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Primary Sclerosing Cholangitis (PSC) - Online Support Group

A good news. Is this real? Anyone with the same experience here?

Thanks @fcmmark, I was going to ask too! @Bob07, I started researching leaky gut also, a few months back. Was your son tested for leaky gut, or was treatment just started? Would you be able to go into more detail about that process?

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Have tou tried, or are you able to tolerate nuts, or nut butter, with your fruit?

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Hi michrichwood,
We have not been able to test for leaky gut yet (it is a shame that our hospital - with a massive hepatology, IBD and GI clinic - does not offer it!), but as the healing process actually looks very healthy - eating a diet with some elimination which makes full sense - we just started and it was a month-long process.
Fortunately my son can tolerate nuts and nut butter, we are not giving him entire nuts now because we are not sure if he chews them properly, but he is having peanut, almond and cashew butter (all smooth and organic), I also make homemade hummus with all organic ingredients and put lots of tahini in it (very little garlic though).
We applied a zero-tolerance policy at home for fried, junk, fast, processed food (gluten-free whole grain pasta is an occasional exception), processed sugar, gluten and dairy (and no gluten free bread, which when you read the ingredients, it is scary what people put in it).
There are many books on the market for healing leaky gut, I followed “principles” (but not recipes) of Dr. Mankoto Trotter’s book. And also followed principles of Dr. Robynne Chutkan’s books for treating his IBD and fixing his gut microbiome. I found them both effective for him.
The good thing is: it is fun for us to make healthy food from scratch at home and at least it does not harm!
So far, it has been effective, we will continue with this and keep our fingers crossed for his next medical tests in November.

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I can tolerate it - I just run candida heavy so sugars and me not the best combo. I also try to not mix protein and fruit. Fruit is Alkaline, Protein is Acidic. Fruit in that environment just ferments and much of the good stuff is lost in the small intestine and eventually passes through as gas and waste.
Clean eating to another level. Veggies and proteins are just fine. Fruit is another story - in my experience.

Thank you for your input - what are your thoughts on proteins with fruit? Just to slow it’s uptake?

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Studies have shown that PSC-patients have more gram-positive and less gram-negative bacteria than healthy people. If the theory that gut bacteria affects autoimmune diseases is true, the logical treatment is
antibiotics. Therefor, vancomycin has been used as a treatment against PSC for about 25 years. Vancomycin works by killing gram-positive bacteria, which in turn allows for gram-negative bacteria to increase. This is supposed to slow down the PSC progression.

Hi Andreas,

killing the bacteria is one logical way but there could be another approach too:

Making the gut wall strong enough that those bastards can’t escape, starve them with the food that they do not like and outnumber them by good bacteria, feeding the good bacteria with the food they like and increase their presence with either high-density probiotics and/or FMT (Fecal microbiota transplant)… all at theory level though…

My biggest problem with antibiotics is that they do not discriminate between good and bad germs and kill them all, while it has been proven that we need good ones to have a healthy life.

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Hello Bob,

To be fair, no one has proven that gut bacteria leaks into the blood, it is just one theory. What we do know is that there is a difference in the amount of gram-positive and gram-negative bacteria in PSC-patients and healthy people. We also know that antibiotics improves LFTs, Mayo risk score, etc.

Yes, it is true that vancomycin doesn’t discriminate, since it is a broad spectrum antibiotic. That said, if someone is able to prove and show which exact bacteria that affects PSC, an antibiotic that only kills this bacteria could be created.

In my opinion, the primary mission would be to stop the progression of PSC, since PSC is a deadly disease. Therefor some sacrifice is going to be needed before the exact reason for PSC is found. FMT and other treatments are not risk free either.

/Andreas

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Of course,

Everyone knows that PSC is such an unknown disease and everyone is different, Vanco does not work for everyone either.

Everything in PSC is still at theory level.

From my non-expert point of view and research, there might be several underlying conditions which lead to the same condition in biliary ducts, it’s why everyone is different.

Our doctor has prescribed Vanco for some people but he has consistently refused to give it to my son, his logic was that he is not sure if the pros are more than cons.

