# Stubborn IBS and now Wilson Disease



## jaumeb (Sep 1, 2014)

I have been posting for some time in this forum. I tried many remedies and found no solution so far. I just received results for ceruloplasmin and urine copper indicative of Wilson Disease. Any other sufferer of this disease?


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## Knyttet (Oct 21, 2013)

Hi,

so I'll start by replying you here (continuing the discussion from another thread). I'm too tired to make a new thread tonight but maybe I should make one about liver function and IBS in general.

Sorry to hear that there was some complications during the liver biopsy. The doctor's said that they have to think about doing a biopsy soon If my enzymes don't go down. But apparently it's something they want to avoid due the risks.. And I would like to avoid it too. But so in June they're gonna check copper from my urine so I'm guessing it's to out rule (or find) Wilson's disease.

How annoying that you don't know for sure if it is Wilson's or not. What's the plan for you now then? Do you experience any symptoms from the abnormal liver function? Wilson's sounds like a serious disease, wouldn't it be important for the doctor's to know if it really is it causing the abnormal liver function or not?


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## jaumeb (Sep 1, 2014)

The biopsy came back normal, so this means that my liver is not in a terrible condition. Unfortunately, we don't know the copper levels as the pathology dept. didn't do the copper quantification test. The plan of my GI is to keep monitoring me and consider the possibility of a second biopsy in 12 months.

There is a support group for Wilson's. It is a bit time-consuming as the software for that forum is not as convenient as the one for this IBS forum. If you suspect Wilson, they should be able to provide some guidance and documents. I no longer participate there as it is difficult to find unread messages.

My problem is pain in the lower abdomen and groin area that extends to my thighs. In principle, this seems unrelated to Wilson. However, diseases are so mysterious that one never knows for sure.

Have they tested for ceruloplasmin levels? Kayser-Fleischer Rings?

My cerulplasmin was just a bit low and no observable rings on my eyes. My urine copper came back fairly high with 153 ug.


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## Knyttet (Oct 21, 2013)

Okay, well that's great news. Are you allowed to use other medications and supplements? The worst part with this for me is that i'm not even allowed to use digestive enzymes right now or any other supplements and it worsens my IBS significantly. And for example, magnesium citrate helps my constipation and helps me sleep but I'm not allowed to use that either. So frustrating.

That sucks that they didn't do the quantification test and you might have to undergo another biopsy.. hopefully it won't be needed though.

Okay, thanks for the tip. Right now I don't feel like looking into Wilson's because I will just start stressing more. And honestly I don't think I have it. I feel like it's more likely that the abnormal liver function is related to my gut problems and/or overall situation. Even hypothyroidism can cause elevated liver enzymes even though this is not anything my gastro doc has mentioned. I read this article review from April 2015 about the micro biome in which they talked about the connection between the micro biome and liver function. Recent research has showed that there seems to be a connection between the bacteria and the gut and liver function. And abnormal liver function has been documented in SIBO patients for example.

In the stool analysis I had done last year it said that if the dysbiosis remains untreated it can put stress on the liver in the longterm. I think this could be the case for me, it makes a lot more sense. Because we know that the bad bacteria in the gut exert toxic byproducts and that can stress the liver. But then again, I'm not a doctor and I don't know enough about this stuff. It just makes more sense to me than a very rare disease. But by now I also feel like anything's possible so I'll just have to wait and see what the results from the copper test will be.

I don't know if they've tested my ceruloplasmin levels, never heard about those or Kayser-Fleischer Rings! Do you know what the shortage of ceruloplasmin is, so I can look for it in my lab results?

Sounds like a difficult situation. It's hard when many of these disease's progress so slowly so it can be hard to find them. I hope you have a good doctor? What does your doctor say about your groin pain?


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## jaumeb (Sep 1, 2014)

I didn't know about the gut-liver connection. For me it makes total sense that some bad bugs are producing toxic waste. That's exactly how I feel it. I'd love to read those articles you mention.

My ceruloplasmin was around 17 and Wilson should be considered when is lower than 20.

Ceruloplasmin + urine copper + eye rings are the three non-invasive test that can provide indication of Wilson's. If any of those is abnormal, biopsy might be necessary.

My doctor doesn't say much about the pain. I didn't ask specifically. I have my hopes on the ultra-levura now. If that fails, we'll see ...

BTW, my problem has always been D. I never suffered C.


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## Knyttet (Oct 21, 2013)

Yeah, to me too! It seems that this research into the connection between the liver and the micro biome is really recent but promising. Here is the review article I talked about:

http://www.gastroendonews.com/ViewArticle.aspx?d=Educational+Reviews&d_id=192&i=April+2015&i_id=1169&a_id=30964

"Abnormal function of gut microbiota appears to be a significant factor in the cause and progression of several liver diseases.55 "

They seem to mainly talk about nonalchoholic fatty liver disease which I don't think I have, but still. If SIBO may cause NAFLD why couldn't it/dysbiosis/candida cause elevated liver enzymes in a long term? Oh there's so much we don't know yet... You can probably find some more good articles following the citations in the review.

Okay, I see. Thanks for the info. I googled those eye rings but I don't think I have them, but I'm not an eye doctor. Maybe the doctor's are testing ceruloplasmin in june when they're testing the liver enzymes.

I really hope the ultra-levura helps you! Keeping my fingers crossed. And yeah, by now I've gathered that your problem is D and not C


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## Knyttet (Oct 21, 2013)

They cited this article among others, I haven't read it yet but it looks very promising:

"Microbiota-liver axis in hepatic disease"

http://onlinelibrary.wiley.com/store/10.1002/hep.26494/asset/hep26494.pdf;jsessionid=2171BE86BDA6435071326F467667F31F.f01t03?v=1&t=ia29n32z&s=d79def83b56b22494150af49b6e7dfbaeccf571d


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## jaumeb (Sep 1, 2014)

Thanks for the articles. Unfortunately I don't have access to the second one.

I didn't have any K-F rings. I think you need to go to the eye doctor for that as they are seen using a slit lamp. Chances are that you don't have them.

Keep me updated about the results of your Wilson related tests.


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## Knyttet (Oct 21, 2013)

You're welcome. Oh, that's too bad. I haven't read the whole second one yet, but they talk about how the microbiota can cause inflammation in the body and that way affect the liver and cause liver disease.

I see. Yeah, that's what I thought too... I'll try and remember to ask my doctor about those eye rings.

Will do, and please do the same


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