2 days ago I posted about PBC / itch/ diet. I wondered if anyone had been advised to follow a diet or remove foods/drinks from their diet when diagnosed with PBC? I've not had a single reply relating to diet!
From my own experience, I was never advised that there are certain inflammatory foods which might affect auto-immune conditions - I read up and adapted my diet myself.
Despite having a liver condition I was never advised not to drink alcohol - just told to go and live my life.
On developing the itch I have not been advised to lower my bile salts by eating a low fat diet, but from reading online, this might be helpful?
Can anyone offer any insight? I think it pretty poor that the field of regular medicine concentrates on filling us full of chemical medicines when altering our diets might help up significantly?
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KatherineM_PBC
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Hey Katherine, when I was diagnosed at stage 3 fibrosis about 3 years ago the hepatologist advised no alchohol and no special diet but to eat chicken, fish and beans. Since then, I did hear a Canadian doctor say to avoid anything with high fructose corn syrup and mouth wash with alchohol in it. He also said a amall amoint of alchohol was okay if you don't have cirrhosis and cannabis was okay. That's all I have. I do see some people say they have done really well on a no glutton diet. I personally find I have so energy if I don't have a little bread.
I was told no alcohol at all, to have less salt and to only take supplements he gave me. I was also told to take as few painkillers as possible and to make sure anyone prescribing medicine knew I had advanced liver disease. A small snack at bedtime was also advised. A good diet is a great idea, but what I eat won't make my liver able to store certain vitamins, so I have extra vits B and D.
I have just been through a rough period of 3 years suffering chronic migraine and taking a lot of painkillers! That might be why I'm now experiencing symptoms of PBC?
They don't know exactly what causes it yet, but I have also suffered with migraines for years and bounce back headaches between. I have taken a lot of zomig and ibuprofen, some naproxen. You've got me wondering if they are linked now. I hope things ease off for you.
I had just been diagnosed with Hashimoto's not long before PBC. My doctor told me anyone with Hashimoto's should not eat gluten, so I stopped immediately. I've been gluten free since then, about 8-9 years. About 3-4 years ago I went paleo, and have remained on a modified autoimmune paleo diet since then. (This has been reinforced as the way to go by my current naturopath.) The AIP diet has been the best thing I've done for myself. When I eat something that I react to, I have a huge increase in inflammation. I am early stage PBC still, after 9 years, and really don't have many/any symptoms. I only have the very occasional itch on the sole of one foot. Regarding low fat diet, I really don't know. I don't overeat fats, but I don't avoid healthy fats like nuts and avocados. I believe they are good for our health. Are you able to see a naturopath? They'd be a great resource. Or look into the autoimmune diet. There are a lot of resources online. My two favorite are Phoenix Helix (Eileen Laird) and The Paleo Mom (Dr. Sarah Ballantyne).
I just reread your post and maybe I'm preaching to the choir above! I'll leave my comments about AIP diet in case it helps someone else. And, I agree. I think diet plays a huge role in keeping inflammation down, which should slow the disease process.
Great that you were given dietary advice, I researched and changed things myself. When I asked my Gastro Consultant if going gluten free would be advisable he shrugged his shoulders and said he would get a NHS Nutritionist to call me, and when that happened, she knew even less than me about anti-inflammatory foods. I was strict gluten free for a while but I've eased up a bit with the odd slice of bread, I did miss that the most, GF bread is very poor eh! Perhaps I ought to be more strict again!
I was diagnosed in 2006. To my knowledge there is no specific diet recommended for PBC and most of us, like you, adapt a diet to suit. I have been told by the specialist in the UK that it is okay to drink so long as you stay within Government guidelines, no binging.
IMO as alcohol is known to be hepatotoxic if you want to have a drink it depends on how you feel, how advanced cirrhosis is, if any, and what your life is like - so the go and live your life statement is quite encouraging and I hope it means that you are an URSO responder with good blood test results.
Specialist have not been able to say what causes the itch although they make an educated guess and although we share a diagnosis of PBC all of us are different. Some find removing gluten from their diet helpful, others remove dairy, for me I lost over 20 kilos by taking out carbohydrates over a three year period. I now eat bread, rice and pasta again but in much smaller amounts. I have improved my gut health (and I believe this is the important factor for me) I take Kefir most days and about once a week I take a Pro-ven probiotics tablet, I went for a diet rich in vegetables, no processed food, avoid all sugars (especially soft drinks) and have little salt. In winter I make my own soups and summer is more salads - I often have red cabbage with sultanas as a salad base as a change from lettuces, I rarely eat red meat now and find the smell unpleasant. I do have the occasional white wine especially in the summer, early evening wind down. It is known however that a healthy weight is important in the fight against diabetes, heart disease etc, which would all put pressure on the liver so I am glad I was able to lose the weight.
As an aside the live your life comment I believe tries to remove the pressure we put on ourselves, any increase in stress either self inflicted or external is not good for PBC.
apologies for missing this element in your question of two days ago, the old brain box is not what it was
There are lots of people who eat foods that seem to help although I don’t think one size fits all, I guess it’s trial and error .
I was only ever told to eat a healthy diet, was never told to not drink alcohol only told not to smoke. Which I stopped doing years ago. I felt I ate well but after having seen a dietitian for IBS symptoms I had to tweak the diet so that improved the way I felt tummy wise.
Going by what’s deemed a healthy diet I was still eating too much sugar though, so after years of having too much I did cut that down to the lowest level I could tolerate. I do eat some dairy foods but they have to be lactose free for me and my diet is probably naturally low in fat.
What I do find though is I need to eat little and often breakfast, snack, lunch, snack, dinner I find this helps a little with balancing my energy. I can’t eat a large meal all at once so this makes sure I get the most nutrients as possible. I take vitamin D3 due to deficiency.
Hi Katherine The only dietary advice I've received has been not to drink alcohol and that bit of advice came after I asked if it was all right to have the occasional glass of Weston's cider! So I eat everything I want to, but keep off of alcohol - both in drink form and in cooking.
I was diagnosed a year ago and immediately started reading everything I could get my hands on about AI diseases. There is a growing consensus (more so in functional medicine than conventional medicine) that leaky gut is a pre condition for AI. I am currently working with a functional medicine nutritionist to heal my gut. This includes removing inflammatory foods (sugar, gluten, grains, dairy, legumes) and taking probiotics, prebiotics, and supplements. I eat as much healthy fat as a I want and I eat some meat (organic, grass fed). I have an occasional drink when I’m out to dinner. It’s too early for me to see any changes (especially since I don’t have any PBC symptoms) but I feel like I’m on the right path.
Thank you all for those replies, lots of differing information. When I asked my Consultant if I should go gluten free years ago, he shrugged and said he'd refer me to the NHS Dietician. During that appt it was apparent I knew more about anti-inflamatory diet than her! I have been gluten free for a few years and didn't drink alcohol as I suffered a lengthy spell of chronic migraine, taking lots of pain killers probably didn't help either. I was feeling really well until 2 weeks ago when I started to itch and now I'm feeling pretty fed up that I will have to be stricter with my food choices and no alcohol, I'm not dependant but l've been enjoying a couple of glasses of wine with dinner or a fruity G+T in the garden on a sunny afternoon. I'm only 52 and an uncertain miserable future seems to be stretching ahead.😔
I think you will find that it is a general problem in Britain as, until recently, the issue of diet has not surfaced in any medical training. However, just recently some universities have added some diet training to their courses and it is beginning to be understood that diet is fundamental to all conditions. So its a question of pushing Government and the medical authorities to ensure that all medical training involves a section on understanding how and why diet is so important.
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