Causes of high calprotecin levels?

[HJay]

Hi,

I have had stomach problems for a while, my symptoms include:

Frequent bowel movement , several times a day. Stomach pain, especially after eatting and when having a bowel moment. Blood and mucus in stools, and sometimes it just mucus. Always feeling tired and loosing weight.

I have had a colonoscopy and endoscopy all came back fine. So the doctor doesn't think I have IBD.

However my calprotecin was 485, both times i did the test. I'm wondering if anyone knows what else other than IBD, could cause my calprotecin levels to be at 485, and my symptoms?

I have also been tested for celiac, which came back negative.

Also would very much appreciate any advice on how to manage my symptoms, it's really effecting my life and I can't seem to get any relief.

Many thanks

[Diamond12345]

Hi , sorry to hear this , not easy for you.

It is good they don’t think it is IBD but on the other hand you want to know what is causing it.

Have you been tested for any bugs, c diff etc, certain bacteria in the gut can cause problems.

Or it is possible you can take a really good quality good bacteria tablet from a health food store . Maybe this may help.

Have you taken any antibiotics for a long while? This can cause issues.

Definitely get another appointment to find out what is causing it and some medication to help you heal!

Sounds like you still need some sort of suppository / foam (pentasa suppository or pred foam) for inflammation there so you can dampen down the rectum. The rectum has so many sensors which causes you to need the loo more.

I do hope you get better soon.

[HJay in reply to Diamond12345]

Thank you for replying and your advice. It has been hard not knowing what's wrong, and then what to do to manage my symptoms.

I have been tested for bugs, which was all fine. But not sure which ones and if the test covered all the bugs, or bacteria in the gut.

I have been taking probiotic tablets. Haven't noticed a difference yet, but maybe I just need to be more patient.

I haven't taken antibiotics it been about 3years now, apart from my stomach problems and always feeling tired, I'm pretty healthy.

I have another appointment at the hospital coming up, but I'm worried they will just discarge me because they can't find what's causes the problem. I'm just wondering what else they can test me for?

I think I should ask them about the bugs and gut bacteria, just to make sure I've been tested for everything.

I feel like I'm going mad trying to work out what's wrong with me. I don't even know what to say to work, as I been off sick so much, because I dont have a diagnosis of anything.

Just wondering could this just all be in my head? I've head mental health and stomach problems are linked . Could this also effect my calprotecin levels?

Thank you so much for all your help. And I'm really sorry for all the questions. I don't no who to talk to about this stuff.

I hope you are ok.

[Diamond12345 in reply to HJay]

Hi again,

Sounds to me you have been very sensible and have done lots of things to help yourself.

I am sure it isn’t in your mind. Feeling worried about it won’t help your stomach , that’s for sure. I don’t have stomach problems as such but when I get stressed it goes straight to my gut . Worrying about my daughter ,I am sure , you can imagine how I am affected .

Anyway , there are many types of issues in the stomachs, rectum etc and if you are still having symptoms they will need to explore more , tell them. Or it may be worth exploring the food allergy route separately yourself or right a food diary to see if there is a pattern. Also if there is a food that you think aggregates your stomach then remove it from your diet for a month and see if that helps. Only do one food at a time, so you know what it might be .

Maybe have a second opinion with a doctor who specialises in the rectum area.

The doctor we see has a special interest in IBD , the doctor before was gastro but more surgery and cancer operations so he kindly told us we needed a doctor up. To date with medicine and treatment for this type of illness . I know you haven’t got IBD but it is still the same area and you need a doctor who is really up with all the different causes of your symptoms.

Don’t give up and stay positive because you will get it sorted.

Not having IBD aid already so positive.

I am sure you will get some answers very soon.

Keep pushing for an answer.

Take care and stay in touch.

[HJay in reply to Diamond12345]

Hi there,

It's been really nice to be able to talk to someone about it, and you have been so supportive and nice, even though you don't know me. So thank you.

