Dr Hyman is not just a silly GP out there, you can research that. The idea that the health of the gut is related to inflammatory and autoimmune conditions is not new, has been researched over 70 years ago too.
Just wondering, what do you know about this? Have you ever had a GP talk to you about the huge importance of what you eat for your PBC and related conditions? Or about the connection between gut /digestive conditions and autoimmunes? Leaky gut syndrome, among many others?
Thanks :).
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Cristina_Romania
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I spend hours thinking what could cause PBC. Was it the fact that my mother was rhesus negative, or that I was exposed to anti-termite chemicals 3 years ago, or I used to smoke. The only thing I can say about myself is that I have always eaten healthy food and hardly ever eaten readymade food and never had digestive problems, no one in my family has ever had an autoimmune disease. The disease predates pesticides, it's more prevelent in northeast England, Sweden and north America. Until they find the cause they can't really find the cure. Thank goodness for the French Dr Poupon for discovering URSO. I had a quick look at Dr Hyman, I will take a closer look later. My hepatologist told me not to read pages about the liver that contain advertisements, they can't be trusted. For me that's not to say that some things they contain can't be good advice but they are selling something but if I think they are saying something that I should take notice of, I will try and source a page without advertisement and one with scientific evidence and research done on it. Back to causes, my money is on hormones and genetic predisposition and a trigger.
Nobody is selling you anything if you read this or any other page.. Besides, what Dr Hyman is saying has come up years and decades before too, in independent clinical trials, medical articles, etc, he is not reinventing the wheel, only saying things in an easy to understand way.
Just as an aside, from what I know and also have read in materials from the PBC Foundation (and they do know about PBC..), the genetic predisposition is considered responsible for PBC only in a quite small percentage/ amount, if you wish.
I am not making any statements, just being curious what people around here know and think about these things.
I think the root cause of PBC will be an ongoing search. In the meantime, learning all you can from reputable sources is key. The more we know, the more we know what care we should be getting - and know when to question it. I agree that gut health is paramount in maintaining our overall healthy body and reducing inflammation. Personally, I need to do more research on this - again from reputablecGI sources. I welcome any articles you find on this important piece of the puzzle.
The only things both the GP and consultant has mentioned to me which would be related to the gut was when I asked on being diagnosed with PBC if I needed a special diet. I was told to restrict the amount of fat intake but not to cut it out altogether as it was important for us to have some of the good fats. I was also told to be careful when taking over the counter remedies especially if they contain asprin. The only other thing mentioned but I don't really know if related to gut was to try and excercise.
It would not surprise me at all if diet, environment etc was somewhat responsible for autoimmune conditions. If you think what we breath in and eat everyday you cannot really avoid problems. You can try and eat only fresh foods by purchasing fresh products and making everything from scratch. But how sure can you be that these fresh products you are purchasing....from a supermarket for example which I am sure most of us buy our foods (organic so expensive, not lucky enough to be close to local producer)... are as fresh as they claim or not been genetically altered or treated with chemicals to make them last longer. I am sure these HIDDEN elements are to blame for alot of conditions and disease that affect us. We can be too clean or too dirty....we can eat fresh food or rubbish food...sometimes things are taken out of our control, we are simply exposed to these problems by no fault of our own.
I remember a Dr telling me when my eldest (first) son was quite young and had been suffering frequent asthma attacks...I had been blaming myself that I might have been or had not been doing something right, causing him to have the attacks, I had tried everything I could think of from buying a new bed even though the bed he slept in was only a year old/purchased new when he grew out of his cot, bought all antiallergy beddiing, special washing powder, removed carpets and put down laminate...he always ate fresh cooked food as I would not allow him to eat ready made baby foods because not long before he was born there had been a scare with things being malliciously put into baby foods, so I did not trust anything unless I made it myself...how paranoid a new mother was I!!!.... But you name it ..I tried it and he still kept on getting the attacks......Know what the Dr said?...."you are keeping your child in too clean an environment...you cannot wrap him in cotton wool...when he is at school he is being exposed to germs so it is only to be expected for him to get some illnesses, unfortunately for him it is asthma which he may or may not grow out of,..here's a script for ventolin syrup". What more can I say?
