Anyone else had raised calprotectin level? Possible IBS/or other

[Redruby2020]

I had issues for a while symptoms and had previously been to the GP, didn’t really get anywhere. Then went back saw a really nice lady GP and was thorough in explaining all I was and am experiencing. She did quite a few tests, and one came back as above raised level. So she ordered me to repeat the test in 2 weeks. I did and it was still raised but a bit higher, so I have been referred to Gastroenterology.
There seems to be some hold up, and of course I appreciate fully that there will be a wait time.

But this is affecting me daily, I know my diet is not good, I have abused food all my life. It is also a vicious cycle because when I have particular flare ups, you then feel unwell weak etc, want a pick me up so will then eat the wrong things.
I have for a while now, let’s say go back to last year had to wash after a bowel movement as if i don’t a wipe etc is not enough and i find it adds to things smell wise etc.
I have regular odour on my body, which I know can be affected by what you are eating, especially if you have inflammation in the bowel etc.
People have noticed.
It’s making my anxiety i already have going out etc/around people worse.
Even if I go to the toilet as necessary my things smell like underwear bottoms so washing more regularly. If for some reason i don’t go when I should have(if I can) the smell gets worse.
I get in general and when things have upset me more etc, cramps/niggling/aching.
Fatigued already as I have Chronic Fatigue, but I’m sure this is all adding to it, I feel it in my back too, and sometimes nauseous.

I do after being seen for things in the past, was supposed to go back to try to get help from eating disorders for binge eating etc, and to go back and see the dietician, who I have read online would maybe help also with diet in terms of not just what I have been about previously weight and issues with food, but also maybe help with eating in terms of to help manage these bowel issues.

Thankyou for reading if you’ve made it this far. I guess overall it’s to hear others experiences and any knowledge/advice. Thanks.

Anyone?

I have ulcerative colitis and my calprotectin levels go up when I’m having a flare up. UC and its flares aren’t caused by what you eat (it’s an autoimmune condition) but when you’re having a flare up, what you eat can make it worse. Are you seeing blood/mucus when you poo? That’s one of the main symptoms of ulcerative colitis. I tend to stick to very bland foods during a flare which are easier on the digestive system. I am not a doctor or expert, but I think raised calprotectin levels can be a sign of other things than inflammatory bowel disease (IBD) such as infections. It might be worth just trying to stick to easily-digested plain food as much as you can until the next tests though maybe, to give your digestive system a chance to calm down? The Crohns and Colitis website is a good source of info for all things IBD.

I’m really sorry you’re going through this. It took me a long time to get diagnosed and I know how miserable it is not knowing what’s going on with your body. I hope you get some answers soon.

Thankyou for your response, and sorry to hear you have UC. But it’s good that you have it under control and know what to do when you get a flare up.
Yes it will be further tests or investigations in hospital that will hopefully give me answers as to what is happening.
Yes I have read that about raised levels possibly being an infection, and that is interesting because then I think what kind of infection and how?!

I don’t feel there is much time where things calm down, but seem to sometimes. And then I find it hard to avoid things when I know things are obviously worse than usual.

I also have ulcerative colitis and my calprotectin levels are frequently sky high. Was diagnosed about 15 years ago after 10 years of hell. I take medication for bile salt malabsorption and 5-ASAs for inflammation.

May I ask you to clarify some of the personal details?
You say "Even if I go to the toilet as necessary my things smell like underwear bottoms so washing more regularly. If for some reason i don’t go when I should have(if I can) the smell gets worse." Does this mean you have anal leakage? (ie watery poo in your underwear), I do from time to time and it's horrible. I would look up TENA, who have products to help this. I think you can also get charcoal-based products which I have used in the past.

Also, when having a flare, I agree with @Tafelberg that easily digestible foods are best: Heinz Cream of Tomato Soup is my go to, any soup - I try to make it as nutritious as possible; yogurts; plain foods such as rice, toast etc.

It is very counter-intuitive for most people trying to follow a healthy living plan, but I have to eat a low fibre diet (medically advised/ordained). Wholewheat and heavy fibre foods cause me no end of pain.

It can be very debilitating, especially at the beginning when you and the medics are not clear on the condition and there's no treatment plan. You will get there. Wishing you luck.

P.s thanks for the website link too, going to take a look.

I had raised calprotectin levels and was referred for IBD checks, didnt see gastro, after a couple months was called to be booked in for a colonoscopy. They took some biopsies and came back all clear, so been referred back to GP. I assume it will be put down as IBS but they now think my abdominal pain is endometriosis so think the inflammation was just a coincidence but glad it was checked and ruled out.

I had raised calprotectin a couple of years ago and with my symptoms that were similar to yours, the dr thought it was colitis. Colonoscopy was clear, endoscopy showed possible coeliac but negative ttg blood test, I had a sehcat scan which was positive for bile acid malabsorption -the meds definitely help, the flare ups are far less now. Don't let them fob you off with IBS, they need to run some tests to rule out other things first.
With regards to the smell etc try using toilet wipes instead of toilet roll, wear a panty liner or a tena pad. Carry spare underwear in your bag.
Try eating bland where possible, think I survived on toast for weeks when I had a bad flare up and avoid greasy food. Hope you get some answers soon.

