Anyone been diagnosed with IBS even with raised calprotectin?

[XxTeddixx]

Hi, I’m pretty new here. I’ve recently (Last 6 weeks) been suffering with constant stomach pains and cramps. I’ve been going to the toilet only once a day, but stool is very soft and occasionally has mucus. I’ve never seen blood. Bloods have come back fine but fecal calprotectin was 722. I’ve been referred for urgent colonoscopy and MRI. I’m aware this high calprotectin number is indicative of IBD, but I’m just wondering how many others have had raised calprotectin but been given the all clear re IBD? Do any IBS suffers have raised calprotectin?

[Viklou]

Yes my calprotectin is constantly raised but still IBS in my case. It's been up at 710 and as low as 152 but generally hovers around 300 mark. Bloodwork mostly fine with the odd blip from liver enzymes having a party (not because I've had a drink either lol) or folate has left the building.

[XxTeddixx in reply to Viklou]

Hi, thank you for responding. It’s very bizarre isn’t it. Everything seems to point towards IBD when calprotectin is in those high numbers. When I provided a stool sample the pain was probably at its worst, so I’m hoping that although I still have a lot of pain, if I did the test again, I would hope it would be lower. Do you suffer with other pain as well? I’ve been getting back pain (both localised and quite general) and pain in my pelvis and hip area. I also have localised tender spots on stomach, but they come and go. Does that sound anything like your pain?

[Viklou in reply to XxTeddixx]

I get other pains in my joints. Knees and hip mainly but lower back often. My knees get inflammed and red sometimes but it just randomly comes and goes. My pain has never been at its worst when I've done a stool sample but was having them every six weeks at one point to monitor over time. They want me to have another Colonoscopy but had one about two years ago and all was ok. Had MRI and that was fine too. When I had my last flare which was around the end of May they didn't take a sample but to be honest. It didn't matter as from experience it would be raised so no point. It's now just become a number that no one really does anything about

[32malewithcolitis in reply to Viklou]

What causes your liver enzymes? Did they do scans? My ALT has been mildly raised for 3 months now. They sent me for a fulll liver blood panel and all were ok apart from ALT and AST being mildly out but they don’t seem worried, got a scan Sunday to make sure it’s ok

[Viklou in reply to 32malewithcolitis]

Don't know but something to do with dilated intra and extra hepatic ducts seen on MRCP and MRI. It was apparently 412 at one point. I only found this out a few weeks ago. But as they couldn't see anything causing it and it did come down nothing else has been mentioned and I wasn't yellow lol. Mind you my brother has PSC and colitis. He wasn't yellow either when technically he should of been. He had a liver transplant in 2017 and is doing really well

[32malewithcolitis in reply to Viklou]

Ah good to hear he is doing well! And that you aren’t doing bad either. Calprotectin gone down to 72 so that’s a start

[Viklou in reply to 32malewithcolitis]

That's great about your calprotectin has come down. Not sure what mine is at the minute but not really that bothered anymore. Maybe it's just the way I am. Maybe some people just have a raised calprotectin for no reason. The best thing I've found is to just deal with every day as it comes. One minute you can be fine and the next stuff coming out of both ends and not being able to get off the bathroom floor.

Next I'm having my heart monitored. I did say to the cardiologist it was probably due to a lack of folate at the time but I'm still to be wired for the day.

I think it would be nice to get them all in a room together and find out what they all think but the chances of that happening are zero.

[32malewithcolitis in reply to Viklou]

I think we should have annual MOTs. Cars have them and we are more complex. Full bloods, stool, urine, scans, skin exams you name it.

[xjrs]

My calprotectin was sky high last year and I was referred for a colonoscopy. After the colonoscopy I was still diagnosed with IBS. Far more people will come back with a IBS diagnosis than anything else after colonoscopy, even with raised calprotectin. Good luck with the tests. If you are diagnosed with IBS, you can check back in here since there is much that can be done to help your symptoms.

