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Autoimmune and liver disease?
I'm interested to know if there has been new developments regarding autoimmune issues of the liver?
Since I was 18 (first symptoms and pain episodes started) I have had issue with my liver.. later diagnosed as possible autoimmune issue. I even had my gallbladder removed in my early 20's after years of infection (not the cause of my illness but a by-product with no stones or sludge).
The condition came and went and when I was going through these episodes I would not be able to eat. Even a nibble on parsley would set off an "attack". I lived on thin packet soups and custard! I would be like this for a week or two and my liver function test showed signs of a problem. later found out these episodes were caused by a build up and/or blockage in the bile duct and was very painful. This was observed in an ultrasound during an attack while pregnant with my first baby. Hormone surges also brought on episodes and now I can not use the pill either. I also had incredible itching all over my body during pregnancy (even the soles of my feet and the roof of my mouth!). This gradually went away after the birth.
During the "attacks" I sometimes was able to force myself to vomit (which you can imagine is very difficult and if successful, excruciatingly painful to achieve with a blocked bile duct). This usually ended an "attack" and probably was not very good for me but I was desperate as these could last for several hours. I've had all sorts of test on my bile duct but nothing has shown up out of the ordinary.
I did see a specialist after the birth of my first baby and since have successfully controlled the condition by using the drug Ursofalk (Ursodeoxycholic Acid) which is more commonly used for patients with cirrhosis of the liver which I don't have. He initially trialed it on me as a test. I know the condition returns after a week or so If I miss my medication for more than3-4 days... even after gong back on the medication I will get symptoms for a short while until the medication is back in my system. So going off my medication is not an option. My specialist had concerns about me being on the medication for extended (if not indefinite) periods of time.
I guess I want to know if there has been any more developments or understanding if not treatment of illnesses like my own? I have two children, should I be concerned that they will inherit it from me? My suspicion is my liver does not correctly make the 'chain' of enzymes required and the result is a thickening or blockage in the bile duct but that is just speculation on my part :) I'm now 42.
Thank you,
Gina.
Since I was 18 (first symptoms and pain episodes started) I have had issue with my liver.. later diagnosed as possible autoimmune issue. I even had my gallbladder removed in my early 20's after years of infection (not the cause of my illness but a by-product with no stones or sludge).
The condition came and went and when I was going through these episodes I would not be able to eat. Even a nibble on parsley would set off an "attack". I lived on thin packet soups and custard! I would be like this for a week or two and my liver function test showed signs of a problem. later found out these episodes were caused by a build up and/or blockage in the bile duct and was very painful. This was observed in an ultrasound during an attack while pregnant with my first baby. Hormone surges also brought on episodes and now I can not use the pill either. I also had incredible itching all over my body during pregnancy (even the soles of my feet and the roof of my mouth!). This gradually went away after the birth.
During the "attacks" I sometimes was able to force myself to vomit (which you can imagine is very difficult and if successful, excruciatingly painful to achieve with a blocked bile duct). This usually ended an "attack" and probably was not very good for me but I was desperate as these could last for several hours. I've had all sorts of test on my bile duct but nothing has shown up out of the ordinary.
I did see a specialist after the birth of my first baby and since have successfully controlled the condition by using the drug Ursofalk (Ursodeoxycholic Acid) which is more commonly used for patients with cirrhosis of the liver which I don't have. He initially trialed it on me as a test. I know the condition returns after a week or so If I miss my medication for more than3-4 days... even after gong back on the medication I will get symptoms for a short while until the medication is back in my system. So going off my medication is not an option. My specialist had concerns about me being on the medication for extended (if not indefinite) periods of time.
I guess I want to know if there has been any more developments or understanding if not treatment of illnesses like my own? I have two children, should I be concerned that they will inherit it from me? My suspicion is my liver does not correctly make the 'chain' of enzymes required and the result is a thickening or blockage in the bile duct but that is just speculation on my part :) I'm now 42.
Thank you,
Gina.
Couple more things to consider as you mentioned genetics and also the auto immune disorders that could affect the liver...
Genetics
Several forms of liver disease are caused or thought to be caused, by defective genes. These forms of liver disease may be diagnosed in infancy or may not show up until later in life. Examples include hemochromatosis, Wilson disease, tyrosinemia, alpha 1 antitrypsin deficiency and Glycogen Storage disease.
Autoimmune disorders
Sometimes a body’s immune system may begin to attack the liver or bile ducts causing inflammation and scarring which leads to a progressive form of liver disease. Examples of liver diseases believed to be caused by the immune system are primary biliary cirrhosis (PBC), primary sclerosing cholangitis (PSC) and autoimmune hepatitis.
Taken from Canadian Liver Foundation
Genetics
Several forms of liver disease are caused or thought to be caused, by defective genes. These forms of liver disease may be diagnosed in infancy or may not show up until later in life. Examples include hemochromatosis, Wilson disease, tyrosinemia, alpha 1 antitrypsin deficiency and Glycogen Storage disease.
Autoimmune disorders
Sometimes a body’s immune system may begin to attack the liver or bile ducts causing inflammation and scarring which leads to a progressive form of liver disease. Examples of liver diseases believed to be caused by the immune system are primary biliary cirrhosis (PBC), primary sclerosing cholangitis (PSC) and autoimmune hepatitis.
Taken from Canadian Liver Foundation
Did they have a name for this diagnosed condition to do with your liver? Have they ever pinpointed the cause of infection or inflammation of the bile ducts? Have you ever had a liver biopsy done? Liver enzymes testing? Do you know the numbers or have copies of your tests at all?
This is pretty tough to analyze of give any feedback...having your gallbladder out due to infection? No stones?
I have some ideas but the info you've given is kinda vague...sorry. What tests have you had lately?
This is pretty tough to analyze of give any feedback...having your gallbladder out due to infection? No stones?
I have some ideas but the info you've given is kinda vague...sorry. What tests have you had lately?
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