Very high fecal calprotectin, but normal scopes?

[Whisperings]

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.

 

[my little penguin]

Capsule endoscopy?
Did they check for c diff or ecoli ??
Sometimes infection can be the cause

 

[Whisperings]

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]

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

 

[Whisperings]

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

 

[my little penguin]

Make sure the MRI is and mri with entography
Known as MRE where you drink barium and get glycogen /gallulidium in an iv during the scan

 

[Whisperings]

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]

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

 

[Whisperings]

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]

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 ??

 

[Whisperings]

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]

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

 

[Lady Organic]

Did you have Covid?

Still waiting for biopsy results?

 

[Whisperings]

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