List of "truisms" for MC for one's doctor

[Gabes-Apg]

Tex
we are a bit sick of rain and floods over here, i will send the rain clouds your way..............

[tex]

Gabes,

Thanks, we can sure use the rainclouds. With 8,320 miles to go, (13,389 Kilometers), I hope they don't rain out before they get here.

Tex

[sarkin]

Mary Beth,

Thank you SO much (twice, since you were so kind to post it where I wouldn't miss it). I did realize that the NY state laws would affect me here (in fact, I drove my Enterolab test kit to a UPS drop very near one of these practitioners... so it can be done!).

Would you recommend waiting till I get my Enterolab results? I have this idea I should wait to start LEAP until I have been GF/DF/SF/*F for longer, but I'm not sure where I got this notion. I am also intrigued by the coming MRT 5000 (maybe that's worth waiting a little for, too).

Again, thanks so much.

Love,
Sara

[mbeezie]

Sara,

Waiting might be reasonable. I'd like to point out that Polly thought MRT was the icing on the cake . . . .she was doing OK but now wioth MRT she fine tuned everything. It's a much more broad based specific test. If Enterolab doesn't provide enough releif then MRT is the way to go. The MRT 500 is supposedly due out in May or June, which is fast approaching so I would wait for that test if I were you. I am waiting until then to retest.

Mary Beth

[sarkin]

Thank you so much, Mary Beth. I really appreciate your generosity with your knowledge, experience and expertise. It sure is hard to become one's own "expert" in MC! Polly's example is very much in my mind, for just this reason.

I feel really lucky with my timing of getting sick; the new Enterolab tests came out just in time for me, and I'll get the benefit of the new MRT as well. I'm sure I will get some benefit from the Enterolab tests, even if it's less specific and less detailed. I am going to need a lot of patience to get this figured out, so I can certainly wait till May/June. I will be interested in what you learn from your retest.

Again my heartfelt gratitude,

Sara

[sarkin]

IOW, I still did not have completely normal bowel function even in the face of a normal biopsy - it was OK most of the time but not every single day like now. I never would have guessed the certain seemingly "benign" foods I was sensitive to (yellow squash, cucumber, carrots, lamb, etc.) without the MRT.

Polly, I am riveted on this - would it stretching a point to say that "microscopic colitis" is not entirely the right name, since you still 'have' whatever this is we all have, though you no longer have visible signs under a microscope? I am thinking particularly of those who haven't been diagnosed, despite a biopsy. I do believe that often that the biopsies weren't done in enough (or the right) areas, but perhaps someone is suffering without diagnosis because they really don't have those particular pathological changes (yet?). Maybe there's something else that could be looked at (or looked for) that would show up in another sort of testing - perhaps even soon enough for someone to avoid developing the microscopic signs of LC or CC, if only one knew where to investigate.

I guess I'm wondering whether it's possible for this condition to pre-date its evidence showing up in the colon, in the same way a celiac sufferer may not yet have villous atrophy in the small intestine.

I feel as though I'm not asking the right question... what do you think this means?

Thanks for thoughts, and any all.

Love,
Sara

[tex]

I guess I'm wondering whether it's possible for this condition to pre-date its evidence showing up in the colon, in the same way a celiac sufferer may not yet have villous atrophy in the small intestine.

I'm pretty sure your thoughts are on target. Though I never suspected them at the time, (of course, at the time, I wasn't even aware that a disease such as MC even existed), looking back, (several decades), I can see health changes in my life that were very likely the early stages of the development of this disease, and even if I had been biopsied at the time, I doubt that any of the classical markers of MC would have been evident. Of course, the closer I came to the time when the obvious, (typical), symptoms presented, the more likely it became that those markers were developing, and might have been detectable.

Maybe there's something else that could be looked at (or looked for) that would show up in another sort of testing - perhaps even soon enough for someone to avoid developing the microscopic signs of LC or CC, if only one knew where to investigate.

Clearly, that could be the case for any disease, since researchers try to isolate unique markers for any given disease, and once they are satisfied that they have a reasonably "definitive" set, they assume that they have the disease "pegged", and they use these markers to describe the disease, and to specify appropriate diagnostic criteria. Very rarely, (virtually never), is the official medical description of a disease updated, even when new information becomes available. (MC is an excellent example of that.) It seems as though those original descriptions are chiseled in stone, because once the description is on record, it is rare for the original description to be changed, even if additional, or more definitive markers are discovered later.

