Prometheus Testing

[new2crohnsinVA]

Has anyone had this done? I have an offer from my GI to have the testing done for free, but I'm worried about the genetic testing.

I have two small kids and worry about the implications for them for my results. I understand that skipping the test won't protect them as their DNA is already written. I'm worried about an insurance company using my results against them in the future.

I was told the genetic marker only shows a tendency and a severity not a certainty of future diagnosis. There are laws to protect genetic screening for cancer, but I don't know if they are general enough to cover all such genetic testing.

What are your thoughts?

 

[carolhew]

I had the testing done and tested negative for the markers. However I was diagnosed with Crohn's based on results from a CT scan, colonoscopy and biopsy results. My GI said the test is not that reliable. People without Crohn's can have positive results.

The insurance issue I don't have any experience with. I would hope that they would not be allowed to access your medical records if they were considering insurance for one of your children. But with medical records going electronic who knows who will have access legally or not.

Carol

 

[tiloah]

Are you talking about the IBD test or the celiac test? As far as I can glean, the IBD tests are not genetic. The celiac tests are.

 

[ekay03]

I had Prometheus Testing, but to tell you the truth i never did and still dont know what it actually is. All I know is that the GI ordered it. So I had it done along with my regular blood work

 

[brghtii]

I had the testing done and tested negative for the markers. However I was diagnosed with Crohn's based on results from a CT scan, colonoscopy and biopsy results. My GI said the test is not that reliable. People without Crohn's can have positive results.

The insurance issue I don't have any experience with. I would hope that they would not be allowed to access your medical records if they were considering insurance for one of your children. But with medical records going electronic who knows who will have access legally or not.

Carol

I tested negative also and have crohns. I was tested in 2004.

 

[MendyVarner]

The new test out from Prometheus Lab is supposed to be far more accurate than the older test run by them. I had the new one ran and it's supposed to be able to distinguish between Crohn's and UC. Mine came back positive for Crohn's. I would have it ran. It was the first test to show my Crohn's...which led to the pill cam that finally found it. (I had the usual colonoscopy, small bowel follow through, upper scope..and they couldn't find it)

So good luck, and at least consider it. I did get the invoice from Prometheus and it is a 750.00 blood test...luckily my insurance covered it!!!

 

[Miss Underestimated]

I had it too. I have to agree about the insurance issues, though. Eventually, they will put all medical records online, and, while they don't currently intend for genetic tests to be available for insurance companies, eventually they will be. I have lived on this planet for 67 years, and that's just how things go.


Time will pass, things will change. I look at people now putting their entire lives out on display and I cringe, because things do not ever stay the same. Your information is a commodity, it's for sale, and you are not the one who's going to get paid.

 

[Mayflower537]

I had the IBD 7 test a couple of years ago and tested positive. No Crohns was found on any scope, tho. My test only was for antibodies. I think the new one tests for inflammatory markers, genetic markers, and the antibodies. It's not cheap, though, so if your GI is offering it to you w/o cost that would save you some money. I don't know about the DNA thing - just b/c you have genetic markers wouldn't guarantee that your children would, would it? Ugh, so sad that we have to think about things like this.

 

[Moggs]

Search for Crohn's

The new test out from Prometheus Lab is supposed to be far more accurate than the older test run by them. I had the new one ran and it's supposed to be able to distinguish between Crohn's and UC. Mine came back positive for Crohn's. (I had the usual colonoscopy, small bowel follow through, upper scope..and they couldn't find it)

Mendy,
My test came back positive for Crohn's also and like you I've had a colonoscopy and endoscopy with negative results. I've been on lialda for over 4 months now and my symptoms are getting worse. I'm starting to get specks like black pepper (blood) in my stool. Once they did your pill cam did that influence your treatment? I've had a full nissen fundoplication for my hiatial hernia which made the opening into my stomach very tight. I'm concerned about the pill cam getting in. I would give it a try if it made a difference in treatment.

Moggs

 

[Sparkle2012]

I had the IBD 7 test a couple of years ago and tested positive. No Crohns was found on any scope, tho. My test only was for antibodies. I think the new one tests for inflammatory markers, genetic markers, and the antibodies. It's not cheap, though, so if your GI is offering it to you w/o cost that would save you some money. I don't know about the DNA thing - just b/c you have genetic markers wouldn't guarantee that your children would, would it? Ugh, so sad that we have to think about things like this.

