Hi - I know that having PBC means also having digestive problems - but lately they've been horrible! I was diagnosed with IBS almost 20 years ago, but haven't had issues with it for many many years. Now it's awful! I get dizzy from the pain.
Does anyone have any tricks to help with digestion?
Thx, Rebecca
I don't have any dietry tips as such, however I do have digestive issues and was dx with IBS. My consultant sent me to a dietitian due to the symptoms being really bad, they put me on the FODMAPs eating plan. its not a diet as such it's to find out if there are foods that cause any of the digestive issues. i can say it's helped about 70% of the problem. I am now on the reintroduction phase where you do a food challenge for 3 days of all the high FODMAP foods one at a time, so it takes time to eliminate the culprit/s but it is worth the effort.
However if the pain is really bad I would go to the doctor first to get it checked out, my Gp duly did a follow up scan and I was also found to have gallstones so you can have other problems arise. I don't think IBS should cause the pain to be that bad, but I may just be lucky I don't get a lot of pain just bloating issues.
Sorry you're having such problems with pain, I think you should have it checked out with your GP. I have had a lot of bloating from time to time since diagnosis three years ago, but no pain. Hope things improve for you.
Hi, Sorry to hear of the problems. Good advice from Candy, do check it all out: and I hope others come up with useful lines to follow as well.
My suggestions are a bit left-field, but it may be worth checking if you have endometriosis. I was always told I had ibs - very dismissively it seemed, with nothing much done beyond a failed colonoscopy. However, I eventually went to see a really good Gynaecologist, because when I turned 50, and had been told to stop taking the pill - 'cos of my age - my 'period pains' were becoming almost constant, and merging with all the other pains. A lot of the month it could have been almost anything with hip, and groin pain too. In my case, it was the Endo, and I had a mirena coil fitted and most of my pains disappeared after a few months with it - magic!
Another line to check is if you are coeliac. A wonderful new-to-me GP decided to check this about 6 months ago, when I was having a specific gut pain - like trapped wind in the appendix region (sorry if tmi, there's a sphincter there between 2 parts of the gut, and this is often a problem area in coeliacs). For the coeliac test to work, you have to have been eating food with gluten, regularly. However, since my endometriosis fears, years earlier, I still avoided bread, pasta and other obvious gluten foods, and had stuck with that despite the coil working its magic. But now, I had 4 mad weeks of bread, wheat pasta, hot-cross buns ... the lot - and it felt great - strangely the pain seemed to go. The test came back negative, and I've carried on eating gluten foods with no ill effects. But Coeliac Disease is also often dismissed as ibs, so it may be worth getting it checked.
It seems that people with autoimmune conditions, like PBC, often have others, such as coeliac - and interestingly the latest research into endometriosis is now suggesting there may be some autoimmune evidence for it. When it was thought I had PBC, I was checked for many other obvious autoimmune conditions - Sjogrens syndrome, Lupus, Hashimoto's etc - and you should have been too,as they often go together. But as far as I know coeliacs and endometriosis are not included in most checks.
As I said, all this may be way off the mark, but I thought it worth mentioning. Hope you get some answers.
Take care,
Gritty.
interesting - thanks for the info!
Hi Gritty, that was a very good answer. I was curious about the hip pain cause I've been having that a lot too, can even remember exactly when it started. I'm looking to get a hysterectomy this year since I've met my out of pocket. Anyway, my question is, did you have any overactive bladder symptoms?
Thanks for the positive comment. I've never had bladder problems, so can't help there, I'm afraid.
In PBC-folk, the hip pain etc more often gets linked to osteo- problems, as PBC can cause reduced Vitamin D absorption, which leads to a calcium drop, resulting in osteoporosis and other joint and muscle issues. Have you had all this checked to find a cause for the hip pain? I think vits and mineral levels in PBC should be paid more attention to.
