Calprotectin levels 3000

[Boris-bobo]

Hi I have had some tummy problem lately. I ve done a Calprotectin test and it came back as 3000. GP done a urgent referal to GI fir colonoscopy and pill camera. Anyone had these high levels? I have high anxiety that it may be something serious very new to this. Any rely welcomed.

[FRreedman]

Hi, yes your levels are high, you don't need me to tell you that. Your gp has done the right thing by referring you to a GI consultant, and organising a colonoscopy. I know it's easy forms sitting here to say don't worry, (with Crohns or Colitis it seems to be an easy thing to do[worry, that is]), but please remember the Calprotectin test measures the amount of inflammation, and nothing else. So the indication is you have an inflammatory bowel disease. You now need to know where is it? what is it? what can they do about it? The colonoscopy is probably the best investigation, as it can provide the answers to all three questions. It can also enable your consultant to work out multiple ways of reducing the symptoms, and making your life easier in the future. Good luck.

[Boris-bobo in reply to FRreedman]

Hi

Thank you for the reply. I hear you. I am aware that Calprotectin is a marker for Inflammation. I was wondering if others had this high levels too and what the outcome of the investigation was. GP said it does not exclude bowel or colon cancer. Suffering from generalized and health anxiety makes ne catastrophise and I think of the worse.

What was your experience if you dont mind me asking. I only have sone discofort in my abdomen. No other symptoms al all. My blood count is normal. I go regurarly and no diahorrea.

[Valbaty54]

Hello.... your calprotectin is high but if it's any consolation, mine is even higher at 4024. I have Ulcerative Colitis and my consultant is doing a series of tests to see if my current meds are working. We think not! I'm seeing him soon for a review. Once you have had your colonoscopy and pill cam, your doc will have a complete picture of what's going on inside and be able to start treatment. Try not to do too much online research and worry yourself unnecessarily.

[Boris-bobo in reply to Valbaty54]

What would happen when I first see the gastroenterologist ?

[hhl18]

Hi there. My son had very high calprotectin levels but the test he did only recorded upto 1800 so we just know he was above that. At the time of the test he didn’t really have any symptoms though had been quite ill during the previous year & still had a bit of fatigue at times. The colonoscopy will tell you what you need to know & then you can decide what to do when you know what you are dealing with. In my son’s case it turned out to be Crohn’s Disease - he is only 12.

I haven’t come across many people with similarly high levels to be honest & his have been a bit hard to shift. After 8 weeks of liquid elemental diet (he opted for this rather than steroids) his levels were still over 1800 so we didn’t really know whether it had reduced though he was feeling better. His latest test was 1095 after working hard on his diet & taking supplements (to address gut bacteria & reduce inflammation) & working on reducing anxiety & suppressed emotion - these factors all play a part I believe.

His levels are still considered high but I am relieved they are heading in the right direction. Taking medication would likely reduce it quicker & your consultant would discuss that with you I’m sure. We have opted for a more natural route which isn’t for everyone.

I know it’s easy to say but try not to worry. Your Dr has done the right thing to do the test & refer you - we had to wait 6 months for a referral before we even had the calprotectin test! You will likely get the results of the colonoscopy pretty quickly. We were told straightaway afterwards what they thought it was then had it confirmed from the biopsy a few days later. Hope you don’t have too long to wait & that you quickly get the help you need

[RuthRob101 in reply to hhl18]

Hi. I was wondering how things have been going for your son. My 15 year old daughter was diagnosed with severe Crohn’s in February. We have been on the liquid feeding therapy and antibiotics and have been hoping to avoid medication where possible, particularly as in the early days azathioprine gave her pancreatitis. Unfortunately we’ve just had a Calprotectin result of 2700, so now I’m freaking out. I’ve been deluding myself that we could beat this and in a gentle way, but am feeling hopeless right now.

[hhl18 in reply to RuthRob101]

Hi. Sorry to hear you are going through this now - I know it can be so tough, particularly in the early period of a diagnosis.

My son is doing well at the moment but it has been quite mixed in the last year with some challenging times.

