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PBC Foundation
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WHAT DO YOU MEAN I HAVE PBC

That is the first question I asked my gastro dr and he never answered me so Is this something random or is there a link to something deeper, I have a clue and that is tied to celiac disease or Gluten, let me know what you think

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My idea is that its auto immune, and when your immune system turns against your body it will effect different parts. This being the liver but also others like the thyroid which is quite common with the PBC and many other things.

At the moment I have no problem with gluten or celiac disease . But 5 years ago I had no problems with any of it, so who knows what is going to happen.

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I believe it is autoimmune also and I too have thyroid issues. I would have never known I had it until a random blood test. I just had my liver biopsy last week and waiting for results. I am blessed to not have a lot of the symptoms others suffer with. I know of two women who have had it for over 20 years with no problems. My liver specialist has just advised me to take milk thistle and Urso.

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Melisab

WhooHoo!! A specialist actually advised a patient to take Milk Thistle!! That is awesome!!

If you have read any of my "writings" you know that I started taking MT on my own, have been taking it for quite some time now, and have proven, to myself and to my Dr., that it has helped keep my numbers down. What dosage does your Dr. recommend?? I am taking 2,000mg, twice a day, but I worked up to it. I also take 900mg of Urso once a day and have been for 5yrs.

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Hello.

PBC is apparently an auto-immune condition. That means that we normally have anti-mitochondria antibodies (AMA for short) in our system and these attack our bile ducts. These bile ducts then slowly start disappearing and bile then leaks into the liver causing problems.

There are theories as to how PBC is 'triggered' as the medical experts call it. They think perhaps we have had some infection at some point or possibly some environmental toxin.

I think with any of these auto-immune conditions (ie lupus and MS) it is possible for other problems to arise due to the glitch that we now have in our systems.

I am fortunate at present that I only have the itch at night time, some nights not at all and tho' it is annoying, currently it is what I'd describe as a minor irritant even tho' not nice. I do have periods where coming towards early evening I just feel like I have some force dragging me back as I feel quite depleted of energy but on the whole I am doing quite well and have been diagnosed for almost 2yrs now with the itch for over 2yrs.

I also think that at the end of the day a lot depends on the doctors. Some are not so in tune and others seem to know a lot about it. I myself have encountered doctors who even seen for something minor can have very differing opinions.

I decided along with my husband end of 2011 that for the foreseeable future I would be just seeing the GP and taking the repeat bloods there and picking up the urso and I would go with the flow and deal with anything that comes along when it does.

Hope this has helped somewhat.

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This is an autoimmune disease. It is not a death sentence, but you need to take of your liver. I no longer drink, take any over the counter drugs, I am a vegetarian, and as close to gluten free as possible. I have some itching, lots of fatigue ( I also have 6 other autoimmune issues). Be religious with your Urso. Hope this helps.

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Having been on Urso for over two years now, I find that I feel much healthier than I have done for years. although I get tired my itching is virtually non-existent and I can keep going energy wise for longer period of times - did a 3 hour kayak tour last week with no ill effects at all!! I am a vegetarian and am fairly careful with what I eat and don't drink but other than that I take no special care. I no longer work full time but run my own small business for a few hours in the afternoons. I am 58 and hope I continue to feel well for a long time yet!!

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