Elevated liver enzymes

[Gayle]

Hi Wayne,


I agree with Polly and Tex regarding the recommended schedule for repeat colonoscopies with MC.

For what it’s worth ---
I asked the Gastro doc that I see at Mayo in AZ a similar question because I was beginning to question why that the Gasto practice I was seeing in MN was advising some continual diagnostics, even after the diagnosis of MC was definitely made and confirmed.

His answer was: (maybe some slight paraphrasing here but you get the point) “We do not think that Colon cancer is seen in increased numbers in association with MC. Therefore, ROUTINE colonoscopy, which is generally used as a cancer screening tool, is generally not indicated more frequently than the established guidelines recommend. However, if there is reason to repeat colonoscopy more frequently -- then that’s justifiable, but we do not use it as a matter of routine follow in MC.“

I hope everyone here understands that, in the previous paragraph here, this Doc was speaking statistically. So that should NOT BE CONFUSED or CONSTRUED to mean that colon cancer never occurs in people with MC. Instead, he is saying they tend to believe that it (colon cancer) occurs at the same rate in people with MC, as it does in the general population.

Now as to the Barretts Esophagus issue – that may well be another matter requiring much closer follow which – IMHO -- I think I would adhere to. Whether the 2 issues are related or not is apparently not known or understood?

Seems to me that your Physician should be able to explain his/her reasons for recommending this level of surveillance in your case. i.e.) He/she should be able to explain his/her reasons for recommending that you should be followed with such frequency?

Keep the group here posted,



Good Luck,
Gayle Crow

[wkm62]

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[tex]

Wayne,



About the refrigeration issue - actually, once you collect a specimen, they recommend that you freeze it, (to preserve it - you don't want to end up with any "spoiled" feces, you know. ), and it should remain in the freezer, until the moment that the DHL overnight delivery service picks it up. That way the 6 o'clock news won't include any reports of delivery truck drivers dropping dead on the job, due to toxic fumes.

Don't worry, the container is secure, and as I recall, it's also sealed inside a plastic bag, and then put into a box, so that "gaseous emissions" shouldn't be a problem, (as long as it remains frozen, at least).

Tex

[wkm62]

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[tex]

Wayne,

This seems like a rather strange position for me to be in, (about to try to defend a GI doc - ), but some of what he said, has merit. I'm going to stick my neck way out, (because I haven't researched this at all), and point out that environmental test labs are very likely held to a much higher standard, than medical test labs. Even though that sounds crazy, (and it might very well be crazy, for all I know), here's why I think it is so: Environmental test labs are governed by law, and the laws are very strict, concerning most issues involved. (According to the law, if you accidentally step on an endangered salamander, and squash it, being blind, is not a defense). IOW, much of the law that apples to environmental issues, does not allow for exceptions, and violations of those laws, can result in huge penalties, because the government is involved, and the government is not inclined to be forgiving - the law is the law.

Medical labs, on the other hand, operate under a much more flexible set of "rules and regulations", set up by medical authorities, not the government. I would venture a guess that the medical industry is pretty much "self-policing", for the most part. I suspect that mistakes made in a medical lab, are viewed not much differently than mistakes in the operating room, a doctors office, or a nurse's station. They are regrettable, of course, but mistakes happen, so a lab mistake is not the "end of the world", from a judgmental perspective. It is left up to the doctor to be the judge of whether or not a lab result should be trusted - that's part of his or her job.

I may be all wet on this theory, but Polly can probably shed some very illuminating light on the issue. The bottom line is, IMO, mistakes are not exactly a rare item, in medical labs. Most mistakes are probably due to paperwork errors, sample mixups, etc., but they probably happen much more often than we would like to think they do, and I doubt that someone's head rolls, on most occasions, when a mistake is made.

I believe that he's right to check for possible muscle damage, also, to narrow down the possibilities.

His plan, "to see it the microscopic colitis has resolved ...", is worth a good laugh, I suppose, but trust me, that ain't gonna happen. Even if you were to do everything exactly right, the histology of your intestinal epithelial cells, probably would not be resolved in two years. GI docs don't have the foggiest idea how long it takes to heal the damage caused by MC, and/or gluten, if you are gluten sensitive.

I have to agree with him on the breath tests, also. Research has shown that those tests rely far too heavily on the subjective judgment of the operator, and most operators are simply not skilled enough to consistently make sufficiently accurate judgments on test results. Unless the operator is exceptionally skilled, you might as well flip a coin. I can track down research references to verify this conclusion, if you need proof, but I don't have time to look it up right now.

He called me his "problem child" I guess because I do not seem to be making any progress.

Here is where he totally loses my support. Whenever a GI doc becomes frustrated with his own shortcomings, and begins to be annoyed, because a patient is not making any progress, despite trying all sorts of things, an insecure GI doc will try to assauge his or her ego, by transferring the blame to the patient. Of course, in this case, he may have been jokingly referring to you as his "problem child", since he didn't come right out and say that you are the only patient who has ever failed to respond to his treatments. Usually, they will also throw that at the patient, in order to be sure that the patient clearly understands that it couldn't be their, (the doctor's), treatment that is at fault.

