My story

[Marishoo]

I was told when I was diagnosed with pbc that an under active thyroid would follow which it has 5 years in , after 10 years and no symptoms of pbc, my bone scan shows I'm on the way to develop osteoporosis, which I'm now on meds for , I've been putting on weight and now I've put myself on a wheat and glucose diet and feel really well

[Hidden]

Hello Marishoo.

Good to read that you seem to be doing really well.

I've never been informed that I would develop anything else with having PBC except that with certain vitamin and/or mineral intake it might be that bit more difficult to absorb with having PBC so I've had checks for certain ones since diagnosis Dec 2010 when I was 46. (I am now 51.)

It is said that we can be prone to osteoporosis if we have PBC but I think also being female and going through the menopause (I am currently, mine started over 2yrs ago now) that is another reason we can do so. It is said females who smoke long-term can be more prone to developing osteoporosis than those who don't. My mother-in-law was informed she had osteoporosis several years ago now, put down to smoking.

I have a few creaks with odd joints but I put it down to being in manual jobs over my adult life.

I have used a bit of a gluten-free diet for a whort while as my 20+yr old son developed a bowel problem back in 2009 and he was checked at hospital and it was put down to over-use of antibiotics at the time so he was asked to leave out wheat in particular for awhile. I started buying gluten-free flour to bake with and we had more rice at the time. He slowly re-introduced wheat and he's been fine. I can't say that for me going gluten-free helped really but I think that is more than likely due to the fact that I've not got a wheat or glutnen-intolerance. I don't overly-eat products like bread nor biscuits for eg and try to make all my meals with ingredients I know are not tamperred with or had artificial additives nor MSG or sweeteners added.

When out and about walking I tend to reach for a bottle of milk as opposed to fruit juice or even water, had done this for the last few years, long before I found out notso long ago that our of fruit juice, water and milk, milk after exercise (my case walking or doing a bit of cliff climbing on holiday) is more rehydrating than water or juice. Expect too I am covering the calcium in my diet.

[GrittyReads]

I would consider seeing a really top-notch nutritionist (beware of quacks). It doesn't have to be private. It may be that the PBC Foundation can advise (link to their website at the top of this page, with email address and phone no for their advisors).

You might also consider looking on the 'Thyroid' site here on 'Health Unlocked' as they seem to be really hot on all vits and minerals, and I seem to recall they have lists of Nutritionists around the country (it's a while since I've been on there, so could have changed).

PBC sufferers are at risk of vit and mineral imbalances, as it can be harder to absorb the necessary nutrients, especially the fat soluble vits. However, all these substances exist in a complex feedback process, so jumping in with just any supplements can sometimes make things worse - that's why I suggest getting advice.

Do you mean wheat- and glucose-free ?

[Marishoo in reply to GrittyReads]

Wheat and gluten free I mean lol

I am young to have pre osteoporosis , I'm 57 and through the menopause ,this is due to pbc,I've never smoked , always exercised and went on skimmed milk 20 years ago , I have a folder from the pbc about living with pbc I've had it for years and is full of lots of info , especially now for my diet .

[liver-bird]

Hi marishoo

I was diagnosed with under active thyroid about 10 years ago, next came osteoporosis 8 years ago found when I broke my ankle, and then my pbc was found last year. Of course it may be that the pbc was there all along contributing to the other conditions but undiagnosed.

I have also put on a lot of weight which I blamed on the under active thyroid but I think the struggling liver is also causing weight problems.

An unpleasant little cocktail but I try and pace myself and manage to live quite well most of the time. Glad to hear you are so well. May try a diet myself. All the best.

[Marishoo]

Thank you liver bird

You sound similar to me

And that's nice to hear

[posh]

Hi Marishoo, great to hear you refer to the compendium from The PBC Foundation as it has a lot of useful information. But yes, as Grittyreads suggests, possibly a phone call or email to the helpline for the Foundation would help you find the information you are looking for.

Best wishes

Posh