How Reliable Are IBD Panels?

[Raleigh]

I was wondering how reliable an IBD panel really is. I had the ASA and pANCA IBD panel from LabCorp, which came back negative. I read that it shouldn't be used for diagnosing Crohn's; only to differentiate between Crohn's and UC. But I think my doctor was using it as a diagnostic tool. Should I put much stock in the fact that it came back negative? Thanks for your help.

Brian

 

[David]

Hi Brian,

My guess is you had the ASCA and pANCA IBD panel. Studies are somewhat conflicting. For example, the LabCorp brochure says that it can aid in the identification of IBD and help differentiate as well. That brochure says that when the marker for ASCA which is associated with Crohn's Disease is positive, sensitivity is reported to be as high as 74% and specificity is reported to be as high as 95.9%. What this means is they're cherry picking the best sensitivity and specificity results from studies. I can certainly find lower ones.

Sensitivity measures the number of positives that are correctly positive and specificity measures the number of negatives that are correctly negative.

So, my feeling is a positive result is only a decent determinant but not for sure and a negative is a pretty darn good determinant but not for sure. Thus ASCA is useful but should be utilized in conjunction with other tests and clinical presentation to make a final diagnosis.

I hope this helps a bit!

 

[Raleigh]

Thanks, David. You're correct, I did have the pANCA and ASCA IBD panel. The nurse said my results were negative/normal. But I've heard so many people say that they were negative as well, and were later confirmed to have CD. And I read that a large percentage of Crohn's patients show no antibodies at all.

I'm just confused because some of the literature makes the IBD panel sound very accurate in diagnosing IBD. And yet, I have perianal disease, a host of red flag symptoms, extraintestinal manifestations, and a recent colonoscopy which showed some kind of colitis. The doctor even said that based on what he saw, it was either Crohn's or UC.

I've also been on TPN for over 5 years now. I know that TPN is used to put Crohn's into remission, so is it possible that it slowed or even partially reversed the disease progression in me?

This is all just very frustrating and confusing, and I've been trying to get answers for so long. Thanks for your help.

Brian

 

[David]

It's frustrating indeed Brian A correct diagnosis can be quite a journey, especially when tests provide conflicting information. It sucks that you're having to go through this.

If you have Crohn's Disease, yes, I think TPN could slow the disease progression or put it in remission.

 

[chrisnsteph1022]

I'm not sure which test I had-it was done by Prometheus labs. It was negative for IBD. I most definitely have Crohn's (confirmed multiple times via scope/biopsy).

 

[Raleigh]

Thanks, chrisnsteph. I knew someone with confirmed Crohn's would eventually step forward to say they had a negative IBD panel. I've read so many conflicting things. At least I can take this to my doctor and ask him to please keep looking, because I know the evidence is there.

 

[Amblockerr]

Hi, this post interested me because I was diagnosed with CD in 2009 via PillCam I did have colonoscopy and EGD that showed inflammation but they could not see anything definitive so did a PillCam which showed deep in small intestine what looked to be crohn's. I was put on Remicade which helped tremendously and then had to switch doctors unfortunately and now my doctors are saying they don't trust a PillCam because they can't biopsy it so they took me off all medications. I like you have perianal disease, all the other symptoms yet they keep saying "Unsure" and basically waiting for me to go in a HUGE flare and catch it. I have not had the Antibody test done but reading these posts im not sure whether it could help or not help in my diagnosis but I am as frustrated as you. So you are not alone!

 

[Raleigh]

Amblockerr,

I am pretty much in the same situation as you. My colonoscopy showed inflammation, but nothing definitive. I had some aphthous ulcers show up on my pill cam, but again, nothing definitive. I always bring up the perianal disease, but none of my GI's pay any attention to it. They want to see a definitive biopsy from the intestine, which means like you, I'm supposed to wait until I'm in a huge flare with the hopes of catching it.

I think it was irresponsible for your doctors to stop your meds, especially considering that they were helping. Obviously, if you respond to the meds, that should be a big indication of what is going on inside your gut. Anyway, I'm sorry that you're going through this. It is so frustrating playing the waiting game.

Brian

 

[Amblockerr]

Our stories sound exactly alike the exact situation doctors acting the same way. I'm glad there's someone out there like me to connect with. Yes it is inconsiderate and irresponsible of the doctors to not do anything but wait its frustrating while we sit around sick and hurting.

