Any One Else Diagnosed With Auto-immune Hepatitis

[crazymurdock]

Just last week, I got the call from my gastroenterology Dr. office saying that I had tested positive for auto-immune hepatitis and that they wanted to schedule a liver biopsy.

This was after my regular family Dr. had a concern after a slightly elevated liver test during a physical. My gastro. Dr. ordered an ultrasound to just check for a fatty liver and also ran some more blood tests. The ultrasound turned out fine but the blood work didn

[crazymurdock]

I take it that no one else has been diagnosed with this. Has anyone else heard of it or know someone who has had it?.

I am a little scared and I am wanting to find out more about it. I know I will know about it after the biopsy is completed and then get to talk to the Dr., but I still would like to get some information from someone who has been through it.

Thanks

[Di-gfree]

No, I've never heard of it; but just googled it, and it sounds very serious. This auto-immune stuff is so scary. I've got celiac, and just learned I have Hashimoto's (auto-immune attack on the thyroid).

I understand why you are scared. Good luck with your biopsy.

[crazymurdock]

Thanks for the reply. Good luck on the treatment for the Hashimoto's.

I believe that I read somewhere in the posts that these diseases usually come in pairs so maybe we have meet our quota.

[casnco]

  crazymurdock said:

Just last week, I got the call from my gastroenterology Dr. office saying that I had tested positive for auto-immune hepatitis and that they wanted to schedule a liver biopsy.

This was after my regular family Dr. had a concern after a slightly elevated liver test during a physical. My gastro. Dr. ordered an ultrasound to just check for a fatty liver and also ran some more blood tests. The ultrasound turned out fine but the blood work didn

[Di-gfree]

  casnco said:

Good Luck and lets pray this is some sort of a fluke!!!!

Debbie

I, too, hope it's a fluke; like Debbie said, let us know.

I just wanted to comment on the high liver enzyme numbers. I had that one time, too, and had actual pain in my liver at the time. I don't mean to take away from the topic of the auto-immune attack on the liver, but mine turned out to be from some chinese herbal medication I was taking through my naturopath! I stopped the medication, and my liver returned to normal. This was over 10 years ago before I was diagnosed with celiac, so the treatment wasn't for anything celiac-related. Just thought I'd mention this.

[crazymurdock]

Well, I got through the biopsy yesterday, still will not know the results till the first of next week. Did get to talk to a Dr. about it alittle. The biobsy will tell if the blood test was a fluke or not. (Keeping my fingers crossed) He did not offer any new info than I already had found out - they still do not know what causes it. When I meet my regular Gastro. Dr. next week, I will ask him if celiac disease and the autoimmune hepatitus are related to each other or if one caused the other.

They used a needle to remove the liver sample, which I was glad of because I do not want to be cut up on - but with that said, I really really hate needles!

[crazymurdock]

  Di_gfree said:

I, too, hope it's a fluke; like Debbie said, let us know.

I just wanted to comment on the high liver enzyme numbers. I had that one time, too, and had actual pain in my liver at the time. I don't mean to take away from the topic of the auto-immune attack on the liver, but mine turned out to be from some chinese herbal medication I was taking through my naturopath! I stopped the medication, and my liver returned to normal. This was over 10 years ago before I was diagnosed with celiac, so the treatment wasn't for anything celiac-related. Just thought I'd mention this.

All that I was taken before this was a daily multi-vitamin and a B12 supplement. I am now taken a herbal supplement of Milk Thistle to help the liver do its thing. The doctors did not say anything about it yesterday. Thanks for your insight and expirences.

[Di-gfree]

Glad to hear you got the biopsy over with. Good luck with the results!

The stuff that harmed my liver wasn't a supplement, but an herbal remedy of some sort (if I recall correctly); so I wasn't trying to worry you about any supplements you might be taking.

[crazymurdock]

Still do not have any results or answers yet. The nurse called on Monday and asked me to come in for more lab work. When I asked about the liver biopsy, she said that there was some inflamation and the Dr. want to run more blood tests. Hopefully when the lab work comes back, I will be able to talk to the Dr. and see what is up.

[jackie-anthrohealthed]

I'm sorry you have to go through the frustrations of having to wait for more tests! Diagnosing AIH can be difficult at times, doctors want to rule out viral hepatitis or other possible autoimmune disorders before making the final diagnosis.

I was diagnosed with AIH at the age of 20 in 1996. Looking back, I had symptoms for at least a year prior to diagnosis. Although I haven't been tested for Celiac disease, I have tried a gluten free diet just to see the results. I lost a few pounds, which I attribute to not eating as much gluten, and definitely felt more energetic. I tried the diet because I had read, like you, that it's relatively common for those of us with AIH to concurrently have celiac disease.

