Undiagnosed, but closing in

[TriCrush]

Hi there,

I'm new to the forum. I'm currently undiagnosed with Crohn's disease, but both my GI doctor and I are suspicious that this is what I have. I've had trouble for the past year and a half after I came back from international travel. It's pretty much felt like having food poisoning every single day, with some intermittent bouts of bed-ridden disability for a day or two in a row. I've lost twenty pounds, and I've missed a lot of work throughout the year. I've had a sigmoidoscopy and a colonoscopy with biopsies. Everything came back normal. I've been on several different rounds of antibiotics and I've had a CT scan and a blood test for Celiac's. I've been tested for all sorts of parasites and infections. Tests keep coming back normal, but my symptoms keep marching forward.

I definitely experience symptoms outside the range of IBS and my doctor is currently doing a blood test to look for genetic markers of Crohn's. I know no one wishes to have this affliction, but I am looking forward to the mixed relief of being able to at least begin a treatment program that targets my pain and symptoms.

Has anyone had the problem of limited tests that keep coming back normal before achieving a diagnosis? I feel like I've ruled most things out, but I still experience a lot of pain and bleeding. Thanks for your feedback!

 

[Dexky]

Has anyone had the problem of limited tests that keep coming back normal before achieving a diagnosis? I feel like I've ruled most things out, but I still experience a lot of pain and bleeding. Thanks for your feedback!

Welcome TriCrush!!

In answer to your question, oh yes!! Check out Cat-a-tonic's Undiagnosed club here...

http://www.crohnsforum.com/showthread.php?t=13113

I hope you get answers sooner than she's been able to!! Good luck!!

 

[StarGirrrrl]

Blood tests: always found raised CRP, Flexible sig with biopsy: normal. Now after a 3 year gap am having colonoscopy after I got worse a year ago (misdiagnosis). I do know CD can hide and be difficult to diagnose, glad you have a good GI, that makes all the difference!

 

[bushydougie]

Come and join our undiagnosed club!! It's so tough not knowing. I've been ill for almost a year but every test has failed to find anything (except blood tests but these are not consistent). I saw my GI today and asked him again if he believes it's CD and he said yes but there is no clinical proof. I have responded well to both pred and Entocort so this is one of the main reasons bar the symptoms that makes them believe this is what is wrong with me. I would thought like a definate diagnosis at some point but they have decided not to do any more tests for now...
I hope you get some positive answers soon

 

[UC_]

Hi there,

I'm new to the forum. I'm currently undiagnosed with Crohn's disease, but both my GI doctor and I are suspicious that this is what I have. I've had trouble for the past year and a half after I came back from international travel. It's pretty much felt like having food poisoning every single day, with some intermittent bouts of bed-ridden disability for a day or two in a row. I've lost twenty pounds, and I've missed a lot of work throughout the year. I've had a sigmoidoscopy and a colonoscopy with biopsies. Everything came back normal. I've been on several different rounds of antibiotics and I've had a CT scan and a blood test for Celiac's. I've been tested for all sorts of parasites and infections. Tests keep coming back normal, but my symptoms keep marching forward.

I definitely experience symptoms outside the range of IBS and my doctor is currently doing a blood test to look for genetic markers of Crohn's. I know no one wishes to have this affliction, but I am looking forward to the mixed relief of being able to at least begin a treatment program that targets my pain and symptoms.

Has anyone had the problem of limited tests that keep coming back normal before achieving a diagnosis? I feel like I've ruled most things out, but I still experience a lot of pain and bleeding. Thanks for your feedback!

Sorry to hear that things are so up-in-the-air regarding not having a definite diagnosis! Every test in medicine has "sensitivity" and "specificity"; high sensitivity lets you "rule out" a disease if you test negative on the test, high specificity lets you "rule in" the disease if you test positive on the test. Depending on the medical condition, one of the two (sensitivity or specificity) may be considered more important, it's virtually unknown to have any test with both high sensitivity and high specificity, unfortunately.

Of further confusion is that there are always "atypical" disease presentations, in which standard disease symptoms are not present, or are ambiguous to another possible disease.

Curious as to which other meds (aside from antiparasite, antibiotic) have been tried, and were there any positive effects of any meds? Did anti-inflammatories or steroids have any effect, which would lean toward a non-infectious cause more akin to UC/Crohn's?

 

[Cat-a-Tonic]

Hi Tri-Crush and welcome. You're not alone in being undiagnosed, and as Mark said you should check out the Undiagnosed Club. I am also undiagnosed and I have been sick for well over a year now. My GI suspects I have either Crohn's or possibly microscopic colitis, but he hasn't been able to find any evidence of disease - like you, all my tes results have come back normal. I've had colonoscopy & endoscopy (both with biopsies), CT scan, MRI, pill cam, and many many blood & stool tests. The only result that came from any of these tests is that my sodium levels are low, and that I have some benign nodules on my kidney. No evidence of any disease though. But as Sam said, I also respond well to both prednisone and Entocort, so my doctors and I know I most likely have something autoimmune which is probably IBD.

What's next for you - more tests? Have you tried any medications such as predniosne? If you feel like you're hitting a brick wall, you may want to get a second opinion from another doctor. Good luck, and again, welcome!

 

[Mayflower537]

Yeppers, been there, done that, you are not alone!! I've had problems for a long time that really got a lot worse in '07 when I was pregnant with #2. Passed out from abdo cramps this past March and finally went to the doc about all this. Had the Prometheus IBD 7 test (dunno if that's what you're having done) and it came back positive for Crohn's Disease, but no sign of disease activity on any scopes or accompanying biopsies. So he's treating my symptoms now. I'm okay with that as for the most part it's working...

Hope you get some answers and/or relief soon.

 

[TriCrush]

Thanks for all the kind responses. So far I have yet to take any medication to treat my condition outside of a few random antibiotic trials. So I really am just experiencing my symptoms straight without anything to limit them! Hoping to have test results soon so I can finally begin some type of treatment. Thanks for the encouragement everyone and best of luck in your own quests to feel better!