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Primary Sclerosing Cholangitis (PSC) - Online Support Group

Diet?

Just Out Of Curiosity Does Anyone Follow A "PSC" Diet? i always wondered are there certain things i should stay away from (besides the obvious alcohol) i pretty much eat and drink as i please. please let me know if anyone here knows of foods that are harmful to the liver and if i should stay away from them! Hope To Hear From Someone rather Sooner Than Later!

-Randy

check out these posts:

http://www.livingwithpsc.org/forum/topics/interesting-articles-for-people-with-impaired-bile-access

http://www.livingwithpsc.org/forum/topics/turmeric-curcumin?commentId=6288168%3AComment%3A22177

http://www.livingwithpsc.org/forum/topics/gluten-free?commentId=6288168%3AComment%3A22183

We have not been restricted to a certain diet as of this time, but we have been warned about too much white sugar and since my husband has varices in his esophagus, we are staying low on the salt intake. Better sooner than later. Of course the fatty fried things are not good either. Hope to hear more......

also check out this thread:

http://www.livingwithpsc.org/forum/topics/dietary-advice-psc-and-colitis-in-children?commentId=6288168%3AComment%3A24604

Hi, Randy,

Depending on the stage of your liver disease and how much bile gets into the intestine, our diets may vary. For me, with stage IV cirrhosis, I have to watch the fats that I eat. I avoid cheeses, other whole milk dairy products, and fattier meats. Too much whole grain and bran also may be a problem. Otherwise, explosive diarrhea may result.

As far as foods that are harmful to the liver, (besides alcohol), fattier meats, salty foods, and high sugar or fructose content foods should be avoided.

Stay Healthy and Active!

EAD3

Hi Randy-

I would have to say that Diet is essential for anyone with a liver disease. Our livers do so much to help filter out toxins and digest foods, that what we put into the body should be considered everytime. When I was initially diagnosed I had to speak with a nutritionist who had told me that I was really only allowed 20-30 grams of fat per day. This may vary per person, but prior to my diagnosis I had a constant upset stomach for years. I took my diet into serious consideration, I started cutting out high fats. Then, with weight gain with prednisone therapy, I began juicing fruits and vegetables. I have found with my diet becoming "cleaner" (cutting out more dairy, processed foods, meats, etc) I have a lot of energy. I work out also which has also kept my energy levels up. I have also found when I eat things that are not so good, I feel sick and tired.

I can honestly say since I have altered my diet and excercise regularly, I feel the best I have in many, many years, and this would seem to be an ironic case considering the fact that I have overlapping liver diseases. So take care of your body, and research the facts about foods. Other than the one time I saw that nutritionist, I do not think it is coincidence my doctor does not discuss proper nutrition, considering I might just get better and then they wouldn't be able to bank on my "business." I am looking at becoming vegan due to the great results I have had with my current diet changes. The body has an innate ability to heal itself when it supported by the proper nutrition, and since a liver can regenerate why couldn't this disease be sent into remission by a healthy lifestyle!

High hopes,

Katie

PSC is an autoimmune disease. most autoimmune diseases have links to plant proteins. gluten is especially bad for PSC. i provided many links that can be helpful for people regarding diet and PSC. to each their own.

G'day Randy,

In June last year we started my son on a gluten free diet - leaning towards more protein and lower carbs (without being low carb in the true sense). Within 1 month, his inflammatory markers were back in the normal range. No real impact on liver enzymes initially. Crohns has been in remission since this time.

In September I added a multiflora probiotic as a result of reading some research that reported on some adolescents with PSC who went into remission using probiotics. At our November specialist visit (2 months later) , his liver enzymes were back in the normal range. We go for our next appointment in a couple of weeks, and we're hoping for a continuation of 'normal' range for inflammatory markers and liver enzymes, 'remission'!

His medications are prednisone, 6-mercaptopurine and ursodeoxycholic acid. It is difficult to know which of the medications / diet / supplements / combinations of all 3 are working the magic.

However, I really think the combination of gluten free diet (leaning towards high protein to encourage a good gut environment for beneficial bacteria) and probiotic supplements are major contributors to the 'normal' results. Changes in medications and/or dose will test my thoughts out!

Good luck!

A

Research,research,research.

I have stage lV PSC. A lot of my time and energy is spent on what I can eat. It takes me twice as long as most to food shop. I read every label. I am limited to 2000mg of sodium a day. I'll grab 5 different brands of yogurt comparing sodium content. I eat a lot of freash fruits & veg.,fish and chicken. About 6 months ago I was craving a burger & went to Wendy's. All I had was one burger. I could not move for 2 days afterwards. Diarrhea,body chills,sharp stabbing pains, the works. Lesson learned.

Diet is a huge factor. It's hard at times to stay committed to a clean diet but look at this way, you enjoy that burger for 10 minutes but is it REALLY worth it? Nay is a burger,coke and fries guy. We'll go to an amazing restaurant on vacation and he'll try to order a burger! Umm no. I DON'T ALLOW IT and as a hot headed Latina he chooses his battles wisely. Every time I veto a greasy burger he hates it (and does a bit of whining) but agrees that it is horrible for him and thanks me later when the chicken tastes good too. We started with small changes, we switched lettuce for kale in his sandwiches. Soy cheese instead of cheddar slices. Lactate free milk instead of whole. Vitamin waters instead of fructose drinks. Little changes at a time that he didn't notice. If it tasted bad, he threw it away. As you can imagine my blood boiled at the waste but I understood. He wants to enjoy his life and eating is a part of that happiness. No fructose at all. Very little salt (In-an-out makes salt free burgers that Nay can have once in a great while. They taste exactly the same.) you'd be shocked at how much salt is in everything, read labels. Very little sugars. Nay gets horrible gas with dairy, we cut a lot of dairy out. Very little red meat. Lots of veggies and fruits, I've done some readings on what veggies are good for Nay and push a lot of those. Tea at night, I found a turmeric and nettle leaf blend that he doesn't hate. I can put together a menu of our week if you'd like some ideas. I could go on and on...

