Suprised By Method

[Isla]

I was kind of suprised while thumbing through the forum that there was never a poll done on the method of diagnosis. The reason I am curious is because I was diagnosed by a newer kind of blood test, even though a number of previous types of tests showed me healthy as an Arabian horse. According to the standard tests I wouldn't be diagnosed with CD. I wonder how you guys feel about this new test vs. the standard endoscopy procedures.

 

[soupdragon69]

Hi Isla,

Do you know the name of the new test? Hard to comment on it without knowing..

 

[Isla]

It is a blood serum test for specific anti-bodies, it is usually used to differentiate between UC and CD but lack of either anti-body would indicate no disease. But this isn't a very reliable test because the percentage of false negative is high. But the chance of a false positive is slim.

There are many tests out there to help diagnose CD and UC. Barium Swallows, Barium enimas, colonoscopy, upper endoscopy, pill camera, the serum blood test. I am just curious to find out what test was the deciding factor of diagnosis for everyone.

 

[BWS1982]

One problem is one of my GI's has stated that the antibody test (Prometheus does mine) can, in about 30% of cases, show both antibodies, and I've confirmed it with him as well, that you CANNOT have both Crohns and UC. Both my GI's (yeah I've got 2 now) state this. The reason you cannot have (and I discussed this with Pennywanna) both is that the diagnosis of one is seperate from the other. Same way you're either dead or alive (clinical), not both.....The reason that her sister may have shown "both diagnosis's" is because, and I talked to one of the top GI's in the country on this, when Crohns is present mainly or solely in the Colon, then UC antibodies can appear on the test along with Crohns antibodies. That does NOT mean you have UC, it simply means you have Crohns and it's colitis in nature, specific to the colon in area. UC and Crohns are mutually exclusive, and one diagnosis rules out the other in a correct diagnosis.

So my longwinded point is that Crohns for me was diagnosed in a colonoscopy, along with blood tests and symptomology, as well as biopsies, and the antibody test showed both simply because of the Crohns location.

 

[Isla]

Laugh, I was wondering where you were going with your reply. That is actually very interesting to know. My colonoscopy was perfect and it was perfect the last 2 times they suspected CD (spanning 10 years.)

BTW- I could be called an Illini

 

[BWS1982]

You could be called an Illini, or you would prefer not to be, so you limit the specifics to "an appartment"? ha

If the water from flooding takes you down the Mississippi soon, you'll be an Arkansas resident.

 

[Isla]

Our-Kansas, never been but if the flooding comes up any higher I will be floating down the river Another reason to not like Illinois.

 

[Kev]

Well, I don't want to get into an argument with a doctor 3rd party about whether one can or can't have both UC N CC.. I know that there is a percentage (about 10 percent I think) that is loosely labeled indeterminate.. I know that my tests show that I could have one or the other... Now, if so, then either you can have both else one is a false positive. I know that my visible symptoms under colonoscopy show definite 'classic' indications of both. I have comprehensive, contiguous inflamation of the colon... not blotchy like crohns, but not uniform like ulcerative. And the issues with the liver, pancreas and gall bladder seem to be crohns.. but the lapro approach meant no full gall bladder for examination... just piece-meal biopsies that show inflammation, not cause.

As a child, I had chicken pox and reubella (German measles) back to back, tho the doc at first said that was impossible. i would think that one opportunistic nasty bug finds a home in your gut, then a close relative nasty bug moving in right next door would be rare... but impossible? I dunno. if conditions are good for crohns, then why not ulcerative too? I mean, folks get IBD and IBS in the same body. I think that I'd hesitate taking your docs opinion on this as the last word on the topic until such time as someone proves one way or the other.

 

[FruitLoop]

Same way you're either dead or alive (clinical), not both..... .

I don't know about that - there are days when I really feel I must be both:tongue:

Regarding the UC + CD debate my understanding was that if the scabby innards are just in your colon it will be UC if the scabs go further up it's CD. Although CD *could* flare just in the colon. A biopsy would confirm CD. The biggest difference is that if an UC sufferer had their colon removed they would be cured - a cD sufferer woud not - their scabby innards would jsut appear somewhere else.

When i was diagnosed via an endoscopy they said UC but then a colonscopy showed it actually went further up and a biopsy showed CD.

Anyway back to the OP - my diagnosis was via endoscopy - they did all sorts of other tests which showed nothing and then the endoscopy showed ulcers.

