Newly diagnosed

[Joanneconnor]

I’m 46 I have hashimotos and gluten intolerance already, now Antibodies (which I’ve asked for numerous times) come back I now have PBC I have had symptoms of gall bladder problems had numerous scans and endoscopy, I’ve had major gall bladder attacks and ended up in the ambulance on morphine in the last 5-6 years, 2 years ago I developed the dark skin in my face I have night sweats and hot flushes put weight on so I presumed I was in perimenopause. I now have pains in liver area a lot of bloating, hair falling out, nausea and loss of appetite, tingling and numbness for the last 2 years in hands. Would I get these symptoms if I was in stage 1,2 or 3

[Joanneconnor]

Dry mouth and dark urine too

[iagra]

Often PBC symptoms don't mean that you have a higher stage or even any stage of liver cirrhosis. I read a lot of comments like this on the forum. You should have a liver biopsy done, to determine what stage you are in. Usually, the liver biopsy is done at the time of initial diagnosis, one time only, to establish the baseline. After that, you'll monitor annually, with the wave ultrasound and blood work.

Best of luck to you!

[Joanneconnor in reply to iagra]

Ohhh ok thanks, I got diagnosed by my Endocrinologist and I am just waiting for the referral but I don’t what type of specialist it is even, my Endo dropped the bomb shell and never said anything else 😩

[mrspeffer]

Wow...lots going on for you. The symptoms you are referring to do sound like they are part of your other issues. Personally, I would be insisting on seeing a Hepatologist or at least a Gastro doctor. I have an Endo who likes to over step her professional boundaries and manage my other issues...I always thank her, then go to the specialist for that specific concern. Yes, it does sound like pre-menopausal systems, but also that your thyroid meds could need adjusting. Please ask for a fibroscan or a biopsy if you really want to know the answer. I'm assuming your LFT's are abnormal along with your AMA tests. Seems rather bold for someone to "drop the bomb", and then leave you hanging. Please stay close to us here and let us know what happens next. If you do have PBC, it's not a death sentence. I've also heard that once you develop one auto-immune problem, there may be more lurking around. Might be time to look at nutrition as a way to lessen your symptoms too.

[Joanneconnor in reply to mrspeffer]

I have 3 auto immune diseases now. Hashimoto, gluten high antibodies and pbc

I have started strict paleo diet no gluten, yeast, cows milk or tap water which are when I get flare ups

[mrspeffer in reply to Joanneconnor]

Check out JJ Virgin. She is a nutritionalist who speaks of anti inflamitory foods. Paleo usually includes meats,poultry, fish. Could that be too much for you?

[Joanneconnor in reply to mrspeffer]

Auto immune paleo I have to do

[mrspeffer in reply to Joanneconnor]

Oh, I get that. I have to also, but without the animal protein. I do use a raw goat brick cheese, but any other doesn't work well for me

[Joanneconnor in reply to mrspeffer]

I did the illumination diet but I get stomach ache from cows milk, but seem to be ok with cream and cheese not sure why?

[Joanneconnor in reply to Joanneconnor]

So at the moment I’m sticking strict to no gluten and just eating meat and veg but I’ve not bought organic for a while

[mrspeffer in reply to Joanneconnor]

Lucky you. Cow milk is not good for me. Too bad cuz I love half and half

[Joanneconnor in reply to mrspeffer]

Not sure if I should be eating cream and cheese though 😩 missing bread/ toast terribly not been able to eat it for about a year as I’m intolerant to yeast too😢

[mrspeffer in reply to Joanneconnor]

I make an almond butter bread that is wonderful and very Paleo. I'm happy to send you recipes if you'd like to try making it. Yummy toasted too.

[Joanneconnor in reply to mrspeffer]

Ohhh yes that sounds lovely, yes please 🙂

[mrspeffer in reply to Joanneconnor]

If you send me your email through the private message area, i will be happy to attach some other recipes as well.

