Doctors never tell you to change your diet because people tend to make excuses and argue with them about it. So I went to a dietician who said to stick to more of a Vegan type diet... Dairy has natural bacteria in it which can agitate the immune system setting off an auto-immune attack so dairy is bad if you have an auto-immune liver disease... almond milk is the best and non-soy vegan substitutes for your dairy products. Also real butter has animal fat in it as does beef and pork. Animal fat is sludge for the liver. If you have to have meat, try to stick to lean chicken, turkey or fish with low mercury levels. No eggs or soy, and shellfish is too risky as is any alcohol. Try to limit your gluten intake (wheat, rye, and barley). Even if you test negative for Celiac’s Disease (an allergy to gluten), people with liver disease tend to be gluten sensitive anyway. Lastly, try to stick with organic, non-GMO, low sodium, no salt substitutes, low processed sugars, no sugar-substitutes, chemical free, no preservatives, and no artificial colors or flavors. As your liver is compromised and cannot filter correctly, avoid eating the things that are poisoning it to begin with. I have PBC, but it would make sense that any liver disease would be a similar type of diet.
Diet for Liver Disease: Doctors never tell... - PBC Foundation
Diet for Liver Disease
I have chronic liver disease so went full vegan 2 years ago & its one of the best decisions of my life. My health has improved so much & my energy levels shot up. My first blood test as a vegan was my best to date & my specialist even thinks a scan will show some healing. Animal products are terrible for the body, with or without liver disease. I avoid processed foods, sugar & high fat foods too. Thanks for the post as its confirmed my beliefs. I just wish all liver specialists would recommend a plant based diet.
Well, think about it...all the toxins in an animal are stored in the fat. I have been attacked and I think it was stress since my diet is the same as it was three months ago. We grow our own meat and eat organic chicken and everything else is organic. I make my own bread, noodles and such and when I can't, I hit a local organic bakery. It all does make a difference as she says.
Ya know what else? I could not walk down the cleaning product aisle at the store before I started Urso and really my body is still offended by smelling all those chemicals. The moral...stay away from Chemicals too.
I am a horse person and have used DMSO before on injured horses...when that stuff gets on your hands...even a little bit, it goes straight to your mouth tasting like garlic...within seconds. So, putting lotions, bug repellent, and other toxins on your body will go directly into your system.
Read the ingredients label and if it is longer than a few, avoid it.
I didnt know l couldnt eat eggs l eat quite a few a week. I dont eat red meat or cheese l also eat prawns l wish consultant could tell me what to avoid as its a mine field. I dont drink alcohol but never have. Im 67 and was diagnosed 3 weeks ago and take urso it still scars me when l think about it.
I don’t think I could become fully vegan however you have said some things that I have noticed about my diet. I try very hard to eat low fat preferring white meat to red and there are certain foods I absolutely know I cannot eat without distressing consequences. Pulses are out mushrooms, onions, any fat, liver pate could kill me! Cream, bread containing seeds, bananas? nuts and crisps. I eat eggs for vitamin D but no more than twice a week and I don’t drink alcohol. I will look again at a vegan diet particularly the milks anything to avoid irritating my liver anymore than it has been. I am 72 and was diagnosed with PBC 19 years ago I am on ursodexacholic acid that seems to keep the condition stable.
I follow a sensible diet but why no eggs ?
Eggs contain the possibility of salmonella contaminates as the inside of the egg can be contaminated in the mom before the shell is formed around it. Also, eggs may not get cooked sufficient enough to kill the bacteria. Of course, any poultry could contain harmful bacteria such as salmonella, listeria, and campylobacter, so it must be fully cooked.
Also no sushi of any kind. Raw fish is too risky.
Also read labels and try to avoid prepared foods which also contain these ingredients.
Is anybody else scared to put anything in their mouth!?!
YES! I already know gluten messes me up as do eggs! Doc says I am not gluten intolerant which is total BS! I am certain it makes me swell, itch and just feel lousy. I swear, I hate eating now If I could live on water, coffee and tea, I would be happy! LOL!!!
