I have recently booked to see a nutrician expert reccomended by my gp. She has treated PBC before. So i am hopeful and a little relieved. My itching is scalp and upper back- not too awful. Anyway, I am still looking around on how to work with this and minimise symptoms so they don't limit me in the future too much. My visit to my go earlier this week was useful my panic subsided as she was reassuring with her common sense ways. Really helped me calm down and get practical.
I haven't looked at Holistic advice much but came a cross this and read through as it discusses autoimmunity including PBC. I found it intetesting but also have an intention to continue with meds prescribed as they do seem to help me. (Urso, C&D vits and continue on Sertraline which has been found in some cases to help the itch). I started the day with a fresh fruit, dried raisins , honey, cinnamon coconut milk smoothie . Then decaf tea and cocomilk. You get used to it then it's fine. So far so good. I will try and keep a check on what I eat starting today a good log. The site link has also got die try advice for a range of autoimmune disorders. It's practitioner is Irish based, but no doubt there's similar in the UK and U.S. and other places.
Anir29, Thanks for that website. Lots of good info. Limiting salt has been the hardest thing for me. Its in everything! I struggle with what to eat. Maybe you can give us a sample of what you eat in a day. Are you keeping track of your sodium count?
I can't take URSO. I got really sick on it, so my diet and supplementation from my naturopath really matter. I see a hepatologist Feb. 8th. Been waiting for this appt for months.
I was scared and nervous before but since finding out I can't take URSO, I have major anxiety.
Thanks again for sharing your info.
Stella dx 10/10/16 Early PBC in blood as of 12/16 no damage in ducts or liver yet.
so you got diagnosed shortly after i did in December. I am ok with Urso but wasnt originally some diarrhea then nausea as I upped the amount. I took it more slowly went back up and am ok. Perhaps you have already tried this? As for diet I think its too early to advise anyone else - I am just starting to find my way. I have looked at a few suggested diets online, most have lots of restrictions as might be expected and some can contradict their own recommendations. I think too it's important to talk to a nutritionist you feel you can trust, and alongside that inform yourself. I have booked a first appointment .The link i sent earlier is worth reading too. So far its trial and error a bit for me. As for salt there are several sites offering alternative flavourings of mixed spices. I have a morter and pestle to grind spices together, also seeds to be roasted lightly and added to food n place of salt, Very tasty! While it seems raw nuts (maybe cooked ones )are questionable I realised that peanuts are a legume so thats peanut butter, again the best you can find salt and sugar free. A juicer might be useful as well as the food mixer for smoothies. I recently read that too much fibre can also be damaging as much as too little. It should also be consumed with consideration to age. I am eating Spelt bread but need to go back to making my own as theres salt added most times if you buy it. There's recipes in books such as Raw Energy Bible (Leslie Keaton), various others that can be made without any flour or cooking. I gave up meat for a while then missed it so I think I will allow it in a little and focus on chewing well. IAs everyone has their own specific requirements for body type perhaps a food allergy test might be useful. I will be starting a food diary,a stool diary, and an activity exercise diary before seeing the nutritionist too.
I don't know if this is useful to you. Mainly I would emphasise approach both the Naturapath about the PBC , and your GP. I read 40% dont take to Urso . I hope if the Urso is definitely out your doc can suggest an alternative, others here have I think mentioned similar dilemmas and are using other medications. Hopefully adjusted diet does have its part to play. Much good luck, Ann
HI Anir Did your GP give you a NHS referral to the Nutritionist, or did you have to pay to see them? I understand that a Naturopath too has a good understanding of gut health and the diet to follow for auto-immune issues. But while I say that, I have NEVER been told by my GP or Gastro Consultant to change my diet and lifestyle in any way!!!
No it was my decision to ask my GP (in Ireland) to recommend a nutritionist. I will have to pay myself, and its not cheap! I do notice the difference already between some days and others in terms of what I am eating. My gastroentologist said nothing i could change yet doc was a little surprised i got no dietry advice. This nutritionist i am going to see has previous experience with PBC clients. Should be useful. As for the interest in naturapathic site ; it also seems worth a closer examination considering that PBC as you say is an autoimmune illness which may be instigated by environmental factors? I do think what we eat and what we absorb through the skin pores, our emotional /mental states all have a part to play in the quality of our health . I can let you know 're the nutritionist when i see her in a fortnight.
I would be interested to know how you get on. I feel I am quite well informed having researched diet more over the last few months, but also oddly, since cleaning up my diet, cutting out alcohol / cutting back on dairy and gluten / eating lots more fresh fruit and veg, I've had more tummy pains and 2 nasty colds!!
Oh dear doesn't sound great.. so your ' immune system is vulnerable more than before.?
How are you getting on with your Nutritionist? I have done some research and found a therapist locally who I am going to see for the first time on Friday- over the phone, she was also surprised that I had not had any advice on diet or supplements? What supplements have you been recommended, would it be too long to write a list of the foods she has suggested you avoid? Thanks in advance x
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