New to the group and saying "Hello!" :-)

Hi everyone,

I'm Mel, I joined the group a few days ago and thought I would introduce myself. I am 40 years old and have 3 small children aged between nearly 7, nearly 4 and 1. I was diangnosed in Mar this year after the birth of my 3rd child. In pregnancy I had a high liver function test and experienced itching. For the first couple of months I followed the Dr Sandra Cabot Liver cleansing diet and after 2 weeks of being on Ursodeoxycholic (2 2x a day) my bloods halved! I was felt positive however found it hard to get my head around it all! I turned 40 in May and then unfortunately spent the next 4 months with my head in the sand... drank far too much alcohol, ate all the wrong foods and refused to even think about it all!! 2 weeks ago seemed to be a turning point for me and I hope I have turned the corner and I feel I am now starting to accept and hopefully move forward!! I have a beautiful family and the most amazing friends around to support me and I look forward to getting to know you all. Much love - Mel xx

32 Replies

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  • Could you please describe a bit the highlights of this liver cleanse diet? Thanks :). I don't know about that, but I do know (hobby and work too) what diet can do for the better or the worse:).

  • Hi Cristina,

    She recommends the following if you have PBC:

    Avoid ALL margarines and similar type spreads

    Avoid deep fried and fatty foods.

    Avoid all dairy products and gluten (found in wheat, rye, oats and barley). This is essential in order to improve the immune system.

    Limit chicken and turkey that is not free range, as this contains artificial growth hormones, antibiotics and steroids that increase the liver's workload.

    Avoid ALL alcohol.

    Drink 2 liters (8 - 10 glasses) of filtered water each day.

    Avoid artificial sweeteners - see dorway.com

    Vitamin A, Vitamin K and Vitamin D replacement therapy adds fat-soluble vitamins lost in fatty stools.

    Follow the principles of "The Liver Cleansing Diet" by Dr Cabot. Make these principles a way of life.

    And she has 12 principles which she recommends for all to follow as a way of life which are pretty much what you would expect when following a healthy balanced diet. I am very interested in the idea of treating illness with nutrition and found her advice easy to follow and sensible. Her website details are liverdoctor.com/primary-bil...

    Mel xx

  • Hello,

    welcome to the group. Like you I have been diagnosed this year. I can relate to what you say about swinging from trying to be positive and healthy and sticking your head in the sand.

    I would suggest (if you haven't done this already) is join the pbc foundation and get one of their "Living with PBC" compendiums. It has a large section on diet. The PBC foundation has two of the UKs leading liver specialists acting as their advisers. So you can be confident their advice is good. I had a look at Dr Cabot's website. Hmmm. seemed to be a lot about selling supplements to me. But I'm just a cynical old git!! However - as you say - most of the advice seems sensible. With one exception - dairy products. I've been told that I'm more at risk of osteoporosis due to pbc and in fact have been diagnosed with ostopenia - I think that means v mild osteporosis (I'm 45 by the way and pre menopausal). Therefore I've been told to eat more dairy. I can't think of how on earth dairy products could harm the immune system. Obviously masses of highly processed hard cheese might be a bit hard on the liver but dairy is a good source of all sorts of good nutritious stuff. All things in moderation I say!

    Take care and stay positive. If you need help with staying postive get in touch with the pbc foundation. That's what's worked for me anyway. Jenny x

  • Hi Mel,thanks for sharing,i am sorry to hear,that you were diagnosed with PBC,i was also diagnosed a while ago,and it is scary to read about it,in the internet,on the other hand,doctors dont know much about it,but i am very galsd that i found dr Sandra Cabot,i did order the book,on the liver cleansing diet,did not get it yet,but she told me there is even a chance,of being healed,from PBC,if we follow a healthy diet,well i do know people that had cancer,that were healed,the body can heal itself,if we help him,and prayers can also help,blessings for you,does oats also have gluten?

    thanks

    Miri

  • I actually agree with Mole, I once looked on the Sandra Cabot website and thought it was selling a lot of supplements too. (I'm an even older 'cynical old git' - I'm 48, diagnosed 2yrs ago!)