[Cinnamonan]

I’ve had this too and it’s always confused me - i had a cal pro result of 3000 a few months ago, and a colonoscopy a couple years ago also showed with erosions. I’ve not had a confirmed diagnosis (possible crohns but not conclusive) but from what they told me sometimes this can happen with post infectious IBS.

So for now I’ve been treated / diagnosed with IBS.

My calpro went back down quite quickly ( a month later) so I’m hoping that’s a good sign!

When I had the high calpro result I couldn’t stomach food so I got some meal replacement shakes just to give my bowels some rest.

[Ruralquirks]

Hi, mine was raised the first time, so I had to redo another stool sample (yay fun) and it was all okay. Although I am still waiting for ceoliac blood test results, the others were all normal. I think it's good they're sending you for a colonoscopy and further testing. Hope all is okay x

[XxTeddixx]

Thank you all for your responses. I’m so glad I’ve found this site. It’s so comforting to hear other people’s experiences and to be able to seek advice from people who’ve clearly been going through a lot of pain, discomfort and anxiety for a lot longer than I have. I’ve got a colonoscopy on Tuesday (25th) so I’m hoping it’ll be all clear. Take care everyone x

[Alie4343 in reply to XxTeddixx]

Hi XxTeddixx,

I'm new here.

How are you doing ?

Did you get your results from your colonoscopy ?

Hope you are well.

Alie

[XxTeddixx in reply to Alie4343]

Hi Alie, thank you for asking, I haven’t had any results yet. My colonoscopy was almost a month ago and my MRI was almost 2 weeks ago. I’m hoping no news is good news. Nothing obvious was found during the colonoscopy, but they took some biopsies to rule out microscopic colitis. I’m actually feeling a lot better than I was a few weeks ago. My symptoms are all pain related, no diarrhoea or constipation. The pain now is nothing compared to what it was initially. I’m hoping that I simply had some sort of bacterial infection that is gradually going. I can’t think for the life of me what would’ve caused it, I hadn’t eaten anything out of the ordinary. My calprotectin was 722, I was convinced at the time that I must have an IBD, but I’m feeling more positive now that it’s not that (hopefully) . I hope you get on ok with your colonoscopy and scan. Let me know how it goes x

[val12val]

Hi, I've always believed I had IBS - I'm in my early fifties now and 3 years ago I was officially diagnosed with it. I had a particularly bad flare up and went for blood test and a poo sample. My calprotectin came back very high and like you was sent for a colonoscopy. This was clear and IBS was the diagnosis. People with Ibs can present with high results from calprotectin. Imo

[XxTeddixx in reply to val12val]

Hi, thank you for responding. Although I’ve had no results yet, I’d be very shocked at this point if it is IBD. I’ve bought some probiotic supplements today. My stomach isn’t too bad (no where near what it was a couple of months ago), but it’s not 100% back to normal yet. Have you ever tried probiotics for IBS? I’m hoping they’ll settle everything back down. According to reviews some people have success, others say it makes no difference.

[Alie4343]

Hi, thank you for your prompt response!

I believe that if something was problematic, they would have called very quickly.

May I ask you when did you get your calprotectine test done? Was it while your pains were at the worst or after ?

I went when mine were still there, but not as strong as the first two weeks.

Do you know if your white blood cells and CRP levels were raised as well?

Thank you.

[XxTeddixx in reply to Alie4343]

Hi, I had really bad cramps for about 7 days and my stool sample was taken right in the middle, so I’m assuming they captured the inflammation at it’s worst. My pain and unsettled stomach feeling continued for around another 5 weeks, at which point I gave up dairy to see if that would help and it definitely did. I’ve started to reintroduce it over the past week and I’m feeling ok (ish). My CRP was 3 and my white cell count was 7.8.

[Alie4343 in reply to XxTeddixx]

Thank you. I am very anxious because my white cell count was at 12.3 (max. is 11) and CRP at 15...

