Just read the fizzy drink post, intresting. Is it also true we can't eat shellfish? I thought that was only if you had hemochromatosis?
Definitely no shellfish
Why is that? Why is it specifically bad for people with PBC?
No raw fish of any kind is what I was told. Cooked is ok. Some fish carry bacteria & we don’t have the immune system to fight bacteria.
Oh, that's better. I wild hate to give up crab. I'll miss sushi and oysters
I always loved raw oysters. I craved them when I was pregnant but dr said NO! Too much risk of bacteria. So I haven’t had anymore. And sure can’t now. And I don’t eat sushi but I have seen many news reports about parasites😖
It's amazing how you learn something new everyday about this disease. I try not to Google too much because, I don't want to scare myself. I love this site! It's nice to know I'm not the only one going through this. I cannot thank everyone enough for their support and knowledge.
I research a lot. I’m very selective about the link I read. True, it is scary but I want to know everything. 🤗
I do to. Being so new to PBC I'm goning to take it slow, until I understand it a little better. The 1st couple days of googling I was scared to death it puts out a bad image of this disease and makes it all look fatal.
I’m fairly new, diagnosed July 2017. I read a lot from Am Liver Foundation. There are good trusted resources out there😊
I was diagnosed 2 weeks ago. I see my liver doctor in 2 weeks hoping to learn lots more then. I will definitely look into Am liver foundation. I have learned a lot from liver foundation. org. No more Googleing and definitely no more pinterest! 😲😲
Oh you are new...the liver foundation has a fb support group that is awesome. Let me know if you’d like to check it out.
Of course I would. Any support groups that are recommended therefore anything that is recommended from somebody that is going through this.
Are there FB, groups you ?
Let me write the info down & I’ll get it to you. The group is in St Louis, MO.
Wonderful, thank you.
I will msg this info to you.
I just went back through those steps. Once you click online support groups & life with Primary Cholangitis & click join, the fb Page will come up & you will see a pic on left that says “you’re not alone”.
Thank you again!
Don’t worry was diagnosed early 2000’s and still here.
What stage are you?
I stopped searching along time ago but havin some annoying itch made me go back and search also was the reason for joining the group only to prove my suspension about the cause of the itch! Thanks all for the support.
The itch is unbelievable!! I have tried to search and find out why it's worse at night? Do you know why
Not realy because I didn’t have it for about 13years on Urso and antihistamine,couldn’t of done without the antihistamine but it seems like it’s not working for me anymore for the last 2 years. The thing is the liver condition causes it and also the medications so I’m trying to se what happens without the Ursofalk but I don’t advise anyone at this stage to stop their medications. Only for me because I have a strong feeling that I might of developed antibodies against it and it’s time to change. I have to see how much deference it makes to my liver in the next blood test.
I have been itching for 2 years. Was just diagnosed 2 weeks ago started 1000 mg of Urso have not felt any difference see my liver doctor on the 27th period. I know it's gonna take a while but I'm hoping to feel some relief. I need to get some sleep it's hard to sleep when your body's on fire.
Do you take any antihistamine?
I have tried them numerous of times with no luck. I take lots of luke warm / cold epson salt, lavender baths. They help as much as anything. I also use ice packs.
Sorry to hear that but I hope you get rid of it soon
Thank you, Me too!!
Too much copper in shellfish, that’s what my hepatologist told me. He didn’t say to never have it though...😋 I have to say that I do get that pain on my right side when ever I have shellfish.
Didn't know about shellfish. I eat prawns fairly regularly. Why can't we have them?
I LOVE SEA FOOD!!! so glad it's only raw sea food we can't have.
Yup shell fish my allergy started 2 years ago out of no where 3 times I got vile sick that I should have been hospitalized so no shell fish I didn't realize that it's PBC related
Oh my - so did I but never made the link.
I was diagnosed with PBC in 2003, see a consultant every 6 months and have NEVER been advised on what to not eat or drink. Where on earth has this shellfish thing come from?
Hi Debbiem40...my Hepatologist told me to avoid shellfish because they’re high in copper. I still eat shellfish occasionally but I do get ‘that’ pain on my right side when I do.
I thought 'that' pain in the right hand side was gallstone related?
I don’t think so, I have no gallstone. I also get the pain when I indulge in cheese so I try to be good and avoid dairy products but sometimes the craving wins! Lol!
Not sure but I was never allergic up until 2 years ago and let me tell u I was sick I couldn't figure it out until the 3rd and last time I ever ate shell fish
My doctor told me there was no concern with eating shellfish, and therefore I have eaten it and never had an issue. I would recommend you ask your doctor.
I was Just reading on the American liver foundation website. Under the bile liver duct diet, and it says as long as it's cooked it is fine. So raw oysters and sushi would be the only two, I could think of.
Hi Bobbie just searched shellfish and found that it’s bad if it’s uncooked or poorly cooked. It is OK if it’s cooked.
I'm currently on the AID (auto immune diet). I would hate to have to give something else up. This makes me very happy! 🤗
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