My blood test came back as not having a gluten allergy, but I can tell it effects me also.
yes eleanor, especially my foot!!!
Interesting thread. I am 65 and have been vegetarian for 30 years. ( I do eat eggs, lactose free yogurt, fat-free feta cheese). I eat tons of veggies, salads, stir fry, oat bran cereal for breakfast etc. Well, even with my diet- I suffered horrible endometriosis and now have PBC. Don't take me wrong- I'm not saying that the diet hasn't helped me- I "fell in" to the diet way back then-- (Okay I was a hippie child of the 60's : ) ) and never really missed meat over the years. And I am guessing the diet has "helped me" with cholesterol and fatty liver avoidance etc..
Over the last couple years I have greatly reduced breads- and while I don't think I am celiac, I do feel better not eating a lot of gluten. I do have occasional Van's gluten free waffles. And I have some gluten free crackers I enjoy.
One comment regarding almond milk- sweetened versions have lots of sugar-yikes.. and also there is lots of concern/studies that show possible adverse effects of carrageenan which is added ingredient in most almond milk ( I don't want to start controversy just invite you to read up on it and decide for yourself). Diet can be tricky for each individual- many factors. We each have to do our best to find our ways. Sending you all a hug today.
The dietician who gave me the info suggested to make my own almondmilk for that very reason, but I have not tried it yet.
Home made almond milk is amazing!
How did you make it?
Soak the almonds (I try to use organic, raw, but most are pasteurized now. Wash well if you use raw) about 24 hours in closed container (I use mason jar). Rinse a few times while soaking and adx clean water. At end of soaking wash well. Put in vitamix or blender or cuisinart with clean water. Chop well. Use nutmilk bag or cheese cloth and squeeze milk out like you're milking a cow. Wonderful, creamy, delicious! Refridgerate and drink within a few days. Shake to remix when separates. Some folks use the remainder for making almond crusts or dry and make flour.
Here's a link that I found that might help.
thekitchn.com/how-to-make-a...
Enjoy!
Liz
Eggs are the main food linked with prostate & ovarian cancer. 1 egg = your daily allowance for cholesterol. Also risks of salmonella. Increased risk of diabetes and so many negative effects. In the UK and America it is illegal for eggs to be be advertised as safe, good for you, high protein & healthy. A massive study showed just one egg a day can be almost as bad for your health as 3 cigarettes. Just check out Google. Also watch What The Health documentary on Netflix or YouTube. It's mind blowing.
I believe it is very important to have a healthy well balanced diet plenty of veg and fruit, fish, lean meat . However I have never heard about eggs being the main food contributing to ovarian and prostrate cancer. Eggs have a lot of goodness . Any food in excess is not good. None of my doctors or my professor have ever been concerned about eggs. Fatty food, processed food , sugar , alcohol . All of these are of concern . We all have different opinions and views however I will always include organic eggs in my diet
It's your choice. Just Google what I said and you'll see I'm not making it up. I'm only passing on my knowledge to try and help people.
I for one love beef... I finally broke myself from bacon which is horrible for the liver and I never thought I would be able to do that. Slowly I am working my way toward Vegan. I tried going Vegan cold turkey which did not work out, so I am slowly converting over one food at a time!
No, I cut the bacon. I buy 97% lean ground beef for spaghetti & meatloaf. We do eat bit of pork. If I use oil for anything I only use canola. I eat a lot of kiwi, guacamole. I’m waiting for fresh cherries to hit the shelves again. It’s just hard at best.
My dr. strongly advised me to get my weight down asap. Fat Around the belly.. I had to switch off the "sugar switch". No more frozen yogurt in the house and I read labels for "added" sugar. And my beloved potato chips-- I could not just eat a few 😬. Had to let it go. Just don't keep it in the house.
I do allow occasional 1/2 piece of cake or cookie if I'm out at favorite restaurant.
Over last 2 years I have lost 18 pounds. I feel much better and finally don't have the sugar craves... but I won't lie, it wasn't easy.
