Crohn's Disease Forum » Tests for IBD » Frustrated with"normal" test results


05-22-2018, 07:11 PM   #1
ajagoda014
 
Join Date: May 2018
Location: Avon Lake, Ohio
Frustrated with"normal" test results

Sorry for posting all the time but this is getting to be insanely frustrating.

I can't get in to see a different GI until July so I'm looking around at different doctors to see I can get in sooner to have another scope...

Basically it's like all of my tests are coming back normal so there must not be anything wrong or it's "just IBS".

I had a colonoscopy in March of 2016, that was visually normal but the pathology showed active ileitis. I had a normal CTE, and all normal blood work and stool tests. Fast forward to now when I have been having bloody diarrhea for months, increased pain, and weight loss...my CRP is barely elevated, and everything else has come back normal. I realize that sometimes this happens and the gold standard in diagnosing Crohn's are scopes...but the NP I saw cancelled my appointment without any explanation and I can't get through to her freaking office to talk to a real person and she won't return my voicemails.

In 2016 my CRP was .8 mg/dL and now it's 1.8.

Has anyone else gone through this? Seemingly normal test results but diagnosed? Like I've said before, I don't want Crohn's, nobody does...but I want an answer and I want someone to take me seriously when I say I'm suffering and not just say everything is normal.
05-22-2018, 07:18 PM   #2
ronroush7
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Feel free to come anytime. Have you had a MRI?
05-23-2018, 07:34 AM   #3
ajagoda014
 
Join Date: May 2018
Location: Avon Lake, Ohio
Feel free to come anytime. Have you had a MRI?
I had one years ago to look for endometriosis (which isnít even a diagnostic tool) before all of these other symptoms started happening.

Thanks! I think I need to find a different doctor because I canít wait until July and I keep being stuck with doctors Iím not choosing.
05-23-2018, 01:55 PM   #4
Scipio
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Has anyone else gone through this? Seemingly normal test results but diagnosed? Like I've said before, I don't want Crohn's, nobody does...but I want an answer and I want someone to take me seriously when I say I'm suffering and not just say everything is normal.
Yes, it's common. CRP is completely normal in about 20-25% of patients with active Crohn's. That's the big weakness of blood tests for IBD. They can be very informative when they work well for the patient, but they don't always work for all patients. That's why the real gold standard for assessing IBD is colonoscopy and not lab tests.

Have you had a fecal calprotectin test? That might be more informative than CRP in your case.
05-23-2018, 05:04 PM   #5
ajagoda014
 
Join Date: May 2018
Location: Avon Lake, Ohio
Have you had a fecal calprotectin test? That might be more informative than CRP in your case.[/QUOTE]

Iíve had it done twice now and itís been normal but they wonít give me the actual value.
05-24-2018, 09:17 PM   #6
Lynda Lynda
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Join Date: Feb 2018
Location: Arizona
I asked for copies of all my test results recently. I had a bunch of tests before my recent Crohn's diagnosis. I just wanted copies of the tests for my medical file at home. I hate it if Medical Assistants call me at home and say "everything looks normal." My current GI keeps me well informed during my appointments. It does get frustrating. I hope you can find a doctor who will see you sooner. 🐥
05-27-2018, 03:55 AM   #7
Ebru
 
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Sorry for posting all the time but this is getting to be insanely frustrating.

I can't get in to see a different GI until July so I'm looking around at different doctors to see I can get in sooner to have another scope...

Basically it's like all of my tests are coming back normal so there must not be anything wrong or it's "just IBS".

I had a colonoscopy in March of 2016, that was visually normal but the pathology showed active ileitis. I had a normal CTE, and all normal blood work and stool tests. Fast forward to now when I have been having bloody diarrhea for months, increased pain, and weight loss...my CRP is barely elevated, and everything else has come back normal. I realize that sometimes this happens and the gold standard in diagnosing Crohn's are scopes...but the NP I saw cancelled my appointment without any explanation and I can't get through to her freaking office to talk to a real person and she won't return my voicemails.

In 2016 my CRP was .8 mg/dL and now it's 1.8.

Has anyone else gone through this? Seemingly normal test results but diagnosed? Like I've said before, I don't want Crohn's, nobody does...but I want an answer and I want someone to take me seriously when I say I'm suffering and not just say everything is normal.
Bloody diahrea and weight loss isn't normal. You should get a good GI and a scope pronto! Don't use NSAIDS and take care.

I have the same BS - possible misdiagnosis, and was told I have IBS until my GP found the perianal fistula.

My blood results are normal as well (no anemia) despite the fact that I have very pale nails and tingling sensations in my feet.

I hope you'll find some answers soon!
05-27-2018, 09:57 AM   #8
ronroush7
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Bloody diahrea and weight loss isn't normal. You should get a good GI and a scope pronto! Don't use NSAIDS and take care.

I have the same BS - possible misdiagnosis, and was told I have IBS until my GP found the perianal fistula.

My blood results are normal as well (no anemia) despite the fact that I have very pale nails and tingling sensations in my feet.

I hope you'll find some answers soon!
Agree.
05-27-2018, 12:25 PM   #9
Jess72707
 
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[QUOTE=ajagoda014;1007743]I had one years ago to look for endometriosis (which isnít even a diagnostic tool) before all of these other symptoms started happening.

Thanks! I think I need to find a different doctor because I canít wait until July and I keep being stuck with doctors Iím not choosing.[/QUO


I suffered for years as a teenager and no one diagnosed it or blew it off as acid reflux until I got pregnant at 18 and there was no holding the crohns disease back it was forced into full on activate mode and ended with a c section and another surgery to remove part of my colon and they STILL didnt diagnose me with crohns disease because it didn't "look" like it. Pathology had to come back to diagnose it.
Its an invisible disease to the naked eye. Just keep pushing and pushing until you get relief or a diagnosis. Rough road to be on
05-27-2018, 10:17 PM   #10
Lynda Lynda
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Jess, I hope you get a diagnosis soon. 🙂
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