Is it normal to have very smelly gas, regular bouts of nausea and nasty burping attacks with PBC/AIH? Thank you conniefused

[Alley27]

[Hidden]

Hello conniefused.

Nausea can be common with PBC. Not sure about the other 2.

Could be that any medication you are on is causing this?

When I was first diagnosed and started urso Dec 2010 I had bloating and also heartburn for a few months. This vanished but I have noticed over time that although my urine looks normal and follows the norm (ie darker yellow early morning then paler to clear) it somehow seems to be different from how it used to be pre-urso.

I know that urso if unused in our system just gets passed out via the faeces so that might have something to do with it. I have odd bouts of constipation these days with urso that I know as I never had prior to it.

[dislocated1 in reply to Hidden]

take fruits high in malic acid, drink apple and cranberry juice, take bitter herbs for the liver

[Alley27]

Hi Peridot, I take prednisolone and mercaptopurin as well as urso (AIH/PBC overlap) but am not sure if the medication can cause this. I also take omeprazole, so any digestive trouble is generally no problem. I do have bloating and to be honest, I don't take my urso as I should because it makes me look pregnant and weight gain is already too much for me. I also have hashimotos disease and am well aware that thyroid issues can cause constipation, which is a constant issue for me, even with the use of lactulose. I just don't get the on off way this happens. It comes on like an attack of some kind then goes away for weeks, perhaps months then it starts again.

It could be to do with the AIH, I will look into that. There is not enough info out there about AIH unless you want to read clinical papers, I wish there was a dedicated group like this one for PBC.

Could it be that sometimes the PBC flares up and causes these unusual problems?

I would also like to know if there is anyone on here with the overlap, who takes anything for arthritis. It's a fact that my own Gp said they don't know how to treat me for anything really. They asked if the consultant had given me a list of common medications I could have. I really am at my wits end on this because my consultant left the NHS in December 2013, and I have not had a consultant appointment since last August. My gp has written to Pinderfields and asked if there was anyone I could see, but nothing yet. I may ask if I can be transferred elsewhere at this rate.

Thank you

conniefused x

[Hidden in reply to Alley27]

Hello again conniefused.

Years ago my late first husband had to take prednisolone (steroids) for bad asthma attacks. He seemed to be quite bionic once on them for a period of time as your body speeds up so that might be why you experience periods of gas or burping.

Wouldn't the steroids be adequate for arthritis?

Could be a medication clash that is causing the problems maybe.

Now with the urso I suffered a bit of bloating that gave me the look I was a few months into pregnancy when I first started on them and add to the fact that I always used to have tummy bloating at that time of the month anyway I didn't think overly-much of it except it was the urso. I persevered as the bloating also heartburn I encountered did go away within a few months.

I think any medication we take can alter certain things in our system, some continually, others temporarily.

When you get to see a doctor at hospital, why not write down some of the suggestions, explanations or questions anyone else has posed here to ask. Might get a doctor thinking and also that is how they learn more.

[dislocated1 in reply to Alley27]

I used to take omeprazole but I stopped because it deplets all the minerals in the body. I changed my diet and went gluten free, grain free and that helps. When I have a flare up its because I mess up sometimes and go off the diet. I take no pain meds for the arthritis due to damage to the liver. I am autoimmune, PBC, My GP knows nothing about all this, there are no autoimmune doctors here in the midwest 200 miles for a heptoligist/ bilrary tree specalist. I do not take steriods except for the ursidol which is helping. You might want to check out the Paleo AIP website also a natural medicine doctor

might help. My sister takes the steroids, she has copd, ra,back problems. One of my daughters has Hasi Good Luck

[JennerLayne]

I too have PNC/AIH overlap, and experience joint issues and rheumatoid arthritis. I have not been put on meds given my LFTs returned to normal following a drastic change in diet (limited sugar, relatively no alcohol, gluten free, etc.) At times, I take Aleve (in the US) for joint pain and I do have regular bouts of nausea accompanied by falling. I've found that any gas and burping can be controlled by avoiding certain trigger foods.

[Yvi1960]

Hi Conniefused I also have AIH/overlap PBC there is a group for AIH it's been around a while without much on it but recently the group has been refreshed and some really good information including research on AIH on the site I find the online support with other suffers to be the best. You should find it if you put in AIHOrgUK. May see you there.

[Alley27 in reply to Yvi1960]

Hi, Thank you for this info, I never knew it existed .I found the site and my name is alley Williams on there. xx

[Yvi1960 in reply to Alley27]

Hi my name on AIH is Yvette walker see you there xx

[dislocated1]

Yes, but you must change your diet. Remember to keep your liver clean and eat the right foods. You may have to go gluten free, which is what I did and it helps. Also grains give me problems, can't do oatmeal, etc. Check out the gluten free websites along with Paleo, Phase one diet, blood type diet and the Paleo AIP diet. These are full of info and can be confusing, but by eliminating foods you can help with the problem

[Alley27]

Hi I am gluten free, and am considering going veggie. Unfortunately, we are on a low income so I have to eat what I can get. Not ideal with the health issues I have, but I have no option. I am not entitled to any ESA or DLA as my husband works. My fatigue is so bad I could not possibly work and I have worked all my life up to the past couple of years since diagnosis in dementia care and of course, being immune supressed I cannot do that type of work any more.

I don't eat anything greasy and cannot eat pastry as it causes me pain. Thank you all for your advice I will do my best to change my diet and make other life changes to help myself more.

As for meds, the steroids do not help much with the joint issues and am not sure if the muscle waste I have is due to steroids or the diseases taking their toll. I am going to my Gp this week to ask about pysio and the possibility of being referred to the gym. It may help improve the fatigue, and if nothing else, it will get me out.

Thanks again

conniefused xx

[Flymccoll]

keep a note of your dairy intake, I have these problems with lactose