Anyone Diagnosed With Primiary Biliary Cirrhosis (pbc)?

[teebs in WV]

I had my GI appointment Friday and as I anticipated he now wants a liver biopsy, specifically to determine if I have PBC. (This is what I have suspected my liver problem is and it has taken since my first appointment in June to finally get to the point of a biopsy).

I searched this board and saw a few postings from a couple of years ago, but I am curious if any active members have been diagnosed with this condition?

Thanks,

Tracy

[mommida]

bump

[DEE BAERTSCH]

Hi Tracy;

I was diagnosed with Primary Billiary Cirrhosis before I found out about my Celiac Disease. I was on Urso (the only drug to treat PBC) for 4 years. The Urso kept my diarrhea in check, which was my reason for going to the gastroenterologist. My other symptoms of joint & muscle aches and worsening osteoporosis prompted my Dr. to look for other causes ( I was also taking Actonel for the osteoporosis). When he found out about the Celiac he also found out I was vitamin D deficient, which is common among Celiacs. Resolving those 2 issues got me going in the right direction, but my intestines weren't healing a year later after a 2nd endoscopy. I read in this web site about someone who had the same 2 conditions as me and his Dr. told him the only way to heal the intestines was to stop taking the Urso along with the gluten free diet. That is what also worked for me; 2 years after taking no medication for either the PBC and the osteoporosis, my liver enzymes are completely normal, and my osteoporosis has improved! Incidentally, my Drs did not do a liver biopsy, just the blood work which can confirm PBC. They said there was no need to do an invasive test when the only treatment for it was the Urso.

Are you already diagnosed with Celiac? Whenever I inadvertently injest gluten I get pain in my liver; it is also what spikes my liver enzymes. I was taking a calcium supplement for a few months before I finally figured out it had gluten (it was wheat free, but not gluten free).

Good Luck; this web site has been an invaluable source of information for me.

Dee

[teebs in WV]

Dee,

Thanks for your input. I had the biopsy and the diagnosis came back as Primary Biliary Cirrhosis. I have been gluten-free for over a year and my enzymes kept rising, so it doesn't sound like what worked for you is going to work for me. I was given Ursodiol 300 mgs 3 times a day but haven't started yet because I got the flu. I didn't want to take it until I got rid of this bug.

Do you belong to an organization for PBC? I don't know where to go from here. I am not sure that my GI has dealt with this before and I am thinking of asking for a referral. Any advice would be appreciated!

Tracy

[DEE BAERTSCH]

Dee,

Thanks for your input. I had the biopsy and the diagnosis came back as Primary Biliary Cirrhosis. I have been gluten-free for over a year and my enzymes kept rising, so it doesn't sound like what worked for you is going to work for me. I was given Ursodiol 300 mgs 3 times a day but haven't started yet because I got the flu. I didn't want to take it until I got rid of this bug.

Do you belong to an organization for PBC? I don't know where to go from here. I am not sure that my GI has dealt with this before and I am thinking of asking for a referral. Any advice would be appreciated!

Tracy

[DEE BAERTSCH]

Hi Tracy;

Sorry it took so long to get back here; holidays! There is an organization called pbcer's.org. I noticed there is a study being done to see if Vitamin D supplementation can have an effect on PBC; at Mount Sanai Hospital. It was too far away for me to participate in. Since most celiacs are Vitamin D deficient, it will be interesting to see if it is the case. Have you been tested to see if you are Vitamin D Deficent? Not too many doctors are familiar with PBC. Dr Lindor at the Mayo Clinic in Rochester, MN is very knowledgeable about PBC. My doctor is Bradley Zins at the Billings Clinic, Billings, MT. The PBC web site can help you with a Dr referral, depending on where you live.

The connection between PBC & Celiac is acknowledged; which causes which will be interesting as things unfold.