 

[Raleigh]

I'm glad to know I'm not the only one going through this as well. I always feel like I'm on the outside looking in; especially when I see so many people with clear-cut, definitive results. I end up feeling envious, because if I could just get a definitive diagnosis, I could actually get the treatment that I so desperately need.

I think sometimes, doctors need to think outside the box and work backwards. That is, giving patients like you and I treatment, and seeing if it makes us feel better. If it helps, then it is reasonable to make the Crohn's diagnosis. If it doesn't help, then it's time to look in a different direction. But waiting for us to feel terrible enough to manifest the perfect diagnostic evidence is just prolonging our suffering.

Brian

 

[Skycruiser]

Deleted.

 

[Raleigh]

Brian,

Thanks; I appreciate your reply. It helps to know that there just might be a light at the end of the tunnel. Our situations are so alike. I too ended up on the gluten-free diet due to a Celiac Disease misdiagnosis. I have also been chronically deficient in Vitamin D and iron. We're also about the same age (I'm 28).

It's interesting to hear that your GI mentioned that more and more people are presenting with atypical Crohn's symptoms. It's very rare to find a doctor who actually thinks outside the box. I'm glad to hear that you have finally found some relief. I hope to be there soon myself.

I think at this point, I'm going to push to try some Entocort, instead of continuing this cat-and-mouse game with diagnostic testing. There's no guarantee that my GI will oblige me, but it is better than suffering indefinitely. It's cases like yours that I plan to bring to the attention of my GI. Thanks again.

Brian

 

[Skycruiser]

Brian,

Thanks; I appreciate your reply. It helps to know that there just might be a light at the end of the tunnel. Our situations are so alike. I too ended up on the gluten-free diet due to a Celiac Disease misdiagnosis. I have also been chronically deficient in Vitamin D and iron. We're also about the same age (I'm 28).

It's interesting to hear that your GI mentioned that more and more people are presenting with atypical Crohn's symptoms. It's very rare to find a doctor who actually thinks outside the box. I'm glad to hear that you have finally found some relief. I hope to be there soon myself.

I think at this point, I'm going to push to try some Entocort, instead of continuing this cat-and-mouse game with diagnostic testing. There's no guarantee that my GI will oblige me, but it is better than suffering indefinitely. It's cases like yours that I plan to bring to the attention of my GI. Thanks again.

Brian

Hey Brian,

Yes, we definitely have many similarities, including our names!

I think it is an absolutely great idea to push your physician to put you on a trial of Entocort. The worse that will happen is that it will not work. But that determination cannot be made without trying it first. What ultimately solidified my diagnosis was going on Entocort. My GI specialist was certain his diagnosis of CD was correct based on testing, but many doctors struggle to try medication when there is an absence of positive blood testing or conclusive biopsies.

But as I made mention, more and more patients are presenting atypically. So until new tests are developed that reflect the progress and evolution of diseases, many will still come out indeterminate and untreated. There is such a thing as empiric diagnosis. That is, in absence of other confirming tests, diagnosis is made from symptom improvements through medication therapy. In the case of Entocort EC, it is designed to treat only one condition. If your physician is still not convinced of this, then consider finding another specialist and make it clear you want empiric treatment. You are the patient and have rights.

Please stay in touch. I'd love to know how things turn out for you. If you have any questions, do let me know.

Best,


Brian

 

[Avw]

I know you've mentioned the Mayo and Cleveland Clinics, but I was just wondering how many doctors you've seen and still not been able to get a clear diagnosis? It just seems really irresponsible of these doctors to see someone with symptoms such as yours, someone who has been relying on TPN for FIVE YEARS and still not even attempt to treat you... I mean even if they can't make a definitive diagnosis, most doctors will try you on different IBS/IBD medications and use your response to those as a diagnostic tool of sorts.

All I can really say is I'm sorry you have to go through all this. I didn't spend much time in the undiagnosed category myself, but I know what it's like to have sub-par medical care. I just can't believe it took me almost 10 years and failing all treatments to realize it wasn't just me, a big part of it was my doctor. I'm in Chicago right now, and today, for the first time, I saw a GI other than my hometown GI, and let me tell you I am NEVER going back to my old doctor.

