I just got diagnosed with pbc and I’m new with this and honestly little scared. Gastroenterologist didn’t say anything about it and said because of my fatty liver just got diagnosed with fatty liver also I didn’t have fatty liver 2 years ago and been dealing with slightly liver enzymes forever like 80’s and 90’s AST and ALT before. Now I have normal AST 28 avg range 0 - 40 and AST 61 avg range 0 - 44, mitrochondrial M2 antibody 31.8 avg range 0.0 - 20.0 which indicates I have pbc. Cholesterol 211 avg range 0 - 199, triglycerides 173 avg range 0 - 149, ggt 160 avg range 0 - 65 steotosis score 0.81 avg rang 0.0 - 0.30 how fatty is my liver? GI doctor said diet and exercise he didn’t say what to eat and what not to eat no medication for fatty liver and no supplements than can help. Now I’m scared what to put in my mouth since almost everything my liver don’t like. No sugars no fatty foods no salty foods no carbs no bread no tortilla no nothing just vegetables and fruit and clean protein it’s really hard to do it specially if you are always on the go. I’ve been extremely sick about 3 and half months getting better now but I started with extreme dry mouth and throat I just got up one morning in August like that no single drop of saliva in my tongue or throat was horrible then my immune system started to kick in with running mucus from the back of my throat and still dealing with mucus in my throat and phgelms and not even having a cold or a flu also my tonsils got swollen but now that’s gone tonsils don’t hurt anymore had changes in my voice due to the mucus running down the throat every single muscle hurt lasted for a week or a week and half then the joints lasted for a week or a week and a half limph nodes hurt too lasted for a week too from the neck to the shoulders and also groins to almost touching the knees it was painful lasted for a week or 2 had headaches sensitivity to the lights also felt my eyes swollen and noticed of seeing more than usual eye floaters when to the eye doctor as well and of course she said eyes floaters are normal and would able appear more the older I get but I think is not true because if it was like that how come I started to see them more than usual I mean new ones small ones than the old eye floaters I used to see rarely had to close my eyes in order to see 2 or 3 of them Max 4 on each eye now they are 7 or 8 on each eye the old ones got bigger and the other ones are small new ones I started to take my vitamins I quit taking my votamos since I got really sick since I don’t know what was going on and stopped everything but seems vitamina are helping with the eyes floaters and I’m seeing them less now they seem to disbanishing or getting lighter and I don’t see the new ones just the old big ones but lighter color before used to see them really dark and clearly didn’t have to close my eyes could see them all the time specially on something bright as a white wall white floor or sky or computer screen, also experiencing dry skin from toes to head and of course the itchiness. And the first weeks I got really sick back in August also experienced fever for a week with sweetie hands and feet with chills lasted for a week also after that experienced rash on my back and chest and shoulders like sun burn skin and burning sensation I even had to sleep with a fan on hitting my back or body so I could relief some of the burning sensation and lasted also for a week also experienced tingling sensation on my feet and hands lasted for a week also spent a whole month just sleeping going to bed early because felt so tired and irritated eyes and little blurry vision with those floaters made it worse, also had vertigo or felt dizzy couldn’t just stand or be on feet doing stuff for too long got tired and dizzy I had to go to be, also lost of weight I used to weight 240 the heaviest o ever been I’m 6ft even but didn’t look fat since I used to work out 3 or 4 times a week cardio and weight lifting each time 30 minuet cardio and rest weightlifting for 2 hours total each time. I used to eat clean would consider that I only used to eat white rice and chicken or beef for protein I avoid the bread or tortilla but I admit I did have cheating days and would eat tortilla and fast food fast food would be only Mexican for the nachos and beef and chick fill a and subway didn’t know bread was killing my liver. I had All kinds of symptoms doctors didn’t know what it was went with every doctor. Now that pbc is positive in my lab results and been dealing with that kind of liver enzymes forever seems doctor is used to see higher numbers that is not seeing my case as a big deal but I’m still I afraid because I don’t feel 100% I still feel sick now that I don’t exercise I’m losing weight without even trying I admit that o did cut on the sweets and fast food since I got sick and I eat less also since I’m scared to eat really. I’m at 220 with shoes on so I might be on 218 without shoes. I’m scared losing weight without even trying and could be a sign of pbc is that bad or fatty liver or my immune system attacking me and not letting me gain weight or just stay at certain number and it’s been since aug again since I got sick almost 4 months and lost those 20 or 22 lbs. I’m I losing weight fast? I know it’s a big post and I’m sorry I’m just newly diagnosed with pbc and don’t know what to do, I was thinking to skip gastro and go directly with the liver specialist only doctor? Thank You
