Food question

[Sara978]

Hello everyone

I have been diagnosed with pbc for almost 2 years now. I am not sure which stage I am as I am too scared to get the biopsy. I am guessing its an early stage as my bilirubin and albumin are in the normal range and my doctor said so far my liver is ok. My problem is that I am struggling with food as I had poor diet prior to diagnosis (mostly processed, fatty and sugary food and drinks) I have sadly continued to be that way (a little bit less than before) even after diagnosis but recently was diagnosed with type 2 diabetes so I finally decided to take of my diet. However, I find myself struggling with the idea of living with strictly healthy ( more specifically bland) diet for the rest of my life !! I am 35 now and have a 10 year old son and of course I want to stay around him as long as possible and the idea of dying young horrifies me. My question is had anybody who had been diagnosed long ago been following a strict healthy diet for pbc? Can I occasionally eat processed food and eat out? Had it affect you?please let me know and share your journey as pbc in my community is not widely known and doctors have been giving me different opinions

[Oidra]

Sorry I can`t help you over the diet to reduce diabetes but perhaps others can. It was your worry about not having a biopsy that concerned me. I have been diagnosed with PBC for 22years and have never had one either. I believe it is helpful in some cases but unless your specialist requires you to have it for diagnostic purposes, why have an invasive procedure if it is not necessary? I have no idea what stage I am at but as l am reasonably fit for an 82 year old (with urso of course) and my consultant has no worries it is not something that I ever think about.

[Sara978 in reply to Oidra]

Hi Oidra

thank you for your response. I absolutely agree with you, I asked my doctor if it was necessary to have a biopsy or if it would change anything regarding treatment and he said no so I didn't go with it. I'm glad to hear you're fit and healthy may you stay that way for a long time to come 😄sorry for the confusion my question was about the pbc diet not diabetes, I just mentioned diabetes to highlight where my decision to eat healthier started

[ninjagirlwebb]

There is not a specific diet for pbc. Not sure why you believe healthy eating is bland. It isn’t! Try to throw that mindset out the door.

Fresh fruits, vegetables, lean protein, whole grains are not only good for you but is tasty as well.

Once you wean yourself off the processed foods, you seldom crave it. If you eat healthy most of the time, you can also eat something you crave and unhealthy every now and then. Moderation is key.

I still have ice cream, cakes etc...and a drink every now and then. You shouldnt have it every day but a reasonable portion once a week is fine.

I also eat out a few times a week. On the weekends I might eat whatever I want if I really want it. I try not to obsessed about it much as long as I am eating healthy most of the time.

The minute I tell myself I can’t have certain foods then I crave them. If I say to myself you can have whatever you want as long as it is in moderation, I don’t really crave anything. It is more psychological than anything. Also if you dont have junk food in your home, you won’t eat it. I know I can’t stop eating chips etc so I don’t have any in my home to tempt me.

Here is an example of cleaning up the diet:

Breakfast-oatmeal with fruit, plain yogurt with fruit, or skip breakfast all together. I don’t eat breakfast on weekdays...but not sure how that works with your blood sugar situation

Coffee- drink it plain without sugar and either skim or 2% or almond milk

Stick to whole or healthy grains like brown rice, quinoa...

Protein: chicken breast, lean beef, fish, tofu

Veggies-eat all colors of the rainbow greens, tomatoes, peppers, cucumbers etc..

I don’t drink any sugary drinks (soda, juices, cocktails) on a consistent basis. In fact soda tastes too sweet and artificial to me.

It is not hard, you can do it! And try not to eat fast food! However if you feel like you need an extra push, talk to a nutritionist or dietician to address your needs.

[janetfolley]

hi Sara ...I was diagnosed with PBC 18yrs ago but had a biopsy which proved i had pbc i find it extraordinary that you didn't have one...I was always told to have a low fat diet as our liver doesn't do a very good job of digesting fats which proved to be correct as my cholesterol levels were very high of which I now take statins. I try to eat healthily but have the odd take-away and a couple of drinks once a week. I'm now 73 and regard myself as fairly healthy with the odd ache and pains (arthritis). Please don't worry to much about your health as you have plenty of good years to come. Enjoy life

[Wocket]

I honest think if you try to change your diet all at once you will find it difficult. My advice would be to change one thing at a time until you are use to it. Eg. Adding a small salad a day put low fat mayo on if you struggle with salad. You could also cut one thing out at a time. As you are a diabetic it is best to cut down on your carbs if you can. Hope this helps

[Michi1]

You’ll be amazed at how good you will feel when you are fueling your body with clean, healthy foods. You might want to start with drinking half your body weight in ounces of water every day. If you weigh 140 pounds, drink no less than 70 ounces. I’m an integrative nutrition health coach whose education in that field was inspired by my PBC diagnosis. Feel free to DM me if you’d like to talk.

[Larrysgirl]

Hya Sara,

Check into Dr. Berry and the proper human diet(not a diet but the proper way for humans to eat) Also the Diet Doctor. Both are on you tube. Any sugar and the carbs that turn into sugar are hard for your liver to process. I started on the Proper Human Diet 2 years ago when I learned about my PBC. I am healthier at 50 than I was at 25 and feel incredible. I also "accidently" went from 150 pounds to 125 pounds without trying. I wish I would have known about all of the info I have now when I was in my 20's. I hope this helps you as much as it helps me.

God Bless, Anni

[Turquoise2075]

Hi Sara,

I didn’t get the biopsy either. My Mum died just after diagnosis and the last thing I wanted was a liver biopsy. But reading current advice it’s no longer considered necessary for diagnosis, so main thing is watching the routine blood test results.

