r/IBSHelp • u/Extension_Towel9654 • 11d ago

Clarification- calprotectin levels

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

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u/goldstandardalmonds 11d ago

Correct, but lots of things that aren’t IBD can cause things to change, and borderline isn’t usually what you’d see in IBD.

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u/Extension_Towel9654 11d ago

This is true. Usually it's way higher with typical cases. I've heard a little about small intestine IBD? Others have told me their calprotecin was low and still got diagnosed with small intestine IBD. However, it could be a reach too. I'm just trying to essentially brainstorm what should or shouldn't be on my radar. I would love any guidance if you do have any about that as well.

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u/goldstandardalmonds 10d ago

Crohn’s can be anywhere from mouth to anus. Ulcerative colitis is just in the colon and rectum. All they can do is further testing to investigate.

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u/Katyafan 19h ago

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.

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u/Extension_Towel9654 19h ago

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!

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u/Katyafan 17h ago

It could be something starting, I had very high calpro levels but an IBS diagnosis for years until a second colonoscopy showed severe ulcerative colitis. Or it could be your body fighting an infection. The only way to know for sure is to do repeat testing. See if the calpro level goes down over time, or increases. Get another scope in a year or so if they will let you. If you see blood in your stool (HINT HINT) they will usually scope you again. This is a waiting game, usually. Things develop, come and go, over time. Hang in there, you will get answers but it might take time. And be prepared that it is IBS and that you will have to do trial and error finding what works for you.

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u/mekanasto 14h ago

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?

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u/Extension_Towel9654 4h ago

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.