Primary Sclerosing Cholangitis (PSC) - Online Support Group



Lara - Would it be too much to ask where that support would be for the '2 cups of coffee' recommendation? I did light research after reading your post and found the recent reports regarding PSC and coffee consumption. Yes, PSC patients are drinking less coffee then the average person. However the reports are not very detailed. PSC patients are advised against heavy coffee consumption; at least that is what we were told and I have read it several times online (light unfiltered coffee once a day is tolerated). The list of pros is pretty similar in size to the list of cons when it comes to PSC. There is no mention of diet restrictions either which would explain why PSC patients drink less coffee. Basically, the reports seems to simply survey coffee consumption. I will keep looking though. If I find something I will report back. -A


I agree that the coffee recommendation seems strange to me. In my humble opinion it would seem that coffee consumption could potentially be inflammation inducing. I guess the effects of coffee could have different effects on everybody. When I drink too much coffee I get jittery and anxious. I'd be interested in hearing more if anyone has something to add.


I try to eat a variety of things. I keep testing foods to see what I can eat. If I get sick, I don't eat it anymore. Like I used to go to Subway and what I thought was a healthy sandwich was actually making me sick and throw up. So logic is, don't eat there anymore. It is just mostly trial and error. Unfortunately with gluten free, a lot of foods are really more expensive and if you are more on a budget for grocery shopping that is not always the wisest choice. I tend to not buy those only because my husband should not have gluten free because I should not eat it. I just choose my foods.


I don't consider myself qualified to give advice on PSC diet so what I am about to say is clearly antidotal please take it for what it is worth. I have been living with PSC for 13 years. Two years ago I cut most meat and dairy out of my diet and eat fresh berries every day. I eat eggs, chicken and fish for protein and although I hate vegetables I do my best to eat a mixed vegetable salad heavy on vegetables, sprinkled with nuts, and light on lettuce every day with just lemon juice as a dressing. Since I started this diet my energy has doubled, I have no stomach pain and my daily life is back to normal. I do eat meat or even small amounts of sweets once a week because knowing I can keeps me on my diet the rest of the week. I exercise 3 hours a day on a stationary bike and this year I lost 65 lbs. I was about 90 lbs overweight so I am still working on the rest. I think it is very dangerous to cut things you love completely out of your diet but just a little once a week keeps my attitude high and I think attitude is as important as any single nutrition item you can add or remove from your diet.


I was told to drink 2-4 cups of coffee a day as well for the antioxidants that are in it and for the energy. It definitely seems to help. I drink organic black coffee only because most coffee is very filled with pesticides. I never drink coffee after 4:00 PM because then I have trouble sleeping.

Alix said:

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.


I have always hated the taste of coffee, and made the mistake of telling my wife of the study about coffee and the liver.

She gets on me about once a month to ask how much coffee I drank recently. All I can do is to have taken a few sips back in June. Still can't stand it.


I hate coffee too and don't let people tell you it's an acquired taste. I make myself drink a cup twice a day but I just think of it as taking my medicine. You should drink organic only to avoid the pesticides that your liver can't handle and I always drink it black to avoid the added sugar and fats. I never drink it after 5 PM because it keeps me awake. There are many respected doctors and institutions that are now saying 2-4 cups a day is a good thing.