So, if life with the fear of facing my newly identified disease isn't already confusing, I had my biopsy last week and received inconclusive results Monday. Based on elevated LFT's, AMA, and high IGM (but not elevated ALP), my doctor ordered the biopsy to get a clearer picture of my 'probable PBC'. The biopsy came back unclear of PBC though "some portal tracts appear to be missing bile ducts,and there is mild portal fibrosis". The doctor spoke to the pathologist to get a better understanding of the written report which references "findings suggest a component of AIH...however an overlap between autoimmune hepatits and primary biliary cirrhosis cannot be completely excluded. Features of primary biliary cirrhosis are not identified in this sample, the findings are relativly patchy and clinical correlation with appropriate laboratory findings is recomended". He's as dumbfounded as I am, as I don't have ANA or ASMA markers for AIH and it all clinically leans to PBC. I know the samples were small slivers and it is anyone's guess whether it is representative of my entire liver. Anyone have this happen to them?
I also questioned whether I should start meds and he would like to wait three months to make a more appropriate decision on treatment, especially since the word 'mild' was used several times in the report to describe findings. He explained that with the recent dietary change to GF, a 24 pound (nearly 2 stones?) weight loss, clearer skin, etc., that inflammation is clearly leaving my body and four LFT blood work ups have proven this with AST/ALT dropping almost two-fold. He would like my weight and labs to stabilize so he can look at baseline numbers and determine whether URSO, a low dose of Prednizone or both should be administered. He fears putting me on med too quickly will disguise the change my body is going through with the diet and we won't know if the meds are dropping numbers, or if being GF is helping to drop them. I am wondering if any of you have ever experienced a delay in treatment or perhaps a change in direction after a biopsy? Thanks!
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JennerLayne
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Hi there, I have PBC and AIH. As far as I am aware, there has never been any doubt. My blood results pointed to PBC and I had a biopsy to confirm AIH. I was put on Urso as soon as PBC was diagnosed and then as soion as I had my liver biopsy to confirm AIH I was put on 8 steroid tablets a day, gradually reducing down to one until inflammation was under control. I was then put on azapathrine but had a bad reaction so now take mercaptopurine for the AIH, urso for the PBC. It is interesting what you have said about gluten free. I went on a detox diet, a couple of years before I was diagnosed for a month which was gluten free. I lost a stone in 4 weeks and felt the best I had in a long time, no allergies and no fatigue. Why did you change to gluten free ... was it recommended?
Yes, going GF was recommended by my Gastroenterologist and he laughed and said 'Don't tell the Rheumatologist I'm recommending this or he'll think I'm a quack!" (I laugh now!) I was sent to him by my Rheumy because of slightly elevated LFTs and my complaint that food was getting stuck when swallowing. I also had heartburn, GERD, bloating (I looked pregnant!), and what he called 'sausage fingers'. It felt like my stomach wouldn't empty so I was eating less and getting larger by the day. He took one look at me and asked if I've considered going gluten free, and actually the week before I had just bought a GF magazine to learn more about the food available to me. Upon his suggestion, I started immediately and am in my 9th week. The weight is falling off, my mood is much happier (ask my family, who was tired of my irritability!), my fingers look normal again -- I can bend and clasp them, my RA is much better and even my nasty rosacea breakout has cleared! I've decided I am NEVER going back to my old food because I am 'eating for my life' and feel better than before, even with the Dx hanging over my head. It was on my second visit to the Gastro, that I learned about the high AMA (no ALP however) and suspected PBC. He went on to test for elevated IGM, and promised a liver biopsy if the IGM was high. Yep! Meanwhile, my LFTs have dropped with each test and I won't see him again for 3 months. I am considering visiting another hepatologist with my ultrasound, biopsy and labs just to get a second opinion on the unclear Dx.
I'm curious why you didn't continue the GF/detox diet if you felt so well and saw results. Is it something you would consider now?
hi jennylayne,l too have pbc and a few other probs and read your blog with interest what is the gf/detox diet please as several things you mention have struck a cord with me as l have recently thought of trying a gluten free diet but don't have a clue where to start ,would love some help.
Hi JennyLayne, this must be so frustrating to not get a clear answer as to what is going on after going through the biopsy in the hope of doing that. I have very similar blood results to you with positive AMA, abnormal AST, ALT GGT but no rise in ALP. I do also have weak positive anti smooth muscle antibodies though so overlap syndrome is a real possibility. I thought positive AMA was pretty much specific for PBC though, so interesting that even though you have that they are unsure. I would certainly get a second opinion re diagnosis and treatment, cant do any harm to draw on another's experience. Best of luck xx
Yes, I was also informed AMA is indicative or at least 'highly suspect' for PBC, especially if there are several reinforcing factors such as elevated ALP and/or IGM, along with elevated LFTs.
Had it on Tuesday, so well on the road to recovery now though it didn't all go quite as planned and I had a lot of pain afterwards. Maybe a small bleed in the muscle they thought, but they gave me plenty of painkillers and sorted me out Got to wait till a week on Monday now for results.
I stopped doing the detox because it was a 28 day detox. At the time it was also too much of a faff to sort my family a different meal to myself. The detox also involved being vegetarian. I was busy and money was tight and GF alternatives are expensive. Think I might try GF again now .... you have inspired me. I will let you know how I get on.
The toughest part for me was finding a good bread, although I make do with sandwiches by placing them on lettuce leaves and wrapping the meat/cheese/condiments. The better I feel, the more I am inspired to eat well and it has also helped my family adapt to more fruits and veggies. We've found decent rice pastas that are GF and it hasn't been an issue cooking for the four of us. It does take some effort to adapt, but the payoff has been huge! Good luck!