All in all, at least he seems to be trying. Hopefully, he will be able to track down and resolve those enzyme issues. He seems to be comfortable dealing with that, at least.

Tex

[Gayle]

Wayne,

Interesting recounting of your recent Drs visit.

FWIW … it is always wise to consider, and recheck, for lab error before assuming anything further with elevated liver enzymes. And, as this Physician reportedly said that these elevated liver enzyme results could also be attributed to a muscle problem, – Did you ask him what he meant by that?

What first comes to my mind is that liver enzymes are exactly where Drs. will check first when a patient taking statin drugs complains of muscle aches and pains. They are looking for evidence of a certain kind of muscle deterioration which some statin drugs have been associated with. I think this condition is rather rare, but is always considered as a possibility with elevated liver enzymes, especially with patients taking statin drugs.

As for his response to your question regarding his reason for his recommendation for frequency of repeat colonoscopy … WELL … Not exactly an impressive answer was it? Will remember this.

I’m glad that you didn’t “give this Doc a rough time“, at least not in what might be interpreted as being in any way combative, or questioning his ability. ‘Attitude’ rarely gets a patient much in the way of consideration.

You know --- Drs are like Mechanics in the respect that they see themselves in the business of figuring out (diagnosing) a problem and then fixing (remedying or curing) the problem. When a patient presents them with a problem that is difficult to figure out and/or resolve, they can - and do - become frustrated, just like any auto mechanic that can’t quite figure out where some strange rattle or and knock is coming from. Probably a poor analogy, ... but you get my drift.

Try not to get discouraged. We all like to throw our own "pity parties" once in a while, but they don't really accomplish anything positive.

Keep us posted,



Gayle

[wkm62]

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[tex]

Hi Wayne,

Aldolase catalyzes the splitting of fructose, and it's found in many tissues of the body, but the greatest concentration of it is found in striated muscle.

We seem to be going in circles, here, regarding test selections.

http://www.labtestsonline.org/understan ... lance.html

Actually, your level is only slightly elevated, and there are a lot of potential causes:

http://www.mgh.org/lab/CATALOG/TESTS/1804.HTM

It's pretty tough to say what your result might be related to, and whether that level is significant or not, at this point Bear in mind that MC can definitely affect enzyme production, and various chemical balances in the body.

Tex

[wkm62]

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[tex]

Well, yes, you have chronic D, all right, no doubt about that, but MC usually involves large volumes of often, almost-totally liquid, D, at least part of the time, (occasionally, it can be more like colored water, or even virtually clear water, during a really "bad" reaction). The extra-noisy rumbling and bloating that we are so familiar with, though, are symptoms unique to the IBDs, and celiac disease. That doesn't normally happen with D from other causes.

Tex

[Gayle]

Wayne,

I guess my #1 question regarding the “going around in circles” feeling that you are having would be --- How did you get see to this particular Gastroenterologist in the first place?

Most commonly people are referred to this kind of medical specialist by their family physician, which is usually either a General Practitioner or an Internal Medicine Specialist.

IF YOU WERE a referred patient, then that primary care Physician should be able to help you try to sort out and understand those labs, as well as anything else you are having trouble understanding from the Gastro Doc. If the primary care Doc isn’t getting information that is understandable to him/her either, then he/she is the person who can and should go directly back to the source (the Gastro) seeking for further explanation on your behalf.

It is always a possibility that a referring Physician does not really know much about a specialist, beyond their specialty designation. Possibly this Gastro was chosen simply because of convenient location, possibly because of a common medical staff coffee klatch relationship, etc., etc., etc..

But most often --- a Primary Care Doc IS INTERESTED IN a patients feed–back regarding their referral choices.

Possibly this Gastro Doc is simply not a good communicator, in which case it would be to your advantage to have another Doc speaking in “Dr. talk language” with him, to both translate for you, and advocate on your behalf.

If this is possible, (?) you might give that a shot. ( after the holiday)

GOOD LUCK!! IMHO -- You definitely need someone locally to give you a hand with this.



Gayle

[Polly]

Hiya Wayne!

Glad to hear the enzymes are down. As Tex indicated, I wouldn't be concerned about the aldolase at this point. Here is my humble opinion: avoid further tests until you have addressed the elephant in the room, the gluten sensitivity issue. And HOORAY for you for biting the bullet and ordering the Enterolab tests! I know it has not been an easy path for you.

As for "problem child", I really don't like to hear that "blame the victim" mentality. It may have been said in jest, but it's inappropriate, IMHO. YOU are not the problem. You HAVE a problem, one that (as Tex says) the doc has been unable to solve. And it's not entirely his fault, as most docs don't know anything about MC/gluten sensitivity. Fortunately, I believe that you will be able to orchestrate remission all by yourself (with help from folks here, of course).

Have fun collecting your stool specimen. LOL!

Love,

Polly