Just got diagnosed with pbc: I just got... - PBC Foundation
Just got diagnosed with pbc
hello, sorry to hear you are having such problems. Have you by chance been checked for Diabetes? I have type 2 diabetes and was told my PBC caused it. Some of the things you have described sound very similar to diabetes symptoms, dry throat, tingle in feet , sweats, eye /vision problems these are all things I have gotten with my diabetes. I would have your sugar checked just to make sure. Since PBC can cause diabetes
Hi mamma261, thank you for your reply. Yes, glucose serum normal was 79 avg 65 - 99, no glucose present in the urine either. I actually checked my labs again and I realized I’m on the border line on the sodium level avg levels are 134- 144 mine was 143. I’m sorry mamma261 that pbc caused you diabetes and I actually read that too that can give you diabetes it’s awful. The tingling in feet and hands went away only lasted for a week, but the dry throat is getting better but still gets dry only when I’m sleeping during the day I do cough Phelgms might be something else I do have an appointment coming up in December with the ent for that because been having mucus in my troath for months like 4 months already, but every morning I get up with dry mouth and throat I remember when I used to wet my pillow if my mouth would open while sleeping now that just won’t happened anymore it get dry I even feel my tongue stick to my mouth due to lack of saliva and that’s every morning.
Hello 3phyraX.
From how you state you are eating now I personally don't think such a great idea. We need at least a little fat for the fat soluble vitamins that can be a bit of a problem with absoprtion in PBC. If you're not eating properly then you are more than likely to start to lose weight. I have not gained any weight since 2010 but have gone down around half stone but my weight seems to remain at one point. I just eat if I want to eat and at times find I don't feel hungry so don't bother.
I was informed at diagnosis which was late 2010 (I did ask) not to change my diet, just keep eating s the consultant did ask about diet pre-diagnosis.
I don't think bread is killing the liver. A little I doubt will do any harm. I continue to eat bread but don't go OTT with it. I think when we are informed PBC is liver-related (it's actually the bile ducts that are under attack that causes the liver to inflame) so easy to blame everything.
I'm not a doctor of course and any medications you could be taking could of course all be 'clashing' in the system causing additonal side-effects. A lot of medications can cause drowsiness and dizziness.
It has to be remembered too just because we have PBC we can have other things that are unnconnected too that we have to deal with. (I only have the PBC myself and only take urso for it but I know for a fact that now I'm 53 (and not far off 54) my bones are not in tip-top condition as they used to be. I get the odd gripe especially if I've done any lifting and I have developed a stiff thumb on one hand where the wrist is and sometimes it simply ceases up a bit and that's when I find I automatically do soemthing a different way to get round it. I reckon it is more than likely PBC related due to a few factors we can encounter with PBC.)
Not sure about your eyes, we can develop dry and I find odd times my eyes feel a bit itchy (but I started out itching and though it lessened over time I still itch during the night). The floaters can appear in anyone. My husband was checked out in hospital this time last year after he went to the opticians stating he had one and he was referred to local hospital for further checks. He was discharged 5mths later and the floater will either go or remain. He was informed that you get used to it being there and your brain learns to ignore.
Perhaps it might be best addressing certain issues one by one? You could perhaps see an optician first re your eyes and see what he/she thinks.
I know we have our LFTs (liver function test) taken at intervals with PBC but we also have one known as GGT as routine as that can be an indicator of liver inflammation. Also there is the FBC (full blood count) and from those it can lead to a doctor maybe thinking there might be this or that that needs investigating and that's when one might have additional bloods for other things. I appear to have a one point below normal range HB count each time and it was originally thought blood loss. Anaemia can cause this. I have in the past had mild anaemia but seems that the HB count remains stable even though no anaemia. I found out the body compensates for this if slightly below and it can be the norm in females. But a doctor can spot these things.
You might need to write down what is concerning yourself and then see a doctor and speak about it.