Hi Mayflower - so they tested positive for Crohns on the prometheus and pronounced you a Crohn from that point? I am yet undiagnosed -- having that test in march after steroid therapy.

 

[Sparkle2012]

Hi all - I tested positive on Prometheus IBD sgi and received, after one year, a diagnosis of Crohns. I still don't believe I have it. I think she said it was something like an 88-93% probability for Crohns. I wish I had asked her more. These doctors seem so rushed, and keep talking so you can't get a word in. You know how that goes. Based upon that they are giving me Pentasa 4 times a day as part of the step up plan. Now I'm thinking....I have no symptoms and really haven't had any symptoms for years other than strictured bowel which caused the issues and they now are removed. I feel great. I don't know what this step up plan means -- I tought it meant if it gets worse...I will step up which I'm ok with. But if that means I'll try the Pentasa for x months and then we will move up to something stronger and gradually get the big gun biologic....I'm not ok with that. Does anyone know - is that how it's done? I have zero symptoms since surgery in November 2012.

 

[Jmrogers4]

Sparkle2012, They diagnosed Crohn's just from the Prometheus? My understanding is that it just shows disposition to Crohn's and Crohn's would be confirmed through biopsies taken during colonoscopy.
My son had this test but it was after he was diagnosed with Crohn's for several years and his GI wanted a bigger picture of his disease and to see if he had the NOD2 markers for stricturing/fistulizing. Did yours show the NOD2?

 

[scarter]

Dont know what direction to go now I was diagnosed with uc 4years ago now i had the ibd bloodwork and itshowed positive for crohns but colonoscopy and pill cam was negative

 

[SupportiveMom]

Was the colonoscopy 4 yrs ago positive? Or has it always been negative?

 

[JenS]

I had the test done YEARS ago, like 12 years ago. It showed I "leaned" more towards Crohn's that UC, but still inconclusive. Weird.

 

[Shadow83blk]

I was recently hospitalized for abdomen pain. I was told that a small part of my small intestine was inflamed so IV only for 24 hours, then a seconf CT scan with contrast. Many causes were suggested including Crohn's (I also have the Brca gene) but after the Scan my doc said the he was 99% sure that it was not Crihn's or Divertichlitus. At my 4 week follow up I was still having slight cramping and he suggested the Promethius test but @ $700 (possibly $200 if I qualify) and after a large hospitial bill I could not afford it. Has a colonospy and endo with biopsies and all came bacl negative. Its neen a while but now have pain and cramping along with gas and constipation for the past 2 days, not debilitaing but annoying. Now I am wondering if I should have the test?!?! I have no other symptons other than the bloated feeling, discomfort and more gas than usual; no blood, diarrhea, vomiting, neasua, etc. i am just wondering if the test is worth it or does my GI get something out of the test.

 

[SupportiveMom]

$700 I'm not sure I'd be in a rush to spend that either. I'm told here on Canada kickbacks for the meds & tests are illegal but I'm sure it happens and you can't rule it out completely but try not to let that be a factor in your decision. What matters is you getting answers to know what type of treatment is best.

If it isn't crohn's shadow83blk what is your doc suggesting it is? Biopsy coming back negative would make me think twice about spending the $700.

 

[teeny5]

My colonoscopy showed Crohn's but the Prometheus test came back negative. GI said it's not reliable. For some it is helpful, but for me it was not.

 

[aideen33]

I had the Prometheus test. My initial GI said that the colonoscopy looked like Crohns but location was more like UC so he ordered the test and the only thing I was ever told about it was that it indicated Crohns, hence my official DX of "Crohns Colitis"

 

[bunnygirl]

Hi everyone! I was diagnosed with Crohn's after a small bowel resection. At the time it was a diagnostic laparotomy - ended up removing 1 ft. of jejunum as the "worst part". Pathology diagnosis was "consistent with Crohn's". Then had 2 double-balloon endoscopies to scope everything and tattoo the area to be removed. All problems were in the upper small bowel. A second surgery removed 2 more feet of small bowel. The surgeon said "so are they still calling it Crohn's?" Pathology again said consistent with Crohn's. Had Prometheus test done last week... It says I have Ulcerative Colitis. There has never been any problem noted in my colon. I've never had diarrhea - only constipation. Now we, the doctors and I, are more confused. There has never been active inflammation spotted, just massive scarring, strictures and adhesions (before I ever had surgery). We had hoped the Prometheus test would shed some light, but is has just added more questions. Anyone else have this problem?