I think a food diary sounds like a good idea. I will speak to my doctor about this when I'm next at the hospital. I'm being seen under gastro clinic, but not sure what the doctor specialises in. It's all very confusing to me.

Thank you. That's the hard bit, staying positive, but deep down I know It will work it all out.

Take care too.

[Newtothis22 in reply to HJay]

The fact you have such a high cp level indicates there is a physical cause, so this definitely isn't in your head. I can't offer advice as I am new to this too but know the difficulties and discomfort around having blood and mucus, frequent bowel movements and tiredness. In some ways I imagine it would have made more sense and been satisfactory to have IBD as then you know the problem and can work on addressing it. It is very good news you don't have IBD but in your shoes I would feel all at sea. I have done endless internet searches until finding this forum and already receiving sensible and kind advice. I can tell that it will be as helpful to you too. You mentioned too that you are losing weight, so again this is evidence that there is a problem that needs discovering. If the hospital discharge you then keep going to your GP and seek other referrals to dieticians and colorectoral specialists perhaps. It isn't the end of the line but a continuation of a puzzle which needs to be completed since your body needs to function well.

With work - could you talk in general say IBS with inflammation in the gut? GPs are good in framing things in a way that doesn't reveal too much but keeps employers content.

[HJay in reply to Newtothis22]

Hi,

Thank you for your message. I think I do need to keep at it with the hospital, and hopefully will get some answers.

sometimes, it feels nice to just be listened to, which when I come out to appointments, is not the case.

I haven't thought about ibs, maybe I could discuss this with the doctor.

Thanks again.

I hope you are well, and have some support.

[Diamond12345 in reply to HJay]

Just had another thing to tell you.

Incase you were not aware your calprotecin level should be under 50 to be normal , so 485 is quite high so there must be a reason for this or was?

Maybe get your GP to check it again, worth knowing if it is coming down.

Maybe a IBS specialist may help if it 100% not IBD.

[HJay in reply to Diamond12345]

Hi again,

Thanks. That's why the GP referred be to gastro, because of the high calprotecin levels. The gastro doctor did the colonoscopy and endoscopy and it came back all fine, so doesn't thinks it's IBD. I repeated the test which came back at 485 again. I think the gastro doctor doesn't know or hasn't worked out what is causing it to be high. But I have a follow up appointment next week. i just really want to know what's wrong with me.

[Diamond12345 in reply to HJay]

That is great you repeated the test.

The doctor will have to continue getting to the bottom of all this and he or they will.

In the meantime be kind to yourself , and believe you will get better soon.

[HappyD]

Hi, reading your symptoms you sound like me!

My calprotecin is 1050, Iv had a colonoscopy and an mri on intestines and everything has come back normal. I can feel ok for a week but still pass a lot of mucus and a lot of the time just passing mucus alone and then get pain, feel bloated, my lower back hurts and I feel sick so I can’t eat. I am too losing weight and not knowing what is wrong with me is causing me anxiety. I’m back soon to be put under general anaesthetic for my consultant to look at something in a hard to reach area? I have started taking a probiotic (bio kult) and I’m eating very plain foods.

Please keep me posted on how you are and stay positive!

I hope you take comfort in my reply as I have your post knowing I’m not the only one feeling at a loss to what is wrong with me xx

[HJay in reply to HappyD]

Hi,

Thank you for your reply, sorry to hear your also going through a difficult time. It is really difficult not knowing and feeling so ill, so totally understand were your coming from.

I hope your consultant find what's going on, and get you better soon.

From speaking to others, I've learnt that you have to keep at it with the doctors, until you get an answer, and find a treatment that works.

Thank you for your kind words.

Take care

[amy100]

I dont think much to calprotectin. but it can be caused by IBS and certain medications ie NSAIDs like ibuprofen. If your colonoscopy is normal then its not because of IBD

[HJay in reply to amy100]

Thank you for replying. That sounds reassuring.

I only take paracetamol, I can't take anything else as I have asthma. I've only starting taking paracetamol recently because of the stomach pain.

Maybe I need to look more in to IBS.