Does anyone have any idea about specific nutrition to maintain good liver health?
That is a good question. I am staying away from all fried foods, processed, cut out most sugars, I also decided to do a vegetarian diet but my Dr is not to thrilled with that because we need protein. I do finding that eliminating sugars, fatty foods, fried foods sruff like that helps. Best of everything to you!!!!!!!!!!!
I agree with Elsie and Stephen, however I've also cut back on caffeine, sodium and I avoid anything with artificial sweeteners. I also tend to lightly steam raw veg because it can be hard to digest with Ulcerative Colitis.
Good question. Good answers too!
Yes Sarah, Thank you for the reminder, I too am trying to cut back on sodium, no longer use artifical sweetners, but I must admitt I enjoy my two cups of coffee in the morning. I no longer drink soda of any kind, except ocassionally ginger ale when my stomach is upset. (My Dr said that was ok) Thanks for everyones answers, I love this group!!!
Thanks for all your replies. Looks like I'm doing all the right stuff.
I agree with what the others are saying. I had additional problems when my MELD score was over 40. Itching and diarrhea/steatorrhea (fatty yellow floating stools) were real problems. Fried foods, oil based foods, cheese and other diary products aggravated both problems. Coconut oil contains short chain fats and is much better digested than real milk. Using it instead of butter or margarine is helpful and a Tums after each meal binds phosphorous and helps a lot with the itching. Coconut milk has an oil that is easier to digest and is a nice substitution for milk.
I had a liver transplant 10 months ago and am much better now.
Good luck and may God be with you,
EAD3
My understanding of the PSC/coffee connection is that a significantly high number of PSC patients had not been coffee drinkers prior to developing PSC, so the conclusion drawn was that coffee drinkers were less likely to develop this disease. Once the disease is there, drinking coffee is fine but I don't think it's actually of notable benefit at that point. I'm a tea drinker myself (other than Starbucks frappacinos...)
EAD3 Thanks for the tums idea. I think I will try that. May I ask how long from the time you were diagnosed to the time you needed a liver transplant? I'm pretty scared of getting to that point. The research says about 12-15years. I hope i'm not being to personal by asking.
EAD3 said:
I agree with what the others are saying. I had additional problems when my MELD score was over 40. Itching and diarrhea/steatorrhea (fatty yellow floating stools) were real problems. Fried foods, oil based foods, cheese and other diary products aggravated both problems. Coconut oil contains short chain fats and is much better digested than real milk. Using it instead of butter or margarine is helpful and a Tums after each meal binds phosphorous and helps a lot with the itching. Coconut milk has an oil that is easier to digest and is a nice substitution for milk.
I had a liver transplant 10 months ago and am much better now.
Good luck and may God be with you,
EAD3
Dear Ferretlove,
I was diagnosed with PSC about 5 years ago. Once I got on the list it was about 2 months until transplant. I probably had PSC 3-4 years before I was diagnosed. The Dr’s said my case was unusual in that I did progress faster than most patients.
EAD3
I am happy you were able to get the transplant. Are you able to tell me what caused your PSC. I don't drink but I am overweight.
Mi Meme!!!! I was diagnosed with PSC April 2013. Mostly do to very elevated liver enzymes and I wanted to know what they all meant before I traveled overseas. Biopsy and MRI confirmed PSC. I am at an early stage though. As to what caused it they are not eniterly sure. A thought process is that PSC is an auto-immune disease. another thought was that when I traveled to Thailand in 2011 I possibly picked something up then, although that is the least likely scenario. Yes I am overweight too and I do not drink. I do not believe in anyway that is the cause. Glad u wrote in Meme. This is a great group. My daughters were very distressed when they heard about this disease and wanted me on the transplant list immediately but was told not until I am at stage 4. Hope all is well!!!!!
Thank you for the reply Elsie, It is strange how some get it and some don't. But happy to have found a support group. I have yet to tell my kids. I don't know if I should or do it later when they really need to know. I want them to have a normal life and treat me normal as long as possible. What do you recommend?
elsie said:
Mi Meme!!!! I was diagnosed with PSC April 2013. Mostly do to very elevated liver enzymes and I wanted to know what they all meant before I traveled overseas. Biopsy and MRI confirmed PSC. I am at an early stage though. As to what caused it they are not eniterly sure. A thought process is that PSC is an auto-immune disease. another thought was that when I traveled to Thailand in 2011 I possibly picked something up then, although that is the least likely scenario. Yes I am overweight too and I do not drink. I do not believe in anyway that is the cause. Glad u wrote in Meme. This is a great group. My daughters were very distressed when they heard about this disease and wanted me on the transplant list immediately but was told not until I am at stage 4. Hope all is well!!!!!
Good Evening Meme!!!! I do not know how old your children are, mine are 22 and 25. My ex and I told them fairly soon after I was diagnosed. I am glad I did so they have a time to adjust and knew what was going on. Fortunately I am at an early stage so I am not too bad now. I guess it all depends on maybe the age of your children, and how well u think they might handle this news. Please let me know what u decide to do, again this is an individual thing. What stage are you at? if early like me, probably is ok to wait and tell your children.
Best of everything!!! Keep in touch!!!!
