Anyone want to compare Prometheus 7 IBD Serology results?

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killerzoey
Regular Member


Date Joined Jul 2007
Total Posts : 161
   Posted 10/18/2007 4:07 PM (GMT -7)   
I am scrutinizing the small print on mine and it's really bizarre the things it tells you.

If I'm reading mine correctly, I have a-typical Crohn's markers, and I have manifestations that are more UC. Oh...and severe disease is indicated. Now, I know I'm not reading it correctly and plan to have my new GI interpret it for me.

Is it amazing that the Dr. that originally ordered this test didn't even bother to look at all the fascinating stuff it tells you? He just looked at it and said "You have Crohn's".

Here are my results. Everything is normal unless otherwise indicated with parentheses:

ASCA IgA ELISA: <12.0
ASCA IgG ELISA: 27.6
Anti-OmpC IgA ELISA: 17.3 (Upper limit of normal is 16.5)
Anti-CBIr1 ELISA: 5.6

IBD Specific pANCA:

AutoAntibody ELISA: 28.1 (roughly double the upper limit of normal)
IFA Perinuclear pattern: Detected (normal is "Not Detected")
DNAse Sensitivity: Dnase Sensitive (Normal is "Not Detected)

Now, the interesting thing is that the first two values are normally elevated in Crohn's, and mine are normal. The Anti-OmpC value which is elevated is associated with "a unique subset of patients who have more severe form of CD"

The last 3 values, which are all abnormal, are more for UC. The last one just says that a person with UC is more at risk of pouch-itis if this turns up DNAse Sensitive. (But I don't have UC?)

So basically I have UC, but it's SEVERE Crohn's. (?!?!?!?!??!) ***?
36 year old mother of a fabulous toddler. Major symptoms began after her birth, with widespread pain/stiffness and mucus in stool. Had seen blood in stool for years prior but believe (and still suspect) hemorrhoids and/or fissures for this particular manifestation.

Diagnosed with Crohn's July 2007. The only visible areas of inflammation via scope were my stomach, rectum, and somewhere in my colon. Pill Cam, SBFT, CT Scan all normal. I think I may mainly have colitis.

STARTED LOW DOSE NALTREXONE SEPT. 26TH www.lowdosenaltrexone.org. Also see: http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&cmd=Retrieve&list_uids=17222320

On Specific Carbohydrate Diet (SCD) since late July and seeing improvement in "output" quality and hopefully therefore absorption. Taking SCD legal supplements: B vitamins, Folonic Acid 800mg, EnZym Complete DPP IV Aid by Kirkman.

Current biggest complaints: LRQ fullness and burning now gone. Gastritis symptoms are also quiet now. What was horrible right hip and low back pain has subsided about 60%. I'm pretty much feeling normal but in no way think I do not have more symptoms in my future.


Mormor Vicky
Veteran Member


Date Joined Mar 2007
Total Posts : 684
   Posted 10/18/2007 6:58 PM (GMT -7)   
Just looked up mine.

ASCA IgA ELISA: <12.0
ASCA IgG ELISA: <12.0
Anti-OmpC IgA ELISA 4
Anti-CBir1 ELISA: 73.8 (normal should be below <21.0)

According to the Prognostic Information on the Anti-CBir1

• Assay values above reference values were associated with small bowel, fibrostanosing and internal penetrating disease.
• Assay values above reference values occurred more frequently in pANCA positive CD patients than in pANCA positive US patients.

I'm not sure what fibrostanosing and internal penetrating disease mean. I guess that mean fistulizing Crohn's. I have that but I don't has small bowel crohn's.
Vicky / 47 years old
DX'd with Crohn's during a resection August 2006
DX'd with Steriod induced Diabetes November 2006
Considered in Clinical remission but have minor signs of disease activity
 
Daughter (26) also has Crohn's since she was 12.
 
Currently on 4000mg of Pentasa only for Crohn's
No longer able to take 6-MP because of Bone-Marrow Suppression
Cymbalta, Metformin, Lipitor


PaulieV
Regular Member


Date Joined Sep 2004
Total Posts : 152
   Posted 10/18/2007 11:22 PM (GMT -7)   
Wait till I post mine... My Gi at Mt Sinai told me that the Prometheus test is a bunch of bull. I had a Series 6 taken and it showed positive for crohns. Negative ASCA IgA ELISA &
ASCA IgG ELISA with the Anti Ompc at 74.00. The funny thing is that the newer Series 7 stated that i was negative totally but my Anti Ompc was still out of range in the 60.00 range. My doc said that one says crohns and the other says no crohns. Prometheus make up your mind. He stated that since my Anti Ompc on both were elevated there is a strong possibility of IBD but then again Prometheus says no. ??????? Useless test maybe...... These are just assays of the general public kinda like the gallop polls that are taken for presidential candiates. X amount of people with these markers fall into catagory A, X amount of people fall into catagory B, get the idea. My doctor at Mt. Sinai know his stuff as he is an immunologist too.