    I think if one was to not eat most of what this diet recommends then I think majority of us would be stuck on just what we should eat.

    Some is common sense now (ie alcohol), others not so certain about. I for one do not want to send the rest of my life on artificial supplements (ie vitamin D or B12 jabs at the doctors) unless it was deemed absolutely necessary. I'm doing fine at the mo with all this (got to have a recheck of the B12, folate and ferritin a bit later this mth but the first 2 were normal last time).

    I don't think in this century now we can guarantee anything we have as being more 'pure' due to farming and growing methods if we are relying on buying our 'daily bread'.

    I certainly do not want to have a problem with my skeleton as I get much older (wouldn't give a fig once I get to my late 60's mind, no offence to anyone one here who is that age and above), so I do have milk (skimmed in drinks, sometimes in cereal and cooking, semi-skimmed most of the time with breakfast). I am fortunate I am not a cheese lover but I do have the odd slice of Edam on bread and odd occasions I do make my own cauliflower cheese.

    I do have a lot of gluten-free as my son has a minor problem after 2 courses of antibiotics and he finds if he limits wheat he's ok so we have other variants (I buy brown rice flour, rye or soya to use). For me I've actually found tho' at times I feel better I can't say I am any different now to how I felt - great - on a yr on urso, I'm on par still but my bloods are doing good.

    There is apparently no cure for PBC and I have read it can go into a remissive state of own accord and may or may not ever flare up again but regardless the PBC is still there. I'd go for this one myself as if one thinks about it, whatever damage has been started in the bile ducts, that damage will always remain and it cannot be repaired but the liver could get back to a reasonable state and life could be relatively normal.

    But I like to keep an open mind and for me it a case of still trying to figure out if I can rid myself of the itch (that has been with me later evening again for the last 6 nights), if I could do that then I would feel 100% normal (as I don't tend to suffer from fatigue these days, just tired later in the day if had a restless night prior due to the itch!).

  • No offence taken about the age thing I am nearly 63 but do worry about the skeleton thing as with 6 young grandchildren i want to still be able to do the fun things with them. Take care x

  • Hi Mel and welcome to our little community. It is a lot to take in when you are first diagnosed with PBC - my children were 5 and 7yrs when I first became ill; and that is the hardest thing to bear. But you have had some good blood results: looks like URSO is doing its stuff. You will feel a bit up and down to start with. Do ask us any questions you want to, (there is usually someone who has expereinced the same and sometimes many!) Join the PBC Foundation and get your handbook that has alot of information in there.

    Take care x

  • Hi mel welcom, im ann have pbc 3yrs, if there is anything you want to share ask about or just simply have a rant or a moan this is the place to do it, youll always get an answer and an ear, yuoll start to get your head a round it all takes time, listen to your body. Ann x

  • Hi

    I live in NZ and the PBC foundation has been my life saver . I was diagnosed 6 years ago and that first year was the worst getting used to living with PBC and the thought of what lies ahead and beneath. getting it all into perspective is a jouney in itself.. I have only just found the PBC blog and it seems no one from NZ is on here but a few from australia. .

    I owned a winery and made wine . We had just sold it thank god!

    I was a big drinker and although didnt find it hard to give up alcohol (too scared to drink) I drank wine most nights because it was there and I looked forward to relaxing and it wasnt until I through PBC, looked around me and at myself did I come to the conclusion that in an odd sort of a way for me PBC was a warning but also a gift. Older woman drunk are not attractive and so many of us in and out of the wine industry drank.

    What am I saying...My specialist has told me last year one or two drinks a week wont hurt me so I occassionally have champagne. But it is a slippery slope. I am in London for my daughters engagement and had a few the night before last and know it was a very bad decision.Cause and affect its in my own hands as far as that goes.

    Tomorrow I fly back to NZ

    This blog is fabulous.

    I am 62, love my life.

    If anyone makes it out to NZ give me a shout.

    Im right t/here!

