This video will change your life! Especially when it comes to how much nutrients your body can handle, which is more then we've been told!
If you have Netfix
http://www.netflix.com/WiMovie/70123196?trkid=2361637
or Meta
I have PSC and until recently haven't had any issues. Within the last few months my liver enzymes are up and down, have some shortness of breath and once I had RUQ pain that latest for several hours and went away. I'm on Prednisone (new to this) which helps with the breathing and seems to help with the liver enzymes. I may have to do long term low dose Prednisone and we are in the process of determining that. I've lost about 15 pounds over the last few months but gained 9 pou...nds back. I'm not a big guy and my normal weight has been around 145. I'm at 140 now after going down to 130. I gained the weight by eating almost 3000 plus calories per day. I cut down on the calories and once again I am starting to see my weight slowly decrease. I've been trying to eat healthy but in order to gain\maintain weight I have to each foods high in calories which most tend to be not so healthy. I'm scheduled for a colonoscopy in a few weeks. Can anyone recommend a diet that helps maintain\gain weight and not cause my liver to cry out from too much fat? Thanks. New to all of this.
If you're taking the low dose Prednisone you are going to want to maximize your calcium intake (it's hard on your bones). So...full fat yogurt. In the summer you can do salads with farmer's market veggies with olive oil....lots of olive oil. Better still make a salad dressing with yogurt, olive oil, salt, pepper, vinegar and load it on everything. Good on baked potatoes as well. I've been on the SCD diet for two years now and it has helped tremendously with my Crohn's disease and also...interestingly enough....my liver enzymes have now gone down to where they are either at normal or very close to it. Coconut oil is very easy on your liver so you might want to look into that. Coconut oil is an excellent substitute for butter or shortening in baked goods. If you haven't already ditched the margarine in favor of butter please do so. The butter fat is much easier on your body than the canola oil. Try using almond flour (ground almonds) in place of some of the flour in baking. It's higher in fats but easy to digest. Let me know if you want more info.
Thanks for the info mmarques. I am taking Citracal Max for the calcium. Having a bone density test next month so we will see how that goes. Thanks for the all diet tips. I have ditched the margarine for butter. I must say the baked potatoes are yummy with butter. I will try the Coconut Oil. Thanks again.
Hey ya Pscnofun Im sorry your having these issues with weight. mmarques has some ideas that are really good! But i have some ideas as well, for weight gain, preserving your liver and eating to live longer. Instead of putting on weight with fat, use carbs. My liver cant handle to much olive oil, full fat yogurt or butter. But you dont need to eat HEAPS of fat to put on weight, fat is essential and good fats are better! (olive oil is a good fat)
So here are a few ideas for weight gain with a super healthy diet: (Carbs)
Sweet potato (in New Zealand we call it Kumera)
Brown or basmati rice
Quinoa with Amaranth (Quinoa is high in calories)
Oats (or gluten free organic alternatives to oats)
Quinoa with Amaranth recipe (this doesn't taste very good, but I dont eat for taste anymore haha)
1.5 cups of Quinoa
1/2 cup amaranth
1.5 boiling water mixed with veggie stock (I have a gluten free one)
2x teaspoons of peanut butter
bring to boil and simmer for 20 mins or until all moisture has absorbed
I really recommend you start juicing veggies and adding super foods to super charge your immune system like I do. I have endless ideas to extend our already shortened lives with the science to back it up. (personal message me if your interested)
Please watch Food Matters, its an entry level documentary about food.
http://www.netflix.com/WiMovie/70123196?trkid=2361637&leid=534
or
Thanks for the info. I'll look at your suggestions.
Hi, Mayuri. As I understand it, most people who have PSC have UC or Crohn's also, but not everyone.
mayuri said:
Hei Stephen,
pardon my ignorance ,... bt is UC nt always relwted to PSC?
Stephen Cox (formerly Big Steel) said:Mayuri, has asked about diet for PSC but her Mother , ( Mayuri is the caregiver), also UC and it is active.
Thx,
Stephen
I post this a reply to a post with a reasonable topic. Please forgive me if this is not not best place to post it. I hope that those concerned will find it anyway, or if not, a moderator will move it to better place.
A long time ago I started to try the Specific Carbohydrate Diet. I was prompted to do this by a number of success stories here on Living with PSC. Even though I can no longer find my original post, I remember that I promised that I would share my experiences, and I feel this follow-up post is starting to be long overdue.
First a brief recap of my history with IBD and PSC:
My UC started in the early 80-ies. It was unsuccesfully treated with whatever medicines were availabe back then, but was not too bad. However, in 1993 a colonic cancer was found, and the colon and rectum were removed. After 18 months with an ileostomy I got a pelvic pouch instead. This worked fine for the first 15 years, after which time I was starting to get recurring inflammations (“pouchitis”). At some point a doctor noticed that my liver related blood work did not look right, and after a first ERCP I was diagnosed with PSC in 2010. In the years that followed the pouchitis was getting worse (it would start again right after a successful treatment with antibiotics), my liver blood work remained poor, and I was starting to feel very tired most of the time. I had MRCP and ERCP yearly, and a one point a bile duct was dilated during an ERCP. However, I still had no serious problems from my PSC.
About this time I started looking seriously for a diet change. I saw several reports of people in this forum that had successfully tried SCD, so I decided to give it a try. The first few weeks I felt very strange, but after 3-4 weeks I felt much better. It felt like I became 10-20 years younger in a months time! My liver values also started to improve, and have steadily improved since. I try to attach graphs for some parameters, but the short story is that ALAT & ASAT are since several years within normal values, while ALP & GT are now just outside of the normal range.
I still go to a yearly MRCP, but they always seem to say “no change since last year”, and I have not been to an ERCP for several years. My current doctor seems to think the risks of ERCP out-weight the benefits, and I will not have one until the MRCP shows some change in the wrong direction (that would be more restrictions in the bile ducts). I am on no medication except for urso, but it seeems to have no effect (I eat it on trial for the last 2 years).
The diet? The Specific Carbohydrate Diet is one of many low-carbohydrate diets, but the core of the diet is to avoid di- and oligo-saccharides, while monosaccharides and and non-digestible starch is OK. You should also eat no cereals. It has long lists of “forbidden” and allowed foods, which is convenient. I must admit that I have started to cheat with some things. E.g. potatoes ar forbidden (too much digestible starch) but I seem to tolerate a fair amount nowadays. I also eat some products with corn flour, but do try to stay away from anything with gluten and lactose.
I think trying SCD (or perhaps any low carbohydrate diet such as e.g. paleo, LCHF or FODMAP) may be worth it for all of those who suffer from IDB and/or PSC. There still seems to be no good long-term medical treatment available to most of us, with the possible exception of oral vancomycine, which, at least here in Sweden, the doctor seem very vary of.
I tried to keep this short, but feel free to ask fo more details if needed.
Mats,
I hope this diet works well for you.
Jeff
There’s a new pre-released study titled “[Demonstrating the Beneficial Effect of Low Protein Diet in Primary Sclerosing Cholangitis through a Randomized Clinical Trial and Multi-omics Data Analysis” https://www.medrxiv.org/content/10.1101/2024.02.23.24303167v1.full.pdf
It suggests that a low-protein diet may be more effective than SCD for PSC. It’s very small but does explore the mechanisms of action. Any diet that reduces the intake of processed foods is going to be better than nothing.
It may well be that a low protein diet is the right for many/most people suffering from PSC. We are all different. I just shared my experience. The important take-away is probably that as long as there is no readily available treatment you should consider looking at the diet. For whatever it is worth, my uneducated guess is that a “low everything diet” might be the best for anyone suffering from liver problems.