Diag. with PSC in 2003 and 42 yrs old. Getting close to the 12 years marker. Need to try something out as it is i am reading lots of positive readouts on this topic.
Could someone please recommend an probiotic they take which i can buy in the USA which is dairy and gluten free. I find this thread very interesting and would like to try the Gluten free, Probiotic approach. If you are taking Probiotics how often do you take the tablets? Do you stop taking the tablets after a certain time or continue till infinity? Please inform.
Also is anyone taking Vancomycin tablets? Has this worked out for you? What dosage are you taking?
Hi Stephen,
I am very concerned about Gluten. I plan to start on a gluten free diet with probiotics to fortify my gut. Lets see how my things look in the near future.
How are you today? I am sure you have read where I mentioned my daughter has PSC, UC and Kidney Disease. She has been using HMF Genestra Probiotics. They are available in the USA because I was going to order them online, but then I found them in Canada. They are "gluten and dairy free" and were recommended as my daughter does not have "gluten" or "dairy". I try to keep her on them. We use the powder as she is only 7. When she is alright I just give it to her once a day, but when she is having a "flare up" I give it to her twice a day. Honestly speaking she hasn't had a "flare-up" for awhile, but at the moment is experiencing one. She recently had the flu, so....
I have had crohn's disease for 50 years (since age 9) and was officially diagnosed with PSC 3 years ago. In order to manage the crohn's I have been on a SCD (specific carbohydrate diet) for the past 2 years. Over that time my crohn's has improved markedly and my liver results for the PSC have improved as well. I make my own yogurt for the probiotics, and we also ferment some vegetable foods (salsa, pickles, sauerkraut). I steer away from purchased probiotics because they tend to be heavy on the bifudus strains which are not optimum for me. But you could give the whole no grains/no sugar thing a try for a month and see if it helps. There are a lot of resources on line. Google SCD or Paleo or Primal.
It is a wide spectrum probiotic. I take one pill a day with my vitamins before bedtime (so it will not be flushed by the Cholestrymine I take at dinnertime) and within a few days of starting it it has made a dramatic difference in my intestinal health and stools.
I feel like it has brought back some normality to my life. My liver blood test numbers have come down and although still high seem to have stabilized. i don't know if the probiotics have contributed to that or not, but there has not been anything else that I've changed.
I also have Ulcerative Colitis and my G.I. doc recommended ALIGN. This is the only probiotic I have found that helps me. It costs about a buck per day but I find it is worth it. Good luck!
I have had UC for 30 years and diagnosed with PSC 10 years ago. I take Culturelle daily I've tried quite a few probiotics and that has been one of the best for me. From time to time I will also drink a Kombucha, this is a tea with live probiotic cultures. GT's Synergy line seems to be the most consistent, but not for the faint of heart, think tea with some sour fruit juice mixed in, it is an acquired taste.
As for Celiac disease, for years I have known that pizza and pasta bother me after I eat them. I think now that it may be the gluten and not the tomato sauce I had always blamed it on. A few years ago when I heard a neighbor talking about their son's "wheat allergy" I started looking up some information about celiac, and started to move to a more gluten free diet.
I only have personal anecdotal evidence; however avoiding gluten makes me feel better. I told my primary that I felt this way, he tested me for celiac disease and it was negative. He told me "If you feel better when you avoid wheat products, then avoid them, there isn't a reason for me to tell to eat wheat.".
I would recommend at least trying a diet low in gluten. It's not that difficult, it may seem daunting at first but there's not gluten in meats, fruits and vegetables. Eggs for breakfast, salad for lunch, and a piece of meat and vegetables for supper is gluten (and lactose) free. Some of the snacks I've come to enjoy are Kind and Larabars, along with dates, raisins, and nuts. Just avoid fried foods, bread, oatmeal, wheat cereals, pasta, and pastries almost all candy.
The most difficult thing has been eating gluten free and feeling great for months then to have PSC symptoms it was really depressing. I had to remember I was not curing PSC, I still have it. If I'm reducing my symptoms and frequency of problems it is still worth it.
I love Kind Bars and Larabars, Adam, and they definitely help gluten-free folks get a treat and not feel deprived while avoiding gluten. Thanks for posting!
I have posted before re our experience with gluten free diet (leaning towards paleo) and probiotics - sorry if I am becoming a bit repetitive. My son was diagnosed with Crohns Disease, PSC/Autoimmune overlap syndrome when he was 8 years old (he's now 11). We removed gluten from his diet in May 2012, and by July 2012 his inflammatory markers were back in the normal range for the first time since diagnosis (there were no other dietary or medication changes at or around that time and his disease had been difficult to manage up to that point). Several months later we started him on a probiotic at around the same time he started taking ursofalk - and within 2 months, his liver enzymes and inflammatory marker were all within the normal range (could be result of urso, probiotics, or combination of both). He grew a bit, had loads of energy, and was very very well during that time.
We had an abnormal result in December last year. There was a lot going on for us around this time, and I have attributed his results to:
a stressful 6 months leading to that result - hubby was made redundant, and there were also some big issues in his class and school during that time, ending with his teacher being made redundant;
a relaxing of his dietary restrictions to the point that he was having more refined carbs than previously;
we replaced the expensive probiotics with fermented veggies for a 2 month period.
After the abnormal result, we reigned in the diet, have gone back to the expensive probiotics and tried to incorporate some fun times and some rest/relaxation times into our weeks to manage stress. His results have improved every 2 weeks since December, and now are very close to being back in the normal range again (inflammatory markers and liver enzymes). He is very very well at the moment too, with lots of energy and is always hungry!
This is all anecdotal of course, but it seems to work for us. I can't help you with probiotic brands in the US, but I can suggest that you try different ones until you find one that works. We found a 'multiflora' type that has over 20 different species /strains and I started with that. I also think this will be something that will need to be taken for life - but who knows what advances will be made in understanding autoimmune diseases and PSC in the future.