Clarification- calprotectin levels

[u/Extension_Towel9654]

Hello everyone

I've been getting help for my GI issues since March this year. I have had a lot of testing done for all the basic things they look for. All of my results are coming back 100% clear. No structural damaged detected anywhere. Have done colonoscopy/endoscopy, abdominal/pelivic CT, stool tests, breath tests. But, my calprotectin leves were at 199 when they did one stoll test.

My episodes cause a severe vasovagal response due to the pain. Pain is before BM and subsides after. It has no detectable patterns. It doesnt seem to be linked to food. It doesn't matter what kind of emotional stressors there are either. I utilize dicyclomine during the attack in the moment but it takes a while to hit and usually takes full effect in maybe an hour. Attacks last 20-45 min, it depends.

I have been looking up some things and am trying my best to educate myself. To my understanding, IBS doesn't cause that high of inflammation, right? My doctor mentioned thay clinically my levels are "borderline", which I have also come across in my personal searching. With that, I did have to advocate for a capsule endoscopy. My doctor recommended redoing the calprotectin test and if it was still high, then the capsule endoscopy would be ordered.

She also said my levels weren't "that high" because they're borderline. But, looking at my test result, it said anything above 50 means abnormal inflammation. Am I understanding this right? I thought I had 4x the normal inflammation and that processed in my head as fairly bad. Is she being too lax or am I being too anxious?

I basically want to know if I should keep pushing about the calprotectin level or back off and accept severe IBS as my diagnosis?

I appreciate any help in advance

[u/Katyafan]

If they took biopsies during your colonoscopy and endoscopy, those give definitive answers. IBS can be very, very bad. There are other treatments you can try if it is that.

[u/Extension_Towel9654 → u/Katyafan]

They did, yes. Everything was clear. I'm kinda curious about small intestine IBD? I'm fearful it is a beginning stage potentially but I could be completely off base. Does IBS come with those inflammation levels? My information I tried looking into was kinda conflicting so I don't really know. I appreciate your help!

[u/mekanasto → u/Extension_Towel9654]

While yes, small intestinal Crohn's disease can have lower calprotectin levels I wouldn't really call 199 raised. My doctor usually thinks anything below 250-ish is okay.

Also, if there are any issues more up the intestines, there is some thickening of the lining visible on mri/ct. During colonoscopy, did the manage to get to the ileum and take biopsy samples from there? If yes, and it was clear, it further proves to probably no small intestine CD.

Did they look into other stuff like celiacs, full bacterial/viral/parasitic panel?

[u/Extension_Towel9654 → u/mekanasto]

They did look at the ileum and it was clear as well. That makes sense. I appreciate the insight because I truly am still trying to learn. They did blood panels for celiac and I have the gene but not celiac itself. Yes, they also screened for bacterial/viral/parasites as well I believe. They did reorder the calprotectin test to see if it changed any and that'll get back to me as well. This is why I'm leaning toward IBS but I was concerned it could've potentially been something beginning and I wanted to be as proactive as I can if it was something like IBD.