Tested positive for Crohn's on Prometheus IBD sgi diagnostic

[ginnyrdhap]

I'm a bit confused about my results on this new Prometheus IBD sgi test. It tests serology, genetics, and inflammation to determine patterns consistent with IBD in general, then to differentiate between Crohn's and Ulcerative Colitis. My report says that it's consistent with Crohn's. As I studied the details of the report I noticed that I have four positive serology results, 3 genetic mutations, but NO positive inflammation results. I wonder if this means that when my colonoscopy is done that the GI doctor will not be able to see signs of Crohn's?

Then on the prognostic report, the probability of complications shows a 53% chance of complications in 5 years. However, even though I tested positive for ASCA IgA and Anti-12, there were no genetic mutations found on this test. I guess these tests are pretty technical and maybe I shouldn't be trying to figure out what it all means or how the report is interpreted, but I'm too sick to work, and the only thing that keeps me sane while I wait to finish the other tests, is researching everything I can about IBD. It is empowering somehow to be proactive, even in limbo-land.

So if anyone has any knowledge about the details of either of these tests, let me know what you think. I'm just curious about all this!

 

[KatyBuckeye]

Hi Ginny! Welcome to the forum. I don't really have a lot to add about your specific test results. I am waiting on the results of my own Prometheus test right now. In my case, I had an inconclusive biopsy (well the first GI said definitely Crohn's, the second said lymphocytic colitis, and the third is taking his time to really try and figure it out). From what I understand, the Prometheus tests are somewhat controversial. I've heard some people say that their tests were negative for CD or UC, but they have very obvious signs of disease and have even had to have surgery. I know the test has a high false negative rate. The other thing to consider is that the company that performs this test also manufactures drugs to treat IBD. That doesn't necessarily mean anything, but it does make me wonder why there is only one lab in the country that runs these tests. In my case, the GI plans on assuming it is Crohn's if the Prometheus tests are positive. If the Prometheus is negative, the GI wants to repeat my colonoscopy. So, Crohn's can't be ruled out if the test is negative. I hope someone with more insight into the Prometheus tests comes along soon. Good luck to you.

 

[dannysmom]

My son's Prometheus test a few years ago (prior to the inclusion of genetic tests) was also positive for a pattern consistent with Crohn's - yet doctors still want to see other evidence of Crohns' to make a firm diagnosis.
I too find comfort in reading as much as I can. Good luck to you!

 

[ginnyrdhap]

Thanks for the warm welcome Buckeye! I have also heard that the Prometheus tests are somewhat controversial, but more from the false negative aspect than false positive. I think maybe this newest one that just came out at the end of 2011, is more comprehensive than the old one. But, it is a little fishy that Prometheus also makes drugs for IBD. (Conflict of interest or what?).

I realize that I have to do UGI/SBFT, colonoscopy, and possible pill cam to confirm the Crohn's, but in my heart I have a very strong suspicion that I will get the diagnosis. It would just help explain the health problems I've had. Working with other specialists this past 5 weeks, we've ruled out many other potential diseases.

I'm with you on the researching our health conditions and taking control of the things we can to get healthy. I also have been using a customized GAPS/SC diet and if I hadn't started this a month ago I wouldn't be able to even lift my head off the pillow! I loved your blog and Facebook page!

Good luck with your Prometheus results. Do you know if it was the IBD sgi Diagnostics with the prognostics added on if you're positive? They are very detailed. The diagnostics was $690 and Blue Cross paid only $166 of it, because the lab is out of network. The Prognostics was $323 and I don't know if they'll cover it at all. Well let us know what your results are, and I'll post my UGI/SBFT results. I'm doing the test tomorrow but results are in 48hrs later.

 

[ginnyrdhap]

Hi Dannysmom,

I do think the new Prometheus test is more comprehensive and therefore (hopefully) more accurate than the previous one.

I just read through your thread about Danny's story. Wow, how challenging for your whole family. Your last post said he was doing better and back to school. I hope things are still doing better for him. You talked about all the things you guys have tried but you didn't mention the GAPS or Specific Carbohydrate Diet. My Naturopath has helped many very sick kids with GAPS. You have to start with the Intro GAPS diet when the patient is really ill. It has helped me with my most severe symptoms.

Thanks for your feed back and good luck with your quest for his diagnosis.