Basically, we managed to get his calprotectin down from over 1800 to about 300 without medication but we had consulted a functional medicine nutritionist & paid for some tests ourselves which guided the programme he followed. We found e-coli in his gut & once that was addressed the inflammation started to come down. We did a lot of work on balancing his gut Microbiome & followed a fairly strict diet so it wasn’t particularly easy, but I was pleased with the results.

Unfortunately he had a nasty flare last Autumn which was triggered after he’d had a stomach bug/virus & ended up staying in hospital for a while. He had lost a lot of weight very quickly & even the liquid food went straight through. So he ended up with antibiotics & a course of steroids which helped get things back under control.

Since then we decided to take the Azathioprine & work on diet & nutrition alongside. I have to say that for him this approach has worked really well so far. He has no side effects, he has grown well & is going successfully through puberty, which active Crohn’s can delay.

Although my preference would always be to minimise medication, sometimes it is needed & it can be such a relief when you find one that works &that isn’t having unpleasant side effects.

It may take some time for you to find what works but you will get there.

I would recommend gluten-free/dairy-free diet as this often helps & some people find the Specific Carbohydrate diet really helpful. Certainly a gentle reintroduction of easily digestible foods after the liquid is good,

Hopefully they will find something that works to get those levels down though - it may take a bit of experimenting but is worth persisting. It is unfortunate that you had a bad experience with Azathioprine but there are lots of other options.

Fingers crossed for you. Which hospital are you under?

You may find CICRA useful. It is worth getting in touch with them if you haven’t already. They provide lots of useful info (& Information Days when events are allowed) & they have a family support worker who is available to chat to. She was a great help to me when we were going through a tough time & she connected me with other parents of IBD children too, which has been another source of support.

I hope this has been of some help & can offer some hope. Please feel free to ask any other questions

[sbullntp in reply to hhl18]

Hello! I'm so happy to hear your son's level came down with diet and gut repair. My daughter's recent GI MAP showed a Calprotectin level of 3734 but everything else is "normal" enough except that she does have slightly elevated levels of h. pylori. No blood in stool, no parasites or worms, but gut immune function is very low telling me she's been fighting some sort of infection for quite some time. I'm a functional nutritional therapy practitioner so I've put her on an auto-immune paleo diet and we're treating for the h. pylori as well as using probiotics to help her good gut bugs increase so decrease inflammation.

I hope your son is still doing well! It's so stressful on us parents when our kids are sick. ((Hugs))

[misssourdough in reply to sbullntp]

thank you for this post- new here and my numbers and biome results seem to mimic what you have stated. I just started with a functional doc who is putting me on mastic gum to address the H pylori and enzymes and then get into the probiotics etc am praying this will help. I am vegan due to being vegetarian with lactose intolerance so assuming paleo will be tough- any other suggestions?

[sbullntp in reply to misssourdough]

Hi there, h pylori is a tough one! If the mastic gum doesn’t work, I recommend matula tea. It’s expensive but it is very effective. You’ll definitely get more nutrients from a paleo diet then from a vegan one. Enzymes will help to digest the animal proteins. My daughters second test came back with zero Calprotectin!

[misssourdough in reply to sbullntp]

thank you so much!! hoping i have similar results .... fingers crossed and lots of prayers

[misssourdough in reply to misssourdough]

oh also curious where do you practice?

[eslteacher100]

I also had calprotectin level of 3000 when tested. Then, after colonoscopy I was diagnosed with Microscopic colitis. Doesn't sound like what you have though since the main symptom is chronic diahrea.

[Goodo1]

Hi there, my levels have just come back at 3700. My CRP levels in bloods are also high but are usually quite high as I also suffer from other health issues, discoid lupus, fibromyalgia, RA, recurring carpal tunnel, chronic migraines etc. I’m booked in to see a general surgeon on May 31st and will go from there but am quite concerned as to what is going on with my bowels now. I have been bleeding from bowels for the past 5 weeks, had bloating, stomach cramps etc. my doctor is pretty sure it’s a bowel disease of some sort. She does not believe it’s cancer as I only had a colonoscopy 5 months ago and it was all clear. Hoping to get to bottom of this ( so to speak ) as soon as possible as I’m so tired of having so many things wrong with me. I’m only 39 and already on so much medication and sick and sore all the time. So over it.

[Lorette90]

Hi how did your test go and how are you now?