Autoimmune diet can be helpful. But it's interesting in my life the different "diet absolutes" that have come and gone over years. Paleo diet is still quite popular... people are convinced it's the "way". I don't proscribe my diet for anyone but me.
The PBC foundation website does have diet recommends for PBC patients.
I have an awesome frozen smoothie recipe...
2 cups almondmilk
1 container Vegan strawberry Yogurt
3 frozen bananas (sliced first)
1 cup frozen strawberrys
Mix in blender... makes 2 large glasses
You can also make it with blueberries or mix the fruits. I have a banana tree in my back yard, so I take off the peels first, then throw them in the freezer in a gallon size freezer bag... Yummy!
Im even more worried now!! I do have skimmed milk with porridge or tea l eat a lot of homemade soups. No sugar or salt added l eat quinoa is low fat greek yogart ok as l need calcium. How do you all manage your calcium intake
Interesting post with some good points, I spent months working with a dietitian to find what was causing my ever growing issues. Through elimination diet we found that i am intolerant to wheat, lactose and sorbitol ( a sweetener and naturally found in some fruits) now I avoid these I feel so much better.
I was advised to eat a healthy balanced diet lean meat, fish plenty of fruits and vegetables however there was no need to avoid any other foods just moderation in all the nice things ( mine being choc and cake).
Having a partener who is celiac I do feel I need to correct your post on celiac being an allergy though. Celiac is neither an allergy or an intolerance it’s an autoimmune disease that damages the small intestine and one that can have serious consequences for the sufferer if the diet is not taken seriously.
Also just for the posters who are concerned about the safety of British eggs I put up a link to the new UK advice.
food.gov.uk/news-updates/ne...
Yes, Celiac Disease is an auto-immune disease triggered by a reaction to gluten. As everybody is different and their body’s react differently to different foods, I think it is always a good idea to have a target to aim at and then try to move toward that goal by process of elimination. I may never be able to go fully Vegan, but the closer I am getting the better I am feeling.
Thank you so much for sharing your information and what the dietician recommended for you. Its a great thing to have done, and hopefully you will really benefit from her advice.
Its something I have been looking at for a while and so share some of what I have experienced / found.
I have recently come to many of the same conclusions though going on an elimination diet, with huge benefits to my energy levels, mood, pain and general state of health. Should see soon if it is making any difference on my bloods. I am now on a wholefood, no/low gluten, no dairy, pulses, corn or soya, ( plus low amines and very low salicylates which is more likely a very personal thing).
With the intolerance to salicylates, removing those for about 2 years now has also been instrumental in improving my chronic sinusitis, removing fibromyalgia symptoms, bladder control etc. Since they are also lots of medications and personal products as well as most fruits and vegetables, I'm sure it must have put a big load on my liver before I discovered the intolerance.. in fact I suspect it may have been part of my trigger for PBC.
Research says Cayenne taken before meals may block the salicylate receptors and enable people who are intolerant to take higher levels safely. I'll be testing that out next. I'd love to be able to eat brocolli and berries etc again, even occassionally.
Interesting about meat suggestion..I've heard this many times, but personally I find it impossible to go vegetarian or vegan because I have reactions to vegetarian protein sources (including strong nut allergy), so few veg I can eat, and also it really affects my energy levels if I go without meat. It was going veggie and eating more and more curries (with associated spices... oops, high salicylcates!) that first caused me to go to the docs and get blood tests with a list of 20 symptoms, most of which are now gone or under control!
There are also chemicals in organ meats (including skin and fat) which cant be found elsewhere, so whilst its generally good to avoid fatty meats, I do include chicken skin on a regular basis.
The eggs thing is also interesting. I can see some reasons to go low on them, but they also contain choline.. the chemcial which may increase risk of some cancers, but is also though to provide major benefit to the liver. Its certainly in a lot of liver protection dietry supplements etc. Google it.