Good Luck, Dee

[teebs in WV]

Thanks Dee. I found the PBCers website and actually found a doctor that is in the same GI group that I go to. I am going to ask to be referred to him. I have never been tested for any vitamin deficiences or osteoporisis. I asked once and was told I was too young to worry about it (AAAAAAAAAAAHHH). I have done so much research on my own on PBC and based on what I have read I definitely need to find a specialist that has seen this disease before.

I am curious - have you had the itching that is common with PBC? I have been going crazy itching again and have blamed it on Celiac Disease - until I found out a few months ago that it is very common with PBC. My hands and feet have been itching like crazy, and for the past few days I have itched everywhere - to the point I am ready to lose my mind. I know there is medication they can give to relieve the PBC associated itching, but of course my GI didn't give me that. He did give me Ursodiol and I started taking it on the 2nd.

I am so glad that I have someone else that I can talk to about this!

[DEE BAERTSCH]

Hi Tracy;

I've never had the itching associated with PBC. The one thing I have learned is that vitamin deficiencies are more common than most Drs. believe. They have very little training in nutrition in medical school so don't have a background in it (plus there's no money in it) Just read an article about Vitamin D deficiencies in US News. They believe it is a trigger for autoimmune diseases, and that most Americans don't get enough Vitamin D. If you live north of Atlanta, GA, you can't get Vitamin D from the sun. A nutritionist at a celiac conference I went to said that most Celiacs are Vitamin D deficient; the disease (or the gluten) takes away the bodies ability to absorb the vitamins & minerals from the food you eat, the result being that most Celiacs end up with osteoporosis.

Food is the only thing we put in our body, so it seems to me to make perfect sense that when our absorption process gets screwed up that we are going to end up deficient in something. Our skin & nails not being healthy can only come from a deficiency. The interesting thing I just learned about from my osteoporosis Dr. is that calcium will not be absorbed by your body unless you take Vitamin D with it. I had been trying to get more calcium from food sources, but there are none that have Vitamin D & calcium together unless they are fortified. The other thing is that you should never take calcium with a multi vitamin; the minerals do not allow the calcium to be absorbed. You need to take calcium & vitamin D at a different time of the day than when you take a multi vitamin.

It has been quite a process to get to all of this information even tho it seems rather simple. I never got anything really helpful from my GI Dr. other than the disease diagnosis and then to take Urso. I preferred to find out what was causing the problem & do what it takes to prevent it rather than taking a pill to treat the symptoms. My natureopath is the one who got me going in the right direction. Nutrition is their game, not taking something to mask the sypmtoms.

Dee

[SpikeMoore]

Hi there

I grew up thinking that my mother died of hepatitis contracted at work as a nurse. I now question whether it was pbc and unrecognized celiac. There was a story about a needlestick injury from a patient, but when I ask the only person that knew her at the time left alive, my aunt, she does not remember a specific incident, but conjecture that maybe she contracted some type of hepatitis in the sterilization room. She died in 1982 at 42 years oldand was classed as non-A, non-B. She was sick from the early 1960's, before we were born (I have 2 brothers) and one of my earliest memories is her showing me that her eyes were turning yellow.

I remember thinking in the recent past that I wondered about a hereditary component to what she had when I developed the floaty, light coloured stools like she had.

Now, if it was hep C, why do none of us have it since it occurred before we were born?

I guess I'll never know, but many of her symptoms were celiac-like, alhtough I know that they could have been a separate type of liver disease as well.

Family history is odd as well with 2 of her siblings with juvenille diabetes, one sister with epilepsy and a niece with down's. Now to me, that seems more than co-incidental. Oh, and me with self diagnosed gluten-intolerance/celiac.

[Cathy J]

I see that your PBC / Celiac post is from 2006 but I'm curious as to how you are doing now?  I was just diagnosed with PBC associated with Celiac.  I'm gluten free now (reluctantly, since I have no symptoms) and am taking Ursodiol.  My liver function is back to normal but I'm still struggling with the concept of going without gluten for the rest of my life.  What is your story?

Cathy J.

Springfield, Oregon