Autoimmune hepatitis: Any special diet I should be eating?

Posted by geedle12 @geedle12, Sep 2 7:41am

Diagnosed with autoimmune hepatitis 6 months ago. ALT and AST elevated. Was taking 3 mg of budesonide but recent blood test showed increase in enzymes so MD increased to 6 mg a day. I also have osteoporosis and am worried about taking steroids. I am reaching out to anyone who has AIH because I feel I need support. My endocrinologist has me on high calcium diet. Will this hurt my liver? Any special diet I should be eating? Any input appreciated!

Interested in more discussions like this? Go to the Autoimmune Diseases group.

Hi @geedle12, you're right to ask questions about medications, supplements and diet when you have multiple conditions to manage.

Fellow members living with autoimmune hepatitis like @charicen @lexonpark @rosemarya @geedle12 @techi might have some thoughts for you.

Geedle, did you tell you endocrinologist about your AIH and your concerns about calcium and medication interactions? Don't forget that your pharmacist is also part of your care team. They are great for checking drug interactions and even advising about supplements such as calcium.

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@colleenyoung

Hi @geedle12, you're right to ask questions about medications, supplements and diet when you have multiple conditions to manage.

Fellow members living with autoimmune hepatitis like @charicen @lexonpark @rosemarya @geedle12 @techi might have some thoughts for you.

Geedle, did you tell you endocrinologist about your AIH and your concerns about calcium and medication interactions? Don't forget that your pharmacist is also part of your care team. They are great for checking drug interactions and even advising about supplements such as calcium.

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Thanks I will check into this

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@geedle12

Thanks I will check into this

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I'd be interested to hear what you learn.

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@geedle12

Thanks I will check into this

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@geedle12, My PCP and my GI, suspected that I had Autoimmune Hepatitis. He prescribed prednisone to see if my liver functions would drop. He wanted to reduce the prednisone because of side effects, and he added Imuran in order to do that. This was 20 years ago, so I don't remember everything, but I do remember liver biopsies were involved. I did not have AIH.
He was very concerned about osteoporosis, too. It is a symptom of all liver diseases. He did a terrific thing for me – he ordered my 1st bone density scan!

Geedle, I like the suggestions that Colleen has made. I would like to ask you if you have been checked by a gastroenterologist (GI) because they have specialty training and knowledge of liver disease that our PCP's don't have?

How are you feeling? Does your body seem to be accepting the higher does of the steroid?

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From another AIH group I'm in, I can say that some people find the Autoimmune Protocol diet works wonders and some say it does diddly squat, so it's highly individual. Just make sure you're eating a healthy balanced diet (with the calcium recommendations you already have), and don't add any supplements without talking to your docs first.

Hugs and good luck!

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@rosemarya

@geedle12, My PCP and my GI, suspected that I had Autoimmune Hepatitis. He prescribed prednisone to see if my liver functions would drop. He wanted to reduce the prednisone because of side effects, and he added Imuran in order to do that. This was 20 years ago, so I don't remember everything, but I do remember liver biopsies were involved. I did not have AIH.
He was very concerned about osteoporosis, too. It is a symptom of all liver diseases. He did a terrific thing for me – he ordered my 1st bone density scan!

Geedle, I like the suggestions that Colleen has made. I would like to ask you if you have been checked by a gastroenterologist (GI) because they have specialty training and knowledge of liver disease that our PCP's don't have?

How are you feeling? Does your body seem to be accepting the higher does of the steroid?

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Hi Rosemary, I do see a gastroenterologist and a liver specialist. I also have an endocrinologist and have had a dexa scan. I do have osteoporosis. I just had surgery for hyperparathyroidism and had one parathyroid removed that had an adenoma. Because of this, I developed osteoporosis. I am now on a lot of calcium to help build bone back.
I had a liver biopsy that didn't show autoimmune hepatitis. They are suspecting I have it because my ALT and AST are elevated. According to my liver doc autoimmune hepatitis can be very spotty in the liver so when they do a liver biopsy they may not get it in the biopsy. I was just increased to 6 mg of Budesnoide twice a day instead of 3 mg of Budesnoide. I just seem tired all of the time. I understand that herpes simplex can cause elevated liver enzymes. Around 3 years ago when all of this started I had my first outbreak (married for 12 years). My dermatologist said sometimes this virus can be in your body and doesn't have to be from a sexual source. When I mentioned this to the liver and gastro doc they didn't seem to think herpex simplex could be the cause of elevated liver enzymes. I had an outbreak right before my last blood test and the AST and ALT were more elevated and is when she increased the Budesnoide to 6 mg per day. Can you give me any input on all of this. Thanks, I am so frustrated!!!

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@jedikaiti

From another AIH group I'm in, I can say that some people find the Autoimmune Protocol diet works wonders and some say it does diddly squat, so it's highly individual. Just make sure you're eating a healthy balanced diet (with the calcium recommendations you already have), and don't add any supplements without talking to your docs first.