I’ve only been diagnosed about the same time as you. I was deteriorating health-wise so I did make dietary changes and the results have been so good it hasn’t been hard to stick to it as I never want to go back to how I was. So if you can make healthy changes I think you might find you actually crave the unhealthy things less and less.

I initially cut out gluten which led to a 12kg weight loss. I previously couldn’t shift the weight but I’m now in the healthy body mass index range. Gluten sensitivity had been causing inflammation and was an indicator of leaky gut. I’m about to see a new liver specialist who works in with a naturopath I’m already seeing. The latter organised micriobiome testing for me which demonstrated leaky gut and gut dysbiosis. Current clinical research is showing these issues are common in PBC. Food allergy testing showed I had a very strong dairy allergy, strong beef allergy and mild lamb allergy.

So I now eat fish and chicken as my main protein, eggs, fresh veggies and fruit, gluten free cereal and almond and coconut milk. I’ve cut out added sugars. I use quinoa as a substitute for rice much of the time which seems to suit me better. This may sound boring, but it’s really not. I still use herbs and spices and enjoy my food.

A few months ago I had terrible brain fog which has now gone, debilitating fatigue which is now minimal and joint pain which has now completely disappeared. I used to get frequent migraines and they are now rare. I was developing the dry, scratchy eyes that can occur with both PBC and Sjögren’s syndrome which is often a con-current autoimmune disease and now that has cleared up. I’ve also stopped getting chronic sinusitis. I’m on some supplements from the naturopath which are to repair the leaky gut and gut dysbiosis.

So I just wanted to say that dietary change can lead to huge improvements. I feel so much better that I don’t feel tempted to buy any of the things I might once have at the supermarket. That doesn’t mean I can’t have the occasional treat, but mostly now I find I’m not drawn to anyway.

You won’t necessarily have all the issues I have with food, but I just wanted to encourage you that once you start feeling a lot better it isn’t so hard to stick to a new diet. The right diet for you may not be the same as for me, but you can experiment with different things to see what works. Sometimes just eliminating one thing and seeing how you go can be a starting point.

Some people with PBC have reported great results from the autoimmune protocol diet. I tried it and got some benefit, but have done best on a diet based on the precise micriobiome testing I had done. I’m sure with the diabetes you will have issues specific to that.

All the very best!

[gwillistexas]

I was diagnosed in 2017. I am still stage 2 fibrosis, confirmed by fibroscan and later a biopsy. I have never been restricted on my diet. I only take Ocaliva and so far it has kept me stable.

[Odieweb]

A healthy diet can be fun and interesting. Like some I have changed my diet, to take out gluten and dairy and alcohol and minimal sugars, but don't believe that is necessary for all. Agree with others, explore options, or talk with a nutritionist if that will help you. There are lots of books at libraries and information to help you on your journey. I didn't have a biopsy either, but the blood tests including the presence of antibodies was enough for diagnosis. And then I had a scan to determine liver damage, which at the early stage for me fortunately was minimal. Best wishes on your journey. I'm likely healthier than I ever was before, with the small changes I've made. I also try to exercise at least a 20 to 30 minute walk everyday.

[IAmTheGlue]

Hi Sara,

I do follow a fairly strict diet, because I do have food allergies/intolerances and also, I feel so much better.

You are not required to change your diet for PBC. My doctors were clear about that. I changed mine slowly over a period of years, narrowing down what works for me and my body.

I am gluten free due to gluten allergy (I was not diagnosed as Celiac due to having already stopped eating gluten by the time of my colonoscopy/endoscopy.) I no longer tolerate meat (confusion) , oil (stomach pain) much salt (swelling) etc so. I consider myself a gluten free vegetarian if too want a label. I don’t drink milk but I do use dairy based protein powder (casein at bedtime, whey during the day) and I have the odd egg here and there. I don’t eat “frankenfoods” for example vegan sausage… nah, I need to be able to read the label and identify the ingredients.

I have a calorie counting app, I use MyFitnessPal (free version) and if you track what you eat, you can see a nutritional analysis. Like it breaks down every day how much sodium, protein, vitamins, fats by type, etc and you can see you are getting enough protein, not too much sodium, etc.

If you are not trying to overhaul your diet, just make a few positive changes. Drink more water . Drink more coffee. Find your favorite fruit and vegetables to add in wherever you take out something not as good for you.

I’m in early cirrhosis, and I’m of the mindset that I’m building wellness in my body despite my wonky immune system and ailing liver. I’m improving my cardio fitness, losing weight, trying to build strength to get me through whatever life throws at me. I’m never going to win a beauty contest or a race, but if I can build my health up that is all I want to do because I’ve been watching my mom and I know what happens if you say “screw it” and give up.

Just make a few changes that you can live with and see how you feel from there. Much love!❤️ Stay strong! 💐

[58goose]

It's confusing when you're diagnosed with an illness and try to get your head round changing your lifestyle! I was diagnosed several years ago with PBC, had never heard of it before and didn't know what to do. This forum is great for asking questions,as I have in the past, and joining the PBC Foundation is also a way to get the info you need. I have lost 4 stone through Slimming World which is a healthy eating plan - if you live in the UK you can get 12 weeks free with SW by a referral from your GP. We have lots of people who were diagnosed with Type 2 diabetes who now take little or no medication for it due to their weight losses. Good luck x

[gillrich]

hI Sara lots of good advice and some contradictory so best advice is always found from the pbc foundation in UK Pbcfoundation.org.uk join them absolutely free but donations great fully appreciated .