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Very high fecal calprotectin, but normal scopes?

Hi everyone.

Been diagnosed with Crohns since 2012, and have been in a presumed flare for the last couple months. Here's the weird thing. My fecal calprotectin is at 1,250 but my colonoscopy, endoscopy, and CT scan ALL came back normal (but waiting on biopsies still). Anyone been in this situation before? Waiting to hear from my doc but I'm so, so confused and in so much pain.

Edit: Should note I was at 400 fecal calprotectin in August so it shot up a lot.
 
They checked for c diff...and that came back negative. Not sure about ecoli.

I don't know what a capsule endoscopy is, this was just a normal endoscopy. They said there was mild inflammation in my stomach and that was it
 

my little penguin

Moderator
Staff member
Capsule endoscopy is where you swallow a camera in the shape of a pill
And wear a belt woth a data recorder
It records video of all of your small intestine
That lets the Gi see things better since the small intestine is so large in terms of length
 
Okay, understood. Maybe I can ask for that test. Right now they're booking me for an MRI, because they think there's high inflammation somewhere (since it was picked up by stool test) that wasn't seen in the colonoscopy
 
Thanks, yeah the doc clarified it's an MRE. I had a CT scan a week ago that was clear though; is an MRE able to detect things better?? I have no idea why everything but fecal calprotectin is normal
 

my little penguin

Moderator
Staff member
MRE can “see” thickening of tissue better even a regular mri sees tissue better
Ct is better for bones at least per ent
They prefer ct
While Gi prefers MRE for the gut
 
MRE came back normal too, and my fecal calprotectin is still really high. What could this be? I'm so utterly confused and no one can tell me what's going on, it's disheartening.
 

my little penguin

Moderator
Staff member
Have they checked for ecoli ? There is a specific test not normally done in routine stool testing
Have they done other stool testing ?
Any nsaids ?
Any other signs of infection in your blood work ?
How about joints or skin all ok ??
 
They checked for infections in the stool, but I'm unsure if it was specific to E. Coli. I will ask, though can you have E Coli for months? I've been sick since July.

No NSAIDS.
My ferritin was elevated at 445, but CRP and ESR are normal.
Joints and skin OK.

Are there any other conditions that can raise the fecal calprotectin so high? One theory I have is that my Humira is not working well enough (they've done the fecal calprotectin so much that I can see it's lower near the beginning of the week (300s, 400s) and higher at the end of the week (1000s)). I take my Humira every Friday. I was on Remicade before, and noticed an increase in symptoms when I changed medication.
 

my little penguin

Moderator
Staff member
Ds was on humira every 5 days for the past year or so he was on it due to increasing symptoms
He started every two weeks then increased frequency over a 5 year period .

pill cam takes into account all if the small intestine that can’t be seen - video of it all
Takes 6 hours to watch

tagging @crohnsinct
 
Nope, I tested negative for covid. Biospy results were normal, just mild inflammation. But my fecal calprotectin is still very high. They found an ovarian cyst in my MRI but it was just 2.6 cm and I've been told that doesn't elevate the calprotectin
 

Lynda Lynda

Member
Your questions and answers are very interesting to me. My calprotectin level was 692 before Humira [ 2 1/2 years ago. ] Two years later, last summer, my calprotectin is 668. Doctor changed Humira from once every 2 weeks to once a week. Currently waiting for my doctors office and my Health Insurance Company to get an approval for me to go to an out-of-network lab for the blood draw test to check my Humira levels.....this has been going on for 2 months. I'm sick of making phone calls to my insurance company and my doctors office. Two years on Humira and my calprotectin is still about the same. I think my Humira levels were checked last summer too, but I don't know the results, as it was also a special blood draw situation. I have access on a patient portal to view every blood test result at my regular blood draw place, since 2015, which lets me see for myself what is going on. Best of health to everyone.
 
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