Also, forgive the nosiness, but why a hysterectomy? Do you have endometriosis? Forgive me if this is just not relevant, but just thought I'd mention that hip and groin (and elsewhere!) pain can be caused by endo, if so, have they done a laparoscopy to check exactly where the endo is?
Sorry, if I'm quibbling unnecessarily - you take care!
Oh no bother, I don't mind. I've got fatty liver and the antibody, but as of yet no PBC. 🙏🏻 Thank goodness, but I do have Endometriosis and Adenomysosis and/or PCOS. The Endocrine did mention that last one due to my insulin resistance which is probably what help cause the fatty liver too, but I haven't had any hormone testing as of yet, so that's still up in the air. My uterus is enlarged and the lining is thickened. A couple of years ago, I had an ablation and my tubes tied that's when the Endo was discovered. I worry about getting cancer later on down the road, in part because my grandmother, I believe died of uterine cancer. I'm having some pelvic pain, but not anything that I can't handle as of yet, but had hoped that getting the hysterectomy and Endo removed would possibly help with the frequent urination issues. Also, the dr. who did the ablation said that a hysterectomy is likely due to the adeno and menstrual blood building up behind the burned lining. I have some malabsorption issues, so D, and b12 has been low, but have been supplementing it and they were normal on last check. I am supposed to be taking iron too, but haven't been doing it lately. I did have an X-ray of the hip and it was Normal, except I think some mild bilateral wear on both hips, which I believe is normal for my age. Sorry for the rambling and thanks for the reply. I learn more from y'all than I ever get from the Drs.😊
Do you check the Endometriosis site here on 'Health Unlocked' ? It's hosted by 'Endo UK', though their advisors rarely step in, but it's good to read for info. A woman who posts on there, called 'Lindle' is amazingly knowledgeable about Endo, and is setting up her own site, soon. Two things I've gleaned from her - and a recently set up local 'Endo Group' - is that endo needs to be 'surgically removed', lasering just grows back. Also that it's important that any removal is done by a 'Specialist Endo Surgeon.' In the UK they are found in 'BSGE Clinics' (lists on the 'Endo UK' website) - general gynaes are just not well enough trained in the searching out of all possible areas of the abdominal cavity during laparoscopies, nor the identification of different forms of endo. Also their surgical skills for removal are expert - as it's what they are mainly trained for, and do.
Realise this is not much use if you are not in the UK. Take care, hope all goes well.
Thanks, for the info. I do remember Lindle she did seem very knowledgeable. I haven't been on there in awhile and the bladder issue wasn't as bad then. The dr. I'm going to go see is out of a Endometriosis clinic in St Louis at a teaching hospital and they assured me he'd be the one during the surgery and not a resident, so that's good. Thank you for the well wishes and stay healthy. 😊
Actimal or a glass of milk with small bites of bread and a little butter if you catch it coming on earlier enough, also hot water drink if you can 
thanks
Where abouts is pain ?
Think you should go back to docs as liver disease or ibs gets blamed for lot of stomach.i had agastroscopy to check for varices and whilst they did discover i had ulcers...which i had no idea i had .
Im not saying you have aomething else but it is worth getting checked.gallstones can also cause lots of pain
If it is all down to liver ask to see a dietician ive just seen one and she was really helpful...wish id seen her years ago.
Tips...eat little and often.
No alcohol or stuff containing it.
Avoid orange juice anything too acid.
Lower fat is good as its easier to digest.
Please understand these are the things that help me and its been trial and error.
Hope these help...oh and have some supper.
Best wishes cazer.x
I do have a stomach ulcer but it's not the same pain - it's hard to explain - it's like an overwhelming feeling that causes me to feel like I'm going to throw up all the time - and I feel like I could stick a pin in my lower abdomen and pop it to relieve the pressure.
Just a point for those who do not have ulcers ..I was told to take small glass of orange juice at each meal to help with iron absorption...iron can get low with Pbc and more so with chirossis ..with ulcer I can see it isn't good to have acid my drinks.
