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Hi Everyone

I recently got a diagnosis of PBC. I am due to have a MRI 6 months hence. It's a shock Currently I have few symptoms and on the whole eat veggie, also am very active at nearly 58.. I am dreading that down the line my world will crumble. I have climbed back over last few years from deep depression and bright my weight down by 3.5 stone. I now have a very busy part time job i enjoy after a long time struggling to get back to work. It feels unfair and the thing is I am not unique in any way. I should think we all will also be dealing with a grieving for the life we expected to have. I am so glad I found this site. I live in Ireland. 2 other people on my docs list. They are still well and diagnosed 10 years ago. i grew up in a heavily industrialised area in the UK. Has to be some connection. Plus stress. Autoimmune? How do I stop fighting myself on such a deep level? Anyone else find emotional/mental approach has any effect? I have no patience for mindfulness am also possibly ADHD. The non stop physical activity might on the other hand be helpful .Not sure about the mental side. When I got diagnosed I found myself speeding up as I panic attacked. No one knew my being in a great mood was my ott reaction to suppressing a feeling I wanted to scream and rage at the hand I'd just been dealt. Then I thought wait a minute -I am the same as before: healthy. I have had this for several years at least and symptoms I do have tell me it was there in my mid -late thirties. So I calmed down and thought- right I have work to do here. Take the meds and a good look at holes in my already reasonable diet. Just wondering would following a Coeliac diet be a way to begin?

Last word (and I can write on ta7p so sorry it's long) I really hope everyone finds a way to enjoy the holiday season ! I am so thankful this website exists. 😊

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15 Replies

  • Hi Anir. I think when we are all diagnosed we go into panic as the first thing we do is 'Google' PBC and read all the outdated info there is out there. If you haven't already done so, find the PBC Foundation and share your worries with sympathetic people on here. Do you have a Gastro Consultant, are you on Urso medication? The quote I have read the most on here is you are likely to "die with PBC than from PBC" so let's hope you stay well for many years to come. There are many people who do not develop the itch or fatigue, I have neither and although diagnosed 4 years ago, had elevated Liver Function Tests for 3 years before that.

    I would definitely recommend you do your own research re diet and lifestyle. I read a book which suggests an anti-inflammatory diet can help all those with Auto Immune disease, cutting out dairy and gluten for example, but as I have yet to discuss this with my Consultant I have taken small steps to improve my diet by cutting out the obvious badies like convenience meals and take aways, and eat more fruit and veg. There is some debate over whether you should consume any alcohol but I do enjoy a glass every now and again (my Consultant has never told me to abstain totally).

    You might think our condition is all consuming but after you have lived the the diagnosis for some months, and probably not feel any different to before you were diagnosed, you will come terms with it not being 'that bad' maybe. Always think there is someone worse off out there....I have a friend with MS, and a friends child has Muscular Dystrophy and at the age of 18 is confined to a wheelchair with no use of his arms, he will not live beyond 30. It would be interesting to know the oldest person on this site and how long they have had the condition, I expect the info is on here somewhere!

    Good luck, don't let it spoil your holiday season x

  • Hi Katherine thanks so much for replying .yes I am on urso (and while reluctant strongly advised by my gp to keep on my low dose of Sertraline). I also have a gastro. Yep I will get used to the idea .it's just about a week later. So still adjusting. And you are right. I do know also of others far worse off. What you describe sounds so devastating. I can't imagine what your both friends are going through. Thankyou for the diet advice I thought gluten should go... I did make a little promise to myself yesterday that once a month I shall eat and drink the forbidden fruits . I know also Dr. Google as my friend says, is the first place I and many of us look -and scare ourselves witless! Well I just joined the foundation today. Found it yesyerday. Already I don't feel so alone. I do hope you and yours also have a lovely Christmas -with a glass of wine -I wasn't going to but reading your email-yes I give myself permission to celelebrate the season too!

    A Happy Christmas to you and everyone reading this post.

  • There you sound more positive already ;-) As regards cutting out gluten, I have a friend with a serious gluten intolerance. I was asking her if she could recommend any good gluten free breads/wraps/biscuits she had found in the supermarkets. She said 'go into the supermarket and look at all the gluten free things on the shelf'......"cut them ALL out of your diet" and what she means is (if you are strong willed) do not eat bread / cakes / biscuits etc, and do not replace them with gluten free alternatives which are loaded with sugar and other bad ingredients. If you want to take it to the nth degree you even have to look at sauces, gravy powder and spices for example which might all contain gluten. I have changed from dairy milk to soya, and almond milk on breakfasts, but again, be careful of some ranges with hidden bad ingredients. Alpro brand = not good! Rude Health brand = very good. I'm researching and learning all the time!

  • I hadn't thought of that with gluten free . I did find those shelves... I thought Soya was bad for pbc? Well all a steep learning curve here. Even with a reasonable diet. There was the chops bicces, crisps. Crisps= rashes for years now.stopped eating them already.shame. well goodnight! Might get a little more sleep!

  • Hi, Being an autoimmune disease living in industrial area would unlikely be the cause of it. As of yet the cause of it is not yet known, but we can live with it, of course there is a few changes to lifestyle and diet. Take it step by step don't look for problems , as with any illness PBC affects us differently. There is a lot of good folk on here so there is someone to chat to, it is always better to chat to your doctor.

  • Thanks Brummi .True 're the gp too.i have a good one luckily.