Peridot...was said👍
Peridot...oops! “Well” said. Autocorrect ☹️
Thanks so much for your reply peridot. I’m 34 years old and have no other medical issues besides the fatty liver and the pbc, I don’t take any other medications not even Tylenol I’m one of those that don’t like to take medications unless I’m dying or I need to take them I let body fight for any complication it might have but if it continues then I go to the doctor and have some medication for whatever it was I do not take long though to go visit the doctor I would give my body a month to recover if it doesn’t recover then I go right away like this issue that I have now with the mucus not stopping been for months already and next doctors appointment is coming up in December then I would also need to see the liver doctor specialist since gastroenterologist is not taking serious my lab results and since pbc is a progressing decease I need medication for it to stop up for a little bit I know there is no cure and at some point will end up in cirrosis unfortunately I don’t even drink I would say like no more than 10 times a year and those would be the holidays and my birthday not every weekend. So I was wondering peridot if you are seeing a gastroenterologist or what kind of doctor are you seeing for your pbc? I did go to the eye doctor she said my eyes are normal and healthy I was worried and read about cytomegalovirus cmv before knowing I had pbc because I didn’t know what was going on with my body and read that cmv virus can go to your eyes and you start seeing the eye floaters and starts with one eye and then goes to the other one as well and says within 3 and 6 months you can go blind so that’s why I went to the eye doctor and gets my eyes checked And did not like her diagnosis since I do wear glasses to see far like when I drive I gotta wear them or I won’t see signs or street names but they do bother me seeing from close like to a computer screen or to read a book etc I do see well from close and inside the house I do see perfect so she tested my eyes and of course didn’t see well the letters from far but told the doctor about it and that I do wear glasses and that I can see well from close and she gave me a test from close and said if I was able to see the smallest letters and I did read them from my hand though and she said that I had a perfect vision and said I was 20/20 and I was like how that can be possible if I wear glasses in order to see far? So she said that floaters are normal and nothing to worry about and she checked my eyes and have my eyes delatated and saw through my eyes with a lamp she did not see anything wrong and she was able to see the floaters in my eyes and also said that saw cataracts in my eyes at age of 34? And asked me if I used steroids and of course never had. So at some point that could get worse obviously with time and most likely have them removed maybe when I’m in my 50’s or 60’s maybe? But that’s something else what’s really much of concidense is all these symptoms that I mentioned I had trough August until now, I’m not sure if I mentioned that I had yellowish diarrea for 2 months straight mid August to mid October was painful and every morning I remember every morning at 7 am my stomach would wake me up to go to the bathroom and did like 3 or 4 times a day that was my concern so that’s why I visited the gastroenterologist and he found the fatty liver and the pbc but I’m sure the pbc caused the fatty liver and would progress to more with time since I always had issues with my liver enzymes elevated always every doctor would ask me if I drink alcohol too much and I don’t drink too much weight of alcohol like I mentioned no more than 10 times or less a year and last gastro doctor 2 years ago did not find anything besides hpylori and liver enzymes elevated and no fatty liver means it’s progressing and that’s all I have right now dry throat and mouth and mucus during the day but I’m sure all those symptoms I had was a flare from the pbc and scared to have another flare like that it was horrible thought I would die and not be able to get out of bed and that I’m losing weight but might me that I’m not eating any sweets anymore chocolates or sugar I avoid that and I did admit before August I did hit a lot on the sweets donuts chocolates and cakes and all that every day but also was moderated every day I didn’t go crazy either thank you so much peridot for your advices and comments and thank you for letting me know about the pbc.
Floaters are common occurrences as we age. I never heard of them until I had them. Had them checked out by opthamologist. My eyes are very dry. I no longer wear contacts because I rub my eyes too & then my corneas got scratched. Took a whole year to get rid of the scratches while having to use antibiotic drops daily & going back to opthamologist monthly. I get my eyes checked annually.
Yes, actually I did have floaters I think since I was a kid but for some reason the old floaters got bigger and one of them on my left eye is right in the middle and it bothers me a lot but they were light dark before almost invisible only if I close my eyes I would be able to see them now I see them even more clear even with my eyes open and got new little ones around the old ones , I do have dry eyes too they got worse actually been suffering from dry eyes since a kid but now got worse and have to help them lubricare at least once a day but the eye doctor told me my eyes looked healthy so it’s ok and vitamins do help for some reason to make them go away or look very light and barely see them. One thing nycgirl2012 by any chance did you get these marks under your finger nails and toe nails on the tips across the nail like a dark line across the nail? I noticed that when I started to get all the symptoms that was one of them it was funny because I was able to see it and feel them specially it felt weird like kind of itchy or tingling a weird sensation and they still there all my nails at the time a dark cross line I looked only and says issue with the liver and it was right lol but I was wondering if someone else has them too?