 

[dannysmom]

We tried SCD for 5 weeks over 2 years ago .. but it did not seem to help at all. (and it is a lot of work for sure)
I do not know much about GAPS ... but will read up on it.
Thanks

 

[Earnellzwifey]

My Dr said that a special test he done on me was consistent with Crohn's. I guess this the test that he done. I will try to get more info about it when I see him Thursday. I hope you get a definite diagnosis, one way or the other so that they can get you the proper meds to hopefully induce remission.

 

[KatyBuckeye]

Hi Ginny, I just wanted to update to say that I got my Prometheus test results back today, although I haven't heard the interpretation from the doctor. My results were not consistent with IBD. The ASCA IgG was the only serology finding that was positive. I had two of the four genetic mutations and all inflammatory markers were negative. So, it's still a mystery for me. I guess I need to wait to see what the doctor thinks. I had signs of inflammation on the biopsy.

 

[ginnyrdhap]

Thanks Ernellzwifey! So looks like you just got diagnosed with Crohn's 1 year ago. How did they confirm your diagnosis? Was it a combination of the bloodtest, along with colonoscopy with biopsy? Just curious how people are getting their final diagnosis. It is such a long process! My colonoscopy is on 9/26. I sure hope they can figure this out.

KatyBuckeye: Thanks for letting me know about your blood test results. That is confusing that it says not consistent with IBD but you had inflammation on the biopsy. I have heard that there are more false negatives than false positives on that blood test, not sure if it's true though. Sorry you're still left with a mystery. Are you scheduled for another colonoscopy?

My UGI/SBFT xrays today seemed to be normal, but the radiologist had to review it a bit more and report to my doctor.

 

[Sparkle2012]

Hi all --- is it possible that the reason for false negatives in the Prometheus testing is because it can be induced environmentally.....was not necessarily in the genes? I feel in my gut (pardon the pun) that I may have done things to bring this condition on...harming my mucosal lining. However, I have not had Prometheus yet, will have around March after steroid therapy. My mother has RA so the immune thing is in my family. But I had IBS for years (or did I?) and would not take my fiber drink - then migraines which for years I treated with aspirins and coca colla on a empty stomach often --- sometimes with alcohol still in my system during my single years - just to ensure I didn't have headache next day. Years of chronic constipation which I basically ignored. Gerd treated for 7 years with Prilosec (this is known to cause issues longterm - so I stopped). Then Tums every night ..sitting on the tummy at bedtime. Poor diet - lots of fast and processed foods on the fly, too busy for nutrition - not much meat, fruits, vegs. Sedentary lifestyle/job. If any lifestyle could get Crohns, it would have been mine. Any thoughts on that?

 

[Sparkle2012]

I'm really ashamed of my thoughtless lifestyle after I actually put it on paper.

 

[Sparkle2012]

My son's Prometheus test a few years ago (prior to the inclusion of genetic tests) was also positive for a pattern consistent with Crohn's - yet doctors still want to see other evidence of Crohns' to make a firm diagnosis.
I too find comfort in reading as much as I can. Good luck to you!

Hi - did you ever get a firm diagnosis? I'm going thru the same thing.

 

[dannysmom]

Hi - did you ever get a firm diagnosis? I'm going thru the same thing.

No ... not yet. Good luck to you!

 

[ginnyrdhap]

Hi sparkle2012,

I just wanted to let you, and everyone else reading this thread, know that I never got a firm diagnosis for Crohn's even though I had a positive prometheus test. But for the last 3 months I have been researching gluten sensitivity extensively. I've come to the conclusion that gluten (in all forms, which includes every single grain) is toxic to the human body and no one should be eating eat. But if you want proof as to whether you are genetically susceptible to Celiac or gluten sensitivity, you should get DNA tested. It's only $150 through Enterolab, and you can order it yourself. I was very sick, and only when I cut out all grains, including corn and rice, have I begun to recover. It is amazing. I also cut out refined sugar, dairy, soy, processed foods, and eat all organically. All processed foods have some kind of hidden gluten. I have cut out any possible source of gluten from my environment, even personal care products. Gluten can cause hundreds of symptoms and many,many conditions. You can just search Gluten sensitivity on You-tube and find some amazing videos by functional medicine practitioners, nutritionists, and researchers that are helping to spread the word about the dangers of gluten. It has become my mission to tell everyone I know about this. I only wish I had known about it twenty years ago. Being sick from gluten really lowered the quality of my life. But, better late than never. I highly recommend that anyone that is suffering from symptoms that doctors can't diagnose or are not helping, try going truly gluten free for a few months (no grains or processed foods) and see how you feel. Then try eating a little again and see if you feel worse. It's worth a try. What''s a few months of a new way of eating, if it helps restore your health!