  • Welcome, I'm not sure about your connection to heavy industrialised areas. I've lived in the countryside all my life. It's more like some of us do & some of us don't. It just happens. Hope you have joined the foundation they really helped with my initial shock xxx

  • Thanks so much Teddybear7. Yeah I have joined. I am glad I have. People who I can know will understand. Well if its not directly, environmental then perhaps chewing paint as a child living where I did; and also a life time of painting (a hobby my job is separate!), I do wonder... But i supose the first question to the gastro prof was did i do this to myself? I think part of the sheer disbelief its so seriously life threatening. And no concrete answers offered. The first point where I found myself on the defensive about the alcohol associations (I don't drink anyway) was when a senior chemist where i got my initial meds script filled, She also gave me a cold stare. I even felt that maybe i was guilty on some level. To be honest i felt even more condemned. So perhaps the panic but hasn't quite subsided yet😕 How long have you had yours? How's your health?

  • I'm going on 4 years now. It's taken a bit if getting used to, but the foundation has really helped. I don't think of it as life threatening any more. More like some lifestyle change I've had to get used to. I'm pretty symptomatic, so I struggle at times. The fatigue is the worst thing to manage. I've got quite a few other auto immune conditions but the thyroid one hasn't got me yet but they do keep checking. I'm 56 & retiring early in the new year, I'm lucky enough I've worked hard to be able to. I currently work 7 days a week, but I can't manage it much longer, pacing myself & topping up my energy battery is getting harder. I need time to watch my diet, & take things a little easier. I've also got another possible condition waiting for a DNA genes test due April, which is going to be more complicated. So I've forgotten about wondering why or how, I live for today enjoy what I have & give thanks it's not cancer. Xx. There's too much of that around lately xx Happy Christmas.

  • Thanks for that Teddybear7, yes before I knew I was scared it was cancer. We do have to just get on with life too as best we can. You have a very hard working life.. just wondering if potential stress is a factor in autoimmune diseasease? Its something i have heard. See i guess i am still looking for explanations! I also think just getting on with life anyway is all thete is to do☺ i am two weeks in thinking and talking about it now. While I have a nice doctor she knows very little. The gastroentologist told me that there was nothing I could do to just carry on as normal. I don't drink anyway eat very little meat - more fish. Ofcourse diet needs adjusting but it's been ok. I also am going to keep reading . My worse dread? Seeing my daughter soon (a lovely young woman who loves her life) and having to sit her down and explain what her mother has to possibly offer for Christmas. So you see I have no time to feel sorry for myself..

    I really hope you get the rest you need soon. xxx

  • Hi Anir29, welcome to the site! I'm living in Waterford, Ireland but I'm originally an Essex girl. I've been in Ireland about 45 years. I was diagnosed two years ago at the age of 72. With Sjogrens and PBC- never heard of PBC and I didn't. have any symptoms until I started Urso! Then I realised that I had suffered a few things over the years and had put it down to old age. I'm not very active but then I never was! I just bought a book called The Autoimmune fix by Dr Tom O'bryan.

    So I'm currently off gluten,dairy and sugar And when I've cracked that I will Go off night shades and eggs until I'm the best I can possibly be. Of course I will reintroduce these foods when I'm sure I'm not affected by them - that's the plan anyway. Dr Sandra Cabot the Aussie liver doctor is very helpful as well. The friends on this site are also very comforting and caring and helped me a lot over the two years. Kandiepat

  • Dr Sabdra Cabot wrote the book I mentioned healing Auto immune disease. (In the UK the cheapest place I found it online was Wordery). Her 'theory' is that ALL auto-immune issues start with a 'leaky gut'. What is meant to go through your intestines and out of your bowel, leaks into the blood steam instead! She gives cases in her book where people have have very high liver function test, been told they need to have thyroid removed etc etc but have made themselves well again. It makes compelling reading and I am tempted to follow some of it. I asked my GP for her theory on leaky gut and she looked confused and said she had never heard the term!!! I will ask Gastro consultant at my next appt x

  • Hi Katherine thanks for info. As I say my gp very nice person. Knows nought about pbc. This site and the people on it is my source of info right now. I still get daily bought of being scared on my own but it's getting better. My job has kept me very busy like a lot of people here- probably more rest even without the sleep -I have had crazy insomnia for years. Now at least I understand it's not bad habits. On any autoimmune pattern being related to liver- yes it makes sense. Thanks for the mention 're Dr.Sandra Cabot. I also wonder about the nature of our first vaccinations? I am not saying we should not have any- just what how and when should be reappraised perhaps. While there is evidently a lot of medical ignorance about it many forms of Autoimmune illness do seem to be on the increase everywhere. Huh and previously on the good days pre diagnosis I secretly thought myself fine underneath the various seemingly unrelated symptoms- evan tried to embrace the sleeplessness. sorry just a bit morose this early morning. I don't know it's rotten for all for us good people isn't it? Still I will take my meds and like everyone else inform myself all I can. The possibility that either of my two adult offspring may develop it is horrific that's my big motivator. Bye for now.

  • Doctors don't have time to specialise in auto immune illnesses. Although I'm really into Dr Sandra Cabot and Dr Tom 0 Bryan I'm also looking into LDN, a low dose naltrexone - it's very exciting it's a low dose antibiotic which is working with some cancers and some auto immune illnesses. My son has Sarcoidosis and he has found a doctor who uses LDN, so who knows!! We can't just stand still and not go looking out there....... Kandiepat

  • Very true - not enough time..

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