Has anyone here?

[pewpewlasers]

Has anyone here been diagnosed with Crohn's even though all the tests have come back negative?

 

[Peaches]

Not me..... I'm just saying...get them to try you on a pred taper and see what the heck happens.....

 

[braveheart]

Crohn is controversial sometimes.... Which tests?

 

[parkinglothero]

Almost all of the tests I took came back negative, but the last one sealed the deal.

And I had a few doctors opinions and all 3 of them said I had Crohn's.

 

[NatalieMT]

There has been a few discrepancies with my case, many tests came back negative, then I had an abnormal colonoscopy with abnormal biopsies and was officially diagnosed. Since then though I've had a what seemed to be a clear colonoscopy, yet I'm not 100% better. Bizarre! I've seen a couple of GIs since then, one is just totally undecided and said I might even have something that didn't have a name yet, the other said all the symptoms were very Crohn's like and to stick with that diagnosis, they also suggested a capsule endoscopy to get a clearer picture of my small bowel. So far steroids have been my only relief, I'm on Entocort at the moment and it's working well. It's really frustrating and disappointing I know because with all the tests that come back negative, a solution to the problems seem to get further away and that's what we'd all like. Remission!

To be honest sometimes it seems finding Crohn's inside the body is like trying to find a needle in a haystack even though all the signs point to the fact it can't possibly be anything else. It's a weird disease. I think there has been people who have posted here in that situation, who can't get firm confirmation they have the disease but whos GIs have treated them with Crohn's medications anyway.

 

[pewpewlasers]

I've had an EGD which came back abnormal, the colonoscopy was normal, and the small bowel follow through was normal. I then had an xray when I was admitted into the hospital the day of my small bowel follow through and they said they saw dialation.
I've been told that there isn't a specific test or whatever. I don't know...

 

[shazamataz]

Hmmm, dilation usually means there is also a narrowing somewhere which is common in Crohns?

 

[Tan]

Most of my test came back negative including the biopsie taken from my colonoscopy but they found ulcers thru the colonoscopy and then more with the small bowel follow thru. As what Nat said it is very hard to find sometimes. Maybe the pred taper might be worth a go if you can get your GP to prescribe it for you, it can't hurt or make you any worse then you are already feeling.

I hope you start to feel better soon and get some answers... feel for you Pewpew.

 

[RachLG]

I was recently (and somewhat tentatively) diagnosed with CD and nearly all of my tests came back negative as well: upper endo with biopsies, colonoscopy with biopsies, CT scans, blood tests, ultrasounds, EKGs, polmonoology testing, and chest X-ray. I did have a weakly pos ANA (determined to be nothing by a rheumatologist), protein in my urine, and strange creatine levels - all of which were of course unsupportive for any dianosis. A capsule endo was the one test that indicated to my GI that it may be CD - he said due to inflammation at the end of the small bowel. He also said something (which made me cry at the prospect of it): "I see this in some of my CD patients - all the tests come back either negative or not 'red flag' positive...sometimes we have to wait to diagnose until things get worse" GET WORSE!? it gets worse!? He started me on Pentasa and thus the wait begins

 

[JMitch]

I have had some negative biopsies and am in the same boat as you. It is frustrating trying to find someone to treat you.