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Primary Sclerosing Cholangitis (PSC) - Online Support Group

Diet & nutrition

New to website. Not sure where to for this kind of information, but am sure someone has researched the possibilities of controlling PSC with diet. Does anyone have a good story to report in this regard?

We do not know yet if this helps yet because we have only being doing it for about one month but we are trying the Wheat Belly diet by Dr. William Davis. Our doctor follows this diet & highly recommends it. My husband has another MRI at the end of Nov so we are hoping that there will be some improvement.

here are several discussion on nutrition that may be helpful:

http://www.livingwithpsc.org/forum/topics/food-in-relation-to-psc

http://www.livingwithpsc.org/forum/topics/diet-for-psc

http://www.livingwithpsc.org/forum/topics/the-paleo-solution

http://www.livingwithpsc.org/forum/topics/gluten-and-it-s-affects-o...

http://www.livingwithpsc.org/forum/topics/turmeric-cures-primary-sc...

http://www.livingwithpsc.org/forum/topics/diet-1

http://www.livingwithpsc.org/forum/topics/dietary-advice-psc-and-co...

http://www.livingwithpsc.org/forum/topics/coconut-oil-for-impaired-bile-access

http://www.livingwithpsc.org/forum/topics/gluten-free

Dear Fly Lady,

Diet issues are somewhat individual with this disease. For me, avoiding fats, especially milk fats is an important part of my diet. The fat in coconut oil can be used by the body in people with liver disease.I use it like butter.

For the loose bowels or diarrhea, I've had good luck with immodium, 2 before each meal, probiotics from Puritans Pride, and pancreatic enzymes prescribed by my GI doc. Guava tea ( hard to find) one cup a day has helped a lot.

Stay strong and good luck!

EAD3

I have been on the SCD diet for the past 2 1/2 years. I started on it shortly after I had been diagnosed with early stage PSC. I began on it in an attempt to manage a Crohn's Disease flare. I have had Crohn's since I was 8 years old...so for the past 50 years. So I did not begin on the diet to manage the PSC. But...my recent blood tests show all blood levels, including the Alkaline Phosphatase are now normal. The original diagnosis had my AP test at 400 something, so high but not sky high. This is not direct evidence that diet can affect the PSC, but it is suggestive of that. I would recommend that you explore a cleaner, more whole ingredient diet that avoids sugars, grains and processed foods. It may help, and it certainly won't hurt.

My daughter also includes probiotics in her daily diet. As well as no red meat, and follows a gluten free, dairy free diet.

Low fat, gluten free, dairy free (includes no butter, cheese) diet is what I take. At first I thought that’s it, I am done. But I am getting used to it. I prefer to be normal than in misery. Best thing is experiment. No doctor will provide an answer. The above has been experimented by many and it does work

Each of our bodies are unique so try to find what works. Also add a good probiotic. You definately need a very clean colon. I stay away from GMO foods as much as i can. My lovely wife helps me a lot. She is an angel to me. How will I ever repay my debt to her. Be well.

I hadn't really heard of the Wheat Belly book. I did a search on google, and (of course) that book is controversial. Post just about anything on the internet and you'll find someone who takes exception to it :). There's at least one Dr who is very opposed to the Paleo-Atkins-Wheat-Belly type diets:

The Smoke and Mirrors Behind Wheat Belly and Grain Brain

As I've posted elsewhere on this site, I'm following a modified version of the Specific Carbohydrate Diet -- Another that falls roughly in the low-carb category, but I also try to avoid too much animal fat because I understand it's hard to digest and hard on the liver. I got there by following a strict elimination process with a nutritionist, who had no particular allegiance to any diet. She just helped me figure out what works and doesn't work for my body. Consistently I found that legumes, grains and other starches, and sugars -- except for fruit and honey -- cause me diarrhea. I'd strongly recommend this approach, rather than following some person's prescription of what's good for "everyone". We've got an unusual digestive system -- especially those with colitis also -- so I don't think that following a diet that is supposed to be good for "everyone" makes sense.

I try to apply gluten free diet but i didn't know we should avoid of red meat. Why do we should avoid of it? because of fat?

Hm, I'm not sure what the general recommendation is about fat, but both my liver Dr and my regular Dr both said there was no reason for me to avoid fat -- especially good fats. I think it depends on how developed your disease is...

I also follow a diet very close to SCD and my liver enzymes have been normal for the last six months since I started. I also take VSL3 probiotics and drink kefir.