It is challenging to sort all of these symptoms out. Not everything is specific to pbc, but is related to our autoimmune prone bodies. My nails are okay. My doctors always look at my nails too, in addition to feeling my neck, & pressing on my abdomen. Apparently they are taught to be able to feel if something is awry. Anyways, try to remain calm until you see your specialist. I hope you get someone who is compassionate & knowledgeable. You will feel better because at least you are being taken care of.
You need to have your primary doctor help you with going through all your symptoms & then developing a game plan from that consultation to identify what next steps should be taken.
My primary doctor who is also a GI & internist recommended a Hepatologist to me. I see my Hepatologist on a regular basis after my PBC diagnosis.
I am much calmer these days than in the beginning because I trust my doctors to take care of me.
Don't be afraid to ask lots of questions until you feel comfortable with what is going on. Write down your issues & then have the doctor go through each concern with you. Take notes or bring someone to do that for you. Have the doctor plan out your next steps.
Good Luck!
Thank you so much for your reply nycgirl2012. I actually did go to my primary doctor and told her all my symptoms she did the basic lab work and showed the liver enzymes elevated and referred me to the gastroenterologist but now that gastro found the pbc I’m gonna have to go with my primary doctor to refer me with a hepatologist for the pbc. Now the fatty liver the gastro did say I have to change my diet fruit and negetables and clean proteins not fried and stuff cut on fats sugars too and salt, are you on a special diet? What do you eat? Or can’t eat? What do we need to avoid? Those are my main concerns the diet and the next steps for the pbc but for that I need to see the doctor but I want to not harm my liver more with food I suppose not to eat Thank you.
How did the GI diagnose you with Fatty Liver & pbc? Elevated LFT's are a common result of pbc as well.
The Hepatologist might do a liver sonogram and/or biopsy if you are in the US. Also a bone Density scan to establish a base line as pbc patients are at risk for osteoporosis. You need to maintain vitamin D levels & eat diary for calcium.
There is not a special diet for PBC patients. Healthy clean eating is encouraged, mainly fish, chicken breast, low fat meat options, veggies, fruits. Like you said, limit sugars, too much salt, alcohol. If you just eat the items found in the outer perimeter of the supermarket, you are good.
On a typical weekday, here's a sample of what I might eat.
Breakfast
Plain Coffee with either almond or skim milk
Steel cut oatmeal with fruit, almonds etc
Canadian ham or smoked Alaskan salmon & poached or fried egg on slice of whole wheat toast
Omelette (veggies, ham, cheese etc)
Plain Greek yogurt with fresh fruit
Lunch
Green Salad with grilled or rotisserie chicken, extra virgin olive oil & balsamic vinegar
Cauliflower fried rice
Spaghetti & turkey meatballs
Chicken & veggies stir fry
Dinner
Veggies/salad
Chicken marsala over pasta
Vegetarian tofu stir fry
Baked fish (Wild Alaskan Salmon, Wild Pacific Cod, Wild sea perch, halibut, ahi tuna) - I stay away from farmed fish because often they are not bred in sanitary conditions & fed bad feed
Turkey meatloaf
Every now & then, I have steak
On weekends, I eat what I like because you can't be on a stringent diet all the time.
I also have a drink every now & then. I had 3 drinks this month. Just light stuff like cava, wine & a margarita.
My doctor, Hepatologist told me to think of my meds as just taking another vitamin. He said, Stress exacerbates any autoimmune condition & to let him do the worrying. He is extremely attentive.
Hopefully you will find a doctor that you have rapport with & work with him as a team to manage this condition.
You will be fine. 😀
nycgirl2012...looks like I need you to prepare my meals, lol! Just kidding. Very healthy menu. ❣️
Mark Bitman has the greatest recipes. I altered his quick & easy meatballs using ground turkey instead.
markbittman.com/htce-fast-s...
Thanks! I’ll check it out🤗
Agree! I printed it out!
Sorry for interfering, but I had to say that my Doctor advice me not to eat anything fried, only boiled or cooked in the oven. He also said to avoid meat balls and procesed meat like salami or ham.
I make my own meatballs with organic turkey meat. That is a bit different than classic meatballs.
I agree, no processed meats or meats with nitrates. Gotta read labels.