 

[Kev]

No, if it is just in your colon, then it is a form of colitis.. ulcerative, crohns colitis, or diverticular associated colitis, and I think there's even a couple of others as well. I wish they'd been able to work thru the ileo secum (sp?) valve to see inside of my ileum... inflammation there woud conclusively prove I have crohns disease, not a colitis by itself. Now, a person with UC can have their colon removed, and then its pretty much case over... barring complications from their ostomy... But, a person who has crohns' colitis.. well, if they remove all of the colon, no more colitis... BUT there is a chance that it was crohns disease,,, OR with the colon removed, the crohns reappears in the remaining GI tract. They say that is rare... I don't have any numbers on the rates of recurrence/spread.
Another apparently telltale symptom that distinguishes UC from crohns is that, if you develop a fistula, then it has to be crohns. They don't occur if its just UC

 

[Guest]

Kev - thank you! i've been told i've have Crohns Disease, and then Crohns Colitis on & off since diagnosis years ago - never quite understood fully. now i do - it makes perfect sense. only my colon was ever affected, and i have never had the other symptoms such as mouth ulcers, skin ulcers etc that some other Crohns sufferers have, nor fistulas/abcesses, although i do have the achy limbs and exhaustion.

i love this forum

 

[Isla]

I think it loves you back - but you didn't hear that from me so don't go around telling the forum I told you

/high school reminiscing

 

[Isla]

Hey Kev and Benson - Read this PDF article.. it shall interest the both of you. (Maybe) Be warned it is technical. (Though I love this kind of stuff, it isn't for everyone.)

http://www.pubmedcentral.nih.gov/picrender.fcgi?artid=1727156&blobtype=pdf

 

[Kev]

Interesting... I wonder what would happen if they trialed it on a group of those 10 - 12 % who are indeterminate. I guess at times I lose perspective. Whenever I think about the research into IBD, I want them to devote everything to finding the cure.. overlook that research that yields an effective and definitive diagnosis tool would be a blessing too. Guess I learned that part of me is self-involved/greedy.

Anyway, great post. Awesome job for a newbie.. Thanks everso

 

[Isla]

My doctor actually keeps suggesting I go into medicine, I have quite the knack / love of it.

But with some of the research I have done in the past day or so these "trials" (the one referenced not being the only trial) were done with the purpose of determining IC into either CD or UC. I assume GI doctors have records of those given the test and their subsequent results. What I find interesting is that this test came out of the sole need to diagnose these individuals pretty much left in limbo. Luckily for me my GI doctor saw the research and the implications that this could diagnose UC or CD in cases that most other tests showed as clear.

In 163 control (healthy) specimens only 1 had a false positive (and who knows they could have CD with little to no symptoms - a stretch but hey.) Further reading into the study determines that there is not yet a standardization for detecting ASCA and ANCA. Finding the best way to utilize this test could increase the correct diagnosis and may give way to a sub-set under each disease.

 

[BWS1982]

No arguments Kev, I'm still just trying to understand, this is a discussion IMO.

Interesting link. I understood it for the most part, despite the Medicalese. I didn't know they'd found correlations between age and location of inflammation. Ie: the small bowel was found to be involved in younger diagnosis'.....

Still, if I understand, they speak on both UC and CD as if they're two independent medical entities, and cannot be both present, as that was the whole point of much of the research....checking for each antibody. They stated "several lines of evidence suggest that CD and UC are different diseases"....and from then on speak seperately of the two never mentioning a cross diagnosis, only seek to find a way to distinguish the two.

I really wanted to make sure I understood this as surgery hinges on proper diagnosis.

 

[Isla]

Yes, you understood correctly. Older trials done saw a correlation of a patient diagnosed with CD but with UC symptoms test for both UC and CD. The trial I posted has newer data and a different method of testing the specimens that found no clinical difference in the few CD patients that tested positive for UC. According to their data UC and CD are two different conditions, but they didn't specifically test those who had CD but with UC symptoms. (I will try to find something on that later, have a GI appointment here in a bit.)

 

[Kev]

Well, I suspected that these were two different diseases... Simply because they've such different methods of attacking the GI tract. Like, crohns doesn't hit all the surface of the GI tract, it only hits in blotches.. but it burrows deep into the tissue.. UC is different, it typically covers as much ground as it can, uniformly, but it only attacks the surface layer. I would think that developing both is EXTREMELY rare.. sort of akin to being struck by lightning twice. But that does happen.. think there's a Park Ranger in the US who has been hit multiple times. So, tho I doubt it accounts for the 10 - 12% indeterminate group who've got symptoms of both.. I would be pleasantly surprised if 'they' conclusively had evidence that you "CAN'T" under any cicumstances develop both UC n CC.
A lot of the methodology for treating both is similar, but the surgery option is not a cure for CC or CD; and they say 5-ASA is better for treating ulcerative VS other forms of colitis.. So, tho they both are forms of IBD doesn't mean they're exactly the same. I would also speculate (pure wild assed guess) that if you've got UC, it would be extremely difficult if not down right impossible to develop a case of CC.. simply because the UC covers most of the total overall GI tract. It would limit or eliminate any CC from getting a foothold within your GI tract.