Gluten?

[bluetopia86]

Does anyone have any idea if gluten can cause issues with PBC/PSC ? I have been reading a few things about gluten and autoimmune disease. Just wondering if cutting gluten out would help with inflammation and digestion issues? I could also be way off here, just trying to figure some things out.

[Wendy29]

I am of same opinion and in process of changing my diet on the way to excluding gluten amd most sugars too if I can. It's a healthy diet without gluten anyway - can't hurt trying!

[Junolee]

I was told by all those I've seen so far not to cut anything unless you are diagnosed with some particular intolerance / disease. They say definitely not to cut gluten if you are not Coeliac. Have you been tested? They test me for Coeliav disease regularly but never comes by positive. I don't have digestive problems but it's linked and I've low iron so it's always a culprit. I understand that if you are suffering you'd try anything but sometimes cutting things out makes it difficult to spot other things later.

[Hidden in reply to Junolee]

Yes this is what I agree with Junolee.

Like yourself I do not have digestive problems and was raised with gluten-containing products (I was born in the mid-1960s). So I continue with my diet that I think is pretty healthy with the odd treat thrown in (ie home-made rice pudding for after-tea dessert).

My brother's old school pal was diagnosed a Coeliac over a decade ago now and talking to him several years ago he just goes for foods when eating out that he knows does not contain gluten but he doesn't go out and purposely buy products that are deemed 'gluten-free' he says. Says it is too expensive. He seems to have faired well but the odd times he does fancy some bread for eg he says that he certainly knows about it.

I was checked via blood for coeliac sprue some time ago and with this PBC and mine was fine.

My son had a bowel problem 4yrs ago and he was investigated at hospital and it was thought a temporary gluten intolerance, wheat more than likely but the cause was cited as over-use of antibiotics (he had some skin disorder flare-up). He managed to resolve the issue with a bit of time. But I remember the day he said he was worried, he had started with diarrhoea and it persisted and then he started seeing blood. This is what took him off to the doctor.

[Lucylongstockings]

Hi I have pbc and have given up gluten, I'm not sure if it's made my liver function better, but I gave it up about a year ago after bouts of diarrhea, and advice from a nutritionist who showed me information to show that if I was sensitive to gluten ,and still eating it I was increasing inflammation generally in my body. Since pbc causes inflammation too it seemed sensible to reduce the work my body has to do in dealing with that inflammation so decreasing the strain on my liver. She pointed me to one particularly good article ...the name of which escapes me at the moment but I'll try to fund the link and post it.

Bring strictly gluten free takes s lot of effort. It's getting easier to find things to buy and when you eat out, but you have to be careful ...you dont want to accidentally eat it. It can take 3 months to rid your body of that gluten, it's all or nothing you can't play at it. I feel better not eating it...I no longer have to run to the loo a few times a day . But if I accidentally eat it don't get between me n the loo! It's not good. Then I feel dreadful for 24/48 hours. I don't have coeliac disease but gluten defiantly isn't good for me . I'll look up that article tonight

[Jude1]

Wheat and gluten I had to cut out about 2years ago and feel so much better. You don't get the bloating so try it for a few weeks or perhaps a month. It can be expensive to buy but worth it. I'm having to see a dieticiannext month so will llet you and everyone else how I get on. There are other source of fruit and veg that has to be avoided.

Hope this helps.

Chin up. Xx

[lynda75]

I find I have a lower tolerance to certain foods but I don't think it's linked to pbc think if I didn't have pbc I would still have these issues. I can't have dairy anymore it makes me very sick ... I do have a poor appetite though I find little snacks work better for me rather than large meals . I suffer with alot of pain in my right side in my rib area which I know is common but when I eat a full meal just aggravates it more. I'm guess that by filling my stomach it's expanding and my spleen and liver is enlarged so I think it causes more presure on them when I eat a large meal. Again this is just my own observations I could be wrong. I do find I have definitely become more sensitive to foods though maybe it's is part of pbc who know ..... it's just listen to your own body and making the right changes for you. Once there safe of course ! X

[Hidden]

I've been tested many times for celiac and it's always been negative, and the diagnosis was IBS. I was given a diet sheet of food groups and an elimination diet process to follow, after months of trying different food groups , I tried wheat free and I have found the digestive issues are very much better and I do know when I have consumed it .

