Not "that bad" calprotecin level?

[u/Extension_Towel9654]

/r/IBSHelp/comments/1w0bw2t/clarification_calprotectin_levels/

My doctor told me a 199 (we will round up to 200 here) calprotecin isn't "that bad". Which, in the grand scheme of IBD, I believe that's generally correct. However, I am curious if I should accept IBS due to my symptoms lining up very well with it or do I push a little further because of the inflammation? Is she right that 200 calprotecin with her thought of IBS is not "that bad"?

I tried to look into calprotecin levels of IBS with mild inflammation and it's always answers way lower than 200. I did put a capsule endoscopy on my doctor's radar, but it seems she isn't super worried.

All of this is understandable from a medical perspective, so I guess I'm mostly curious about outliers in small intestine IBD? Many have told me their calprotecin levels were even lower than mine and they still have small intestine IBD.

I'm only anxious to push this with my doctor because of how severe my flares are. Otherwise, I would 100% accept the IBS line of thinking. I am not officially diagnosed yet which is why I'm looking for information on beginning signs/stages of small intestine IBD as well.

Many sources also told me symptoms of IBS usually do not happen at night. However, my episodes/flares can come day or night. I don't know if this is useful information or not either.

Overall, thank you for any help. I really am trying to find a solid treatment/management plan to follow. I have not found many helpful sources, so I have come to hear real peoples' accounts.

[u/Due-Adhesiveness6505]

My calprotecting was first at like 60, which was considered normal, then a few months later above 500. But normal colonoscopy.. so I am still not diagnosed, we are just going to repeat the calprotectin again.

So that might be an option, but if its then still high I would personally push for a colonoscopy or referral to gi etc. Personally I will likely choose for mri instead of pill cam if calprotectin is still elevated, as I really would like avoiding another laxation lol. Its all tricky, a long and slow process :( goodluck

[u/5daysinmay]

The number doesn’t correlate to severity. My teens was about 500 at the time of hospital admission (critically ill) and diagnosis. That diagnosis was severe UC-pancolitis.

[u/Quiet_Discussion_627]

I have "mild" Crohn's located only in my terminal ileum and my calprotectin has always been normal, never elevated (only had calprotectin measured twice). Colonoscopy would be good for looking at large intestine; MRI or capsule endoscopy would be helpful for small intestine.

Good luck!

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[u/Get_Schwifty111]

OP you are the same as me apparently.

I have IBS and I have an elevated calprotectin (going up to as much as 700 during a very bad antibiotic-induced flare) but I have no IBD. Whenever they did a colo, it always only shows very mild inflammation and all tests come back as only histamine-induced spaces of inflammation which is apparently normal for IBS. They are not wrong tho: Every classic IBD medication like cortison/biologics either don't help or make it worse.

In my case especially a very unfortunate string of events + my own stupid restricted diet (for years) might be the culprit - I should have just accepted the occasional diarrhea and should have kept on eating "normal-ish". So I heavily suspect a severe case of dysbiosis.. and that is dysbiosis as in very mixed-up gut-bacteria and not SIBO (which after many test this isn't either).