I’ve just been diagnosed with PSC and I’m getting the impression there isn’t a lot I can do in the way of slowing progression or minimizing symptoms. My doctor told me to take calcium, vitamin D, multivitamins and avoid fatty foods but other than that there wasn’t anything I could do. Does anyone have any experience with certain diets that have helped out as far as maximizing energy and reducing symptoms? I’ve read a bit about paleo diets but the doctor seemed to think going to a nutritionist or naturopath wasn’t going to help at all.
Hilary, when I was going through the transplant evaluation, we met with a nutritionist. I explained how my diet was generally "everything in moderation" (no alcohol and limiting fatty foods). The nutritionist had no real recommendations or suggestions.
But someone who is at a more advanced stage of psc might have a different system that works best for them.
The longer a person has psc, the harder it will be for the body to absorb vitamins A, D, E, and K, so the supplements your doc stated is pretty good advice.
There have been some threads here about the paleo diet. You can do a search for those to see if you can see what might work for you.
I think you are picking up on the fact that managing psc is largely a degree of just managing its symptoms, which affect many people in many different ways.
My experience with my PSC was that my hepatologist told me that I could eat pretty much anything I wanted, although as Jeff stated moderation and limiting fatty foods is a good idea. As my disease progressed there came a point I just could not eat certain foods. The smell of the food cooking caused great nausea and I just couldn't hardly eat at times. So, you just have to eat what you can eat. Now for me, I tended to eat more fast food than I should have. Strange though, the healthy food smells my wife's cooking made gave me nausea, yet I could go to McDonalds and eat french fries and a fish sandwich and be fine. Go figure. I will tell you this that as your disease progresses and you start losing more weight, you may start to have muscle wasting. You will probably notice it first in your face. It's important during this time that you eat a high protein diet. My transplant team suggested the high protein shakes like Boost, Ensure, etc. You need to keep your protein levels up. I would discourage you from listening to anyone who starts talking to you about "liver cleansing diets". This can cause great harm to you. Always run things like this through your hepatologist. He or she will be your best adviser on these things. Once you get listed for transplant they will assign a nutritionist who will be available to give you guidance on your diet.
Finally, I want to mention the importance that you get regular exercise. It is so important that you maintain your "core strength" as your health begins to fail over time. You need to be in as good a shape as possible when the call comes for that transplant as you can. It will make your recovery so much more successful and less complications. There are going to be days you just don't feel like doing much of anything, but even if you can lift some 5 pound weights while you are sitting in your recliner that will help.
I wish you the very best.
PSC 2011 / Liver Transplant 7-2015
Thanks Mark and Jeff!
That's all really helpful advice. Interesting you talked about nausea, Mark. My GI doctor said it doesn't seem I've progressed very far into the disease yet but I do go through periods where the thought of certain food makes me sick and I won't eat much but I'm always ok with really starchy foods, and junk! Tough to avoid but certainly necessary to make that change away from it.
As to protein, general rule is 1g/kg body weight/day. If you couldn't eat that much, then you need to add protein powder. You may need to go over a little bit over that, if you already have already lost weight. Pay attention to the Nutrition Facts! Many protein powder brand has a very high concentration of sodium and very high calories.
Following is not an advertising. I gain no benefits from them. Just FYI.
I have a stash of protein powder from myprotein.com. You can get an average price of about $5/pound. Check slickdeals.net for deals from them.
I am 45 and was diagnosed with PSC one year ago. I immediately contacted Stanford to be part of their clinical trial on vancomycin. I also immediately and radically changed my diet. I went through all the screening at Stanford and when it came time to do my final blood work all of my LFTs came back normal and I was excluded from the trial.
I don't know if the diet normalized my LFTs or not, but they have been normal for the past year. I originally did the Specific Carbohydrate Diet but it has morphed over the past year to more of this: No gluten, no sugar (except found in fruit) very low dairy, only gluten free whole grains on occasion, and lots of whole fruits and veggies. I avoid processed foods and red meat. I eat fish at least once a week. I also supplement with Vitamin D, Calcium, and fish oil. I think the main thing for me is avoiding gluten and sugar. I feel good and have lost weight.