If you're interested, there's a Yahoo group devoted entirely to those with AIH. You may be interested in joining.

Open Original Shared Link

And I've written a research paper on autoimmune liver diseases with an emphasis on the most common associated autoimmune diseases.

Open Original Shared Link

Feel free to ask any questions you have about AIH, I am here to listen and help!

Jackie

[casnco]

  crazymurdock said:

Well, I got through the biopsy yesterday, still will not know the results till the first of next week. Did get to talk to a Dr. about it alittle. The biobsy will tell if the blood test was a fluke or not. (Keeping my fingers crossed) He did not offer any new info than I already had found out - they still do not know what causes it. When I meet my regular Gastro. Dr. next week, I will ask him if celiac disease and the autoimmune hepatitus are related to each other or if one caused the other.

They used a needle to remove the liver sample, which I was glad of because I do not want to be cut up on - but with that said, I really really hate needles!

Good luck with getting good results. Glad that is out of the way. We're praying for a healthy liver. Keep us posted.

[crazymurdock]

I got to talk to the Dr. by phone last Thursday. The biopsy results were good news - he went through the list of good things such as no hardening of, no Wilson's disease, and so on. There is some inflammation. That was why he had ordered the extra labs - something to do with the soft tissue. I can not remember all the exact wording - but he basically said that my immune system is still fighting and that there was no need to go to medication now. I do not classify as having AIH. He wants me to come in every three months for continued monitoring. When I get to see him in person the next time, I will get more of the details for future reference.

At the moment it seems that I have dodged a bullet , but it is very helpful to have those like all of you on the this forum who have information and are willing to share both your experiences and knowledge with those of us who are in need of support, so thank you! Also a big thanks to all of you who offered prayers.

[crazymurdock]

  jackie_anthrohealthed said:

I'm sorry you have to go through the frustrations of having to wait for more tests! Diagnosing AIH can be difficult at times, doctors want to rule out viral hepatitis or other possible autoimmune disorders before making the final diagnosis.

I was diagnosed with AIH at the age of 20 in 1996. Looking back, I had symptoms for at least a year prior to diagnosis. Although I haven't been tested for Celiac disease, I have tried a gluten free diet just to see the results. I lost a few pounds, which I attribute to not eating as much gluten, and definitely felt more energetic. I tried the diet because I had read, like you, that it's relatively common for those of us with AIH to concurrently have celiac disease.

If you're interested, there's a Yahoo group devoted entirely to those with AIH. You may be interested in joining.

Open Original Shared Link

And I've written a research paper on autoimmune liver diseases with an emphasis on the most common associated autoimmune diseases.

Open Original Shared Link

Feel free to ask any questions you have about AIH, I am here to listen and help!

Jackie

Thanks Jackie,

I quickly scaned you research paper and plan to read it in more detail when my littles ones are asleep. It is very informative with facts that I had not found on the internet.

I recieved some good news from my Dr. last week. Though now I am now going to be more on the lookout for the out of the ordinary symtoms or changes.

Thanks again!

Erik

[jackie-anthrohealthed]

Great news! What a relief for you and your family.

I'm glad your doc will continue monitoring you. Do you have any idea what caused your liver enzymes to flare?

Just out of curiosity, did your doctor mention any reason why he thought you might have AIH? For instance, did he see that your antinuclear antibodies (ANA), smooth muscle antibodies (SMA), or antibodies to liver and kidney microsomes (anti-LKM) on the lab results?

How long does he expect your liver enzymes to be elevated?

Take care of yourself!

Jackie

[casnco]

  crazymurdock said:

I

At the moment it seems that I have dodged a bullet

Hey, great news! Sounds like everything will be alright. I would want to keep monitoring them also. Glad it is good news!

[crazymurdock]

  jackie_anthrohealthed said:

Great news! What a relief for you and your family.

I'm glad your doc will continue monitoring you. Do you have any idea what caused your liver enzymes to flare?

Just out of curiosity, did your doctor mention any reason why he thought you might have AIH? For instance, did he see that your antinuclear antibodies (ANA), smooth muscle antibodies (SMA), or antibodies to liver and kidney microsomes (anti-LKM) on the lab results?

How long does he expect your liver enzymes to be elevated?

Take care of yourself!

Jackie

He said the smooth muscle antibodies, and no he did not offer a time of how long the liver enzymes would be elevated.