Hugs and good luck!

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Hi, Can, you tell me the name of the other AIH group you are in? I would like to check it out. I do eat a mostly healthy diet and eat things sometimes I am not suppose to. Do you have AIH? Are you on medications and how are you doing? Thanks,

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It's the Autoimmune Hepatitis Support Group on FB – it's run by Dr Craig Lammert who does AIH research & treatment. Oh yes, I am on lots of meds right now. For a long time, I was just mainly on immune suppressants, but both Azathioprine and Mycophenolate tend to drop my white blood cell count lower than my local hepatologist would like, so they take me off them for a little while, until my liver numbers go back up. This last time, everything went to heck in a handbasket and now I'm getting a transplant, but that was going to happen eventually anyway, my liver was too far gone when I was diagnosed almost 5 years ago, and even then they thought I'd have 5, maybe 10 years until I needed a new liver.

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@geedle12

Hi Rosemary, I do see a gastroenterologist and a liver specialist. I also have an endocrinologist and have had a dexa scan. I do have osteoporosis. I just had surgery for hyperparathyroidism and had one parathyroid removed that had an adenoma. Because of this, I developed osteoporosis. I am now on a lot of calcium to help build bone back.
I had a liver biopsy that didn't show autoimmune hepatitis. They are suspecting I have it because my ALT and AST are elevated. According to my liver doc autoimmune hepatitis can be very spotty in the liver so when they do a liver biopsy they may not get it in the biopsy. I was just increased to 6 mg of Budesnoide twice a day instead of 3 mg of Budesnoide. I just seem tired all of the time. I understand that herpes simplex can cause elevated liver enzymes. Around 3 years ago when all of this started I had my first outbreak (married for 12 years). My dermatologist said sometimes this virus can be in your body and doesn't have to be from a sexual source. When I mentioned this to the liver and gastro doc they didn't seem to think herpex simplex could be the cause of elevated liver enzymes. I had an outbreak right before my last blood test and the AST and ALT were more elevated and is when she increased the Budesnoide to 6 mg per day. Can you give me any input on all of this. Thanks, I am so frustrated!!!

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@geedle12, I do not have any information to share with you. I am a patient and I rely on my own experience. I commend you for listening to your body and for bringing issues like the herpes simplex to the attention of your doctors.
How often are the labs drawn? My labs were routinely drawn every 3 months, with extra labs as needed. I felt like a pincushion sometimes! You said that you were diagnosed with AIH just 6 months ago, and I suspect that more labs, over time, will show a pattern that will show whether your body is reacting to the steroids for control of AIH.
It is okay to be frustrated because liver disease is a frustrating thing. It can be slow to develop, and difficult to diagnose and to treat. From my experience, the best thing that you can do is to: develop a healthy lifestyle with healthy eating and staying physically active, take the meds and calcium your doctor has prescribed, don't take any over-the counter meds or supplements without doctor's approval, no aspirin, and no alcohol. Trust me, it is easier than it sounds. And most important – keep a list of questions and symptoms to discuss with your doctors.

Keep me posted.

REPLY
@jedikaiti

It's the Autoimmune Hepatitis Support Group on FB – it's run by Dr Craig Lammert who does AIH research & treatment. Oh yes, I am on lots of meds right now. For a long time, I was just mainly on immune suppressants, but both Azathioprine and Mycophenolate tend to drop my white blood cell count lower than my local hepatologist would like, so they take me off them for a little while, until my liver numbers go back up. This last time, everything went to heck in a handbasket and now I'm getting a transplant, but that was going to happen eventually anyway, my liver was too far gone when I was diagnosed almost 5 years ago, and even then they thought I'd have 5, maybe 10 years until I needed a new liver.

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Thanks for the info I will check it out. Hope you feel better soon!

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@rosemarya

@geedle12, I do not have any information to share with you. I am a patient and I rely on my own experience. I commend you for listening to your body and for bringing issues like the herpes simplex to the attention of your doctors.
How often are the labs drawn? My labs were routinely drawn every 3 months, with extra labs as needed. I felt like a pincushion sometimes! You said that you were diagnosed with AIH just 6 months ago, and I suspect that more labs, over time, will show a pattern that will show whether your body is reacting to the steroids for control of AIH.
It is okay to be frustrated because liver disease is a frustrating thing. It can be slow to develop, and difficult to diagnose and to treat. From my experience, the best thing that you can do is to: develop a healthy lifestyle with healthy eating and staying physically active, take the meds and calcium your doctor has prescribed, don't take any over-the counter meds or supplements without doctor's approval, no aspirin, and no alcohol. Trust me, it is easier than it sounds. And most important – keep a list of questions and symptoms to discuss with your doctors.

Keep me posted.

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Thank you i will! Labs are drawn 1x month .

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