I also know if I've had to much cows milk so I watch how much I consume, It may be coincidence but I,ve been feeling less fatigue and my last bloods had all improved. I have read that there is a belief that some people can have a non celiac gluten sensitivity but I know I am sensitive to the wheat itself not the gluten.

[Hidden]

Hello bluetopia86.

Now I have been interested in food facts for many years and when my son had a bit of a bowel issue 4yrs ago now (he was 21 then) he had hospital investigation and it was suggested after by the consultant that he laid off wheat for awhile as it was possible that over-use of antibiotics had caused a temporary gluten allergy.

So I started buying gluten-free flours and odd other things and the whole family had to endure . I personally cannot see that it made any difference whatsoever regarding my bloods with PBC. (I was diagnosed Dec 2010.) I had never had an issue with gluten foods anyway nor have I had any issues with my bowels all my adult life (the urso used to cause constipation at times but I have resolved that myself).

My son slowly introduced wheat products (ie a sandwich for lunch as he was struggling what to have when at work) and in the beginning he said he felt a minor problem but over time it has been a case that he no longer has the issue and he will eat bread for eg when he has lunch or perhaps the odd pizza.

I did once read an article that was actually featured on NHS website and also national newspapers here in the UK and it was said that no-one should necessarily have a need to avoid gluten in their diet unless they had a known condition like coeliac for eg. I think it is personal choice and if one thinks that something might be of help with PBC there is no harm in trying it in my mind. I think after some time you will know more than likely and if it is working then all the good.

I have actually found that changes for me dietary haven't really made much of a difference in my LFTs. I used to have a pretty good diet pre-2010 when I started to itch and I can't help wondering if perhaps having this 'good diet' possibly made my own body go into some sort of over-drive and then decided to start attacking itself. Until someone comes up with a good explanation as to how PBC comes about I can only go on wondering there.

Going back to gluten, I would say that I don't overly-consume wheat products myself. Yes other grains have gluten but it is usually wheat that is blamed.

I also couldn't help wondering that if I was raised with bread for eg as it used to be a staple food many years ago though probably a better product then than it has become now maybe and other products that were gluten-containing, would it actually now make much difference and would a drastic change cause other issues?

I will continue to stick to my current regime, fresh fruit and vegetables as I do consume daily, a grain cereal (porridge or wheat biscuits (like Weetabix in the UK) for breakfast normally) and meals prepared from as fresh ingredients as possible without additives if at all can be avoided.

[cazer]

Autoimmune can cause more than 1 disease in a person so it is possible that you could have coeliac disease and pbc.ask the doc for a blood test if you have suspicions. But if it comes back positive Don't be tempted to go on a gluten free diet as you may feel better but if you need official testing you will have to go bacl onto gluten for 3 months before you can get a biopsy and this could mean your symptoms get much worse having been gluten free for a while.we made that mistake with our son who is on a gluten free diet but and now well but has not had the biopsy as it will probably make him really poorly to go back on gluten. I myself have pbc and had a positive coeliac blood test but I was negative on biopsy. I do have lots of tummy problems but think its down to our livers struggling to process food properly.the acidity o get is awful.i recently discovered I have lots of stomach ulcers. ..not sure what's caused it. Sorry bit of a long answer.

[Hidden in reply to cazer]

I wasn't aware there was a biopsy as cuh for coeliacs? There is a blood test known as coeliac sprue which can throw up abnormal LFTs apparently and I know I had this one prior to seeing a hospital consultant who then did the antibodies check for diagnosis of PBC.

Cazer have you tried peeling an apple and eating one or two of those a day after you've eaten a main meal? Just that it can help with things like dyspesia apparently (I've not much of an idea what that is) and apples can bring some normality to excess stomach acid.

