Rising calprotectin levels with IBS symptoms and clear blood tests

[cool4cats2020]

I've recently had calprotectin levels tested (following digestive system issues/IBS symptoms and fatigue). First test was 165ug, repeat test 4 weeks later came back at 315ug. I'm not aware of having any stomach bugs recently (and even if I had 2 elevated results 4 weeks apart, seems unlikely to be caused by that). Qfit test came back clear. And all blood tests clear - no high white blood cells, crp or anemia showing. Now awaiting a telephone consultation with GP to discuss it. I'm already booked in for gastroscopy soon, but referral for that was made before calprotectin results came in, but I'll obviously mention it on the day.

My dp has ulcerative colitis so I'm moderately familiar with IBD, but never thought my symptoms could be caused by that. And my calprotectin levels aren't really high, from what I've seen online, an ibd flare would have given much higher numbers, and shown up in the other tests (crp etc).

I was passed off with IBS diagnosis by previous GP several years ago, just by symptoms, no tests were done at the time. Back then I had chronic diarrhoea - lost 3 stone in 3 months before weight stabilised. Maintained it for a while but then piled the weight back on during covid lockdowns so weight loss isn't a current symptom. Have suffered with urgency and diarrhoea, alternating with constipation for quite some time, but does seem to be getting gradually worse. Movements are always very lose or pencil thin (sorry if tmi). Also get constant bloating, worse after every meal, even light meals.

Not sure what to make of it really, or what I'm asking here, just after some sort of reassurance or suggestions before I get chance to discuss with GP. Searching online suggests that coeliac disease can cause inflated calprotectin levels, and I think some of my other symptoms fit in with that too. Would it be unreasonable to ask gp to test for that, if they don't suggest it themselves?

Hi OP,
My son has a Crohn's diagnosis. I just googled Gastroscopy - found it to be camera from throat to stomach.

My son had cameras down the throat and up the backside as the consultant explained that with Crohn's and ulcerative colitis there can be ulceration at any point from the mouth to the back passage. My son had both cameras during the same appointment under general anaesthetic.

I think your camera test will help you put the picture together. Are you also having a camera the other way? I think (although I am not certain) that the consultant could see signs of coeliac if that was the case in the intestine because the villi (?) would be smoothed. But that is beyond the stomach and require the lower bowel camera i believe.

If you are only having a camera down the throat perhaps ask the Dr why. Perhaps if it does not show anything they will request the lower bowel investigation. If you don't get answers ask for this.

My son did have raised platelets and his calprotectin was 500 odd I think.

Do you have any issues or symptoms relating to issues with periods? I ask because I had raised calprotectin levels, had lots of digestive related issues with going back and forth between diarrhoea and constipation. Had a colonoscopy, couldn't see any issues so was put down to IBS.

Happened to also be having painful periods, bloating,fatigue and lots of intermittent abdominal pain. Turned out I have adenomyosis and endometriosis including bowel endometriosis. I have had no other explanation for the raised calprotectin but I assume that is what has caused it now I finally know I have endometriosis in the bowel area.

I literally have been told a few times over the years all my issues are IBS but turned out its actually endometriosis.

Just something else to consider if you have any other related gynae issues as when it comes to bowel issues, its not the first thing you would think of but I was shuffled back and forth between gynae and gastro for years before diagnosis and only got diagnosed because I happened to have a large ovarian cyst discovered that needed removing. Had it not been for that, I still would have all this being put down to IBS

I have Crohn's and have never had raised calprotectin levels.

My Calprotectin has been over 2000 w inflammation in bowel (last test it was 800) and they still won’t diagnose IBD cos I don’t have classic symptoms.
Siunds Like you need a colonoscopy as well as gastroscopy because the Calprotectin is only related to the large bowel.
My digestive system seems to be a mystery to my GP and gastroenterologist 🤷‍♀️ it is best to get these things checked out if not to rule out other medical issues.

Bit of an update on things - I had the gastroscopy a few days ago (horribly unpleasant but I managed it without sedation). Identified mild inflammation throughout upper GI - oesophagitis, gastritis, duodenitis, along with hiatal hernia. Urease test was negative, which I think means it's not being caused by H Pylori? Took some biopsies, so might get some more answers when they come back. Endoscopist advised a course of omeprazole to calm down the inflammation, and suggested a colonoscopy would be next step because of the calprotectin results. They gave me a copy of their results and recommendations, which they said would also be visible to the GP immediately as well. So far no communication from GP so I'm probably going to have to chase them to get the omeprazole prescribed and the referral for colonoscopy.

At this point I don't have any real diagnosis, just more symptoms (I wasn't aware of the upper GI inflammation, other than occasional reflux). Googling still seems to suggest that coeliac is a match for my symptoms, and potentially crohn's. Although coeliac doesn't usually cause such high calprotectin and crohn's causing issues in the upper GI is relatively rare.

Fatigue and brain fog has been absolutely awful the last few days, not sure if some kind of stress reaction to having the endoscopy, but I can't remember being this tired in a long time. Fell asleep straight after dinner last night (which is quite common for me recently), but then slept nearly all day today as well. Obviously I'm achieving very little work of any sort, self employed so I can sort of get away with it to some extent, but it's reducing my income and I'm getting behind with domestic stuff too, which is getting really frustrating.

BAM? Microscopic colitis (which will only show up on biopsy, not standard tests)? FCT aren't always conclusive.