-A

My liver does not respond to creamy foods. I experience a dumping effect which results in an overall feeling of exhaustion. I keep my TUMS with for instance relief. I heard a Gluten Free Diet can be helpful. HOPE

I, too, have dramatically modified my diet in the last year and a half and have had some success. Before I went on my new diet my alkphos, alt and ast were very elevated. After I started the new diet all three of those levels took a dramatic dip. My diet consists of no gluten or dairy or processed foods.

Katie said:

Hi Randy-

I would have to say that Diet is essential for anyone with a liver disease. Our livers do so much to help filter out toxins and digest foods, that what we put into the body should be considered everytime. When I was initially diagnosed I had to speak with a nutritionist who had told me that I was really only allowed 20-30 grams of fat per day. This may vary per person, but prior to my diagnosis I had a constant upset stomach for years. I took my diet into serious consideration, I started cutting out high fats. Then, with weight gain with prednisone therapy, I began juicing fruits and vegetables. I have found with my diet becoming "cleaner" (cutting out more dairy, processed foods, meats, etc) I have a lot of energy. I work out also which has also kept my energy levels up. I have also found when I eat things that are not so good, I feel sick and tired.

I can honestly say since I have altered my diet and excercise regularly, I feel the best I have in many, many years, and this would seem to be an ironic case considering the fact that I have overlapping liver diseases. So take care of your body, and research the facts about foods. Other than the one time I saw that nutritionist, I do not think it is coincidence my doctor does not discuss proper nutrition, considering I might just get better and then they wouldn't be able to bank on my "business." I am looking at becoming vegan due to the great results I have had with my current diet changes. The body has an innate ability to heal itself when it supported by the proper nutrition, and since a liver can regenerate why couldn't this disease be sent into remission by a healthy lifestyle!

High hopes,

Katie

I found out through dietitician at transplant preassessment that I've been eating waaay too little protein and calcium - which I realized was quite true as I'd been very focused on minimizing fat intake. Have since begun eating eggs daily, eating more quinoa, almonds and almond butter good for snacks, edemame beans which I love and Greek yogourt. Meat 2x a wk. Liver-related disease is muscle-wasting so necessary to keep the protein higher. Less sodium so am keeping all forms of processed foods to a minimum and watching all labels carefully. Was also told can add more fat to diet. Wish the docs would have made these suggestions ages ago.

The only thing I have ever heard of was ammonium free products (like antiperspirant)

Also, I think avocados are good for the liver

I’m following the Gerson Diet and it seems to be helpful.

Hey Dakota Kid

I've heard great things about the Gerson diet. What has been your experience? Has it helped symptoms or liver enzyme levels?

-Ricky

Dakota Kid said:

I'm following the Gerson Diet and it seems to be helpful.

It does not seem like it has affected the enzyme levels to much but it has given me more energy and I just feel better overall. Still hoping to see an improvement in the labs. I am answering for my wife.

Cool. I try to monitor my PSC with diet and supplements as well. My labs have seen an improvement but still haven't gotten down to "normal" levels. I basically do a version of the paleo diet. My hope that after a while of eating healthy that the labs will continue to improve.

Dakota Kid said:

It does not seem like it has affected the enzyme levels to much but it has given me more energy and I just feel better overall. Still hoping to see an improvement in the labs. I am answering for my wife.

Low in fat, low in salt, low in sugar, bland (not spicy because it makes me itchy), using bran cereal and prunes for fibre.

I eat cheese, eggs, milk, yogurt. I eat meat, and more is better (reduces itchiness), and the quality of the meat counts. If I buy sandwich meat, it's mainly chicken breast. All the others are pretty salty or fatty. Also, for dinner meats, chicken is better than ground beef. (The food I get the least energy from is spaghetti with ground beef.) I eat steak occasionally. Fish is good once a week. Skinless chicken breasts are better than chicken legs or thighs because they are lower in fat.

I eat oatmeal cereal every night.

My gastroenterologist said to drink two cups of coffee per day because there is some evidence it slows the progress of the PSC. He only told me that this year (in this the 15th year of visiting him and having PSC). I'm trying that. Also he suggested taking probiotics and vitamins. I haven't tried these yet.

Sugar can make me incredibly tired if it's in baked products, so I try to avoid cookies, cakes, pastries, and the like. However, if I add it to homemade strawberry sauce, oatmeal, or coffee, it seems to be okay.

I eat avocados daily as a sandwich spread. I eat a salad every day and one cooked vegetable.

Very little processed food. Some fresh fruits (oranges, pears, apples, bananas mainly.)

Hope this helps you or somebody reading this!

Lara - Interesting about the coffee! (I guess frappacinos don't count......) Sounds like your diet for PSC is quite sensible as per what dietitian told me. Minimal processed foods vital to keep sodium in check. Been experimenting with quinoa or bulgar wheat (high in protein) with cranberries for breakfast and other ingredients added for lunch/supper like spinach or kale. Egg a day, sometimes 2. Snacking on edemame beans, also good source of protein.