Hello, just looking for some advice please.

[Bellerin]

Hello, still new to this forum, so please bear with me!

I have been having abnormal liver bloods for about 3 years now, and nobody really took a lot of notice of them. I am anorexic & have been for about 15 years, so my old GP just put it down to that.

I then started putting on weight rapidly about 2 years ago and everything was re-investigated. I was found to have an underactive thyroid due to a bout of glandular fever. Then I was found (after an endoscopy without sedation - NEVER again!!) to have coeliac disease, and in the words of my consultant - 'I've never seen anyone more coeliac than you!' and also was later diagnosed with an allergy to milk as well.

So then we come to my liver, I accidently took an overdose of paracetamol when I was first anorexic, and due to the fact I was less than 4.5 stone, it badly affected my liver. At first they weren't sure I would make it, or if I would need a transplant. In the end it was under monitoring, and had bad scarring, so since then I have had regular monthly liver bloods.

As I said, about 3 years ago, they really started to become abnormal, and when I got a new GP last November, she sent me to the Liver consultant to find out what was going on. I had a liver fibro scan - which showed very bad scarring, and I was sent to have a liver biopsy. Which I told you lovely people on her about and was totally re-assured, had sedation and it went well. Hurt afterward, but wasn't half as bad as I was worrying about!

Then I got my biopsy results and was told it was 3/4 scarred, and they weren't sure why, so were going to seek another opinion from a specialist in Birmingham, but in the meantime I was to have an abdominal ultrasound and a liver one.

The ultra sound came back with the liver badly scarred (I'm starting to see a pattern here) and my spleen enlarged. Great. So then had to have another endoscopy (WITH sedation) and just got the results from them.

So here goes, I am looking for somebody to make sense of this results (I do have a follow up appointment with my Liver consultant in June), I am going to try to paraphrase the letter I was sent -

The professor in Birmingham felt the predominant changes in the biopsy were a vascular problem. He wondered whether there could be a portal venous insufficiency occurring as a complication of Coeliac disease. He felt some features support a low-grade chronic biliary disease, though the typical features of PBC weren't present, it was more common in a person with Coeliac disease. The features on the biopsy would therefor support a diagnosis of non-cirrhotic portal hypertension.

The rest of the letter basically says that they aren't sure what they are going to pursue yet, and are going to have another meeting with some other specialists before I see him in clinic.

So really what I am looking for is just some info, I have googled things, but really I just got this letter in the post yesterday and I am pretty scared. I'm not sure whether to push to try & get seen early as I have not stop stressing about it since the endoscopy. I have never drink any alcohol in my life & I have not eaten gluten for many years, since suffering from anorexia.

Thank you anyone that can I help, I am very grateful. Hope everyone has had a lovely weekend.

[LAJ123]

Hello Bellerin,

Seems like you've had quite a difficult journey health wise. I'm sorry it's been so hard for you lately. I've just read your previous posts, I know its been far from easy for you.

I know you're looking for answers and need reassurance.

Here we can give you support and reassurance as fellow travellers and those who care for those with liver disease in its various manifestations.

However, we cannot easily authoritatively advise you on diagnosis and interpretation of results. Between us we have a vast amount of experience and knowledge of our own illness, but its impossible to comment on your complicated and exclusive to you, medical history. That has to come from your medical and nursing advisors / professionals.

I'm hoping that your June appointment is in the early part of the month so you don't have too much time to get worried.

What I suggest you do is look at the British Liver Trust website and read the relevant information leaflets. For personal support you can call the British Liver Trust help-line. I've put the links below.

Take care and make full use of our liver community / fellowship.

Jim and Lucy

[LAJ123]

britishlivertrust.org.uk/pu...

britishlivertrust.org.uk/fi...

[e-mail]

[Bellerin in reply to LAJ123]

Thank you, sorry if my post was wrong, I wasn't sure what I was supposed to write on here! I will have a look at the websites you suggested, I guess I was just wondering if anyone had been suffering with the same thing, and I don't think I made that clear, I will edit my post later.

Thanks again

[LAJ123 in reply to Bellerin]

Bulletin,

Don't worry. You have done nothing wrong. You wrote asking for support and I hope that's what I gave you. Trust me I've been in your position and know what it's like.

I just wanted you to understand how we are limited to how we are able to support each other.

We cannot advise on things we are not qualified to help.

Don't be put off coming here for support and encouragement.

Take care,

Jim

[RodeoJoe]

Very interesting. I was diagnosed with cirrhosis when I was 27. Had all the tests and ended up getting the label cryptogenic cirrhosis (or cause unknown). Had the routine biopsies, enoscopies and ultra sounds un remained fairly stable (as far as I'm aware) until I was 42. However when I was about 35(ish) I was also randomly tested for coeliac disease which came up positive. Changing my diet did improve my quality of life as I had been feeling what as I can only explain as flu like for years before. Also when I had my endoscopy to diagnose CD I remember the Dr commenting that although a biopsy was taken it was absolutely clear that I had CD.

At 42 I ended up having a transplant. Here is the exact description of what they found, most of it is well above my head:

Liver, hepatectomy: Bilary-type cirrhosis, with areas of severe segment atrophy and hypertrophy. Mild portal inflammation, marked ductular reaction and small bile duct loss. Moderate bilirrubinostasis (hepatocanalicular and cholangiolar). Moderate heptocellular siderosis. Copper-binding protien deposition in periportal hepatocytes.

Fibrosis of gall bladder wall.

Clinical Information:

The changes point towards a long standing cholangiopathy. MDR3 disease should be considered.

I later had the test for cholangiopathy which came back negative.

[Bellerin in reply to RodeoJoe]

Thank you. Very interesting also, it does all seem a lot more complicated that I had first thought!