help with foods please

[Sophia1968]

sorry to you all for popping up for the third time in one day, I am not the best cook and have no idea about nutrients etc, I have spent hours looking it all up , im still lost….. I was eating healthy and had gone from full cream milk down to skimmed milk (is it right I need full cream again now, and also real butter?) I had just trained myself at looking at saturated fat with 1.5 and under per 100g do I ignore that now and just look at sugar and salt and do I still look for under 1.5, I’m struggling to know what to buy or what to look for on the traffic lights, is all fresh fish ok but do I limit it to twice per week, is tinned salmon ok as I don’t like fresh, are all fruits ok? I’m really confused because it’s saying eat tea cakes with jam before bed but I can’t eat wheat, cos of my allergy and I have to be careful with carbs cos of my diebetes and I’m assuming I need lots of protein now but how much? I have no follow up as yet about my scan yesterday , my doctor won’t have a clue or the time, I have eaten nothing today which is wrong I kvow , also are low fat yogurts ok as long as low in sugar ? I’m still wanting to lose weight so don’t want to have the full cream milk and butter again but I’m just so lost, even looking on here it’s difficult, if someone gave me one breakfast, one lunch and one dinner that was ok I will eat it every day until I learn, would oat so simple be a good breakfast? I’m so sorry to bombard you all I really am but thank you in advance xx 🤦‍♀️🤦‍♀️🤦‍♀️

[AyrshireK]

Hi Sophia, the high carb, high protein diet which many with advanced cirrhosis need may not be applicable in your case having NAFLD related liver disease. Keep eating a healthy balanced diet just now and at your first consultation ask about referral to a liver specialist dietician who should give you a thorough 'work up' and advise what is needed for your specific and very individual circumstances and needs.

In my hubbies case he was skeletal and deemed malnourished with muscle wastage and his dietary needs are very different than yours.

Ask to see a dietician at your first appointment and get the necessary advice from them, in the interim keep just eating healthily - keeping a food diary can be handy for the dietician to see where you might be deficient and need more of or indeed what to reduce. It's a very individual need and needs a tailor made approach.

Katie

[Sophia1968 in reply to AyrshireK]

aww ok Katie thank you, I will just carry on until they say otherwise, thank you for making that more understandable, I just hope I won’t have to wait too long, cos I do hate all this unsettled feeling, it makes you feel trapped unable to move forward , I didn’t realise Pepsi max was so bad , would you say a definite no no to not ever drink that again , just one last question does it matter how long I may have had cirrohis or is it only important how I feel and that bloods stay good , I don’t suppose with a kpa of 21.5 there is even a tiny chance that the hep dr will look and say it’s not cirrohisis ( I kvow the answer and don’t even know why I asked you ) anyway thank you, I will carry on as I am for now xx

[AyrshireK in reply to Sophia1968]

An occasionally fizzy drink is ok but not something you probably want to drink lots of - sweeteners in many cases aren't great for the liver. My hubby still enjoys a glass of cola every now and again. Moderation!!!

Are your bloods still good? If for example you still had big elevations of inflammation markers that kPa figure could also be on the false high side.

If you arn't too symptomatic you can still make massive changes and improvements - loads of people on here have had full on decompensated cirrhosis, been at deaths door even but have bounced back to compensated and are doing well in the grand scheme of things. As i've said earlier it's about living your best life even with the condition and doing all you can to prevent worsening and possibly even reverse some of the damage done.

Don't give in to it ........... you kicked cancer in the butt, you can live with a bit of shrivelled liver. Loads of folks will be rooting for you.

In 10 days time it will be the 11th anniversary of me rushing my then fiance to hospital A&E after he threw up blood in the night - before then we had NO IDEA he had any sort of liver disease, he was life long t-total, fit and active, worked hard, was a long distance walker. A three week stay in hospital later and after a few days touch and go in High Dependency it turned out he had cirrhosis due to auto immune liver disease. He ended up being assessed and listed for transplant in 2014 but delisted 10 months later because his health had stabilized (after he lost his spleen). We are now 8 years down the line from delisting - he's subsequently climbed the highest top in SW Scotland plus numerous other peaks up here and in Yorkshire, took up cycling after lockdown and last year did 1000 miles on his e-mtb and over 600 on his manual bike. Yes he feels cr*p a lot of the time, has (I feel) worsening HE symptoms but he still pushes himself. He doesn't dwell on the cirrhosis - I do all the medical stuff and he just runs things past me from time to time and we quietly keep an eye on things but don't allow it to totally dominate our lives.

Best wishes & btw no question is a silly one so always ask away PLUS to be ready for your appointment start keeping a notebook specifically for your appointments - before you go to clinic jot down any medication and doses you are on (doctors have always asked us for this), any symptoms you've been experiencing and most importantly ALL questions you want to ask at the appointment. Take a pen and possibly a friend or loved one who can sit in as support and a 2nd pair of ears and that way you can digest (together) what the med-speak was all about. I also jot down any dates of scans, blood tests, vaccinations etc. in this same book so that I have all the information to hand if asked for it.

You'll get there, just don't let it beat you.

