how much, what, and when I eat. If I make the effort it can be at times tiring/boring and if I don't it can be uncomfortable. But it's good to be reminded here, like you have done with your post, it isn't always PBC, it isn't always serious, and it isn't always to be ignored! Lucky we are strong?