I suppose we all assume that because all doctors take an oath to do no harm that they are looking out for our best interests... But, at the end of the day, the only person who is truly in your corner is yourself. So just keep fighting, keep searching, keep doctor shopping if you must, because the longer you go undiagnosed and untreated, the more likely the disease will cause serious damage which may not be resolved by medications. It's so easy to become complacent (I know, I was for the last 8 years) especially when you feel like crap all the time, but now I wish, more than anything, that I had sought out better care long ago.

I really hope you can get some answers and get to feeling better soon.

 

[Raleigh]

Avw,

Thanks so much for the words of encouragement. I have seen a total of 13 gastroenterologists. I have been to the Mayo Clinic, Cleveland Clinic, Duke, UNC, Tufts, Lahey Clinic, and Beth Israel (affiliated with Harvard). Nobody cared enough to follow through with me. My second GI said I had IBS, and gave me Bentyl and Hyoscyamine. They both made it worse. Then he prescribed Zelnorm. I read about the side effects, and decided against taking it. It was subsequently pulled off the market a few months later. That is the extent of the meds given to me.

I agree that it is completely irresponsible to allow a patient to suffer for 8 years, and stay on TPN for over 5 years without any treatment whatsoever. The medical system works best for those who fit neatly into diagnostic boxes. It fails miserably for those who do not.

Good for you for going to Chicago. They are supposed to be phenomenal with treating IBD. I really hope that they are able to provide you with some relief. You deserve to feel well again. If I have learned anything over the years, it's that you have to be your own advocate, just like you said.

I will keep pushing for treatment. I know that I'm a lot closer now than I was before. And despite the past, I'm optimistic about my new GI. He is the only one who has truly taken me seriously, and he does believe that I have Crohn's. Plus, he knows that I have been everywhere else, so there is nowhere left to turn.

Thanks again, and please keep me posted about how it goes in Chicago. :ysmile:

 

[Raleigh]

Brian,

I had no idea that Entocort EC is a Crohn's-specific drug. Thanks for letting me know. If my GI permits me to try it, the evidence will be irrefutable. And I agree that an empiric diagnosis is the way to go at this point. I do not have the patience for further repeat testing, and the waiting that coincides with it. I will be sure to keep you updated on any progress, hopefully sooner rather than later. Again, thank you so much for all of your help.

Brian

 

[KatyBuckeye]

Hey Brian- Just wanted you to know that you're definitely not alone. I've been dealing with a situation that is equally as frustrating. I was diagnosed with Crohn's in early July and started on a trial of Lialda (mesalamine), which increased my symptoms drastically. I had a lot of issues with that first GI doctor and I was really questioning her knowledge in treating IBD (she wanted me to stay on Lialda, even after all the increased symptoms). After doing some research, I realized that there was nothing about the biopsy results that said "Crohn's" versus UC or some other type of colitis. So, I switched GI docs for a 2nd opinion. The 2nd GI told me that it wasn't Crohn's, but lymphocytic colitis. That also didn't seem to make sense to me, because there was nothing about the biopsy results that suggested that. So, I'm on my 3rd GI and he is taking his time to make a diagnosis. I just received the Prometheus results, which were inconsistent for IBD. It's really frustrating because I feel like the doctors are missing something. My GI symptoms are fairly under control because I've been making drastic changes in my diet, which I also think contributes to the new GI's confusion. I'm still having really bad joint pain and fatigue and if I don't follow the diet 100%, my GI symptoms return. I still have occasional abdominal pain too. It's just so frustrating!

 

[Raleigh]

Thanks, Katy. I'm sorry to hear that you're going through the same frustrations that I am. Hopefully your new GI will nail down your diagnosis once and for all. But either way, it's great that your symptoms are more under control now, with the changes you made in your diet.
It's funny how I started this thread back in July, and it keeps popping back up because so many of us are dealing with the same frustrations. It speaks to how difficult it can be to get a solid diagnosis, and how stressful the whole process can be. I hope that we all can get the answers we are looking for, sooner rather than later.

Brian

 

[Cassy]

I was given a positive result for crohns from a lab (IBD panel) but the doc says its not crohns according to my coloniscopy and EGD. I feel it's wrong as I have horrible pain in my upper right quadrant and my primary is saying I should have the pill cam.

Any ideas here? How accurate is this IBD panel??