What do you eat in SCD diet?

As the one who raised the SCD above, I wanted to mention that I started it for the Colitis, not the PSC. Looking at the results of the careful elimination diet I did with her, my nutritionist said that I can't break down disaccharides and polysaccharides.

And to answer Mike, that means no starches and no sugar. Monosaccharides -- fruit sugar and honey -- are in. There's a whole online trove of info about the Specific Carbohydrate Diet. One useful website is http://www.breakingtheviciouscycle.info. That site has a legal and illegal list at http://www.breakingtheviciouscycle.info/legal/listing/. Then there are all kind of recipes and ideas that the SCD community has posted on various sites -- things like homemade yogurt (incubated longer than the store bought kind to remove the lactose more completely), or ideas for subbing legal foods into standard recipes.

Bob,

Did the SCD diet resolve UC and bring your elevated liver enzyme levels to normal? I am trying to look for vegan SCD diet links. Wonder if there is any out there showing me exactly how to begin the diet stage by stage or anyone who can guide me.

Thanks,

Hey Mike,

The SCD diet helped me considerably with my UC. It didn't allow me to go off the medication, but it did entirely eliminate the diarrhea I had lived with for 40 years. My nutritionist did say that only about 80% of her clients with UC found improvement with SCD or a variation, for what that's worth, but I certainly did.

Quick history: I was diagnosed with UC in 1969, when I was 9. Once they got it better controlled, which took maybe 7-8 years, it was quite well controlled with Sulfasalazine alone. In 2010, when I was diagnosed with PSC, they took me off the Sulfasalazine, and put me on Asacol. The UC was less well controlled with that, and various of the other drugs worsened the symptoms (you probably know that drill...). That's when I went to the nutritionist.

With her, we started with a very limited diet in which I had markedly less diarrhea, gas, etc., and let my body settle into that for a few weeks. From memory, I think the initial restrictions were essentially anything anyone has ever been allergic to <grin> --- eggs; all dairy; all seeds, nuts, grains, and legumes; all sugars; all root vegetables; the alliums (onions, garlic, leeks, etc.); the nightshade family (tomato, eggplant, pepper, potato); red meat and seafood, were all out, and perhaps some others. There were also a few foods that I had noticed on my own were problems -- caffeine, beets, and I forget what else.

Then, one by one, we reintroduced each of the foods I had eliminated. I would add in 2-3 ample servings of one food for one day, and then wait a couple of days to see if the symptoms returned or not. If they returned, that food was out, and I'd wait several days for my body to return to the baseline again before testing another. If my body did okay with the new food, it was again a part of my diet as I continued to test. If there was any doubt, I'd retest or leave it off so it wouldn't cloud the subsequent tests.

The reason it was important to test everything and not just follow someone's SCD prescription is that there were some surprises --- some things that I tolerate well which the SCD diet says are illegal, and vice versa. For example, I react strongly to tomato, eggplant, green beans, beets, etc. and these are officially legal foods on at least one version of the SCD, but I do well with oats and unsweetened chocolate, both of which are "illegal".

So the important thing is to initially eliminate enough categories of food so that you're not accidentally eating something that's making you sick. And eliminating all those foods means you're eating substantially more of other foods, so if one of those foods is also a problem, then you may not see an improvement. Of course, you can keep eliminating categories of food until you get substantial improvement, before adding foods back in, but it's nice to get to the adding-back-in part as quick as possible, because it's tough to remain very long on that very limited diet.

Finally, since you bring up veganism, I should add that I was a vegetarian for many years until I started investigating what various foods do to my particular body. And I discovered that the ideas I had about what I should eat conflicted with what my body was telling me I needed to eat. You may find that it is very difficult live on whatever dietary variation works for your body while maintaining a vegan diet --- ultimately, SCD is a variation on the Paleo diet, which I would never have done if it hadn't been for this very systematic investigation which the nutritionist led me through, and the immense improvement in the quality of my life as a result. My wife remains a vegetarian, and I do my SCD thing, and it works out alright, though we cook two meals every time...

Hope this helps, and best of luck to you in your investigations,

Bob



Crewmom said:

I also follow a diet very close to SCD and my liver enzymes have been normal for the last six months since I started. I also take VSL3 probiotics and drink kefir.

i'm not sure but kefir is not good my stomache also it is in illegal list in SCD diet: http://www.breakingtheviciouscycle.info/legal/listing/K/ it think it should be tried and see what happens because it can be changeable for everyone.