  • Hi boneytoys, Just thought I would say I have done my share of drinking and have bartended even after my diagnosis. The one to two a week can still be to much, my doctor told me the same thing. Especially if a person is a 'drinker' anyway, especially socially..............that always seems to turn into more. For me it was better to just go cold turkey. As for older woman drunk not being attractive, trust me, after bartending for many years and seeing pictures of myself..............NOBODY is attractive drunk:)

  • Wow, thank you for all your lovely messages! :-) So pleased to have found this group!

    Mole - I totally agree with you re Sandra Cabot and the selling supplements! and her books, so, I am as with any type of "try this diet and I'll cure you of your disease etc" programmes wary and open minded about it all. I also make sure I read up on any claims before avoiding any food group to make sure I am either getting the vits/minerals etc from other sources or making an informed decision based on my body, my limitations and commen sense. I was at first very wary of the avoiding diary advice but took it in the literal sense of just avoiding and not cutting out completely. There is another school of thought that is calcium from cows milk may not be the answer to our osteoporosis situation and that we barely absorb the calcuim in cows milk (especially pasteurised) and that it may even increase calcuim loss from the bones. Something to do with how the milk acidifies the bodies pH which in turn triggers a biologcal correction. But again this is a view based on some scientific studies (like 1000s of other scientific studies on just about everything and anything.. maybe there should be a scientific study done on scientific studies!!! ;-). However greek style natural yoghurt is an exception or fermented or cultured diary products. But like you I am everything in moderation kind of a girl!!

    Miri - Oats themselves don’t have gluten in them but from possible cross contamination from fields of wheat grown close by or from the factories that process them however I drink oat milk and oat products which are labelled gluten free. I think I may be going over the top slightly as I do not have an allergy to gluten but if it may cause any type of inflammation to my insides then I am trying to avoid if I can. However it can be expensive so I am not always that strict. I am a huge believer in we are what we eat and yes I believe we can make ourselves feel better by the types of food s we eat! I have been to many talks where people have cured themselves of cancers and auto immune diseases and I think the power of food and the mind is immense!

    Peridot - I stuck Sandra Cabot's diet for 2 months and cut out everything she recommended and felt amazing! No more mood swings, itching, my periods were a breeze, I lost 10lbs in weight and my clarity was fantastic! Saying all that I could not keep it up! It was just impossible for me to live like that 100% and even when on the diet it was impossible to live a pure diet as you say due to farming and growing methods and because of feeding the family and how hard it was to fit that in with everything else which was going on! My liver specialist took a look at her info and said it would do no harm to take on her recommendations in relation to the supplements but he didn’t think it was necessary to avoid the gluten and dairy and just to stick to a healthy diet! But I’m with you on the keeping an open mind!

    Thank you Val02 and annaflanagan, I think that was one of the hardest to get my head around about how it was going to affect me being a mum and my quality of life with them. In pregnancy my itching was so severve I felt like my life was on hold and I was watching everyone else around me living while I was stuck in hell! I couldn't do the simple things in life like sitting still while reading them a story (I couldn't sit still for more than 10 mins without getting up and pacing the room scratching), sit and watch a movie on a rainy day, eating a meal at the table without jumping up every five mins and the list went on. And the biggest thing for me is the kids may end up having it too! That one makes me cry! But I have now joined the PBC foundation and asked to have a look at the compendium. And already by joining this group I feel so much more positive! :-)

    Goodness, this is turning into a essay so I apologise (nearly finished, promise!) but boneytoys I totally get what you are saying about it being like a warning. Before I was diagnosed I spent my life eating and drinking what I wanted and even though I do live a healthy life it wasn't as healthy as I thought or wanted it to be and this has kind of forced me into living a more health concious way especially in relation to alcohol. I also think knowing what is wrong puts us in a better position as in the choices we now make. My friends tell me I'll probably out live them because I will live a healthier life! I won't go into all this now but for me tackling the alcohol is the hardest thing for me! I live on an Island were drinking booze is like breathing air and not to drink is not the norm. You don't have to be a rocket scientist to know too much alcohol isn't good for you and especially when you have liver disease, however rather than give it up completely (tried that and failed) I have given myself the limit I had in pregnancy as recommended by the department of health (1 or 2 units once or twice a week). Deal with social situations without booze (I drive now and so this is my perfect excuse) with a view to knocking it on the head for the exception of special occations only (ie weddings) as recommended by liver specialist! Watch this space!!!