Diet has been a big journey for me over last few years, and I'm convinced of two things...firstly that diet absolutely makes a huge difference to chronic conditions and to general health and well-being, so much so that I believe the NHS could save a fortune by investing more in this area,
and secondly, that there is no such thing as a definitive 'healthy diet for x,y,z'. There are general principles, but each individual will have different dietry needs to gain their optimal health and this changes over time.. (so I'm a firm believer in the benefits of elimination diets as they allow you to work out your own tolerance levels)
Not especially, though it is reputed to be an anti-inflammatory, and of course keeping inflammation low is a good starting point for any auto-immune disorders... removing solanum family veg (potatoes, tomatoes etc) may help alongside the gluten, soya etc... That what my nutritionalist put me on to start with. Other good anti-inflammatory spices include turmeric, cayenne. Getting a good range of herbs and spices is a very good idea for most people.
Oooohh.. black cumin. Mainly known as Nigella seed. Not the same as normal Cumin. That is a very potent anti-inflammatory and has many other benefits too. (its the black seed they use on Naan bread etc).
Here's a link for an arthritis site with some good info on anti-inflammation diets. arthritis.org/living-with-a...
Specially for auto-immune conditions I did find this which makes lots of sense. herbalremediesadvice.org/au...
Its the leaky gut thing I'm working on, as this could easily be contributing to all my food intolerances. Gluten free is a biggie on that.
Great info on herbs... I am planting a garden this year and want to plant an herb garden also, so I am trying to research which herbs I need to plant.
wonderful! okay, not sure if you have any other conditions, but some suggestions for all round good culinary herbs with lots of health benefits that are easy to grow in the UK. (I used run a historical herb and spice stall, as well as being a very keen gardener)....
Marjoram...digestion, hormones, anti-histamine, anti-microbial/bacterial etc.
Nettles. Yup. Stinging nettles. Make great tea and amazing soup...and more health benefits than you can shake a stick at.
Thyme. Thyme oil is strong enough to kill MRSA. Its a very potent anti-bact, which makes it great when you're coming down with a cold/sore throat, as well as stimulating for circulation, muscles etc
Rosemary. Relaxant, memory / brain sharpness, circulatory system. Just need to keep an eye on how you work with this one internally as it boosts the immune system, which you might not want with pbc! Great as a sprig in the bath though to relax your muscles off, and makes a great natural hair conditioner too.
Sage. Gargle it for sore throats, soothes mucous membranes.
Hyssop, if you or your family have asthma / breathing conditions, or just because... its wonderful meditarranean type herb goes good in most food and the flowers are beautiful.
Sweet Cecily. Tastes like aniseed but has natural sweetness, so you can use it in fruit pies etc and really lower the amount of sugar you need to add (I dont add any!)
Fennel. Fantastic digestive. loads of other stuff it does too. I love it boiled up with rice, one of the very few herbs I can still handle.
Parsley. Not to be underestimated. anti bac/ anti fungal, digestion. High vitamin content.
Should mention just in case that large amounts of most of these herbs can be an abortive.
Just some ideas to start with
Have fun researching and planning your garden. Its such an exciting thing to do!
This is awesome info... I have PBC, Hashimoto’s, Dermatitis, possibly Ulcerative Colitis, and Ankylosing spondylitis
For the dermatitis, burdock and chickweed are both hard hitters. Burdock grows quite big, leave and root both useful. Chickweed is mainly seen as a weed, but seasonally (early spring) it grows prolifically, tastes great raw in salads, and can be dried for used later in the year. You can take them internally or make a cream from boiling or infusing it and combining with oil and wax or into an inert base lotion you like.
Calendula (English Marigold) is another one that is great for the skin.. make an infusion, let it cool and splash on, or add into lotions again, or in the bath. Its pretty too, and you can eat the petals. Its called calendula because it can flower every month of the calendar, so great if you're planning a garden.
With regards the other conditions, have you tried adding anti-oxidant supplements? I'm now taking Alpha Lipoic Acid and N-Acetylcysteine alongside some other stuff, which have been game changers with regards energy levels. I'm back to having a full day and evening available to me, rather than being useless by mid-afternoon (or lunchtime, before I sorted out my diet). N-AC is precursor to Glutathione which is really important for liver health and I have seen links suggesting its useful for Hashimotos too.