 

[Sparkle2012]

I was tested negative for Celiac. What foods do you then eat? Just meat and veggies?

 

[ginnyrdhap]

Celiac testing is often not accurate. And Celiac disease is only ONE of many possible manifestations of gluten sensitivity. I eat very well, and I'm loving it. I use mostly principles in the Paleo diet. Huge variety of veggies, fruits, meats, poultry, fish, fermented veggies (very important to restore good microflora), soaked nuts and seeds, and baked goods with nut flours, honey, and coconut nectar. I was a very picky eater and ate a lot of breads, pasta, cheese,etc. Believe me, if I can do it, anyone can. Just google Paleo cookbooks and you'll be amazed at all the recipes out there. There are plenty of free blog sites out there too with recipes. GAPS, and SCD are good diets too. My IBS symptoms are way under control now, and I am getting stronger, more stamina, better color, gaining back my weight, neuropathy is going away, much less headaches, and on and on. CHeck out websites by Dr. Tom O'Bryan, Dr. Peter Osborne, Dr. Mark Hyman. They all well give you the information you need to make the decision as to whether you want to try a gluten free lifestyle. It has been THE answer for so many people. :thumright::thumright:

 

[Sparkle2012]

Wow thank you so much for the info! One question - where do you get fermented veggies? Are you speaking of pickled things? Maybe 2 questions....what are soaked nuts and seeds.

Hi back again --- I just read about the paleo diet. Wow -- a hard one to read about - just like early man. That seems harsh but if they have a cookbook, I'll look into it. Still interested in the 2 questions above when you get the time to respond back! Thanks so much for the info!

 

[ginnyrdhap]

Hi Sparkle2012:

First, here is a link to a lecture video by Dr. Peter Osborne of The gluten Free Society that explains why lab tests for gluten sensitivity often come back falsely negative and why the Standard Gluten-Free diets usually fail. He does try to sell you his books and supplements but I think he really wants to help people by making these things available.

http://www.glutenfreesociety.org/gl...es-my-lab-test-for-gluten-come-back-negative/

Here is an article on the health benefits of Fermented (cultured) vegetables. This is one way to make them yourself, but I haven't gotten to that yet. I buy mine at whole foods from a company called Farmhouse Culture. The GAPS diet recommends that we eat them 3 times a day to maintain healthy balance of intestinal microflora.

http://articles.mercola.com/sites/articles/archive/2012/12/15/caroline-barringer-interview.aspx

http://farmhouseculture.com

As far as soaking nuts and seeds, many people with digestive issues have a hard time digesting them if they aren't soaked first. Here is an article that explains why and how to do it:

http://www.thepaleosecret.com/2012/08/10/why-soak-your-nuts-seeds/

You're asking very good questions, and I'll be happy to answer anything else you are wondering about. But just know that there is an amazing amount of information out there on how to reverse the damage done by years of gluten consumption and you really can restore your health. The younger you are when you change your diet, the easier it is to get healthy. I have 50 years of damage, so I know it's going to take time to eliminate all symptoms. Some sources say it can take a few years if a person has already started getting autoimmune problems. I'm staying positive though, because I see slow steady progress. Good luck!

 

[Sparkle2012]

Awesome! I'll follow up on all those leads. Thanks so much for taking the time to inform me. I don't know how a person can stay with that type of diet but I guess it takes a lot of planning and hopefull, resources are available for the foods. For me, not so easy to find organic things....but I live on the outskirts of Jacksonville - I'm sure it would take me an hour to get to the organic store but if i did it once a week it would not be out of line eh? I don't have problems with foods that I'm aware of. I am a bit confused. How do you know a food is bad for you - if it gives you diarrhea it is then bad for you right? I don't get diarrhea but I don't want any secret damage going on in my gut. Any input on that one?

 

[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.

 

[dannysmom]

Pentasa is used to either help with symptoms, or help retain remission. In your case since you do not have symptoms, I would think the Pentasa is to keep it that way. Typically with the step up plan, if Pentasa does not work then a stronger medication is used.
I am glad you have no symptoms and hope it stays that way!
Thanks for the update.