    Thank u all for taking the time to respond to my message and if you've managed to get this far without falling asleep thank you for reading this too!!! :-)

    Love Mel xxx

  • Hey Mel, I totally understand how you feel about the drinking thing. I have been there and when I decided to quit completely, even no more socially, didn't get alot of invites. But I tell you what I did get, a more peaceful feeling, a clearer head and the knowledge that I make the decisions in my life, with prayer, not my friends or alcohol. The friends who I still see that drink and party alot, do not pressure me and we do stuff together also. I just believe you shouldn't feel pressured for any reason or care about what people think I mean you just stopped drinking, you didn't commit a crime or anything. Take care of you:)

  • lol re no body looks attractive drunk!! What? I thought I looked sexy and had loads of interesting things to say (albeit over and over again :-) ) and danced like John Travolta!! Seriously though not drinking is kind of hard for me (am sure I am not alone here) and even though it has only been 3 weeks since having a drink this is quite a big thing for me. Drinking is a big part of our social circle and even though I stopped drinking heavily once I had kids (hangovers and kids don't mix ) I did enjoy a glass or 2 sometimes a few nights a week and then at birthdays, dinners etc. The first thing most of my friends said was "does that mean you have to give up drinking" goodness we sound like a right bunch of soaks!!! I do think most of it is in my head because they are my friends and they actually totally get it and have the same lifestyle as me so giving up drinking shouldn't be hard. I am looking forward (if not a bit apprehensive) to getting to know me a bit better and not hiding behind booze on social occasions!!! A part of me has always wanted to cut out the booze and I like the sound of a life as you say that is full of peace (ha ha that's not going to happen with 3 kids, 4 if u include the husband!) and waking up feeling smug when you don't have a hangover and everyone else does!! and a clear head in the knowledge that we made the decisions in life. An ongoing discovery isn't it! Thank you for your message! :-) xxx

  • Why don't you make a separate blog post about this diet? :) Maybe some people out there would be interested to try it or at least find out more.

  • Welcome to the group. I I was diagnosed almost a year ago. I am 66, so I guess I am one of the older people on this site. I wonder what I would eat if I cut out poultry as I already stay away from red meat. My numbers for liver enzymes are almost normal, but this last test had my TSH high. AMA is still high but also has lowered since being on Urso and Milk thistle. I will try the cleansing diet, because I will try anything that helps. I have been eating a healthy and balanced diet and lost 15lbs since the end of June. I love milk, even if it is skim, with a few chocolate chip cookies. Don't miss alcohol, but I do miss cookies and milk. lol I wish it wasn't so expensive to eat a more healthy diet. The cost of gluten free bread is $6.00 a loaf in Florida. I have switched to gluten free pasta and my man hasn't even noticed.:) I still intend to live a very long and vital life. I don't feel old and I want to stay that way. This group has been a lifesaver for me. Mel, I am certain you will feel the same way in time, if you don't already feel that way now. I have gotten some great information and feel so much less fear than I felt in the beginning.

    Hugs, Judi <3

  • Hello once again, interesting reading your 'essay' Mrspiggy.

    Found the bit about the mention of milk, well a bit confusing. I know a baby is naturally supposed to suckle from its mother but a lot of mothers find they can't for various reasons (my sister-in-law had an emergency c-section yrs ago and her milk never 'came in') so the alternative is milk formula that is based on cow's milk (tho' some babies have soya milk).

    Interestingly I have in the past read that if one was to lose a tooth and popped it in milk and then got to a dentist quick enough the tooth could be saved due to the calcium in the milk. Not sure if this is true or false.

    I did many yrs ago go through a vegetarian phase where I cut out meat but still had by-products, ie milk and eggs. I thought at the time (and I was only in my early 20's at the time and the phase didn't last overly-long) that cows were for milk, hens were for eggs, sheep were for wool (but couldn't quite work out the pigs) so it was fine to have/use. The phase didn't last long, I missed chicken and fish in particular.

