Life with PBC

Hi again everyone,

As I mentioned in a previous post, I have been reading and studying on leaky gut and gluten intolerance, as I am at a loss as to how I have this disease and am quite frankly, tired of it. No one in my family has ever had autoimmune or liver problems. Heart problems and High blood pressure seem to be our issues. Anyways, I came across a very interesting page on the internet of a woman named Tammy, who is posting her journey with this nightmare disease. She too has discovered how a gluten free diet and how leaky gut does in fact play a role in autoimmune. Don't take my word for it, check out her page. You can ask her questions and leave comments on her page as well.

It is very interesting how high her ALT/AST/ALP were when diagnosed as to where she is today.

Anyways, check it out as I feel this is a wealth of knowledge to me and hope that it will be to you as well. I feel any little bit of help/knowledge we come across should be shared with all who are interested and open minded in learning more about this disease.

Here is her first link: You must click on March of 2013 to see her blood tests. lifewithpbc.blogspot.com/se...

Now her newest page for 2015 is on this link and she is sounding a bit discouraged as of May 2015 even though her numbers are still good, her ALP is slighlty elevated and Dr wants another biopsy.

start-watching.com/

Please let me know your thoughts :

8 Replies

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  • Hello donna01.

    I will have a look at your links later.

    I am not certain how I came by PBC but I think after so long you do start to give up wondering and thinking about a lot of things as I have done now I've been diagnosed with PBC 4 1/2 years.

    For myself there will be times when I come across something and wonder but I know for one I have not got a gluten intolerance or a 'leaky gut' either. Never had any digestive problems at all. The only thing I did have growing up when I was 12 was my appendix out (I am 51 now).

    I somehow think that although changing a diet to gluten-free as a lot on here seem to do might make one feel much better, I do very much doubt that it can do little else. I did experiment myself with gluten-free (cut out wheat) for a few months due to my grown-up son having what was thought a temporary wheat gluten issue (doctor after tests decided it was highly likely it was caused by too many antibiotics at the time). For me I cannot say it made much of a difference in how I felt nor did it alter my blood readings, they seemed to correlate with how they have been panning out.

    My biggest problem with having PBC is the itch that starts to surface early evening (anytime gone 7p.m. feel prickly) and then by 11p.m., the itch is with me until around 5a.m.

    No thanks, I cannot see the reason for a biopsy in PBC once diagnosed (I was without as I am in the UK) as it won't change the treatment of PBC.

    My one concern that I have since thought about is that a sudden change of diet can have a bit of effect on the system and I personally am not sure if that is a good idea. It is said by the medical profession that unless one has a definite gluten intolerance then there is no need to actually have a gluten-free diet.

    I don't want to disillusion anyone on here regarding PBC as that is and never has been my intention but I know for myself I am finding that just eating a pretty sensible diet without additives that I deem unnecessary (ie artificial sweeteners or MSG for eg) seems to be feeling fine.

    As yourself donna01, I have no family members with liver problems or any of the auto-immune conditions either. My mother was diagnosed with high blood pressure before she was aged 40 but she was a smoker since teens, I've never smoked. No-one as yet has had any heart problems. I have thought for a long time that I was perhaps keeping myself healthier than my own parents. My mother died suddenly with a brain haemoorhage when she was 43 and my father died when he was 56, his lungs were cited the cause of his death as he was a smoker.

    My ALP is higher by almost double to my ALT but they do see-saw at times. They are considered not bad as they were obviously higher when I was diagnosed in late 2010. I gave up some time ago really concentrating on the blood result figures although I do like to look at them when I have them. In PBC my bloods are considered quite ok still.

  • Sorry to hear about your parents. My gosh, they passed away very young. I myself too, do not have any stomach issues or gastric issues thank God. The thing with leaky gut is that you can have a small tear in your intestinal tract or the lining of the small intestine and not even know it. What happens is the bad stuff leaks into your blood stream and causes the body to react and fight, as this appears to be a foreign invader. It seems to get worse over time if not taken care of, hence the reason for more autoimmunes. Leaky gut symptoms are not unique and others have more symptoms than others. Diet indeed plays a big role. All I know is if it is something that can be treated and may be the cause, I want to find out. I don't think I will ever stop wondering how I came about this disease and I am on a mission to find out, Lord willing.

  • Hello again donna01.

    Yes I think we will all go on wondering how we came about PBC. I still suspect myself that mine was triggered by having hepatitis vaccinations for a job I started a few years prior to itching. The hospital consultant reckoned I had started with PBC 'a few years ago' at diagnosis.

    I find that odd times I think of something but it has to be remembered that I reckon this trigger for PBC has to be something that more than likely all of us have had to have encountered.

    I have read of all the trials that have been on-going and even completed and now awaiting results from (I've lost count of them as been quite a few in the last couple years) but they seem to have been with regards to treating the PBC and even one was/is for fatigue in PBC, another was/is for itching.

    I have got it into my head the way forward for PBC would be to try to eradicate the antibodies. We'd probably not be able to improve of any internal damage that we have that cannot be repaired by ow system now if we have any but it would bring a halt to furthering damage. It is probably more complex than this but that is one trail of thought I've had.

    Who knows eventually someone out there might just click on something that us novices in the science world are thinking as we all cope and deal with the PBC in our own ways and we never know what it might lead to.