Adria132004
New Member


Date Joined Sep 2007
Total Posts : 9
   Posted 10/19/2007 2:41 PM (GMT -7)   
I had the Prometheus test done and just got the results back today. Positive for Crohn's. I don't know anything more specific than that, but will get a copy of the report at my next visit on 10/30.

This has all been very surreal for me as I am not sick, have very few symptoms, and initially thought I was going to the surgeon for hemorrhoids, which in fact turned out to be multiple fissures, which made my surgeon suspicious of Crohn's despite the lack of other obvious symptoms like abdominal pain or diarrhea.

I will be very curious to get my specific results and compare with the numbers you all have shared here.

rootsmith
Veteran Member


Date Joined Jan 2004
Total Posts : 597
   Posted 10/19/2007 2:58 PM (GMT -7)   
Mine were <12.0 for ASCA IGA AND ASCA IGG ELISA which is well below the marker and 2.4 for Anti-OmpC IGA ELISA which is also negative. These are the markers for CD

Neutrophil Specific Nuclear Autoantibodies (formerly p-ANCA)
Neutrophil Autoantibody ELISA 12.8 which is slightly above the reference value of 12.1
IFA Perinuclear Pattern detected (normal is not detected)
DNAse Sensitivity detected (normal is not detected)

Interpretation reads that this is a pattern most commonly associated with inflammatory bowel disease (there are other diseases that cause elevations) Observed most frequently in UC rather than CD

Positive Predictive Value of IBD = 95%

The doctor that ordered this test ignored the results, as has every single doctor that has looked at it since then. They always say "we don't know what these low values mean" Now, the really really interesting part of all of this to me is that I also have a low level of neutrophils in my peripheral blood (my WBC count has been running between 2,000-3,000 with a decrease in neutrophils causing the problem) I just had a bone marrow exam which was normal. It would seem to me that there is a connection here. No one can give me an explanation I can understand and believe other than "there's no connection" (which I find hard to believe) Seems kind of coincidental to me.

My symptoms are more typical of CD (location undetected at present time) and none of UC
10 years, many tests, 3 gi doctors, Pentasa 1000mg 3x day
diovan, simvastatin and now trying good ol' zoloft


beave
Veteran Member


Date Joined Mar 2007
Total Posts : 644
   Posted 10/19/2007 4:26 PM (GMT -7)   
ASCA IgA ELISA: 16.0
ASCA IgG ELISA: 18.8
Anti-OmpC IgA ELISA: 5.9
Anti-CBir1 ELISA: 9.2
Autoantibody ELISA: <12.1
IFA Perinuclear Pattern: Not Detected
DNAse Sensitivity: Not Detected

PaulieV
Regular Member


Date Joined Sep 2004
Total Posts : 152
   Posted 10/19/2007 7:18 PM (GMT -7)   
Rootsmith,
Like I said in my last posting....the Prometheus test is not accurate.....mine have been off at three diferent times and this is a quantitive test. Meaning that it is a pool of many people who have thes specific markers for IBD. Mine was very ard to find as a matter of fact it was only my Anti-Ompc that was high and nothing else. The series 6 test said crohn's 95% positive based on my high Anti-Ompc reading. When I had the series 7 Prometheus said no IBD but my Anti-Ompc were around the same levels as the first. Be realistic as this company owns the drug Enterocort....get my hint...kind of funny how there is a correlation after the series 6 test Prometheus actively sought out to by the rights to Enterocort.

killerzoey
Regular Member


Date Joined Jul 2007
Total Posts : 161
   Posted 10/20/2007 12:34 AM (GMT -7)   
beave said...
ASCA IgA ELISA: 16.0
ASCA IgG ELISA: 18.8
Anti-OmpC IgA ELISA: 5.9
Anti-CBir1 ELISA: 9.2
Autoantibody ELISA: <12.1
IFA Perinuclear Pattern: Not Detected
DNAse Sensitivity: Not Detected



So...for you, a slightly elevated ASCA IgC is the only indicator of Crohn's - am I reading this right?
36 year old mother of a fabulous toddler. Major symptoms began after her birth, with widespread pain/stiffness and mucus in stool. Had seen blood in stool for years prior but believe (and still suspect) hemorrhoids and/or fissures for this particular manifestation.

Diagnosed with Crohn's July 2007. The only visible areas of inflammation via scope were my stomach, rectum, and somewhere in my colon. Pill Cam, SBFT, CT Scan all normal. I think I may mainly have colitis.

STARTED LOW DOSE NALTREXONE SEPT. 26TH www.lowdosenaltrexone.org. Also see: http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&cmd=Retrieve&list_uids=17222320

On Specific Carbohydrate Diet (SCD) since late July and seeing improvement in "output" quality and hopefully therefore absorption. Taking SCD legal supplements: B vitamins, Folonic Acid 800mg, EnZym Complete DPP IV Aid by Kirkman.