    My children when starting school used to have a third of a pint bottle of milk every morning in class (was free here until Mrs. Thatcher came to power. I had to contribute to my children's back in the late 1980's). So if milk isn't deemed a good nutritional source then the confusing part is why is it still deemed a stable dietary contributor.

    I think if anyone does come up with a suitable diet for one with PBC (or other liver problems) that was well-balanced then I would certainly be one of the first in the queue to have a go.

    On a final note, my husband came home from work last wk with a copy of the latest British Heart Foundation magazine that someone took into work. On looking through it I have to say I personally had to disagree with some of the conflicting things within it. I can be one who can throw another question out if something doesn't sort of add up but even in that particular subject of healthy hearts, to me there was advice that went against some other advice. It's that swings and roundabout theory again.....

  • Hi Peridot,

    I'm not 100% sure on how I feel about the dairy issue, we were brought up on cows milk and given it free in Nursery. The osteoporosis organisation uk recommends a diet which includes milk/cheese & yoghurt and if you read what cows milk contains it does sound like a pretty good thing to drink, however there are also some interesting arguments against it too. The dairy industry is big business and so you can see why we would get hard marketing from them and I couldn't imagine the governments suddenly having a turn around and saying that dairy was actually bad for us in anyway. I've met people on both sides of the debate for and against dairy products, it is something I find quite interesting! :-) (I know, I must get out more!) But like you say if there was a definitative diet especially for PBC then I think we would all be willing to give it a go. I do think there is a mindfield of information out there from specialists and so called specialists which can be just plain confusing and contradictory. So for now I am just going for the a little bit of everything, use my commen sense and maybe listen to my body a bit more and see if I personally have any reactions to these foods. Mel xxx

  • Hi Judi :-)

    Thank u for your message.. yes I do feel that finally I am starting to get my head around it all. I have read some great posts on here already that have given me some new information I didn't know, like how the medication actually works with the bile which has laid some of my fears to rest. The cost of gluten free bread here is just terrible about £3.50 a loaf and it just tastes horrid. I have tried a few reciepes myself and some weren't too bad but I have to keep experimenting. I'm on the gluten free pasta but I do miss the wholewheat one so sometimes I treat myself! :-) I am a huge fan of chocolate chip cookies too! I have a very sweet tooth so this is a challenge for me (on a daily basis!) but I have bought myself some dark chocolate and when I feel naughty I make up a snack of nuts/raisins and some dark chocolate to munch on! And have discovered frozen bananas which I put through my juicer and then sprinkle a bit of green and blacks coca power to make icecream! Yummy! - Mel xx

  • Hi Mel

    I am new to this group too, my name is Hannah and we have a few things in common.

    I am 39 and have two children aged 6 and 7. I was diagnosed last week with PBC it wasnt a shock I had kind of worked it out myself I guess.

    I noticed you were into the debate about dairy food, ive not thought too much about it really but what i would say is that i have never eaten dairy food since about the age of 3 as I dont like the taste of it and I have still ended up with PBC.

    How are you feeling at the moment?

    Cheers

    Hannah

  • Hi Hannah,

    Physically I am fine. Mentally I feel positive but apprehensive and sometimes scared, but have finally accepted my diagnosis. Even though I was diagnosed in March this year I first knew about the poss of PBC in the July last summer so it's taken a good year to get my head around it all. I felt releived to have the specialist confirm it and now I've accepted it I feel I can start to get on with my day to day life without it hanging over my head too much. Yes, I still think about it every day but before I was kind of in a denial self destruction type mood about it where as now I feel calm and eager to just get on with enjoying my family. I have my specialist appointment on the 23 October and I know I won't be happy leading up to that as I haven't had bloods taken for about 5 months but I am trying to stay as positive as possible.

    Have you discussed PBC with your children?

    Mel x

  • I havent Mel hardly told anyone and not quite sure how to word it. Debating not saying anything at all, its easier and saves all the worry!