[Mary48]

Have endoscopies every other year and don’t find them too problematic. I do have sedation though and the only drawback is I can’t eat for a few hours before procedure. To me it’s good to have reassurance that nothing untoward is happening. It’s a routine test and I treat it as such.

[Jowen]

Hi, your symptoms sound just like mine when I got sick, my joints hurt badly too. Now, five years one I'm still not well but a lot better. Have PBC with suspected AIH features. Was on prednisone but now I take urso and vit D, still tired and far from well but healthy enough to work and spend time with my children. I rest a lot, have gained weight that is hard to get off (low energy levels make eating well and exercising difficult) but all in all - I'm ok.

Hopefully you'll soon get better too!

J

[Jowen]

Side note: I was not pre-menopausal! For me it was all to do with the liver...

J

[PBCRobert Partner]

Hi, Joanne.

Thank you for your post and welcome.

I wanted to welcome you and to encourage you to join the PBC Foundation where you can get peer reviewed information, support, etc all for free.

I want to say one thing in relation to a reply by iagra stating "you should have a liver biopsy done..." I cannot tell you to ignore this advice, but I can tell you that "Should" is not a particularly helpful word. Each person with PBC is going on their own journey and what is right for someone else may not be the right thing for you.

There is often a chasm between best practice in PBC and current practice in the US (feel free to check EASL guidelines on managing PBC, don't just take my word for it). US clinicians (and some patients) can be a little over-keen on biopsy when guidelines tell us there are better or more accurate technologies we can use that have less inherent risk. Technologies such as Fibroscan, etc can also stage the cell change within your liver (histology).

Also, please understand that "staging" is specifically about your histology and not about staging your PBC. PBC doesn't have "stages" as such, and the three parts (symptoms, liver biochemistry and histology) all need to be monitored in order to give you the full picture. It is important to know that symptoms (associated with PBC, not all your symptoms) do not indicate abnormal bloods (liver biochemistry) or, indeed, histological progression (damage to cells in the liver). So, somebody can be symptomatic yet still be very early in their disease journey.

PBC today is a very different proposition today than it was even just a couple of years ago: it is better understood, better diagnosed and better treated. The key to this is informed, engaged patients who know how to look after their own condition. We hope to help you in that journey.

Most people with PBC live to normal life expectancy.

Let us know if we can help...

Robert.

[gwillistexas in reply to PBCRobert]

G’morning. Sorry to hijack this post but I’m confused. I’ll make it short as possible. My GI orders fibroscan vs biopsy & im scheduled for my second scan Monday. GI said first scan, early stage 2 fibrosis. His NP gave me a copy of fibroscan & said liver is fine with no scarring but mild in ducts. I even wrote that on my scan copy in front of her so I wouldn’t worry. I attended a Support Group held by his NP last month. She said fibroscan only measures liver stiffness & if I want true staging I would need biopsy. She contradicted herself. I understand the purpose of fibroscan. I get all that. Things like this confuse the pbc population. 🦋

[Joanneconnor]

I’m starting to think your right Jowen about my perimenopause symptoms being PBC. Hi Robert I don’t have a clue what you mean all this terminology like biochemistry and histology? Please help I have antibodies tests done and he just said I have it, nothing has ever showed up on any LFTs

[ninjagirlwebb in reply to Joanneconnor]

What Robert is referring to: biochemistry pertains to the blood work or lab results (antibodies, LFT’s); histology is the actual cell structure of the liver which is what a biopsy looks at. The biopsy takes samples of your liver from various sites & are examined under a microscope by a pathologist who specialises in diagnosing.

[Joanneconnor]

Antinuclear 1:400 positive

Mitochondrial antibody positive

M2 antibody positive

tTg Iga antibody 17 (0-4)

Anti Gad antibody Negative

IA2 antibody <10 (0–10)

Islet cell antibody Negative

[Joanneconnor]

Anyone know if I can lower my antibodies by eating non inflammatory foods if you can maybe have an odd reactive item every now and again and the rest of the time be good? Or will they forever be off the menu?