Current biggest complaints: LRQ fullness and burning now gone. Gastritis symptoms are also quiet now. What was horrible right hip and low back pain has subsided about 60%. I'm pretty much feeling normal but in no way think I do not have more symptoms in my future.


beave
Veteran Member


Date Joined Mar 2007
Total Posts : 644
   Posted 10/21/2007 6:56 PM (GMT -7)   
killerzoey, none of my levels were above the "reference" values, but the first four were at detectable levels (ie, they were above detectable thresholds, but below reference levels).
 
The formula Prometheus uses to determine IBD is pretty complicated; it's not simply a matter of seeing whether any of the values are above the references.  You can be below the references in all categories but still have IBD.  Increasing levels, above their reference levels, correlate with more severe disease and with complications.  So it's not surprising for mild and/or early Crohn's to have no values above reference level.
 
However, keep in mind the following: A) The values can change over time for a person
B) The values only *loosely* correlate to disease severity and complications.  When you read the fine print and see the correlations, they're only that: statistical correlations.  They're not guarantees that you have, or will get, certain manifestations of Crohn's.
 
So, yes, from a patient perspective I think the results and the prognosis they derive from those results are fascinating.  But, from a doctor's perspective, I can see why they don't pay much attention to the actual numbers.

Strat43z
Regular Member


Date Joined Mar 2007
Total Posts : 20
   Posted 10/25/2007 10:25 PM (GMT -7)   
beave said...
 
The formula Prometheus uses to determine IBD is pretty complicated; it's not simply a matter of seeing whether any of the values are above the references.  You can be below the references in all categories but still have IBD.  Increasing levels, above their reference levels, correlate with more severe disease and with complications.  So it's not surprising for mild and/or early Crohn's to have no values above reference level.
 

I think I understand.  Just received a copy from GI and I didn't understand it nor did the values look indicative of Crohn's although it was marked IBD Predicted and Crohn's Disease Predicted.  This was the Prometheus IBD Serology 7 Test:
 
ASCA IgA         - 12.6
ASCA IgG         - 15.8
Anti OmpC IgA  - 11.5 
Anti-CBir1        - 20.5
AutoAntibody   - <12.1
IFA Perinuclear
Pattern           - Not detected
DNAse
Sensitivity       - Not detected
 
The sheet I received also had a box labeled General Test Information, wasn't sure if it was the test percentage in general, or percentages of each patient's results?

 
Sensitivity: IBD 93%, CD 88%, UC 93%
Specificity: IBD 95%, CD 98%, UC 97%
PPV:          IBD 90%, CD 93%, UC 98%
NPV:          IBD 90%, CD 93%, UC 98%
 
I haven't had a chance to speak with my GI about the test since I have to have nodules in the lungs checked out first before starting Remicade, so I probably have a few weeks before we meet. 
 
It's been eight months since I had to seek attention after severe diarrhea, (diarrhea for 20 years), dehydration, fever, lethargy night sweats and cramping.  In March a CT scan dx'd Crohn's but later, the Pill cam and SFTB series showed no signs.  I had a fistula since Jan. 2006 but my GI and 2 colorectal surgeons basically didn't believe me, or said it had to abscess before they could locate it.  In August I went to the Cleveland Clinic and they found two pouches communicating and an opening into the anus, without an abscess present.  They had me in a week later for a fistulotomy.  Either it didn't close completely, or I have a new abscess/fistula present that is abscessing now.
 
Previous blood work showed protein elevation and 99% my WBC was high, but the colonoscopy biopsy was negative. The endoscopy showed GERD/Reflux, Gastritis, but the positive CT scan was ignored.  Symptom wise it's text book with few exceptions.  I've sinced changed GI's and that is why I had the Prometheus test, but now after all this time I don't know what is considered enough info and what isn't.  I've read too much and no procedure seems absolute without critics. 
 
Strat43z-
 

beave
Veteran Member


Date Joined Mar 2007
Total Posts : 644
   Posted 10/26/2007 1:24 PM (GMT -7)   
FYI, the box labeled "General Test Information" is derived from their (Prometheus') studies of a couple thousand patients.  It's the test percentages in general, not specific to any one patient.

Adria132004
New Member


Date Joined Sep 2007
Total Posts : 9
   Posted 10/30/2007 11:40 AM (GMT -7)   
I finally got my Prometheus results. Would be very interested to know what others think.

ASCA IgA: 51.3 (reference is <20.0)
ASCA IgG: 52.9 (reference is <40.0)
Anti-OmpC: 25.0 (reference is <16.5)
Anti-CBir1: >150.0 (reference is <21.0)
AutoAntibody ELISA 12.5 (reference is <21.1)
IFA Perinuclear Pattern: Not detected
DNAse Sensitivity: Not detected

These high values seem pretty conclusive for Crohn's, but I have no symptoms at all other than severe fissures. I go on Thursday for a small bowel series.
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