I recently saw a programme on tv and it was asking what was the lowest of fat in 3 different meals on plates. The one that was more likely to give heartburn was ice-cream and apple crumble due to a higher fat content than a chicken curry and also some dish that had a lot of tomatoes.

I do think it is possible to suffer more heartburn in PBC due to the breaking up of fats that might be a bit more of a problem. I have found that for me heartburn surfaced when I first started taking urso back in Dec 2010. I had a few months of it a lot of evenings and then it vanished. Had never been prone pre-urso. I then had a further bout on a tablet switch, different manufacturer of the urso but sorted that out once again. I rarely get heartburn now. I do consume one or two apples a day though so maybe there is something in that?

[cazer]

Coeliac biopsy is done normally after a positive antibody test to gluten. They take small piece from intestine via endoscopy which if positive will show flattened villi from intestine which are damaged by the rogue antibodies. ...only know this cause our son will have t

To have biopsy at some point. I am pretty careful with how much fat I eat as I know it can have repercussions if I have more than a small amount. When I was first diagnosed in1999 I was pregnant and had glandular fever and could hardly keep anything down fat a no go.i can now tolerate v. Small amounts.think my ulcers might have been caused by another medication I had to take!its such a problem isn't it when it s more than one condition.

[mayday-Yeah in reply to cazer]

You are getting it tough havin stomach ulcers too. Did u have these diagnosed through endoscopy?

[cazer in reply to mayday-Yeah]

Yeah they did endo to check for varices of which I have 2 first stage amd found multiple stomach ulcers ...was a bit gobsmacked to say the least but had had a lot of tummy pain which I put down to enlarged liver...spleen etc.just shows how we can blame pbc for everything and docs are quite happy to let us! !!yes must admit feel a bit rubbish as gynae prob and skin prob as well .cant have hysterectomy which could probably do with because of pprtal hypertension!!!!!Ah sometimes think ill go mad with it all.thats for kind words it helps. Had this 16 yrs so family just ignore it which is good one way but kinda hard as well. Yours frustrated. !

[donna01]

I went off gluten in October 2014. It was a tough transition, but I feel so much better. Like you bluetopia, I had done a lot of research on gluten and there is so much interesting info stating it causes autoimmunes. I myself noticed when I came off it, I had less gas, less diarrhea and less brain fog. Please read this article as I found it of great interest. faim.org/autoimmune/root-ca...

[Michi1]

Traditional medical doctors see gluten through a very narrow lens. You have celiac disease or you don’t. About 40 percent of PBC patients also have celiac according to my hepatologist.

There is a new kind of medical practice called Functional Medicine or integrative Medicine. Those doctors are treating with drugs where necessary but follow the philosophy that most diseases can be improved or eliminated through detoxifying our bodies, eating well, exercising, and in some cases taking nutritional supplements. They say there are ten different proteins in wheat you can be allergic to. They attribute the triggering of autoimmune diseases to food allergies and environmental triggers.

It’s fascinating stuff. If you are not aware of this area of medicine, a great book on the subject is “The Autoimmune Solution” by Dr. Amy Myers.

I did an elimination diet and after a couple of months got very sick when I ate pasta. I had never had digestive symptoms before I eliminated it. I will never go back. My doctor thinks based on that I may have celiac but the testing will come up negative if you don’t eat gluten and I’d have to eat it for two months before testing. Since the treatment is quitting gluten, what’s the point?

I ate very clean for six months before agreeing to take Urso while my doctor monitored my LFTs. They continued to rise in a perfect line on a graph. Getting the cholesterol out of your bile ducts is crucial, and the clean diet doesn’t do that. The good news is I responded to Urso really fast, and I feel great. An anti inflammatory diet full of vegetables is great for your body. I’d like to believe getting the toxins out and eating clean may not clear the bile ducts, but perhaps it will prevent triggering the episodes where our bodies are attacking them.