Sorry I should give more information...
So I have a stomach ulcer - not the same pain.
Had my gallbladder out when my son was 7 months (more than 9 years ago)
I was in emerg a little while back with similar feelings and they said I was 'backed up' and sorry for the TMI but I "go" more than once a day - so I don't see how that can be. But something digestively isn't working right.
It's an almost constant feeling of needing to throw up after I eat anything (although sometimes it's not so bad) - but I've deduced that it doesn't matter what I eat .
At first I thought it was the carbonation in the caffeine free diet pepsi so I went without - still happened. My next thing to try is going back to no-carb. Maybe in all my dallying into the no carb, low carb and carb cycling worlds, I screwed up my own system - I have no idea.
I feel like my stomach is twice as big as it should be - and super bloated.
Sorry for the TMI! If in fact it is that I'm "backed up" please someone give me some great tips so I don't have to use the enema they gave me last time!!!! 
I'd say keep a record of what you eat and how it affects you. You can eliminate the things that seem to make it worse. Best of luck.
When did you last have a scan and bloods test...just wondering if your pbc is a bit worse?
I have had awful nausea and been sick at times.ive got some tabs for nausea.
I do find that if i have too large a portoon in one go i feel like im gping to b sick.i now eat less than 1/2adult size meal and dont drint too much liquid at the same time.
I then eat something else a bit later.this helps me.
Have the checked you for ascites?
Hope you find an answer
I don't have scans - only had a biopsy done. I have blood tests done monthly and the last ones I had were on Monday. My PBC seems to be improving - or at least my liver function numbers are .They're cut in half from when I was diagnosed.
when I started on URSO it gave me an upset tummy - I wonder if that's what could be doing it?
I don't know what ascites are? Lol so I'm going to say no I haven't checked them
Hello Becca - sorry to hear you are suffering.
I too experienced lots of pain with diarrhoea which I tolerated for years because I thought it was the PBC. It was NOT. My daughter gave me a book about gluten and I decided to try cutting it from my diet. The very next day I felt so much better and within a couple of weeks I felt normal again.
Delighted I told my GP and he arranged a blood test which showed I had antibodies showing I was reacting to gluten suggestive of Coeliac Disease (another autoimmune). So he referred me to a GI who arranged a gastroscopy and colonoscopy. They took biopsies and they have just confirmed that I have Coeliac Disease.
I suffered unnecessarily for a long time, blaming the PBC. I would suggest you ask your GP for a blood test to see if you have gluten antibodies. Coming off gluten has transformed my life. Best wishes. Diane
thanks, I will mention that to him the next time I see him I haven't been able to pin down what food is making my tummy react - even tea makes me feel not so good and bloated....but I'll mention it for sure! thanks
Hi Rebecca,
Sorry to hear about your digestive pain. I can totally sympathise, as am going through a big flare along these lines at the moment too. Stomach discomfort & bloating, nausea, ache around the liver area when I eat.. Needing to eat very plainly at the moment. Not fun.
Not found any solution yet unfortunately. I find peppermint capsules often help with indigestion/ bloating, worth a go. Chamomile and spearmint tea are soothing too. Love food and snacking, but at the moment eating slightly smaller plainer meals.
Unfortunately IBS seems to be the catch-all medical term, so its not always looked into too deeply.. If you havent had one recently you could ask for an US scan/ fibroscan, to check if there's nothing going on.
Hope it eases off for you x
Hi Rebecca,
I've been taking digestive enzymes and they help me. I noticed a difference within a couple days. You may want to see if they would help you too.
Hope you feel better soon!
Judy
oh thank you - I'm going to try that! It's better than what it was - but now it's ongoing still and uncomfortable (especially at work)
GP problems?
My Mom diagnosed with PBC just couple of days back. 
Balance problems !!
Life expectancy with PBC
Holiday insurance problems
