What to do: I have read on here how important... - PBC Foundation

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What to do

Bakerc profile image
15 Replies

I have read on here how important it is to eat a healy diet. I dont see my gastro dr till June 28 so im not sure what foods i need to stay away from. Im a very picky eater so im afraid they are going to tell me to stop eating everything i eat and im going to starve. I dont like veggies or fruit that much. What will happen if i keep eating the way i do? Help!!

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Bakerc profile image
Bakerc
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15 Replies
cfsummerford72 profile image
cfsummerford72

mindbodygreen.com/0-22607/1...

or

lowfatlowcarb.com/paleo-die...

Bakerc profile image
Bakerc in reply to cfsummerford72

Thank you for the links...but my problem is i don't like any of that food. Always appreciate the advice.

Bakerc profile image
Bakerc

Thank you for your response. I really appreciate it.

Bakerc profile image
Bakerc

Hope thats what the doc tells me. Dora can I ask how long you have had PBC?

D0ra profile image
D0ra in reply to Bakerc

Of course! I have just been diagnosed. I haven't seen the specialist yet and will probably start medication once I do. I took the news very badly but I'm adjusting. I have been reading old posts on here and trying to understand it more. I hope you're ok. It's so scary.

Bakerc profile image
Bakerc in reply to D0ra

Yes it is scary. I was just diagnosed a week in a half ago but have had symptoms forever. Trying to adjust. But driving myself crazy with worry. Stay strong

Take the advice of your doctors they will know what is best for you, being newly diagnosed I would not worry to much about diet at this point. You will have enough going on without adding stress about food.

I was told to carry on as normal and I did so for 5 years it's only been the last 3 years I began to look more closely at my diet. I now follow a good balanced diet, the only thing I omit for the liver now is alcholol.

If you have not done so I would contact the PBC foundation and speak to them, they will give you good up to date advice the link is at the top of this page.

Bakerc profile image
Bakerc in reply to

Thank you so much.

Wocket profile image
Wocket

I was diagnosed in February and my specialist told me to eat as normal and that I could have the very occasional drink. I don't drink at all as I don't like it and never have.

Bakerc profile image
Bakerc in reply to Wocket

Good to hear. I feel a little more at ease. Thank you

youaremysunshine profile image
youaremysunshine

Hi.

I too am recently diagnosed as of a few months ago. Im still coming to terms with it all. After doing a ton of research, I went on a very strict diet (The Autoimmune Paleo diet) the first two months after my diagnosis and had great success with my liver enzymes going back to normal. It is a very hard diet to stick to if you aren't into healthier foods like fruits and vegetables. After continued research, I have decided to modify the diet to add in a few other foods. I think if you can make small changes at a time that you will stick to then that is a great start. Maybe find a couple vegetables/fruits that you like. There are good liver healthy fruits and vegetables like grapefruit, dark leafy greens (spinach, kale), broccoli, cauliflower, garlic, etc.

I have read a lot about the inflammation process in autoimmune conditions, so any foods/vegetables that won't cause inflammation and can help reduce it is important. I have started to juice regularly and eat more raw vegetables. Your palate will change over time, its just takes some willpower to start.

I am praying this works for me! I hope this helps. I know its a tough time when you are diagnosed. I am still trying to figure it all out. I will add, this was not something that my doctor recommended. It was personal research that I have spent hours and hours on.

Kiki

Bakerc profile image
Bakerc in reply to youaremysunshine

Yes i can start off with a few changes..i just hope i can cut out sweets and most processed foods. I really appreciate your kind response. Best wishes too you!

Carolyn

PBCRobert profile image
PBCRobertPartner

Ultimately, it is up to us to make the best decisions for us.

The liver is our processing plant. For us to help the liver do what it does, we need to help the liver by limiting the bad stuff we consume. (that includes food, drink, cosmetics, etc)

There are diets that advocate fruit and veg, or no alcohol, etc but it is our decision what we choose to eat. Fruit and veg are good for us (particularly organic). We know this. We can choose to learn to enjoy veggies and fruit, or not. Burgers are not particularly good for us. We know this, too. We can choose to stick with them because we like them, but are we giving our liver the best shot?

PBC is a long-term condition. Even the old, out-of-date information gives patients years with PBC. With or without a condition, we each have to choose what is right for us. We know smoking is bad for our health (particularly with PBC) yet people still choose to smoke. We can make long-term conditions (like stop smoking) or short term decisions (cut out chocolate for lent). Either way, we owe it to ourselves to be the best we can be.

There is no magic PBC diet, just as there is no magic weight loss diet. We have to value ourselves to the point where we will make the right choices. Health care starts with self-care.

Do the best you can.

That is all anyone can ask.

There are benefits from eating healthily, from exercising regularly (yes, even with fatigue) and from looking after ourselves mind, body and soul. Yet life is for living. Sometimes it's really nice to have a glass of bubbles at a celabration or a deep fruity red on a winter's eve or even an ice cold pint of beer or cider on a summer's day.

There is a time and a place for almost everything. Health is important. As is happiness.

Only you can make the best choice for you.

I'm not sure I've managed to say anything coherent in this post, but I just wanted to highlight there is no one-size-fits-all answer. We can help you make your own individual choices, and we absolutely advocate for positive self-management but sometimes there is a place for that bacon roll, etc...

Yours, as ever,

Robert.

Bakerc profile image
Bakerc in reply to PBCRobert

Robert thank you. Those are very wise words. I appreciate your response. All of you here are helping alot as nobody else seems to undetstand. I dont understand. I see my gastro on the 28th for the first time sense my diagnoses. Have a good day.

Shulsey profile image
Shulsey

I was diagnosed in 2012 at stage 2/3. I didn't do much changing in my diet. I continued to drink alcohol socially. Once I started to progress I stopped the alcohol consumption. Im now stage 4 with cirrhosis & varicies. I do know that stress is not good on the liver. I haven't changed much in my eating habits. I do keep my salt intake under 2000mg daily which is what my heptologist recommended. Plus I haven't drank alcohol in over the years now.

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