Anyway, as I said, I am not an expert or a medical professional, I am just a father of a PSC patient who has experienced something and thought it worth sharing. If this experience helps or gives hope to only one person, I would be more than happy!

Best wishes for all!

.

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I get what you are saying, but we as human beings have to act on what we know now. As far as we know now, PSC is one disease. In my mind, it would not therefor be logical to treat it as multiple diseases.

I’m not saying that antibiotics is the way to go. I’m saying that if gut bacteria plays a role in PSC, antibiotics is probably the best way to treat it right now, untill we know more.

I eat fruits and nut or butters all the time. Hmmm…weird how we’re all so different. Yeah, part of it is the slower uptake of the sugar and balancing it out, but the other part is getting the fat soluble vitamins, like almond and apricots! Yum!
Blueberries, sweet potato, chopped baby kale, edamame, wheat berries and raw cabbage, and a nice homemade oil free dressing? Yes, please!

Wow! @Bob07 this is great info! I’ve read the other comments, and I say trying to fix gut bacteria isn’t harmful, and no, it’s not proven, but there’s so much info out there, so many people who have healed other problems, it’s worth a try. I don’t believe it will cure PSC, but maybe it can slow it down? Maybe I won’t develop cancer or ulcerative colitis, by eating healing foods.
Every doctor I’ve ever been to only wants to throw pills at a problem. Or cut out parts that are failing, like my gallbladder. Had someone shared with me 10 years ago about changing my diet, maybe I wouldn’t have had to have surgery? Who knows. But certainly, it’s an easy thing to try, right?
I didn’t know how harmful Nexium was, yet I was on it over 20 years. No one offered to counsel me on nutrition. No medicine now, and no heartburn. Amazing? I don’t think so. Seems simple. Takes some will power to cut the junk out of your diet, and eat fresh, whole foods. But, I’d rather try that than face a liver transplant - if there’s even one available.
I’m so very appreciative for this info. Thank you!

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Bob07, great news about your son!

To play devil’s advocate – what if the leaky gut that leads to PSC is caused in part by normal, good bacteria? From the four studies I’ve looked at, the PSC gut is relatively close to the normal save for a decrease in diversity. They also found an increase in pathogens associated with cholestasis generally, although there is no common trend among all of these studies. The vanco gut substantially decreases diversity and eliminates many of the bacteria we consider to be good (SFCA bacteria, bifidobacteria, etc.). It also doesn’t touch many of the pathogens ID’d in the PSC gut studies. Despite this dysbiosis, many PSC patients get better.

Here’s what we do know. Naive immune system T cells can turn, aka differentiate, into pro-inflammatory Th17 cells or immune regulating T cells (Tregs) depending on a variety of factors. People with PSC have higher levels of Th17 and lower levels of Treg in the gut compared to healthy controls. People taking vancomycin have substantially lower levels of Th17 and about twice as much Treg in their gut. The type of bacteria in the vanco gut, notably Proteobacteria, tend to promote pro-inflammatory cytokines that should result in Th17 differentiation, so why are we seeing the opposite result? This may be due to the fact that one of the required ingredients for Th17 differentiation in the gut are certain bacteria. The info gap is that we haven’t fully identified these bacteria outside of a small sampling.

Applying the above to mouse experiments - germ free mice have very little gut Th17 compared to normal mice. For mice predisposed to autoimmunity, the normal mice have gut leakage while the germ free mice do not. Germ free mice given over the counter probiotics (B. infantis, Nexabiotic) had a substantial increase in gut Th17.

The rest is speculation – what if we are the mice predisposed to autoimmunity with normal guts? Perhaps some mechanism is broken that is necessary to cope with Th17 and the result is a leaky gut with either pathogen translocation or inflammatory T cell migration causing issues in the bile ducts. Vancomycin may be functioning by eliminating the bacteria (many that are good) necessary for Th17 differentiation and, as a result, prevents a leaky gut.

E. gallinarum is inherently resistant to vancomycin so this mechanism is potentially how vanco worked to stop the translocation of E. gallinarum in lupus mice in the study you referenced.

What’s interesting is that we have many Th17 reducing drugs on the market and exactly 0 of them have been attempted on PSC patients.

