PBC is considerably more common in those with gluten sensitive enteropathy than the normal population

[Tracylouise]

I came across this statement on the internet and wondered why this is not researched more. Quite a few PBCers are eliminating out gluten/wheat and finding they feel much better. Is this something that the PBC Foundation could look into please?

[Hidden]

Hello Traceylouise.

Never seen anything like this, interesting but I somehow am sceptical about this statement.

I have tried going gluten-free as in wheat and other glutenous products but can't say it made that much difference nor to the bloods on repeats.

Though I would like to know how PBC is somehow set off in our body I also a bit wary in case it ever comes to light that it could have been my doing though I can't think how.

[Tracylouise in reply to Hidden]

Hi peridot, Thanks you for your reply. I have looked back on my life to see what could have brought PBC to light I have no idea either. I gave up wheat and my stomach shrunk in size. I still eat carbohydrates with no problems. My LFTs are the same too. I don't think its related to PBC, maybe the liver cannot digest gluten/wheat properly. It would be nice to know either way.

[Hidden in reply to Tracylouise]

Was thinking a bit further yesterday about this gluten/wheat that you posted here and it came about as one of my brother's old friends was diagnosed as a coeliac 15yrs ago and his is down to the bowel area. He sometimes strays back to something with gluten and gets inflammation. I somehow don't think that gluten/wheat has anything to do with it regarding PBC.

I have got it into my head that it's perhaps vaccine-related. I had the hepatitis vaccines due to the work environment I was in about 3yrs prior to starting with the itch in 2010 and I have never stop wondering since if this started 'the ball rolling'. Another theory of mine is that perhaps some minor injury/fall that was never anything really much of a problem has been of some contribution as it is one thing that everyone who develops PBC could have in common. I know in my adult life I have fallen down stairs years ago but just sustained visible bruising and nothing else.

I seem to think that due to PBC being said to be due to antibodies that we now produce that are doing the damage to the bile ducts causing the liver problems then digestive problems probably follow with a compromised digestive system. I do think that it is possibly an environment thing as a more probability but until someone ever finds that link we have to go on wondering and also getting on with our lives the best way we can.

[Denielle86 in reply to Hidden]

I agree that gluten does cause me to feel worse.

But you have to go completely gluten free to see any results. No flour no breads now wheats. Granola even has gluten! It's definitely a change that I am struggling with!

[mattiasw in reply to Denielle86]

Make your own granola using oat flakes, nuts, raisins etc. If you want it sweeter, sprinkle honey over. Roast in oven. Completely gluten free and cheap.

[GrittyReads]

Hi Tracey Louise,

Can you post the link to the article, or at least say roughly where you found it? Obviously the first thing to clear up is whether the ideas come from a reputable source. In a way, it doesn't matter too much whether a few of our individual experiences fit with the findings or not. If the findings are based on a statistically sound study then they deserve further investigation. So it would be great if you can post a link,

Thanks.

[NotorDJP]

I don't think that it "causes" PBC, but I do know when I eat less heavy starches like breads and pasta and potatoes I do feel better and less bloated. I can lose weight better too. I think you are right about one thing, that it becomes harder to digest certain foods and if you can find stuff that is easier to digest its easier on your poor liver. I agree one hundred percent that stress can cause my liver to become inflamed as most autoiummune diseases are worsened by stress. Case in point, a good friend of mine died Monday of metastized liver cancer. Her funeral was yesterday and the whole day leading up to it my liver ached, even though I really wasn't eating anything to bother it. I think my autoimmune response was triggered when I had Mono when I was in my twenties and this was all put into high gear when I had my gall bladder removed in 2004. I think I had all this for years, sitting dormant and these things, probably the gall bladder more than anything, set it into high gear. I wouldn't be surprised if I have had this thing for nearly 10 years before I was diagnosed.

[Doodlebug1 in reply to NotorDJP]

I just read this post, I too had mono and supposedly twice a a young girl. I have thought back to my health issues over the years feel like I've had PBC for years before diagnosis.

[Lucylongstockings]

I gave up gluten about a year who and I've got to say I feel much better. You ve got to be really strict though you can't play with it and have a day off, and gluten is in so many things. it's not just bread and pasta you re giving up. I don't even have vinegar on my chips now. I don't think it causes pbc but the way I understand it is that if you are sensitive to gluten it's setting another immune response and inflammation up in your body, which releases t lymphocytes etc to deal with the reaction. And that is just one more immune reaction for your body to cope with. I can't make the pbc go away, but I can reduce the immune response stress on my body by giving up gluten. I have more energy, I don't have to constantly run to the loo 3/4 times a day. And I'm less bloated. I'd be interested to read about it specifically related to pbc. I have read something by a nutritionalist I'll try and remember what it was and post a link on here.

[Hidden in reply to Lucylongstockings]

Good to read Luckylongstockungs that you are finding some way of dietary that makes yo feel better with PBC.

Babies were started to be weaned on baby rice back in the 1980s when I had my 2 children. It was apparently due to the rice being easily digested unlike wheat products.

