PBC Foundation
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Went to see a dietician a couple a weeks ago concerning my bloating, pain etc. She was very helpful although I have been on a wheat and gluten free diet for about 18months which has helped I'm know on a lactose diet. The whole thing is called FODMAP diet. The letters stand for Fermentable Oligo-saccharides Di-saccharides Mono-saccharides And Polyols.

Hard to get the head round I know. There are certain foods and drink that have the above in them that can course or irritate the bowel which courses bloating constipation diarrhoea etc.

Its very difficult to know what to eat or not have a book with it all in so far not to bad although I'm still learning. Its just getting use to it. I will update you when I'm a little more use to it all.

Anyone else tried this Fodmap diet and how did you manage it.

So in the mean time chin up and keep smiling although when the pain hits its hard too but we will.

2 Replies

Hello Jude1.

Well when I went for my first hospital appt at Hepatology back in later 2010 just prior to being diagnosed with PBC I did ask the consultant before I was left whether there was anything I should avoid eating. He said just to continue as I was doing normally, sounded like I was doing quite well as it was with regards to diet. (That day I had antibodies bloods, returned to the hospital 3 months later after my GP gave me the hospital's results and had started on urso.)

I have had a short period of having gluten-free foods due to my son's what seemed temporary bowel problem (he was advised to avoid wheat for awhile a few years ago). Can't say it made much of a difference at all for me.

Never heard of this FODMAP diet but one thing that I can think of is that I feel that by changing to a certain type of diet coiuld perhaps have a bit of an effect on our deigestive system whilst the body tries to adjust and for myself I've been very cautious since being diagnosed regarding any what could be drastic changes in my way of eating.

Be interested to know how you get on.


Hello Jude,

After I was dx with PBC, I started to get A lot of digestive problems my gastro did all the tests including endoscopy and biopsy for celiac all clear so the dx was IBS.

She gave me a copy of the FODMAP diet to try. This is an elimination diet for groups of foods, that can be a cause I did this diet eliminating all grains first then slowly reintroduced them to try and identify what food was causing the problem, to be honest it still seemed to be wheat despite the negative result fo celiac.

I never got around to eliminating the other food groups , I got very despondent and gave up as it seemed to take so long . Last year I tried again but being impatient i paid for a food tolerance test which came back with milk and mildly wheat. But the gluten part of the wheat was not the problem , so I not had wheat for a while now and things are much better with only a flare up now and again.

I must say the elimination of milk ( or dairy) seemed to hard but for the last two weeks I,ve switched to lactose free products to see if that makes a difference in how I feel , not noticed any difference yet , but I only seem to get flare ups now so it's hard to know if it is helping.

Hope all goes well for you let us know how it goes.


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