What is strange is that two weeks before, my white cell count was at 8.6... The CRP test wasn't done.

Oh well; my GI sent me for another CRP test last Thursday; I hope it went done because it's been over ten days now with no symptoms at all. (No bloating, no spasms.)

I, like you, don't get diarrhea, just one BM per day that is on the soft side when I am in pain.

Thank you for your answers.

[XxTeddixx in reply to Alie4343]

Hi Alie, I just thought I’d let you know that I got my results this morning! The MRI on my small bowel was clear and the colonoscopy showed mild inflammation. My gastroenterologist suggests that I possibly had a bacterial infection that caused the sudden dramatic inflammation and as I’m gradually getting better, the inflammation is reducing. She’s asked me for another stool sample just to make the inflammation has reduced. Hopefully yours might be a similar thing. Maybe you’ve had a bacterial infection and it’s gradually getting better, hence why your symptoms are minimal at the moment. Giving up dairy helped me. While the intestines are inflamed they struggle to digest lactose I’ve been told by the dietitian. Try not to worry too much. Having read lots of posts on here when I was feeling particularly anxious, I realised that most cases of raised calprotectin and blood results, turn out to be nothing serious. Take care x

[Alie4343 in reply to XxTeddixx]

I am so happy for you! These are great news!

My concern is my eleveted White Blood cells Count (WBC) and CRP level. I had three blood tests done. The first one done end of July showed elevated WBC and neutrophils; the second, done on 5th August showed eveything was normal, no inflammation or infection. The third done on Sept. 9 showed elevated WBC and Elevated CRP (at 15 !!!). This is why I am so worried, even if I fell much much better (no symptoms, but very high anxiety).

The gastroentorologist had me another CRP test done on Friday, and I am afraid of asking for the results...

I am getting my scopes done on Thursday. And then there is a Entero-Scan in October.

It's difficult to remain calm...

Thank you for your support.

Alie

[Alie4343 in reply to XxTeddixx]

Hi XxTeddixx,

I just wanted to let you know, that I went for the colonoscopy and gastroscopy yesterday. The gastroentorologist told me that everything looked normal. He took many biopsies and like you, I will have to wait for results. It's been three weeks that I feel much better and hope it stays this way. The doctor told me to calm down because my CRP went down to 3 last week, and it's probably even lower now. He still wants to make sure he doesn't miss anything (because of my high calpro results of last month) so, I will have to do an entero-scan in October.

Thank you again for your encouragement.

Alie

[XxTeddixx in reply to Alie4343]

Hi Alie, that’s really good news. I’m pleased everything seems to be getting back to normal for you. It sounds like you’ve got a very good doctor. Thank you for letting me know and I hope all goes well at your next scan. Take care

[Alie4343 in reply to XxTeddixx]

Hi again XxTeddixx,

My GP called me this morning and told me I had a mild case of Crohn's. It's located on the ileum part of my small intestine and 6 cm are affected). Now I'll wait for the gastroentorologist to tell me if I have to take meds, but I've been felling great for the past 6 weeks.

I thought you'd want to know.

Thank you, and have a good week,

Alie

[XxTeddixx in reply to Alie4343]

Hi Alie, I’m so sorry to hear that. That news must’ve come as quite a shock after you've been feeling so well for the past few weeks. I hope that you continue to feel well and hopefully any medication you’re given can help you even further. Thank you for letting me know.

Take care

[Alie4343 in reply to XxTeddixx]

I am sad today and afraid as well of what the future will bring. The GP told that it was very mild, but it's still a shock.

I hope my mood will get better.

C'est la vie !

Best,

Alie

[Viklou]

I've had a white cell count of 24. I was treated with antibiotics for a mild water infection. White cell counts and CRP for that matter just means there is inflammation somewhere in your body. At the time my White cells were this high I collapsed at home so got took to A&E I also couldn't stop being sick so got admitted