beave said...
The Prometheus test, by itself, generally isn't enough to diagnose Crohn's. At some point either scope results or MRI results are needed, preferably biopsies too. But with a lot of symptoms and a positive Prometheus test, it should be enough to convince a doctor to keep looking (ie, keep doing scopes and scans) in a person who has symptoms but hasn't yet been officially diagnosed.
Their test looks at a few things: a few gene mutations linked to IBD; inflammatory markers like CRP; the presence of certain auto-antibodies (that happen more with UC, less with Crohn's); and antibodies to certain bacteria and antibodies to yeast.
It takes more than any one of those for the results to be positive. They have an algorithm where they search for patterns in those results to determine whether you might have UC, Crohn's, or neither.
They've done a lot of their own studies that show the test is around 90% accurate, both in terms of specificity and sensitivity, with hundreds if not a few thousand people tested.
But it's not accepted by a lot of insurance (and govt run insurance) because those results have not been verified by any independent third parties.
So it's not at all a "gold standard" (unless you work for Prometheus!!, who, by the way, is very near where I live and I've met some people from there).
But like I said, IF it came back positive AND you have symptoms AND every other test it negative, it should tell a doctor not to blow you off entirely, but to keep the possibility of IBD on the table and to repeat tests like scopes in due time if symptoms worsen or continue.
Beave, firstly, thank you for your valuable input on my questions/concerns. Unfortunately they don't end there (they don't even begin there, actually) so I do have quite a few more questions up my sleeve I hope you don't mind me asking in a rather jumbled mess here.
Absolutely - I know from extensive research that Crohn's requires multiple tests and opinions sometimes, for a concrete diagnosis. I also know that is is unfortunately one of the hardest conditions TO diagnose because of its nature. It's quite perplexing how it has such a strict, scientific definition and yet it is a disease so individualistic and unique.
Have you ever had the prometheus test done? Are you saying it is more conclusive in Colitis patients as opposed to Crohn's? My GI first suspected I had UC.. He even said it could be a microscopic strain of the disease - rare, but he actually treats a few patients with this specific subtype. I hadn't ever really thought I had UC in doing research, but you never know and i'll take anything at this point. I'm still not really convinced because of the clean colonoscopy.
Now for the big question.. (Sorry, I don't actually know if you have UC or CD so if you've got the former & don't have much CD expertise I apologize greatly!!) I know Crohn's is notorious for being a "skip" disease (I am sure you know what I am referencing here) so is it at all possible the disease didn't show even with the pillcam because of this very reason? I know a fatal flaw of the pillcam is that it cannot perform biopsies.. Is microscopic Crohn's a thing? As in, it couldn't have been diagnosed without a biopsy of my small bowel (intestines)? Remember, I did have three biopsies during my colonoscopy however, they were only of the large intestine/colon and none were taken from the small portion of the terminal ileum he explored. Now that REALLY pisses me off even thinking about
it now just a month later. I wasn't really looking to get put through that BS again this soon, plus, I have no idea if insurance would approve of another scope this soon thereafter & there are potentially severe health risks carried with repeated colonoscopies. I just want to know how possible is it they keep missing it? Or, I wonder, maybe (even though my symptoms now seem debilitating to ME) i'm only in the "early stages" of the disease manifestation? I've had GI issues since last August, bleeding & diarrhea didn't begin until NYE so, basically January. I just fear one day this will all become so severe and progress overtime that I'll eventually receive a diagnosis but with terrible consequence.
I do also have sores in my mouth, which I know are a rare but present symptom of Crohn's disease. I had showed my GI doctor & he looked at them again while I was sedated (luckily? I had ulcers in my mouth while undergoing the colonoscopy so my MD could view them in realtime). I wish he could have biopsied them, but he keeps insisting I see an ENT for them so THEY could perform a biopsy "if needed"??! The GI system is inclusive of the MOUTH to the anus, so i don't see why HE couldn't perform with the biopsy HIMSELF?? When I was sedated in the hospital would have probably been a convenient time!! Anyway, that was one month to the day today, and I already have had a mild ulcer in that time & have yet another severe oral ulcer AGAIN. UGH.
I don't want to sound hung up on a diagnosis but I can't take the prospect of IBD off the table yet. I just can't. And I personally feel my symptoms are far too advanced, too severe to be any kind of IBS bullcrap. Any time I've looked up anything it said bleeding is absolutely NOT a sign of IBS, neither are low grade persistent fevers.