Presumably, that original documentation is never updated, because there's no mechanism in place for doing so. Usually, the most obvious markers will turn out to be the most important, but occasionally, someone discovers improved ways of diagnosing a disease, (by identifying more appropriate markers), so it's certainly not impossible that someone might someday find a better way to diagnose MC.

There are already known markers with a relatively high degree of reliability that could be used in lieu of a colonoscopy with biopsies, (based on blood tests), for diagnosing inflammatory bowel disease, but in medicine, "gold standard" diagnostic criteria are almost as difficult to change as the original disease description. I'm sure you're going to ask, so here's an example of using blood tests for diagnosing IBD. There are other tests available, also.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1755933/

Tex

[Gabes-Apg]

Tex
isnt this where the T-cells and the immune reaction kicks in?

Once diagnosed alot of us can recall some symptoms that were there well before the chronic symptoms.
once the immune (and ?Adrenals) get pushed to overload then the chronic reaction happens.

[tex]

isnt this where the T-cells and the immune reaction kicks in?

Probably. At least I agree that it's almost surely the point at which the Treg cells, (regulatory T-cells), begin to lose their ability to modulate the killer T-cells, and so the Tk-cells over-propagate.

Tex

[Zizzle]

For what it's worth, I had extensive blood testing 6 years ago (when IBS symptoms were aparent), and again around the time of my LC diagnosis. None of the markers mentioned in the IBD article were ever abnormal. ESR and CRP were surprisingly low, despite obvious signs of active autoimmunity. High ANA, ASMA and Rheumatoid Factor have been the only abnormalities (and low vit D). I wish they had checked ANCA and anti-endomysial antibodies though, as i think they can be present in IBDs.

[sarkin]

Tex, that's really interesting - I wish I had my old medical records. It really struck me when I read the article that these were such simple tests, and though they weren't absolute, might easily help someone reach Dx more quickly.

The only thing I remember being told about bloodwork was that my eosinophils were elevated.

I certainly had "pre-symptoms" - some of which I've only considered connected since I went GF/DF/SF/*F and they started going away.

Very interesting article, Tex - thanks.

Zizzle, my ESR & CRP were always low/normal, too. The body really works to keep things on an even keel, I guess, even as the crisis is brewing.

--Sara

[Kari]

Hi Rich,

It's so good to see an update from you again, and such a good one - congrats. !!! I have come to believe that the mental attitude with MC is equally important to the physical. Can't tell you how many times I've had to "talk myself into" feeling better in the midst of having physical symptoms .

Love,
Kari

[hoosier1]

Amen to that Kari. Trying to keep the right state of mind is huge. Seems you to are doing well in that respect.

Can't recall who asked if I am still taking imodium. The answer is no. But I do carry it.

Imodium isn't very kind to me but I will use it in a pinch. Lomotil works better.

Going to Vegas next week for a seminar and planning to rent a Harley and ride into abyss. Looking forward to that.

Rich

[Lesley]

Questions:
MRT?
Is SF salt free?
What is DF?

Learning the lingo.
I LOVE the list. I am printing it and putting it on MY fridge.

[Zizzle]

Sorry to use so many acronyms. DF is Dairy Free, for those of us sensitive to casein protein in milk (most of us). SF is Soy Free, again, a large proportion of us (some can eat small amounts of fermented soy, as in gluten free soy sauce). We are generally not opposed to the use of salt here. I for one add it to almost everything because it tastes good and helps manage my low blood pressure.

MRT is Mediator Release Testing, a blood test performed by a LEAP trained dietician and sent to a lab in Florida, which tests your immune reaction to 150 foods and substances. It tells you which foods you react to and how seriously you react to them (red, yellow, green). Many here are planning to do the MRT test next month because they are updating the test to show exactly which types of white blood cells are causing the reaction (lymphocytes, eisonophils, neutrophils, etc). That piece of info is not necessarily helpful for the patient, but I'm curious to know, since i know lymphocytes are involved in my form of MC (LC).

I hope this is helpful!