If I can find it though I did post on here approx 2mths ago an article that came up about gluten-free dietary and the fact that there is not many of the population who are actually wholly gluten-intolerant as in being a coeliac.

I know as tests continued to the PBC diagnosis back in 2010 one of the checks before the antibodies (I did find the NHS path route that is followed after an abnormal LFT check and then using any symptons to eliminate other t hings), this was for coeliac sprue which is a blood test. I have no gluten-intolerance so for myself this is where I shed some doubts.

I was born mid-1960's and like a lot of scholl children during the 1970s here in the UK I was raised with white bread, mainly mashed potatoes with meals as well as the classic baked beans in tomato sauce. We did have wholegrain breakfast cereals, wholewheat biscuits and also porridge oats to name two. Certain foods like boiled rice to have with what seem the norm these days, curries as well as pasta weren't really the 'in thing' like they can be now. We also had butter as well as whole milk too.

My diet changed somewhat when I left home. White bread became mainly wholemeal, granary, etc and I often use wholemeal flour as opposed to white. Chips are a rarity and there is more fruit in abundance.

Up until 2010 I never thought I was sick, rarely frequented a doctor and then I started to itch.

I feel a lot of it can be just good old 'pot luck'. I know of friends and friends of friends who have been so health conscious, jogging frequently, watching what they eat, etc and then they have suddenly keeled over with heart problems or even worse, my husband's uncle who used to be a daily jogger succumbed to cancer a couple years ago and he is still struggling to cope with all that.

I personally think a lot of health problems today have always been around but they never had a name nor treatment and I also think that the quality of anything we eat today is not what it was in days gone by. My gran was in her early 30s when the 2nd World War broke out and she encountered the food rationing. She was still around until she reached 83 never really ailing much bodily but it was her mind that succumbed in her final years.

Maybe today it is a case of quantity over quality and that is causing several problem too.

[Tracylouise in reply to Hidden]

Interesting peridot - coeliac and gluten/wheat intolerance is 2 different things, a friend of mine has recently been diagnosed as coeliac because its made her so ill, the only plus she gets out of this that all her gluten free products are free on the NHS, where is some people who cannot tolerate gluten are left to suffer because of the very expensive free from foods. Some people are even eating them because they think it helps them to lose weight, shame really. We need to be educated more about this products.

As for LFTs blood tests, there is no difference for me, but physical symptoms have improved. I no longer have diarrhoea and my stomach sized has reduced immensely due to bloating. I informed my consultant who is a GI and he looked at me blankly and said nothing. I at least thought he would be interested. I have been told many times in the past by my GP that I must diet to lose weight, but I never ate a lot in the first place and ate healthy. Its really frustrating that they thought I ate too much and didn't exercise. Before I cut wheat out I only ever ate wholemeal based food. Well the quality has completely gone from food. Bread is not like it was many years ago. It's rather doughy and not cooked properly - no wonder people with no intolerance are having problems digesting some foods. On a happier note I am very positive with my PBC and get on with normal life

[Hidden in reply to Tracylouise]

Hello. I nver thought about gluten all my life until 2010 when my son who was in his early 20s then developed constant diarrhoea with some blood. He was referred to hospital and had colonoscopy after numerous blood tests turned up negative. He wasn't losing weight nor was he vitamin and mineral deficient as those were checked too.

There appeared nothing wrong with him at all after the procedure and the consultant reckoned that he was suffering a temporary intolerance to wheat gluten which he thought could have developed due to over-use by his GP of antibiotics for a patch of psoriasis he had been suffering that got infected a few times. He was advised to cut out wheat and see what happened. He did improve but gradually introduced again over time. He has said that he doens't seem to have a problem any longer but often doesn't eat bread more than once a day. He said it was hard work attempting to go without wheat and eat wheat-free and gluten-free products due to firstly the costings and secondly the fact that it was more difficult for his lunch at work. I did go through a phase of buying gluten-free flour to cook with but found it limiting as to what you can actually bake with it and gluten-free bread I did buy at times just did not keep at all. My brother has evening meal with my family once a week and he moaned about foods I had prepared made out of gluten-free. He has stated himself that he doubts manyh ave a gluten problem unless they have diagnosed coeliac like one of his old friends has who certainly knows when he has strayed if he eats something that does contain gluten.

I cannot at this moment find the article that I posted on an earlier posting about gluten-free but I have found a similar one from another national newspaper I'd not seen before (as I tend to read the broad sheet newspapers when I read any and it isn't that often these days). I've posted the link for anyone if they are intersted in trawling through it.

mirror.co.uk/lifestyle/diet...

[Tracylouise]

en.wikipedia.org/wiki/Prima...

[Lucylongstockings]

Hi I posted few weeks who on this subject and I said I'd read something on gluten sensitivity and auto immune diseases ....at last I've found it ...if you google the expert practitioner (website ) your looking for coeliac gluten sensitivity in auto immune conditions by niki gratrix Interesting read

[Tracy181]

All of my problems started after I was diagnosed with celiac. Gluten is the devil in my world