Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl New Mast Cell Research, Studies, and Trials >> New Mast Cell Research, Studies, and Trials >> Liver Abnormalities/Cholesterol problems & MCAD http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1306638592 Message started by Lisa on 05/28/11 at 16:09:52

Title: Liver Abnormalities/Cholesterol problems & MCAD
Post by Lisa on 05/28/11 at 16:09:52

http://onlinelibrary.wiley.com/doi/10.1111/j.1478-3231.2008.01839.x/abstract

New aspects of liver abnormalities as part of the systemic mast cell activation syndrome

Kirsten Alfter1,2, Ivar Von Kügelgen2, Britta Haenisch2, Thomas Frieling3, Alexandra Hülsdonk3, Ulrike Haars3, Arndt Rolfs4, Gerhard Noe1, Ulrich W. Kolck1, Jürgen Homann1, Gerhard J. Molderings5
Article first published online: 25 JUL 2008

DOI: 10.1111/j.1478-3231.2008.01839.x

Keywords:
chitotriosidase;hyperbilirubinaemia;hypercholesterolaemia;mast cell activation syndrome;mast cell mediator syndrome;systemic mastocytosis

Abstract
Background/Aims:
This study was aimed at investigating the form and prevalence of liver involvement in patients with systemic mast cell activation syndrome, a possibly common subvariant of systemic mastocytosis. An attempt was made to shed light on potential mechanisms responsible for mast cell mediator-related liver abnormalities.

Methods: The methods used were clinical investigation, biochemical determination of cholesterol, transaminases and bilirubin in blood, determination of chitotriosidase by enzyme-linked immunosorbent assay technique, and quantitative reverse transcribed-polymerase chain reaction to determine chitotriosidase expression.

Results:
An elevation of plasma cholesterol was detected in 75% of the patients; elevations of transaminases and bilirubin were determined in 40 and 36% of the patients respectively; hepatomegaly or morphological hepatic alterations were observed in 34%. Chitotriosidase level in blood as a surrogate parameter for Kupffer cell activation in the liver was unchanged. However, chitotriosidase expression in isolated mast cells was downregulated at the mRNA level.

Conclusions:
Hypercholesterolaemia and liver abnormalities are frequently found in patients with the mast cell activation syndrome. Hence, the mast cell activation syndrome should be considered at an early stage as a possible cause of hypercholesterolaemia and of hepatic abnormalities of unknown reason. Mast cell activation may be indicated by a reduced expression of the enzyme chitotriosidase in blood-derived mast cells as well as by an increased plasma cholesterol level.

Title: Re: Liver Abnormalities/Cholesterol problems & MCAD
Post by Starflower on 05/29/11 at 02:24:14

Sadly, I think 99% of doctors in the US are going to pay absolutely no attention to this kind of research. Why?

1) If you have high cholesterol, it MUST be because you're making bad lifestyle choices

2) Here, take this pill

Heather

Title: Re: Liver Abnormalities/Cholesterol problems & MCAD
Post by juliegee on 05/29/11 at 15:57:11

I've intermittently had very high liver function tests for no apparent reason- often ended up hospitalized as it was accompanied by severe abdominal pain. My hepatitis panel was always negative...

I always suspected it was my MCA. Thanks for sharing, Lisa.

Julie

Title: Re: Liver Abnormalities/Cholesterol problems & MCAD
Post by Lisa on 05/30/11 at 05:29:12

You are VERY welcome, Julie!!

Heather, I FULLY agree with you and I don't think it's US docs who have this attitude but the great majority of the medical community out there for there's not enough research into these things that prove where the alterations in the hypercholesterolemia comes from - without knowing the cause, you treat the symptom - right? DON'T WE KNOW THIS LESSON WELL, HUH?!!!

So, now that we know the cause of our imbalances, now what? I think it goes back to the need to stabilize those mast cells!!! By taking the MC stabilizers we have a means to force them to behave more normally. Yet, this is difficult in that those with SM have too many mast cells and it may not be the fact that their MCs misbehave. But nonetheless, I think that whether there are too many or that they are too active, it's still a matter of trying to keep them quiet and the need to avoid triggers is reinforced with this situation. If the MC stabilizers help to keep things quiet, then it shows how important it is to be on these meds. Then, I would imagine that it's necessary to counteract the imbalances of the cholesterol levels and other imbalances with the appropriate meds.

Well, this is what I make of it anyway. Anybody else have a different viewpoint?

Lisa

Title: Re: Liver Abnormalities/Cholesterol problems & MCAD
Post by Joan on 05/30/11 at 16:42:16

I agree with what you said, except that I might be an exception. I have quite a bit of "leaking" of my mast cells for periods of time, but my cholesterol is normal. I have high triglycerides, but I think it's more diet-related than mast-cell related. I'm going to be really good about carbs for a while and then have a test to see. I was told to take fish oil capsules for it, so will try that, too. Will let you know.