  • My eldest wanted to know why I was at the hospital so much and why I was making juices everyday so we had a small discussion. I didn't tell her I had a disease but that Mummy just wanted to keep her liver healthy and it was more important for me to do this than others. She hasn't asked any more and seems happy with my explanation, the kids test my juices and this morning she did ask me why we have livers! :-) I've told all my closest friends but not the wider circle. Mel

  • Hi Ho,

    I am new here as well, I hear you when you say you buried your head in the sand. I think I am still a little guilty of doing that. I am plodding my way through full time work still, I die a little each morning and at the end of every day but don't want to change my life. I still drink socially, I use milk thistle before and after drinking but only go out once or twice a month and don't drink that much anyway, not enough for it to be an issue and for me to want to change that part of my life.

    I guess I am just lucky my kids are older and I don't have them to run around after anymore and 19 & 25 they run around after me now lol. You must be exhausted with 3 small kids at home.

    I have changed my life in a million ways and am open to many more changes since being diagnosed but the biggest change was following the slimming world extra easy plan, I have never felt better, I am 34lb lighter and have way more energy when following this programme, would recommend it to anyone.

    Hope you feel better soon

    Dink x

  • Hi Dink,

    Wow, congrats re your weight. I managed to lose 10lbs the first couple of months after diagnosis but kind of went off the rails for a while but back on track again and even in the last few weeks because I've knocked the booze on the head my weight seems to be going down again Yay!!!!!

    Funny thing is is that I was more exhausted with 2 kids ! No idea how that happens! But maybe because I just have to get on with it with 3. Also my little one uses me as her personal taxi service and likes to be carried around!! They certainly keep me on my toes!

    Mel x

  • Welcome to the group:) I was diagnosed 17years ago and I have six children ages 11 to 19 at the time, and had just had my first grandchild. I am now 54 and have nine grandchildren and probably more to come. I understand totally about being upset and over indulgence and even the 'why me' syndrome. I have heard and read about alot of diets and supplements, etc. I take the Urso and I take milkthistle (a herbal supplement that helps rejuvenate the liver). The bottom line is I think whatever a person decides to do has to be what they believe is truly best for them. There is the old saying everything in moderation, let's face it there were no Dr. Cabot's or Urso or any of the information we have now. For myself I believe with the grace of God if I do the best I can with what I know and have, it is all going to work out. Just as a side note, in the USA you cannot have drank or smoked for a certain time frame to be considered for a transplant which I had given up for lent almost two years ago anyway, maybe it was a sign:) Thoughts and prayers for everyone always.

  • Hello Mel, I quite new to the group, and live in the U.S. I have been diagnosed for 9 yrs, but it should have been for at least 15 yrs, for there was a biospy done then, but the Dr. didn't know what disease it was. I actually have seen too high of LFT as far back as 1987. What I'm trying to say, we will probably live a long time with this disease. Just this last yr. I finally started treating the itch. I was so scared at first for the Dr. said: " you may live to be 80 but you will need a transplant! I told few people and kept it from my grown children until this yr. Just from getting on this site, I understood, my daughter who is 38 has a slight chance of having it too, so I told them all. Of course I wouldn't tell small children. I have finally started telling people who ask about, that it is a disease that is distroying the bile ducts, so they won't jump to the conclusion I have Cirrhosis. Welcome to the group, they are so helpful with it all!

    Magnolia

  • Hi Magnolia,

    You can call me whatever you like :-) I have told most of my very closest friends and family but only because that's the kind of person I am (I told everyone the moment I peed on a stick when finding out about being pregnant ;-) ) and then of course had to tell them all again when I experienced miscarriages but everyone is different. I can't seem to keep things to myself (not other peoples business mind!! just my own :0 ) My eldest wanted to know why I was at the hospital so much and why I suddenly started making juices every day so I just told her Mummy wanted to look after her liver. She doesn't need to know anymore than that but if she asked me then yes I would tell her but not any details that aren't relevant to my current situation or anything I feel might upset her. I am so pleased I joined this group because before I just wasn't willing to face upto what this disease is about but actually from reading these posts it has laid so many of my fears to rest and given me hope. Yes it maybe a long and at times hard journey but at least I know we are all in it together!

    Much love to you all

    Mel xx

  • Sorry, I got your name wrong, Misspiggy, I don't know names in this group, well enough!!!

  • Just a further mention on this subject here....