It may be worth dropping in here that I know several people with hypothyroidism who have all been told by nutritionalists that they need to eat meat, and thats made a big difference to some of them (one refused as a life long vegetarian). Certainly it is really important to get lots of high quality protein. For myself, I try to eat protein every 3-4 hours, this also really helps the adrenals. Plus good intake of high quality mineral salt. (ie himalayan, good sea salt, definately not cheap table salt). I believe I've read somewhere that there is a link between adrenals and thyroid.
Here's a couple more links you might find useful..
drhedberg.com/herbal-medici...
(there's some other herbs mentioned in there too, some of which, like Lemon Balm, are easy to grow in this country and very tasty)
healing-liver-cirrhosis.blo...
Its Dr Berkson's research that made me start taking ALA. Whilst the blog I've linked talks about Cirrhosis, there's plenty other other sites suggesting the same protocol for PBC and other Chronic liver conditions. I'm taking the Selenium, but avoiding Milk Thistle at the mo because I dont know how high its salicylate level is. ALA does need taking with Vitamin B.
Good luck.. its a journey and a half!!
I would love to see any good Vegan recipes anybody has, as I am growing a garden this year. This disease is not fair, but then life is not fair. I love the fact that we are all in this together. This website has been a wealth of information and we will all find our way through this journey!
Of all things, I am allergic to almonds and use milk sparingly. I do not feel bad when I have some dairy also ok with breads. I do not have red meats regularly mostly chicken, fish. Love most fruits but too much no good bec of sugar. I do not have a weight problem and I am eating healthy nutritious food. My veggies need need work.
What fruits should be avoided
Always remember vegans foods can be more harder to digest than some other form of foods!
Healthy diet is good for overall health so try to healthy all nutritional food!
Eat what your dr says and what you feel good eating.. her diet plan might be good for her not for you
I eat everything in moderation since diagnosed 3 years ago including alcohol so far I’m good
🙏🙏🙏
What a post! My first reaction was 'kill me now' apologies I don't mean to be disrespectful but I love my food. Although I must admit when I go through a binge period and I am eating absolutely everything time, the itching returns with a vengeance so there definitely is some truth in what we eat. I just wish it was clearer so I could reduce these foods rather than changing everything and not enjoying food anymore.
I used to think it was just alcohol and cut down considerably to an special occasion drinker, however I am going through itching stage again (bad time with binge) and I am now thinking it must be sugar???
Any thoughts
Thanks
Itching is due to bile exposed in our blood steam I think so food should not be cause! Sodium and sugar is not good if you take more than recommend in a day!
I cut done significantly on my sugar intake I also switch artificial sugar for my coffee but I find out it also bothers if eat those a lot as well
Im eating very healthy food since 9 moths and lost 15 lb now I’m again adding little more carb, fatty meat and beer so I can gain back 5 to 10 lbs. lol
Same thing happened to me. Right after I was diagnosed I was doing great then would have these weak moments and binge, like several glasses of wine, a big steak, bread and a rich dessert all in one sitting..UGH!! I would be SO ITCHY and miserable for days!!! I have done much better in the last couple of months about avoiding my ‘triggers’ I can have a glass of wine and some steak and be fine. I cut out gluten and bread all together (see below comment) and as long as I don’t over eat a lot of rich/fatty foods with my wine I have found I can have a glass or two with no issue! I think it’s all the ‘good’ thingz at once that did me in, lol.
ITS ALL ABOUT INFLAMMATION!! What ever causes your body to react with inflammation is what needs to be eliminated. Meat and fat are not the devil, lol!!!
I am curious if you had any blood work or testing to see if you have any genetic defects that cause a breakdown in your methylation cycle or other factors that lead to the increase of inflammation in your system.
Generic advice from a dietitian flying blind on your genetic makeup, food myths and outdated health information is like throwing darts at a spinning board.
There is science behind why some people can drink alcohol like fish and eat what ever they want (my husband) with no lasting damage and others end up with a treasure trove of autoimmune diseases no matter how healthy they eat (me).