  • Hi Donna,

    That's interesting, but it also seems that gluten free diets are the new "cure all" for everything from autoimmune to autism. My son is autistic and although I never did the gluten free/ casein free diet, most of the other parents of autistic children that I knew, had tried the diet and didn't stick with it for very long for various reasons but mostly cause it didn't show any improvement and was expensive to do. I once took my son to a pediatric gastro and asked him his thoughts on it and he said that he has looked at some of the studies and they didn't make much sense to him and that if a child had a sensitivity to gluten that they would more than likely have diarrhea not constipation. DAN Drs. were popping up everywhere and we went to a couple of them (actual MD's) and the first DAN Dr. who was very odd wanted to put him on iron tablets even though his iron in his blood test was very good and the other Dr. wanted him to take $300 worth of supplements that he so happened to dispense from his store even some ridiculous things such as green tree bark juice. These Drs. all did something different in addition to putting them on gf/cf diets. I ordered the stuff, but later felt fleeced and didn't do anymore follow ups with that Dr. These "diets" can bring in a lot of money to these Drs. who push them with their supplements that it's hard to know if there's any legitimacy to it being beneficial to some. This you may find interesting, I did realclearscience.com/blog/2... or ncbi.nlm.nih.gov/pmc/articl... I do think somehow that my son was affected by what may have been going on with me when I carried him. I think it's all connected. Of course, wheat is not the same as what our ancestors used to eat, since it's been genetically modified, but I'm just not convinced.

  • Hello Jean43.

    As I have stated, I am sceptical about gluten-free diets in particular unless one has been advised otherwise by a doctor. My son who was in his early 20s at the time was suffering from bouts of diarrhoea and then he noticed blood one day. He had cameras at the hospital and nothing was found wrong alongside blood tests he had taken too. He was advised it could be due to over-use of antibiotics and to lay off wheat gluten temporarily. It seemed to alleviate the problem and then he gradually re-introduced wheat. He is now 26 and he seems OK.

    I know at the time I started using gluten-free flours for eg and various other recipes that I knew were either wheat free or some gluten-free and with being diagnosed with PBC myself for not overly-long I have to say I did not feel any different nor were there any real changes in my bloods.

    I do think that in today's world foods have changed drastically but I also have the way of thinking that each century has seen changes and also even health conditions and certain childhood infections/afflictions, etc have all altered too. Certain things seem to have been eradicated (smallpox for one. I was vaccinated for this back in the mid-1960s but for my own children 20yrs later the vaccine doesn't exist here in the UK now for immunisation).

    I do think that our systems can adapt to certain foods but I think it could maybe depend on when it is introduced to us perhaps.

  • Hi Jean43,

    Sorry to hear about your son. That can be a difficult thing to deal with, that is for sure. I just want to say, I am fully aware of the whole "gluten fad" and I myself thought it might be a hoax until I went gluten free myself. I noticed major changes not only in my bowels, but even in my brain as I used to get that "brain fog" feeling. I am not sure if you clicked on the links I provided and read her numbers, but they have drastically changed. Her diet isn't one someone sold to her. She just eats all natural and has eliminated wheat/gluten, while healing the leaky gut. To me, anything is worth a try and even though I was skeptical as well, I know how I feel. I also have a friend diagnosed a few years ago with Crohn's disease and she has been gluten free for over a year now. She went back in for a colonoscopy and Dr said no sign of Crohn's any longer and is in remission! As you stated, the wheat today is modified and some of us have sensitivity to it while others may not. My belief is that genetically modified food, pesticides as well as immunizations are giving us all kinds of illnesses that our ancestors never had. We have been exposed to a lot compared to them. I am willing to try anything to help myself and if it costs me more money to eat healthy, I don't mind, as it is totally worth it to me. If only I could grow my own fruits and veggies all year round :)

  • Hi Donna01,

    I'm glad the diet is working for you, and someday I may give it a try. Although, I do wonder if it's the GMO wheat that is causing most of the problem if switching to non GMO wheat would also make a difference or is it by that point that it has affected your health will only be benefited by dropping gluten altogether? I know some are going even stricter than gluten free wheatbellyblog.com/2014/07/... I always thought that rice flour could be as bad or worse given the levels of arsenic, especially that which comes from China. Please don't feel sorry for my son, he's doing quite well. There are some higher level reasoning skills we are still working on and social skills, but other than that he's very good academically and it's getting harder to distinguish him from his typically developing peers. We were fortunate to have been able to get him lots of therapy and his level of severity while worse when he was younger has gotten milder as he gets older. Anyway, again I'm glad your doing well and please keep us posted especially if you also show a a dip in your counts on tests etc. And thanks for the links! Good luck to you!

    Jeanie

  • I think we react differently, as for me, I'm much better on gluten- and milk-poor (as I'm not ly dogmatic) diet. After years I don't miss bread, and I eat buckwheat, quinoa and other interesting things, what makes my diet interesting, (I was at a point bored with rice). As I'm not keeping it as a dogma, it doesn't take much effort and also isn't more expensive. My results were extreemly good this spring, I thought it was not my blood :) and one of the reasons for it can be (I suppose) this kind of diet. It's not so hard, so I think, it's worth to try. Of course we react differently, but as there is not much help given by medicine, we can give it a try. It surely will not hurt :) Take care!

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