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I use to eat them all the time until I read about food combining last year since I felt so awful 24/7. I also did a major Food Sensitivity test for $800 through Alcat and there are so many good foods that my bodies immune system reacts to.

That said - I find that I feel better not eating acidic and non acidic acid foods together. Not just for PSC but in general. And it makes sense. Yes we all eat bread with our roast beef sando - but in reality, we don’t get the full benefit of the grains in bread as the stomach acid necessary to digest meat stays in stomach. The bread moves to small intestine where is sits waiting for alkaline - but Acid overrules alkaline and well… for the most part it become waste.
For me, it just makes common sense - not so much that our bodies cannot handle a burger, bun and fries - but it’s not easy on our bodies at all. Rotting and putrid food in intestines… not good as we all very much know.

That all sounds so fabulous!!! Sadly, Kale, Wheatberries are not on my OK list. Add garlic, sage, zuccini, beef, chicken, goat, some fish, carrots, chives, artichokes, mint, kiwi, flax, almond… gluten, sugar and way too many others… - I may as well just live on Pork, Milk, Eggs, Turkey and spinach! Yep, Dairy is just fine. Goat, not so much lol

Mind blowing that so much good is so bad for my body type. I will test again this year to see if anything changed. As I was having issues with latex out of the blue, but that has since passed. Weird stuff.

All about awareness and considering how many really healthy foods my body has issues with I have to be more careful… even when I’m like, Noooooooooooo! LOL

Oil free dressing??? Do tell. Sounds fabulous!

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Wow, that was an eye opener! I really need to read up on some immunology! :sweat_smile:

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LOL! I guess I’m lucky to be able to eat everything I want? :blush:
The simplest oil few recipe is dates, water and Dijon. Delicious! ! You can use it as a base and add to it.

I use Meyer’s lemons. Then there’s this one, maybe you can omit the things you can’t have?
Hopefully my screenshots come through…

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There is a key weakness of this whole thing. I think that’s exactly the reason why it didn’t work as expected. I mean, some worked, some didn’t. That info about more G+ less G- only tells you the correlation, not cause and effect relationship. It could simply be that PSC causes more G+ less G- so treatments targeting these bacteria do not address the cause, thus won’t work in long-term.
More and more I feel that PSC is a group of diseases, not a single one. That’s why you see some treatments work on some people, but not others. Kids are also totally different from adults.
Just my 2 cents. I remember Mayo has an ongoing clinical trial regarding vsl 3. If I remember it correctly, the original data is from Italy quite a few years back.

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To be fair, very few diseases have a treatment that work for everyone. Just because some didn’t respond to vancomycin doesn’t mean PSC is several different diseases.

I believe that one reason to why some don’t respond to vancomycin is that the studies have included patients throughout all PSC-phases. Patients in phase 3 and 4 have severe damage to their livers, which might be a reason for why vancomycin don’t work as well on them. It would be interesting if long-term studies were made on phase 0-2 patients, since vancomycin isn’t intended as an anti-fibrotic medication.

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I have a question, and you all seem very knowledgeable about some scientific lingo, is it best to increase or decrease bile production? Has anyone ever read anything on that?
Thanks!

All
Wow what fantastic and great discussion, thank you.

Just to add my two cents worth re the eating healthy side of things and in support to Bob07 argument. In Australia a few years back there was a very good two part TV series called Gut reaction. Basically it showed how the western diet was driving up the incidences of ALL autoimmune diseases. I have attached the link http://www.abc.net.au/catalyst/gut_reaction_part_1/
for the first part. Basically the ABC channel in Australia is the government funded TV station that is not commercially funded or driven.

Anyway this show is just worth watching. I made my children watch it since I had already lost my colon by then wanted them to started looking after their gut so they didnt follow my path. Watch both parts (45min each)

Bob. Looking into trying the VSL#3but in Aust its still very new and only a few trial doctors are allowed to prescribe it. Lucky for me my gastro can so will hit him up as I see it is marketed for currying pouchitis, which coincidentally I take flagyl every day to keep check of. (More antibiotics to reduce bugs)

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You body needs bile. The most important thing is that bile should run smoothly without obstruction, which is the problem of PSC.