Calprotectin is just part of the picture. I have Crohn's. My calprotection has never been outside normal range.

Hi thanks for your reply, sorry to hear you also have ulcerative colitis.
In regards to the bit I mentioned about smell, I can smell it through my skin I feel like, which I have heard you can if you’ve eaten certain things etc.
But when I need to go to the toilet the smell is there then if I can’t I feel like it builds up.
I don’t have watery poo in underwear, sometimes there can be a bit of wet though but I’m thinking is there any chance that could be water like if anything seeps out/or after washing, especially if I use the shower spray there.

Yes I have read that now after looking up various bits of info, about having lower fibre foods especially during flare up’s. I can relate, in that when I used to eat wholemeal bread more often, it pained me, it was like i could literally feel it going through me.

Thankyou, hopefully i will be seen soon! Was supposed to be contacted by the hospital by June, then asked me to ring if I hadn’t heard anything. But I did and these numbers no one ever seems to pick up. So I contacted my doctors again and they have chased it up, they just responded that yes we have her referral and are waiting to give an appointment 🤷🏻‍♀️🙄

There you go then, exactly, so yes it can be normal range or not, still with other things happening.

Thankyou and I’m glad you got your issues you were having properly investigated. No I won’t let them fob me off. The doctor hasn’t said oh probably just that, she was thorough and hence why when test came back as it did, I got referred.

Yes I have used wipes to me what’s in them just mixes together and smells worse. So I am using a fragrance free soap and a wash cloth.
This is difficult outdoors then.
Yes I may give pads a try again thankyou.

I’m the same. I’m glad to hear I’m not the only one, as sometimes I think they must think I’m making up my symptoms. I ended up admitted last year in a giant flare with loads of inflammation, so at least I know it’s just not a test that’s helpful for me.

You might have a fissure or similar op, in regard the smell. I had that once and was so conscious of it at work😔 Do you wear cotton underwear? That can help reduce it.

I hope you can get seen soon and find out what’s causing all your problems. The issue with getting clean after going might be caused by skin tags, they are a thing in crohns (it’s like the “gift” that just keeps on giving😔). I’ve found that simple face wipes are a good option for when you don’t have the facility for a quick wash down. They are much softer than baby wipes. Or keep a bottle of baby lotion in the bathroom and use some of that on toilet paper. Good luck.

I had raised levels 3 years ago - 300 and in retest over 2000😱 had a colonoscopy and small bowel mri. Nothing found. I had acid reflux and h pylori was found and treated.
Ffwd to Feb this year - I’d been having some awful wind issues (wind will come out w watery poo or just mucous if I don’t get a loo when it comes on - I haven’t even told dh this!) - had another calprotectin test and it was over 1500 - got my colonoscopy within a few weeks, then referred for abdo CT and then small bowel CT and endoscopy.
Haven’t had follow up appt yet but the consultant has kept me in the loop - saw him at the endoscopy and he said ‘it’s not cancer’. But they are looking for chrons (although I don’t have typical symptoms I have a lot of indicators on the scans - inflammation etc). I def don’t have colitis either.

Thankyou for your reply too, oh okay that’s interesting, so it’s been raised a few times. That’s good that they have been thorough, I hope the rest of your investigations go okay, and they can give you an answer.

My journey with that is just at the beginning.

My daughter has Crohn's. One thing you could try us avoiding ultra processed foods, or at least reducing them, as there is now good evidence that emulsifiers and gums contribute to development of IBD in susceptible people.

Raised calprotectin is suggestive of IBD but only part of the picture. Bloods usually show other issues - high ESR, high platelets, vitamin deficiency, anaemia etc. a colonoscopy will help if there is disease in the large intestine. Good luck. Once in the system my daughter's care has been very good.

@Redruby2020 Thank you for starting this thread.
As much as I have lived with my symptoms etc for many years, it's good to hear that I am not alone and we are all in it (ie the shit) together.

@Redruby2020 - thanks. I’ve had all the tests now and just awaiting my follow up appt which isn’t until October. I could push for a cancellation but they postponed it from Sept.
i hope all your investigations are ok - it’s weird cos you sort of want it to be ‘something’ they can treat but obviously not anything too awful.

Thankyou, yes I knew there would be others who had also had similar issues as myself.

Thankyou. Yes it’s one of the first things you think of with reducing processed items, hard for some more than others, but can do what you can.

I can’t remember now if they did bloods too. I will have to check.
But yes still waiting for hospital to see me.

Yes I had very high calprotectin about 2 years ago and whilst I was waiting for a colonoscopy I discovered it was wheat/gluten that was causing it! GP didn't give me any advice about the diarrhoea so I went on a very restricted diet to try to calm things down, didn't help, but then when I decided to get rid of the wheat crackers I'd been having, all the problems stopped within 2 days! So I was having a massive reaction to wheat and/or gluten. It was awful at the time though, the smell was so toxic! GP thought I may have Crohn's, but I don't know if I do or not as I'm OK now.