I saw the liver specialist on Thursday and my liver test results have completely normalised. I did a trial with a naturopath with gut micriobiome testing, supplementation and dietary change based on that testing and a follow-up micriobiome test 3 months later. My intestinal permeability has healed and my gut dysbiosis is correcting itself.
All my liver readings are now well within the normal reference range. I feel so much better and no longer have the fatigue, cognitive dysfunction, joint pain and dry, scratchy eyes. I have a job interview coming up when only a few months ago I thought I might not be able to return to work.
The liver specialist is still going to do a Fibroscan to check the liver, but said otherwise all he has to do now is keep prescribing Urso as the PBC is well controlled with the supplementation and dietary changes implemented by the naturopath. Back in February the previous liver specialist put me on Fenofibrate which made me very ill. This was to address recurrent elevation of ALP and ALT. I’m so glad to have now found another way to normalise these liver readings with an approach that’s having no side effects.
Gut dysbiosis and intestinal permeability are increasingly being recognised as major issues in PBC and other autoimmune diseases. As often happens it takes a while for clinical research to filter down into clinical practice, but I expect in a few years that liver specialists will be approaching the gut micriobiome directly in treating PBC.
I just wanted to share the positive results I’ve had. I’m in a much more hopeful and healthier place than I was a few months ago and hopefully can give some hope to others.
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Turquoise2075
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Thanks Hils67 🙏 I read your post earlier. I feel I was in a similar position to you several months back, so I really hope things improve for you soon 💕
that’s awesome! I also read about gut biome and permeability so have been taking probiotics twice a day. I have not had any testing done, but between that and the gluten free, vegetarian diet I’m on, I’m feeling better. I can’t have gluten due to probable celiac disease ( had the scopes done but had already cut out gluten and unwilling to add it back in) and I just cannot handle meat, makes me very sick.
I’m so happy for you! I’m repeating my MRCP and scope in January so I’m hoping for positive test results. Even if my liver is not doing better, I feel better.
I was the same in that I was already gluten free before endoscopy. I’m not sure if I’m celiac or just gluten sensitive, but migraines virtually disappeared after going gluten free after having them regularly for 30+ years. Interestingly I tested very strongly allergic to dairy, strongly allergic to beef and mildly allergic to lamb. Huge improvement cutting these out, especially dairy. I didn’t test allergic to gluten but it seems the sensitivity to gluten is directly related to gut permeability. Now that has healed it seems I can tolerate occasional gluten. I wonder if your experience with meat is an allergy too?
It seems like you are doing the right things if you are feeling better. All the best with the MRCP and scope.
Have you discussed sourdough bread preferably homemade with your own starter? Fermented flour doesn't have the effect as regular, less so if you use rye and/or einkorn flour. I've not done any official food allergy testing but through elimination and reintroduction, I determined I have a gluten sensitivity. I can feel it in my joints as well when I get a "gluten load". Eliminating beef and pork has made a huge difference too! (I've anyways been lactose intolerant.)I've been able to lower my ALT and AST with 900mg of Urso a day and diet only (Still unsure why ALP continues to slowly rise but it's still not in the red zone.). So much inflammation has gone and I'm actually able to lose weight and get 7 hours of sleep most nights. Stress definitely makes a difference in the itching, our LFTs, etc.
All that to say I agree that gut biome plays a huge part in our wellness. Keep up the changes! 🙏🏻❤️
I’ve found sourdough bread much more digestible to eat in the past and always preferred it. I’ve not made my own though which I know is the best where you have your own starter and control the process. I stopped having sourdough when I cut out all gluten, but it may be one of those things I can reintroduce. I could ask the naturopath about it.
I’m glad you’ve had all those positive changes. In case it’s of interest there were three types of testing I did - gut micriobiome composition, intestinal permeability test and food allergy test. The gut micriobiome showed low butyrate which has an association with fibrosis in PBC. After 3 months of supplementation to increase my gut’s ability to make its own butyrate it has now increased and is only just under the normal range. I also had high zonulin which is a sign of intestinal permeability and often gluten sensitivity. That is now completely within the normal range. I was also found to have a major overgrowth of the bacteria Citrobacter freundii. That has now halved and should keep coming down. I’ve read a range of bacteria that are pathogenic when overgrown can be present in PBC and have been linked with the development of antimitochondrial antibodies. The bacteria involved can be different for each person.
