Worried re sky High calprotectin levels

[binkyblinky]

Sorry if this isn't a proper AIBU but would appreciate some advice if anyone has had a similar experience.

A few weeks ago I had a colonoscopy and I'm very grateful for everyone's support and advice at that time. The results of my colon appear to be normal I had 11 biopsies which shown as recovering from an infection.

A bit of background, in February I was quite unwell and my doctor suspected I had Crohn's disease. A faecal calprotectin test was done And my calprotectin was found to be 16 times the normal level (normal level 100, mine was 1600)

I saw my consultant two weeks ago who said he isn't ruling Crohn's out but he suspects I have IBS. This is because my bowel and: looked healthy. However, he wanted to do another faecal calprotectin test on me. He said that he didn't expect to see me again but wanted to check my calprotectin levels. He said it's very unlikely but he might need to see me as an NHS patient and refer me for a capsule endoscopy.

Friday morning I had a very garbled voicemail from the consultant and it said "I think we need to see you at the hospital, I can't give much information via voicemail but I will send you a letter which you will get next week and I will treat you as an NHS patient"

I tried to call the consultant back straight away but he had already left for the day.

So for three days I have been worrying about the results, he said he would only need to see me again if my calprotectin levels are significantly high.

I am absolutely terrified that this is something more sinister. Does anyone on here have ridiculously high calprotectin levels and could you tell me what this is a indication of? The doctor said he wouldn't roll out Crohn's but he suspected to be IBS however he did say that if my calprotectin levels are still super duper high then it won't be IBS it will be something else.

Three days I've been worrying about this 😔

I’ve got crohns and I’ve never had a calprotectin test (to my
Knowledge but have had this for over 20 years so I may have forgotten)

In my experience and sort of worry can take a toll on your gut so try to relax.

Where I live we’ve got one of the best IBD teams, so I’m guessing that’s why they’re putting you through the nhs.

You’ll probably get asked to an ind clinic. Possibly they’ll have a look at the entrance to your colon and take bloods.

You can’t diagnose crohns with an X-ray so the other possibility would be an MRI.

Try to relax.

Have a read of this

It seems that tha calprotectin test is the trigger for a Gastro referral.

www.calprotectin.co.uk/about-calprotectin/information-for-patients/

My ex has Chrohns and his calprotectin is always sky high. It took years for it to be diagnosed properly. Also his is in part of the bowel that couldn't be seen on a colonoscopy because it was too far up, so that might be why it's not shown up on yours.

Thanks @Singlebutmarried - I've already had an MRI, which showed gallstones and fibroids. Forgot to mention that!

What does a gastro referral mean?

Doc said he was referring me to a dietician for IBS and mentioned a low fodmap / gluten and dairy free diet .... but I'm guessing he'll want to investigate first

@igglu that's what I'm thinking it might be. But worried it might be cancer or something too 😣

Hi,

I have chrons and while your levels are very high, this number is not uncommon if it is indeed chrons you have and you are in a flare. I've been over 2000 at times.

Its very worrying when the numbers are high but this probably means that you are moving towards a diagnosis of some sort and then some good medication! There are some really effective chrons meds out there if that is what you have.

Easy to say I realise, but try not to worry too much, its good you are getting moved to the NHS, probably to be set up with the IBD team, the support you get from the team certainly in my case, is amazing.

Let us know how you get on

Thankyou @HGC2 - I hope you are coping well. If the treatment helps with my constant tiredness I will be so happy xx

@Singlebutmarried I am surprised if you haven't had a cal protectin test with having crohns. My son diagnosed at 8 with crohns has had many of these tests over the years [ he is now 19 ]. The cal protectin is a stool sample --- have you done these?

@binkyblinky a Cal protectin test is to see how much inflammation you have. The higher the inflammation numbers, the more chance of crohns or colitis. IBS doesn't cause inflammation, so I am not sure why the consultant said this.

Have you had a colonoscopy? This will determine whether you have IBD [ crohns or colitis ] The capsule endoscopy is to look into the small bowel. Normal scopes often can't reach this part. To do this you have to swallow the capsule [ very large pill ], then carry a monitor around for a few hours. My son had one of these done when he was 13. Good luck with it all.

@Toomboom I’ve not had to give a stool sample for years. So very likely have had one many years ago but not that I specifically remember was diagnosed in the 90s and the resting now is very different to what it was then. The only level I remeber getting tested were CRP levels but they were done through bloods.

Yes, I've had a colonoscopy which I mentioned in my original post.

Doc thought from the colonoscopy biopsies That results showed recovering from an infection that I had postinfection IBS but just wanted to check my faecal calprotectin again .... Now it would seem it's not IBS but perhaps crohns somewhere else that is too far away from the colon to spot in a colonoscopy .

No advice to offer but I sympathise it's horrible when they get you waiting a weekend with unknown news

@binkyblinky that was what happened to me, my colonoscopy showed inflammation but didn't get to all the bits so I needed an MRI to show that.

My calprotectin was 2300 in July and I’m still waiting for the gastro team to get in touch after being referred (almost definitely Crohn’s in my case).

Try not to worry - calprotectin only indicates inflammation, I don’t believe it can be used to diagnose anything sinister like cancer. In all likelihood if your calprotectin is still high, then you’ll need more tests and that is what the consultant was phoning about.

I have Crohn's and my calprotectin has been around the 6000 mark before (I think they wrote me into a journal ). They patched me up and I'm still chugging along!

DS had calprotectin levels at 1391 - normal was less than 50. The second Calprotectin test a few months later came back at around 300. and just before he had a colonoscopy it came back as normal as did the colonoscopy. Don't know if that reassures. Things calmed down for a while but three years later his digestive issues have returned - possibly brought on by a dose of antibiotics.