Katie xx

[Sophia1968 in reply to AyrshireK]

the weird thing is Katie, my bloods are normally ok although I have noticed the platelets have gone down by 20 , alt has been known to hit 77 a few times then came down but never higher billidubin never higher than 8 I did have high crp and esr inflammation markers . They were 14 crp and 37 esr xx

[Sophia1968]

hi Katie, my last lot of bloods were done in November , they were ok then

Alt 15

Ast 23 ( that’s not good is it cos it’s higher than alt)

Bilirubin 7

Alp 65

Platelets 268

So I guess there is not enough inflammation to have caused a false read 😥 …. Thank you for your detailed reply which I really appreciate, I don’t really have sypmtoms although in hindsight I’m wondering now about the red blood dots on skin, the broken skin scratch type things and nausea, but none of the obvious pale stool etc although I do sometimes have blood on it, sorry for tmi … I’m glad your hubby is still doing ok, I love hearing his story xx

[Kristian]

Hi Sophia,

Just looking through your posts, have you had a formal diagnosis of cirrhosis yet? I know you've had a fibroscan, but has any of your medical team actually confirmed you have cirrhosis?

Taking that aside. From the results you've posted your liver actually looks to be coping pretty well, even with cirrhosis. So at this time, stick to eating what you'd normally eat and only change if someone medically qualified advises you to do so.

If you have fatty liver and are over weight then if course its sensible to start losing a few pounds. But that's best done with only moderate changes and by adding some exercise in to your day. Simple things like going for a walk is all helpful. You dont have to go out like your training for the London marathon, lol. As long as you are then eating sensibly for your own particular circumstances you should lose some weight.

The key thing really is not to over complicate it and not to over think it. Its just not necessary. A bit of will power and a bit of common sense will give you all you need.

If you have a follow up booked, then use that as an opportunity to discuss what is the best approach for you. If you dont then do speak to your gp, who can either advise or refer you to an appropriate source of guidance.

Good luck.

[Sophia1968 in reply to Kristian]

oh bless you Kristian what a lovely post, I am overweight with a high bmi and have lost nearly three stone since feb 2022, I was told I had fatty liver before losing the two stone , had another ultra sound and was told it had increased , I could not understand how, although I prob was not cutting out all the bad stuff just lowering it, I think the two stone came off because I was diagnosed with wdeia and stopped eating all bread , pasties and carbs, I then was suddenly told by another dr that my scan actually showed severe fatty liver, this was when the ball started rolling for the fibro scan etc, I had also adjusted my diet and understood a bit more what the 1.5 sat fats meant so my shopping became a lot healthier, I have lost almost a stone in just over a month so I am finally after all these years getting that part on track, I just feel sad that it’s too little too late, In my head I think the one time I can actually enjoy life I have this problem , it’s a viscous circle with me if my health is bad, I get depressed , I eat bad or not at all, then I worry I have made it worse, im really trying not to do that this time, I’m definitely not over eating but if anything I’m not eating enough so I will adjust that, as for exercise I still need to up that, I do not do enough at all, im going to dig out my exercise bike and try to aim for twenty mins a day , also I may start doing the abba dance on wii fit as that was always fun, as for my diagnosis I have not seen the consltant yet, only the lovely man who did my scan, I saw my result on the screen and panicked I said ong 21.5 is cirrohsis , he was amazed I understood the numbers, he said yes it shows cirrohis , I assumed that number would be cut and dry, maybe 15kpa could be on the borderline, but surely is that number alone not proof, I would be over the moon if the consultant said otherwise and if there was any chance at all he could then I would literally never abuse my body again, I have no appt arranged yet but the tech said he will email him with the results , thanks again for your message my lovely, you made me feel a little better today also I prob have another four stone to lose , I don’t understand why my dr said cirrohsis would show on ultra sound she said it would be small and shrivelled, this is why I was shocked to see my kpa was so high xx

[Kristian in reply to Sophia1968]

Yeah, the picture gets clearer the more info you have. Before jumping to conclusions with a diagnosis it is better to wait for your consultants interpretation of all your test results rather than relying on 1 in isolation. I'm not an expert, but I understand that a few things can give a falsely high reading so just bear that in mind with your results.

Fibroscan is pretty good at detecting fibrosis whereas an ultrasound can quite easily pick up cirrhosis. In cirrhosis the liver doesn't have to be small and shrivelled. In the early stages it may normal or slightly larger in size. However, the tell tale sign of cirrhosis on ultrasound is a sort of nobbily surface texture that the ultrasound can easily pick up. If the surface texture is smooth then it's unlikely that cirrhosis has yet set in.

Now either way, with fatty liver you can slow down or stop further damage. So even if you do end up with cirrhosis. There's lots you can about it to vastly reduce the risk of further progression. So it doesn't have to be doom and gloom.

[Tizzwas]

Hi lovely

I'd probably keep doing what you're doing for now, you seem sensible and as someone else has said it doesn't seem like you're at the stage some of us are in terms of high carb, high protein requirements (it blew my MIND as I always did low carb!!). Worth asking for a dietitian of they've said NAFLD as it's good to get a professionals advice.

Exercise wise, do it!! I'm a massive advocate for it. Nothing stupid but I do yoga or pilates most days and one cardio class a week..I probably could do more but I enjoy things as they are and I don't want to end up resenting it (I hate the gym)

Hope this helps a bit xx

[Sophia1968 in reply to Tizzwas]

Thank you hun , I’m so glad I asked on here cos I was so confused, I was ready to bring back all the stuff that I had just learnt to get rid of , hopefully they will put me in touch with someone soon, I wish I had seen someone straight away, I hate going away in tears with a piece of paper showing high kpa and no one to actually talk to , I guess this is where I need to learn patience , thanks for your message, it was really helpful my lovely xx

[Tizzwas in reply to Sophia1968]

There's an element of patience involved but also you have to be pushy, so if they've not referred you yet then ask them to. Also push for an appointment for your scan results. You can ask anything here, there are no daft questions xx