Please research vancomycin. I know quite a few people who are taking it with great results. Stanford should release their study results soon. If my LFTs begin to rise, I will be looking to have it prescribed for me.
To echo Dolphin, people with PSC are prone to fat soluble vitamin deficiency due to cholestasis. A good work around is supplementing with MCTs that don't require liver bile to be absorbed unlike most other dietary fat. The most flexible is coconut oil (~60% MCTs) because you can cook with it. You can also get 100% MCT oil which I found useful as my symptoms would flare with increased non-MCT fat intake (MCTs won't cause the hormonal response that tells your liver to produce bile). One additional note is that MCTs are absorbed very quickly so it is important to take your ADEK supplements at the same meal.
So, what about diet and shakiness? Can’t figure what the shakiness/tremor is from. I don’t think it is flapping, but could be. I question blood sugar issues. Any input is welcome.just when we thought the protein was helping, it is back, so I don’t think that was the problem.
So, what about diet and shakiness? Can't figure what the shakiness/tremor is from. I don't think it is flapping, but could be. I question blood sugar issues. Any input is welcome.
I've definitely got shakiness that happens after I walk for longer than 15 minutes. It always seems exercise induced
Dolphin 5-has the shakiness gotten better? Have you figured it out? I do hope so… I have used alfalfa tablets during periods of low blood sugar.
We are really into natural health. here are some of the things we have found to help.
Milk and dairy products are inflammatory foods and seem to cause instant infection to my husband.
The other major inflammatory food (whether your allergic or not) is glutens. We avoid them to help with inflammation.
We use a Vitamix-they have a program for people with severe disease. You can call them and get the info to apply for a free vitamix. This breaks down fruits and vegetables to small particles that are easily absorbed in your digestive system to max nutrition. This is the system that makes those yummy coffee drinks so smooth in coffee shops.
We add sunflower lecithin to his smoothies or he takes internally to keep his bile ducts smooth and open so he doesn’t get infections.
Just read a really interesting article about candida in the liver (and how eating coffee and steel cut oats is good for the liver for killing candida ).
We also did an elimination diet to find out what my husband was specifically reacting too.
Concerning diet, I have found 4 things that I find cause me grief. 1. Dairy - it causes a lot of inflammation. I went off of milk and then I watch my cheese intake. I feel much better. 2. Red meat - I find that my body has a hard time processing it. A doctor friend of mine reminded me of the phrase, “Beef, it’s what’s for dinner” and then suggested the following phrase should be, “lnflammation, it’s what’s for breakfast!” 3. Sugar - I find that I get sluggish when I have not only fatty foods, but foods high in sugar. 4. As mentioned above, just the amount of food you eat in one sitting. If I eat a lot, this taxes my system dramatically. You also mentioned supplements. This may be known by everyone here, but I didn’t see it mentioned. Whole food vitamins in general are much easier for the body to absorb. With PSC our absorption is usually compromised. We become deficient in the vitamins as mentioned by Mark, but often times the body can’t break down the multivitamin. I go for whole food vitamins first or I look for vitamins with chelated minerals. They are higher quality than your average vitamin. I also include a plant based digestive enzyme in my diet to help break down the foods I eat.
I’ve more recently eliminated meat from my diet and I can’t believe the change. I haven’t had a cholangitus flare up since (4 months and I used to get one weekly) and my liver enzymes are all within the normal range. I’m working not on getting enough protein but it can be tough (and expensive) if meat isn’t an option!
That’s very interesting about the sugar! I’ve started to notice it but it’s getting to be a part time job just managing my food intake properly. I haven’t noticed dairy but I’ll keep an eye on it now you’ve mentioned it. Do you depend on white meat for most of your protien?
I eat mostly turkey, chicken, nuts, beans and some fish. I often look for other plant based proteins like ground up flaxseed as well and add it to my diet. If I do any protein shakes it is always a plant based protein shake like Garden of Life RAW protein or Orgain from Costco. I do not have a perfect diet, but over the last 7 years I have begun to find what works for my system.