I have had a quick look at the link to Dr Hyman which is interesting reading. If other Dr's or specialist are aware that these other test are out there why don't they do them...especially the non invasive ones with the bloods for example, because we have to have regular blood tests anyway so they could all be done at the same time. I am not sure if the nine points are as easy to achieve as they appear though without medical intervention that is. Most of them you would not be able to do for yourself or as a preventative measure for your family for instance. Yes, you can try and be careful what you injest to a certain extent, take supplements and excercise.... But what I think it is more important is to prevent it happening in the first place... It needs someone to come up with a plausible theory in the first place to find a cure and possible reason.... where theres a chance there is hope and who knows what will happen in the future, I will certainly not be giving up on hope.
I grow all my own vegetables and fruit, I also produce some of my own meat all done organically, but I still got PBC. Also PBC was around before pesticides and a lot of other chemicals. I think autoimmune diseases have always been around but just went undiagnosed. So true what your doctor said about asthma, it's so important to build up a strong immune system, my cousin is a microbiologist and she is always saying about all these antibacterial sprays and how bad they are. I don't believe in taking supplements, unless I'm told to take them by a doctor. I believe in a balanced diet. I was told I don't need to take vitamins at this point (except vit d + calcium) but that could change later on. I hope they find a cure, unfortunately it won't be able to undo the damage already done to the bile ducts. I know a frenchman who told me his mother inlaw has had PBC since she was 50 years old and she is now 82! Let's hope we can all live that long.
The frenchman's mum in law has done really well lets hope she last many more years. I think the longest I heard of anyone having PBC let alone surviving it was 25 years. It certainly gives me hope... I was diagnosed at 51.
I havent been told by the GP or consultant to take any supplements at all specifically for PBC. Is it normally something that is prescribed for someone with PBC and is that possibly why you are taking them?... Sorry I don't mean to be personal.
I was put on calcium by my GP following my hysterectomy in 2009 due to risk of osteoporosis...I still take them now. The consultant would have been aware that I was taking it ... so maybe thats why it has not been mentioned in relation to PBC. But no one has said anything about Vit D.
I know they say the liver is able to repair itself.. but I am not sure in what way... pity the bile ducts could not do the same.
I was diagnosed at 51, July this year. I only take calcium 1000mg with vit D 800 ui. Specialist told me that you must take vit D with calcium, as calcium on its own does not get absorbed in the body and needs the vit D to stick. The same as iron and vit c. I have seen on some fondations (i think the canadian pbc foundation) that the doctor tells patients to take a regular multivitamin.but if you eat ok it's not neccessary. I believe as the disease progresses it might be neccessary to take some vitamins but not sure about this.
Everyone should have their vitamin levels checked - B, C , D, and Calcium. If your levels are good, there is no need to take them. A bone density and thyroid levels should be monitored as well.
When I attended The International PBC Summit in Edinburgh last May, many pharmaceutical companies are working on meds for itching, fatigue, the cause, and one company used the word'cure'. I look forward to sharing more of this type of info with you from The Summit this year in April.
I have multiple autoimmune problems, and the theory about mine (just a hunch but it feels right for some reason) is that it was triggered by exposure to a virus. I started with symptoms of Scleroderma my first autoimmune condition when i was in my late teens. Followed by a particularly nasty bout of gastric flu when i was really poorly. My mum worries too that my childhood illnesses may have pre disposed me - i had measles, German Measles and whooping cough when i was little. I was particularly poorly with measles. My theory is that the immune response 'trips' something.
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I had a terrible noro virus about 8 months before I was diagnosed.
Wooow.....My youngest son (now 13) was born 6 weeks premature and was quite poorly. His early birth they said that was probably caused through me testing positive for toxoplasmosis. They asked if I had a cat or lived on a farm ...because it is possible that I had been exposed to cat or sheep faeces... my answer was no to both. To this day I am not sure exactly how the virus got into me...my only thought was possibly planting in the flower beds without gloves on and maybe a cat had deposited in there. They said I must have been infected by the virus late in pregnancy because if it had been early I could have miscarried him.