    ....out of interest I found out that there is a copy at another Lancs library by Sandra Cabot and have put a reservation on it, it is the Liver Cleanse one so it will be interesting to have a better look through it as opposed to online.

    I still have reservations about the whole thing. From myself prior to this PBC lark I was a pretty good and healthy eater. Over the years I have been interested in reading articles and books on healthy eating and here in England we used to have a short-lived series called "You Are What You Eat" that I watched with interest.

    I think one could feel better with PBC by a good diet but also unless there is something out there that can attack all those antibiodies that are the cause then all one can do is try to improve on their condition of life. I just wish there was something that I could discover that would help us all.

    I am still attempting to figure out if I can perhaps irradicate the itch but as yet I've not managed to find out why sometimes I don't have it at night and others I do. There is just no pattern with that at all.

  • Hi I have just joined the PBC society and was diagnosed about a month ago, It was found accidentally, I felt like I had been given a death sentence, cried a lot and felt sorry for myself, but I am now getting my head around it and feel a lot better, LIFE IS FOR LIVING and I am a fighter. I am 47 and don't have any symptoms as yet and not sure about the dormant strain of PBC lots of questions to ask my specialist next time, I do have negative AMA results so maybe that is not even a possibility.

    I have got Sandra Cobot's books and I am juicing daily and have also gone gluten and milk free, I eat fermented diary yogurt and a bit of cheese. I also wish we knew if cutting gluten and milk out would help, I am finding cutting out bread difficult and have tried to make my own several times both by hand and in my bread machine but they are all awful, I have tried it with my own mixes and also brought bread mixes to no avail. I have read a lot about the PBC and it doesn't seem like anyone is the same so we all have to keep our fingers crossed. I have given up alcohol put would like to have a glass of wine now and again, so think I may do just that. I want to do all I can to help myself and if it means no gluten, milk or wine then i am happy to do it all, but I wish we knew if it is going to help. My specialist says eat a healthy diet.

    I have been on URSO for over a week so fingers crossed my blood levels may come down, but I have read it doesn't work on everyone. I want to be part of something that is positive and this is a great way to share views and experiences. Another thing Sandra Cobot says which is questionable is take high doses of Vitamin E (1000 IU twice a day) my specialist says that is not good so I have avoided this. I also take vitamins which I assume are ok with URSO but I am not sure that Glucosamine is ok as its a dietary supplement and not a vitamin. I take vitamin d,c, calcium and garlic, and turmeric and milk thistle. Sandra also recommends MSM powder which I have but am not sure I should take that either. I have bought selenium but I now know that brazil nuts are high in this so I have included those in my diet instead. I think that maybe I am going over the top but as times go on I am sure I will figure out what is the best way to go. Thanks for reading

    Kay

  • Hi Kay! :-)

    It will be 1 year since my diagnosis and I feel sooo much better than I did a year ago. I'm off the booze completey (last drink Christmas day) and this was hard for me. I am taking one thing at a time. When I was first diagnosed I read nothing but negative sites about PBC and the fact there was no cure and it really depressed me. So when I found Sandra Cabot's site I was so excited because she said that if we followed her diet and were in early stages then there was no reason why we would go onto develop symptoms etc. My gut feeling tells me that if I can be as sensible but as pure as I can be with my diet and the amount of toxins that go into my body then yes I can fight this disease. Who knows what is around the corner but if I believe this disease will get me then it will. I am a strong beliver of positive mental attitude. Yes some people maybe sceptical of her bold statements but I for one would rather believe her than the depressing statements of some of the sites. I maybe setting myself up for a fall, be being naive but I'm happy to be those things if it makes me enjoy every day to the max! I'm finding the bread bit hard too, I love bread and gluten free bread sucks! Tried making a couple of times too! But until I've read more on cutting out gluten and diary I am still including it in my diet. I want to make sure I am subsituting with healthy alternitives before cutting out. I think my next step will be to tackle the sugar thing! I love my food,, cake, chocolate so am finding new ways to bring some sweeness into my life without the refinde stuff. Sounds like you are very positve which is great! How did it come about being diagnosed with PBC? Hugs - Mel xx

  • Ooops - please excuse the spelling above!! :-)

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