Hi I am AIH/PBC overlap. It's all quite interesting what you all are saying about gluten free. I have the problem that things get stuck, or at least feel stuck. Some days I cannot eat and turn to juicing so I can at least get some vitamins in me.
I have just had a bad week where I could not eat for 4 days...so yesterday I switched to vegetarian. I have tried gluten free, but like someone said GF products are expensive and if on a budget impossible.
Perhaps some trials would be an idea to see if GF, vegetarian, vegan diets do actually help our condition...if gluten free helps us, then we should be allowed equal access to GF bread, pasta etc on prescription.
I personally would do anything to help and would willingly go on a trial to test this kind of nutritional therapy out because at the end of the day we especially are eating for our life. In fact I am looking at doing a nutritional therapy course to specialize in our conditions.
I appreciate and support your thoughts about trials for specific diets to support to our condition and will mention it to my doctor when I see hiim. He has clearly seen results from the way my skin and outward appearance has changed to seeing the improvement in labs. We're in a large city and he's in a large practice, so I wonder if he has any connections toward conducting trials/case studies.
Regarding the food sticking, my Gastro contemplated an endoscopy, but after putting me on Omeprazole, my food is getting through. I am thinking about juicing, as I simply cannot eat enough veggies to get all the vitamins I need. My stomach tends to fill quickly and empty slowly no matter what I eat.
Hi i have AIH/PBC overlap too. I was diagnosed AIH then prescribed corticosteriods, then later azathioprine which made me feel ill and I asked for a second opinion. They did more bloods tests then came up with the overlap, then decided to take me off azathioprine and the steroids. Prescribed urso and my bloods tests got better.
My consultant decided to treat just the pbc as I was responding well to the treatment. I have no idea about the biopsy as it only stated what damage had occurred. I guess they know what all that means.
My IGM was elevated and he said that was a marker for me in pbc. I'm confused about AMA as one hospital said it was negative the other hospital said it was positive. I'm quite interested in your results and will try to find my biopsy results. xx
I was diagnosed with PBC in 2008, however one of my consultants in 2009 thought it might not be PBC, although my blood tests, indicated otherwise. Recently, after seeing yet another consultant, she now believes it to be PBC/AIH overlap, again indicated by blood tests. I am not allowed a biopsy as there is a danger I could bleed out, so, rightly they will not take the risk. I just want to stress, before I continue, I am not a medical professional. I was prescribed urso in 2008, but could not cope with it, I was then informed at my last consultation that urso does not work if you have AIH. As I said, that is what my consultant informed me. I am currently on a course of prednisolone for two weeks with a blood test after the first week to see if it is bringing my blood levels down, so it is just a case (with me) of trial and error !
It's interesting that you say a consultant informed you that "urso does not work if you have AIH". I was dx in Aug. '07 with AIH/PBC overlap and have been on Urso ever since. The first of this year I went off the Urso for 3 months and my LFTs jumped! ALP went from 225 to 648 and the AST and ALT also jumped! Not sure that I would go with the Dr. that told you it doesn't work.
From the day I was diagnosed, I have never been given numbers, neither has AST, ALT or AMA been discussed, I just get told the liver function tests are high. As I said, I can only go by what my consultant tells me regarding the Urso, I have never been able to take it, so that made sense to me. I also read the following - " Overlap syndrome may represent an important and unrecognized cause of resistance to UDCA in patients with PBC." that is from this on the internet - "ncbi.nlm.nih.gov/pubmed/969....
Where I live, I am limited to medical help as such. I live 15 miles from John O Groats in the far north of Scotland, which means a nine hour round trip by train, which does not include actually seeing the consultant, so it is just not that easy to change consultants. I just have to get on with it !
The thing to remind oneself of (telling myself this a lot these days!!) is that nothing really happens very quickly with chronic liver disease, ESP if - as you are doing well on GF diet - you are removing the toxins from diet and hence your body. So waiting 3 months sounds quite a good idea. And you may find prednisolone (which I regard as the devil's spawn - I seem to have every side effect in the book, though less so now on only 20mgs per day, but I HATE it) does give you unwanted effects when you are feeling so well just now on GF diet..
I think too a lot of diagnosis in AI disease generally involves ruling things in and ruling things out, and looking for certain markers. And of course 5-10% of people with PBC are AMA neg, as am I. Though I see you are AMA pos, which is often one of the markers that deffo points to PBC. But I suppose everyone is just slightly unique. This lack of 'clearcuttedness' is partly why it takes so bloody long to identify certain diseases (and of course nothing to do, says I cynically, with the fact the majority of sufferers - of AI conditions in general - are young to middle aged women. And the majority of docs in hospital practice are men??? That's a whole other thread really).
Another point is that there are relatively few of us with the overlap syndromes, and not much good-quality research, so the specialists aren't hugely experienced in treating these conditions, and there maybe isn't a one size fits all approach. Some days I don't find this a terribly reassuring thought :-).
I'm curious about the 'no urso if you have AIH' idea. I have clinic on Tues, though the doc doesn't really answer any of my direct questions with direct answers so we'll see what he says .... I'm not on urso ( I was about a decade ago for a time - first biopsy pointed to a dx of PSC). Currently on pred with a view to starting azathioprine and I hope getting steroid down, next week I hope. My bloods haven't responded brilliantly to steroids - GGT and AP creeping upwards; ALT and AST going down though which is good.
After my most recent biopsy - earlier this year - I was dx with AI cholangiopathy, which I think is PBC/AIH overlap without the AMA ??? something like that anyway.
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Got to wait till a week on Monday now for results.
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