New to the forum here and really excited to be reading and learning from all of you. My husband was just diagnosed with PSC, autoimmune hepatitis and celiacs (he’s had UC for 10 years). He’s super early stage in his PSC and is asymptomatic. We found the PSC as we discovered his symptoms were presenting from the hepatitis.
Anyway, we’re working with our doctor on meds to treat the other conditions, but we’re also diving down the rabbit hole of food. We’ve just started the AIP diet so we can figure out which things cause inflammation for him (obviously gluten is a no-no with celiacs and we also already knew he had a dairy problem).
The issue we’re running into is basically this – standard recommendations for PSC diet and anything liver related is low-fat (like 30g a day). Since going through this recent flare up my husband has lost 10-15lbs, so now that we’re in recovery we’ve got to make sure to bulk him up. Doing that without fat is hard! Obviously we’re avoiding fatty foods like anything fried, processed junk food, etc. But what about healthy fats? Especially majority MCT fats like coconut oil? Should we limit those to only 30g a day?
Right now we’re basically doing a blend of both – AIP (until we know his triggers) and fat conscious (but not worrying too much about the 30g).
What have everyone else been doing? Do you care about fat intake? Are you doing anything else besides paleo, SCD, AIP?
My hepatologist never placed diet restrictions on me with my PSC other than watching too much salt intake. Diet will not change the course of PSC. He needs to eat what he can handle digestion wise and he should be ok. Of course with decreased bile flow it will affect the breakdown of fatty foods. Be prepared for diarrhea at times. PSC is so unpredictable you just have to go with the flow.
Beware of any liver cleansing diets. They are all a scam. Best wishes to you both. We are here to support you.
PSC 2011 / Transplant 2015
People with cholestatic liver conditions have a harder time processing most dietary fats due to decreased bile flow. This gets worse as the disease progresses. Fats are important as a source of calories (over twice as calorie dense compared to protein and carbs) and are necessary for the absorption of fat soluble vitamins. PSC is notorious for causing fat soluble vitamin deficiency and related problems such as osteoporosis.
If fats are tolerated then I personally believe there is no reason to limit. I’d argue that due to absorption issues they are particularly important for PSC patients.
If fats are not tolerated (steatorrhea or other PSC/GI symptoms) or if one is running an ADEK vitamin deficit, there is a dietary hack to work around the fat absorption problem. Most dietary fat induces the liver to produce bile and requires bile to be broken down and absorbed through the gut. Short- and medium-chain fats neither induce bile production nor require bile for absorption. The problem is that there are few natural sources. Coconut oil has a good chunk of MCT and can be used in cooking if one is careful. MCT oil supplements are an alternative that are 100% medium-chain fat (though don’t cook with these!).
When I was symptomatic my problems were weight loss (30 pounds in a month) and PSC symptoms that seemed to correlate somewhat with fat intake. I’d dump a tablespoon of MCT oil in my drink or with each meal as a source of calories and to help bring up my vit D levels. In combination with vanco treatment I got my weight and vitamin levels back up to normal.
If his doctor has not already done so, bug him/her about checking vitamin ADEK levels and get a DEXA scan to check for bone density.
Mark and JTB gave good advice. Low sodium is good, but a well-rounded diet is best, in my opinion. And NO alcohol as well.
PSC patients tend to have low levels of vitamins A, D, E and K, as these are fat soluble and not absorbed well. So maybe some extra vitamins there. And keep up the protein as well.
Yes all good info here. Thank you! We are already on the MCT oil and are getting a ton of bloodwork done over the next two months at regular intervals, so we’ll be able to track nutrient levels. Definitely on the low sodium kick and just trying to eat a variety of nutrient dense foods. This is good practice for literally anyone.
I think paying attention to stool to see how well fat is being processed is going to be the way to go. In the meantime we will still be conscious of fat intake but not crazy restricted.
We’ve been dealing with colitis for years, and there’s always ups and downs with that. Well aware of the rollercoaster and don’t expect food to stop things in its tracks. But I really think food can be used to support or at the very least not further hurt the body and it’s autoimmune responses.
Welcome! I was diagnosed in 2007. By choice I’ve been a pescatarian for over 10 years. I stay away from fried foods generally. But I’ve never been restricted or advised to eat a certain way by my docs.
I’ve been diagnosed with PSC for approximately 4 years with no really bad cholangitis attacks until the last three months. That being said I’ve always felt the effects of fried food fairly quick. After a very bad three months I’m on a 50-60 gram fat diet. It’s been tough, trying to learn and adjust is just plain hard. Especially since most oils, butters and dairy are filled with fat. I stay away from red meat and sub super lean turkey meat, chicken or varieties of whitefish. I’ve purchased a few different sauces and dressings with 0 or close to 0 fat. Walmart has most variety. All the health food stores and very little low fat or zero fat foods (Whole Foods etc…). My cheat snacks/foods are pretzels with/out salt, baked lays, organic gummy worms. There are some low fat cheeses which taste pretty rough but it’s better than not having any. Coconut oil from my understanding is terrible for fat and worse than butter (I’m no doctor though, but anything that hardens I’m cooler temps is no bueno. Canola oil spray has 0g fat but I use it super sparingly and try to stick to the sauces and dressings as marinades. Good luck! Let your husband he’s not the only one out there.
l was diagnosed 15 years ago and have had three attacks, the last one when prescribed Augmentin (do NOT take!!!). otherwise, relatively symptom free. It was very evident that eating fatty foods did not agree with my system, so I have been eating lean meat, especially love fish, vegetables, fruit and unfortunately I do have a sweet tooth. A couple years ago I went gluten free and I believe that has helped, because if I do eaten a little gluten now, I immediately have an upset stomach and need to rest/sleep. I need to reduce sugar, interested in how others approach their diet. Best of luck!
Hi. My husband has had PSC for 10 years now and now the doctors are letting him know that a transplant is in his near future. That said our doctor who thankfully is also well rounded in nutrition as I am indicated no dairy. We have done that. We stay away from processed foods also. I have read so many books on diets for a healthy liver and how to stave off cancer and all books state to stay off of dairy. I hope this helps a bit. Good luck as this is an interesting journey.