I’m so glad you’ve got the reduced inflammation. I’ve also found that in turn has led to weight loss. Just cutting out gluten led to a 12kg weight loss even before I did the supplementation. I totally agree about the stress factor too. All the best for ongoing improvements and better health 🙏😊
That’s great news! Diet, exercise and stress reduction have made a huge difference for me, too. My fibroscan score has gone from Stage 2 to Stage 0 over five years. It absolutely works!
That’s so wonderful about your fibroscan score Michi1! It shows processes can be reversed. I’m having one in a few weeks and will be very interested to see the results. All the best and sounds like you’re doing really well 👍😊
Which state are you in? The naturopath I see is in south-west WA but does some work in Perth too. The new liver specialist I’m seeing is based in Perth. I’ll PM you the details.
Oh ok, I just sent you the details but the advanced micriobiome testing my naturopath does would be used by some other naturopaths who might be on a similar page. I think they vary a lot in how they operate, but the good thing about the micriobiome testing is that it’s evidence-based rather than guess work as to what’s happening in the gut. I felt much more comfortable taking supplements based on what is actually happening rather than guessing. I’m fortunate that my new liver specialist is open to what the naturopath is doing. All the best!
Intestinal permeability test - fasting overnight then drinking a solution and collecting urine over 6 hours.
Micriobiome test - stool sample.
Food allergy test - finger prick blood samples.
Based on these results the naturopath put me on the following supplements. I want to stress these supplements are based on my micriobiome which will be different from the next person with PBC. Also, supplements, like medications, can have side effects and interact with other meds, so important to consider.
PaleoFibre: (Ingredients: acacia gum powder, bamboo fibre, guar gum, cranberry protein powder, carrot powder, chicory root inulin, apple fibre powder, glucomannan powder, flaxseed powder, psyllium husk powder, apple pectin powder, prune fruit powder)
Legalon (extract of Silybum marianum - milk thistle) capsules
Garlic Forte capsules
Slippery Elm capsules
As for diet, he recommended no dairy, beef or lamb given I tested allergic to these. Also, no gluten which I was already doing. I don’t have a gluten allergy but the high zonulin was suggestive of gluten sensitivity which I already expected.
Otherwise, my diet is basically healthy - proteins (chicken, fish, eggs, and occasionally other seafood or pork), fresh vegetables and fruits, and quinoa I frequently use generally in preference to rice. I generally don’t have processed foods and avoid added sugars, but I do often have gluten free Weet-Bix at breakfast. I use almond milk or an almond/coconut mix. I use olive oil and extra virgin coconut oil, but try not to overdo the latter. I use herbs and spices too. Cucurmin has been shown to be protective for the liver. I make healthy curries. Occasionally I’ll make a gluten free cake but keep any sugars to a minimum.
My microbiome test in November showed the intestinal permeability has healed, I have increased beneficial bacteria while halving a major overgrowth of a pathogenic bacteria, and my sodium butyrate has increased to near normal levels (a good sign for preventing liver fibrosis). The naturopath was going to use a specific herbal mix to help boost butyrate production for me, but I had a negative reaction to that based on what seemed to be a histamine and/or salicylate sensitivity. That’s when he added in the garlic capsules. He also was going to use a mix with licorice root extract, but I had a serious reaction to that a few years ago so that was also off the table. So it’s highly individualised. Blood test results now show my liver readings as all normal.
P.S. I still drink coffee (one a day) which the naturopath supports as there seem to be health benefits in moderation. It’s meant to potentially be beneficial in PBC and PSC too. I drink some tea as well (black, green and herbal).
Yes I read there was initially a study that showed it to be protective in PSC but not necessarily PBC, but since then I’ve read a few official dietary advice guidelines that it is thought to be protective in PBC as well. I’m glad, as I enjoy my daily coffee ☕️🙂
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