Guess what.......My problems with painful joints etc started 10 weeks after he was born.... I went to the GP because the pains in my hands, arms, legs and feet were so bad, I couldn't even lift my baby into my arms, the only way I could manage it was to scoop him up..I was told that I may have viral arthritus and was referred to a rheumatologist....the referral took 3 years to come through and was told I didn't have it....I suffered with this for 10 years before a further referral to a rheumatologist following a visit to the GP in 2009 (I had an hysterectomy 2 months before my visit) and eventually a gastroenterologist finally diagnosed PBC in Jan 2011..
Exposure to a virus certainly sounds a plausible and possible reason. I have also thought for a long time that it may also have an hormonal link...my problems started shortly after giving birth and then following my hysterectomy.
The mind boggles.........
Hi, I asked my GP what kind of food I should eat and he told me to eat what I want !!! some help from him then. I also chatted with my gastro about certain vegitables giving me very bad wind / indigestion and he just said Oh they are one of the hardest things to digest, so I didn't seem to get any help from either of them.
We should eat healthy foods - but ones that agree with our systems. There's no magic answer to nutrition. Everyone finds what makes them feel better overall.
Sorry but I have to disagree here.
If all these 'problems' were the cause then we'd not know what to eat our entire lives.
I know from when I had my children in the mid to late 1980's and I was informed by an Health Visitor to start weaning my child at aged 3mths and back then it was baby rice as rice is apparently easy to digest. I go with that one, not so sure about the age but.....I was only in my 20's and had lost my own mother so didn't have that input tho' I did know that in the past from what my gran would say, babies weren't actually being weaned until they were around 9mths old and the food was not 'instant', it was home prepared and cooked. Now in this century new mothers are given different advice with regards to weaning a baby so it all gets confusing.
Also there is the outside elements here too, working in environments with toxins (ie men usually from the past worked with asbestos).
I'm not a great believer in doctors myself from past experience and also my own experiences since 2010 when I was diagnosed with PBC. My own son had a colonoscopy 2yrs ago and it turned nothing up and immediately after the procedure (he didn't have any sedation as he was informed it wouldn't be required as a very short procedure and he didn't have any), the doctor told him to lay off gluten, especially wheat for awhile and see how he went until he went back to see him 6mths later. The funny thing then was that he was offered a sandwich and cup of tea shortly after and he said a nurse came back with a sandwich made of bread which is wheat!!! (My son is fine by the way, antibiotics were apparently given as a cause of his problem which has over time been correcting itself.)
I've always thought I ate sensibly and rarely drank alcohol, never smoked and had plenty of fibre, water and fresh fruit and veg and then out comes the PBC.
To lindaclark, I was told to eat what I wanted (alcohol not included of course tho' it is considered normal to have an 'odd glass on rare occasions') which I do agree with. One thing that I have found myself now I have this PBC thing is that I tend to juice and blend fruits with carrot normally as opposed to eating with full-on skins as for some reason I seem to think that is much better somehow. As for vegetables, these days I tend to lightly peel spuds which I hadn't done for some years as they come washed today and prefer eating most vegetables when they are cooked as I believe they are probably easier to digest. Apples make a great after-dinner pudding, just peel and chop and stew in very little water and maybe add a teaspoon of sugar. (My husband and I were fortunate last wk whilst on holiday to stay in a holiday flat that had an apple tree in the owner's garden and they would leave stacks of apples out for you to help yourself so stewed apples galore!)
Going back to GPs, I read many years ago now several books on this subject and also many other topics mainly medical profession related by an ex-GP called Vernon Coleman. He quit being a GP apparently due to the red tape that sort of dictates how GPs deal with patients and their ailments. I know he has a website vernoncoleman.com/
and it is rather interesting. I'm not saying his points and comments are what we would all go by but I have found myself on reading his past books I do agree with a lot of it.
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interesting convo with Rheumatologist 
so what DO you do for the itch?
What would you do?
Stages of PBC-Prognosis-Next Steps?
Lichen Planus 