I used to go to subway and my sub was all about ham and salami and used to ask for double meat 
without knowing was hurting my liver even more and used to do it every single day since I was on a clean (diet) I was thinking better eat that than McDonald’s or Mexican food but now that I know it’s hard we are so limited on food and it’s not fair but all we can do about it is take care of ourselves and watch out for what we eat since liver can’t process the bad food :(.
I try to make healthy choices & the best way is to cook for yourself & bring your own lunch & snacks. I save a lot of $ this way too.
Thank you so much nycgirl2012 for sharing your tips and diet plan sounds very delicious but gotta admit not as delicious as a chocolate cake or cheesecake but looks very healthy and good defenetly I’m going to try your diet plan sounds nice and check out that website because is hard I run out of ideas fast when is about healthy meals. One question nycgirl2012 do you also have fatty liver just curious? Because I was told to watch out on fried stuff and eat clean, oven or boiled stuff avoid the pan as much as I can. GI sent me to take an ultrasound that’s how he found out I had fatty liver in October and pbc through blood test mitrocondrial m2 antibody was high and says about the pbc and the autoimmune disease but when I went to see him again he said not to worry about and that came out positive the pbc because of my fatty liver and said as soon as I lose weight diet and exercise it will be fine my numbers so he didn’t take it serious and pbc is serious and needs to be treated so that’s why I need to see the hepatologist I did not have fatty liver 2 years ago which means that the disease is progressing that’s why I was asking about if there was a specific diet for pbc because fatty liver yes you need to lose weight and eat as clean as possible nothing fried fats greasy foods he said also avoid fructose salts and sugars.
Before I was diagnosed, my doctor thought it could be fatty liver. I had a biopsy done which was inconclusive when interpreted by the hospital surgeon. My Hepatologist then requested for the samples/slides to be reviewed by a renowned specialist who focuses on diagnosing liver issues & it was pbc. I don't eat deep fried stuff much. Stir fry is healthy & I only use extra virgin olive oil or avocado oil. I splurged on weekends & eat what I want. My doctor think that's fine since I don't go too crazy. During the week, I mostly live on salad, veggies, fruit & lean meat. I have one piece of dark chocolate daily to satisfy my sweet tooth. Believe me, you will get so used to it that you won't want the bad food at all. My only vice is that I crave desserts so I do indulge on weekends.
You sound very stressed it would be good idea to go to hepatologist if you have pbc dont worry too much about diet eat healthy diet thats what i do
Hope all goes well
Ballymahon2 thanks so much for your reply, and yes I was very stressed out but it’s getting better just hard to change your life style your diet specially since I used to love all fats, greasy stuff, fried etc. Sometimes you are in a hurry and can’t make your own food but you are out there trying to figure out what to eat because most of the food from outside is bad for you. But I’m learning a lot thanks to you guys here and the website is helping me a lot. I’m going to set up an appointment tomorrow with the hepatologist I was scared because I’m not taking any medication for pbc yet since gastroenterologist did not take it serious like I said he said it was due to the fatty liver that labs showed I had pbc and he said once I lose weight and do diet and exercise your labs would be back to normal? And I was seriously? If I have pbc what my blood results said then it will not go away it will get worse if I continue like that and not taking any medication for pbc o think he is waiting for my numbers to go up or worse I don’t know but defenetly need to go to the hepatologist is not the first time either my labs shows liver enzymes elevated they have been since I was born I think lol or in my teens what I remember so no it’s not going to get any better it will get worse if I have pbc that’s why I was so worried but i don’t have to be I’m more calm now and just going to the hepatologist as soon as possible.
Good to get second opinion from hepatologist
I know how you feel i have seen hepatologist my tests inconclusive has done more tests to confirm pbc
Wish i knew for definite and start on urso
Waiting is the worse
I stick to healthy diet and no alcohol
I never liked fatty foods anyway
You get used to a healthy diet
I have porridge in the mornings which i like
At least i am doing all the right things to help my liver
Just waiting for diagnosis of pbc
So sorry for you. I have gastro cause here I don't have a choice. Join PBC foundation you can ring them for help plus lots of stuff on the web site to help you with your questions. Xx
Check your sugar, thyroid and rheumatologist as well..fatty liver or pbc just don’t get panic.. you can eat what ever you like but healthy diet is good for health and we need to stay healthy to fight pbc😁👍🏼
Just relax and have another opinion from another dr if you can
Good luck and keep in touch
U will find lots of good information here about pbc
Thank you brother
Get to a liver doctor ASAP.
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