Hi Elsie,
I was diagnosed when I went to the emergency room in March with horrible side pain, I have seen 3 different hemotologist up to know. two say I am in the early stage and one said I might have cihhrosis. My MRCP shows I had two areas in the liver that collapsed. I think I am mid level. My alkaline phosphate is 340 and the other two enzymes are in the mid forty range. So that means I have continues ongoing damage to the liver. I too have uncontrollable hives and have been diagnosed with connective tissue desease with possible lupus. My kids are the same age as yours. They suspect something is wrong my youngest knows something horrible is going on because I have changed drastically in the past two years. My endless energy is no longer my normal and even though I try to hide it I get really depressed.
do you know if anyone suffers from hair loss due PSC. I am loosing a lot of hair really fast. I have to say I feel better since I found this support group and have friends like you that understand.
Thanks!!!
I hope you have a good doctor that will support you through this. I wish I was close to you so I could support you. I have noticed for myself that I seem to be losing more hair than usual. Try and get some more info on where u r at and what PSC is all about so u can present that to your children. That is a tough one. Again I hope u have a good medical team.
Keep in touch!!!
In reply to your original post:
I am also trying learn about this. Since some people have have had success with various low carbohydrate diets I have decided to give it a try. I start by going "paleo" for a month. To begin with I am trying the basic paleo, though I suppose the paleo "autoimmune protocol", or the paleo similar "specific carbohydrate diet" might work even better. These seem so strict, though, that I suspect I am not able to stick to them, unless I first get some encouragement in the shape of some success with a slightly less strict regime. Will let you know how I do!
All the best wishes
Mats
Interesting- I traveled to Thailand in December 2013 and started showing signs that following March. I was diagnosed in May. I'd be surprised if it was something I picked up there, but who knows?
elsie said:
Mi Meme!!!! I was diagnosed with PSC April 2013. Mostly do to very elevated liver enzymes and I wanted to know what they all meant before I traveled overseas. Biopsy and MRI confirmed PSC. I am at an early stage though. As to what caused it they are not eniterly sure. A thought process is that PSC is an auto-immune disease. another thought was that when I traveled to Thailand in 2011 I possibly picked something up then, although that is the least likely scenario. Yes I am overweight too and I do not drink. I do not believe in anyway that is the cause. Glad u wrote in Meme. This is a great group. My daughters were very distressed when they heard about this disease and wanted me on the transplant list immediately but was told not until I am at stage 4. Hope all is well!!!!!
Hi Everyone,
There are so many theories. Some doctors still preach that there is no correlation between the diet and the disease, but I am a strong believer that there is. I am trying to feed my daughter along the lines of the "Paleo Diet". I must be honest and say I do allow her to deviate, but I am however very strict along the lines when it comes to "No Dairy" or "Gluten". I try to buy only organic fruit and vegetables and also feed her organic, grass fed chicken breast, beefsteak and seafood. I try my best not to give her processed foods and only give her "gluten-free", "dairy-free" cakes and cookies on special occasions, such as birthday parties etc. She is also allowed "gluten-free" and "dairy-free" pizza on special school pizza days. This usually consists of the "gluten-free" base with no cheese and just vegetables and chicken breast on a lightly tomato sauce covered base. If I had it my way she would have no processed or foods that were not organic, but as she is only a child, I do realise that I have to give her some freedom. When I have been extremely strict with her I have noticed a huge difference in her bloodwork. That would entail me giving her smoothies every morning that consisted of a piece of ginger, 1 teaspoon of tumeric, fruit and vegetables and plant protein. I would also give her Nutrasea plus vitamin D, liquid calcium and vitamin C. I would cook vegetables, chicken breast, beef steak, fish or seafood with quinoa and a small amount of rice. She would eat mostly fruit as a snack.
I am no expert, but from what I have gathered it is better to be able to have your own organs for as long as possible. I know alot of people believe that a transplant is an easy fix, but the more I read it seems unless you have reached the later stages the opposite is true.
Take care as always,
PrincessD's Mum
Similar to PrincessD, my diet is strictly gluten-free, but also vegan. I've eliminated all animal products (except for fish oil) from my diet completely. Protein has been replaced by plant-based protein (I use Plant Fusion), usually blended with freshly juiced raw vegetables. I also take daily natural supplements; NAC, lipoic acid, milk thistle, fish oil, selenium, multivitamin, as well as a variety of therapeutic-grade essential oils (DoTERRA or Young Living). I rub geranium oil directly on my abdomen after I shower, as it helps with pain and is believed to act as a vasodilator, promoting dilatation of the bile ducts. I add lemon and peppermint oil to green tea- green tea is a powerful anti-oxidant and the added oils act as an anti-inflammatory.
The results have been astounding!! Almost immediately upon adhering to this diet, my liver enzymes have all returned to normal. Six months post-diagnosis, the disease is now asymptomatic. No more jaundice, itching, nausea, or loss of appetite. Stool and urine are normal. I'm at a healthy weight and my blood pressure has returned to normal. I now have lots of energy and overall I'm healthier than I've ever been in my life. I still have labs drawn monthly to monitor progression, and still the values continue to decrease. I should note that my bile ducts are scarred beyond the point of stent placement. My specialist tried twice via ERCP, but failed at both attempts. He has said more than once that he is surprised at how normal my enzymes are given the condition of my bile ducts, and tells me to continue whatever regimen I'm currently on because it's "obviously working".
The dieting was a huge adjustment for me- I love breads, pasta, red meat, and cheese/yogurt. However, the normalizing LFT's have been more than enough motivation for me to continue dieting. Liver transplantation may be inevitable later on down the road, but I'd like to prolong it as much as possible.
Diet therapy is VERY POWERFUL!!! It has been the most effective method for controlling my PSC, and I strongly urge others to at least explore the option.