It’s important to find out what your body can and can’t process from a genetic standpoint.
There are also genetic factors other than celiac that keep your body from processing gluten. I have a genetic disorder called HP2 Polymorphism. Gluten wreaks havoc on my system and causes inflammation. I also have the MTHFR mutation. These two factors are what landed me with my rolladex of autoimmune diseases and PBC.
Eating vegan would have done zilch for preventing my issues and would not currently benefit me in any way.
I EAT LOTS OF FAT, haha!!! (Good fat of course)
I drink turmeric and ginger tea everyday.
I emimminated folic acid and gluten from my diet. I eat a diet rich in amino acids (like lean meat), antioxidants, vitamins and minerals.
I avoid processed food like the plague.
I no longer eat any food with added synthetic vitamins.
I take only vitamins derived from food sources in their natural forms. NOTHING made in a lab.
I take an active probiotic mix
I no longer itch, eczema that plagued me since childhood is gone, I can even slather down in perfume and lotions and NO RASH or headache!!
I no longer have pains in my side.
I no longer get migraines.
My fibromyalgia pain is almost non existent.
I no longer get fatigued and need a nap at 2 PM.
This is what worked FOR ME! Because I was able to pinpoint some major contributors to out of control inflammation in my body.
I was fortunate that my brother is a CEO at a lab company and I got my testing done there but 23 and me does these tests also.
I encourage everyone to find out what is causing their body to attack itself. Life is too short to live without meat and find out it was bread the whole time, lol!!!!
people here wish to pinpoint how why what causes ai..still healthy food is healthy food it helps overall maintaining our health period 😁😁
One thing I agree with you is we need to figure ourselves what is good for us and what is not... I have no problem drinking alcohol Getting drunk and puke🙊 no problem at all with liver except my hypoglycemia..I know alcohol is not good for my liver and my liver is already compromised so I control my drinking habit and always tell my dr how many I had in a month or so 🙊😜
Well the Vegan diet was something to aim for as only the process of elimination can identify which foods affect you. As for the genetic testing I have my genetic testing which was done through ancestry.com, but how do I utilize that to determine specific genetic issues? What type of doctor determined these genetic disorders?
Hmmm..I am not sure. I had a friend that used 23 and me. Hers came back with the results and a little blurb about each mutation or issue that was found.
One of them was MTHFR but a little different variant than the MTHFR mutation I have. There are about 30 known mutations of MTHFR. There is a ton of information on the web once you have the gene sequencing that is mutated. My MTHFR mutation is C677T.
She had several results abnormal and she said each one had an explanation and info she could use to research.
My doctor had never heard of any of it. I have family in TN and they see a specialist that treats MTHFR, so I know they are out there.
Going down all the way to ancestors and finding what kind of food our ancestors ate and what is good for us and what is not right now is extreme and expensive way I guess tho I would love to find out my ancestral history lol I’m a Asian guy who got the white disease I mean to say pbc is mostly prevalent to white people lol so my ancestors can be white🤔
I’m glad it is working out for you but I don’t think we have to investigate that deep to control or contain ai.
Hi Rebekahw74,
what was the name of the test you had done?
thanks
Diagnosed 7 years ago. I eat everything. I allow myself no more than 2 alcoholic drinks a day, but no more than twice a week. Just had my annual blood test and was told my liver was normal, I asked if he meant normal for PBC and he replied completely normal. The Urso is working.
I didn’t say white man I said white people cause mostly prevalent to Caucasian northern eastern part of Europe decedent
You only get your blood tested annually? Thought they would do it more often.
Started off every 6 months. Results got better each time so we changed it to an annual test and review. I lead a normal life, with the exception of 2 broken legs which causes me far more pain and problems. I think I am lucky getting an early diagnosis, early retirement from teaching and the urso is working.
berg944...lol! How do you figure it’s a white womans disease? Never heard it put like that. As far as I’ve read all or most ethnic groups can have these diseases. Some ethnic groups are more susceptible to some diseases. I’m white & not offended. Just curious if you are serious or being funny.