Doctors have apparently been ignoring this article for several years now! It was published online in 2008! Maybe if the title said, "Mast Cell Mediators Can Cause High Cholesterol," they'd be more likely to notice! Most doctors I've known don't really dig too deeply for things like this.

Title: Re: Liver Abnormalities/Cholesterol problems & MCAD
Post by Lisa on 05/31/11 at 01:14:38

According to this article, Joan, it said that something like 40% of MCAD/SM patients have these changes, so not all of us do. In the beginning my lipids were steady and normal, but as the time has passed, pretty much during the past two years, this has changed and they've begun to fluctuate, ups and downs with the triglicerides high one time and then normal again and the HDL in a good range, and then too low the next. It was my cholesterol that caught the eye of my cardiologist and the HDL being too low this time that made the bell ring for me for somebody put on here an article about masto causing the HDL to be too low and my doctor said this was genetic that mine was too low and I thought - nope, that's not so! She's not understanding it. So I went hunting and remembered this article and then wrote to Dr. Molderings to get a copy of it. (If anyone wants a copy, just send me a PM with your email and I'll send it to you.) Yet I know my issues here are not genetic and that my cardiologist was not thinking along the right lines.

So, one of the things that I think sets a patient apart as to who has their own issues with their lipids and those who have it with masto should be connected as to two things - that of family history and the other of fluxuating results. This is what has clued off my endocrinologist in that because I've been seeing her every 3 months, she was able to see the pattern and when I began having out of the blue spiked triglicerides, when the test before was normal, this made her eyes pop. And then to have it return to normal again made her scratch her head. But according to this report, the mast cell mediator release is behind the hypercholesterolemia and if this is so, then your markers are going to change as according to when you've been reacting or not. This is what would be masto related and not a genetic makeup then.

So, this is why I say, if indeed up to 40% of us have these alterations, then it only reinforces the need for us to remain as stable as we can and thus help to keep our lipids in the right ranges.

Lisa

Title: Re: Liver Abnormalities/Cholesterol problems & MCAD
Post by Starflower on 05/31/11 at 05:22:29

I completely agree with you about achieving and maintaining stability. The more I learn, the more I see the importance of a mast cell stabilizer. Histamine can make you very uncomfortable, but it's the other mediators that will do serious damage... PAF, heparin, cytokines... the more stable we can keep ourselves, the better. Deb has set a really healthy example by structuring her life to avoid triggers. I know I, in particular, always need to be on the lookout for TOO MUCH STRESS.

Heather

Title: Re: Liver Abnormalities/Cholesterol problems & MCAD
Post by Mike on 06/03/11 at 08:42:19

LOL, I am SOOO tired of always being the odd one. I have HYPOcholesteremia, total cholesterol right around 100 AND I have some degree of liver involvement based on my most recent abdominal CT. Dr wants me to start on Gleevec next week.....I'm still pondering my decisions.

Title: Re: Liver Abnormalities/Cholesterol problems & MCAD
Post by Joan on 06/03/11 at 20:11:37

Hi Mike,

If I were pondering chemo, I would get a second opinion from a mast cell expert/specialist/researcher. Can't remember where you are, so don't know who would be best, but I do know that the experts are listed on this site.

The hematologist I see at Stanford was recommended by Dr. Akin. He's very hesitant to do chemo on me, unless my labs or bone studies indicate very aggressive disease or progression to a point where it's life-threatening. He says it's a matter of risk vs. benefit. I don't know what your situation is exactly, but thought I'd throw my 2 cents in on the subject.

Also, I wonder if any of the mast cell experts has checked you for the c-kit mutation. Gleevec only works on those without that mutation, and it's very hard to find.

Good luck on whatever you decide.

Title: Re: Liver Abnormalities/Cholesterol problems & MCAD
Post by Mike on 06/04/11 at 07:10:30

Hi Joan,

C-Kit negative here. This recommendation came from the esteemed Dr. Teffari at Mayo Clinic, as well as one of Drs. on the board of TMS (I don't mention his name because I feel his group is one of the worst I have ever seen). So, I am confident I have a viable treatment recommendation, I'm just not sure at this point in my life if I will decide to take it.

Title: Re: Liver Abnormalities/Cholesterol problems & MCAD
Post by Joan on 06/05/11 at 08:18:11

Sounds like you have all the information. Yes, a difficult decision. If you don't mind, please keep us posted how you're doing. There are several of us SSM people out here who wonder about treatment now or in the future. I'm c-kit positive, so Gleevec isn't an option for me.

Title: Re: Liver Abnormalities/Cholesterol problems & MCAD
Post by Mike on 06/05/11 at 13:43:18

Thanks Joan.

Title: Re: Liver Abnormalities/Cholesterol problems & MCAD
Post by vicmjones on 08/31/13 at 12:27:57

Very interesting. My Cholesterol is 283, I am of normal weight, I exercise and eat a very healthy mostly plant based diet.