See this now worries me even more. Your calprotectin was 600 and lots seem to be in hundreds that are worried...

I had a result today that my doctor said was >6000 (wish I would upload a pic for someone to decipher as I asked the doc to forward on the notes / numbers etc) 

I've been referred for an urgent appointment with gastro within 2 weeks.

I am in so much pain at the minute it hurts walking around and when I eat. I had a major change change in bowel habits with a lot of mucus, and sometimes passing just bloody mucus ans no stool. 

I am also exhausted! 

I know there's a chance this is one of the bowel diseases but more worried this could be bowel cancer, all my bloods seem to come back normal but with my calprotectin being so ridiculously high and the amount of pain I'm in, I'm definitely worried! 

Hi, 

Over the last 9 months I've been having some weird symptoms. I get awful stomach cramps and then feel like I'm going to pass out.. I get all hot and clammy. One I realise my bowls I feel fine again. I've had this happen twice to me ans the second time was worse. I went to my gp about this as I was abit concerned and bowel cancer is hereditary. The doctor sent me to do two samples one was for any infection the other was for calprotectin. all the infection results came back negative which is a good sign but my calprotectin came back in the 4000 my gp said don't be to concerned as usually the results for bowel cancer or something more serious is in the 200/300. She referred to a consultant to find out if it was chrons or colitis . He sent me for another stool sample of the calprotectin and a celiac blood test with a test of my iron. My iron was very low but my celiac results were normal. My calprotectin has also returned back to normal. My consultant isn't willing to get me booked in for a colonoscopy as my results are normal. He told me I have to do regular 3 month stools and when it goes high that's when he'll get me in for an urgent colonoscopy. It only happens when I eat certain foods also. I'm not sure what else I can do other than ask for a second opinion but again I've not had another flair uo and usually it's every 3 months. I haven't had one sice my last. I want to point out my mum has the same symptoms and most recently has passed out and knocked herself out, my aunt has the symptoms, my cousin has symptoms or at least 1 flair up a day and she passes out ( we are both under same consultant ans he's referred her to have an mri on her overies), my sister and niece both get very mild symptoms and also my mums mother has these symptoms too but she's unable to tell us what is happening ans how it feels as she has dementia and Alzheimer's. I really don't know what else to do as the consultant won't do anything else for me until I present with high results. 

Hi,

Reading all your stories has calmed down. Beside myself, I've had IBS on and off over the years, things have been getting worse so went to the GP last week, had FIT sample and calprotectin, both were positive and calprotectin come back as 1096. I have been referred urgently to go a colonoscopy, I have a phone consultation this Sunday. Had bloods done too and have low iron/anemia , and ESR was 32 all other results were normal , liver/kidney/thyroid etc. 

The wait/worry is making me worse I think.

xx

Don't worry all will be fine, your calprotectin was probably high due to your IBS, and symptoms of IBS do get worse as time goes on. I would try and look for an anti inflammatory diet and change the way you eat and what you eat and see how you get on. Good to have the tests done for your own peace of mind and be on the safe side but it doesn't sound anything to be worried about, the waiting is horrible but time goes so quick you will have your clear results before you even know it! All the best x

Thank you!! I'm a massive worrier and always focus on the worst. I will research and definitely start an anti inflammatory diet, the gp also mentioned celiac disease so I've been reducing gluten too but I think with the anxiety and stress I'm still getting flare ups. 
 

I'm hoping and praying it's an IBD condition and not the other . 
 

xx
 

xx

Hi there,

Hopefully your colonoscopy happens soon and really hope it goes ok and you get some answers. Ive had a similar situation recently... I had a stressful few months buying a flat and after about 6 months of stress I started having bouts of diarrhoea after eating for a couple of hours but only very occasionally, about once every two weeks. This went on for about 3 months and in between I was fine except low iron around the same time which I took tablets for and energy improved from those. So I was feeling better if a little done in from the stress - I've never been diagnosed with IBS and just put the stomach upsets down to stress - we had some major family stress soon after the sale went through too which was around the last time I had diarrhoea (2 months ago) - so basically it's been a pretty relentlessly high stress year.
 

I had some stool tests done to check anyway and the first one came back 1300 faecal calprotectin in Oct which worried me. I've had a wait of about 5 weeks between getting the tests results back and my next appointment with the doctor and in that period I have become extremely anxious. I've had blood tests and they are all pretty much normal - iron improving. But the faecal calprotectin test came back as 2000 this time (this was last week, Nov).

The doctor made an urgent referal to gastro and I'm now waiting to hear from them. I think the accumulative stress of the past year has made my resilience to these worries quite low and im struggling not to be constantly anxious about it, and then I'm also finding myself quite down as a result - which is a concern as I know there will probably be a fair amount more waiting.

The most confusing thing is that I've not had any really obvious symptoms for two months, but my calprotectin levels are high and seem to be going up.

I don't feel ill, but my anxiety is making me overthink everything my body does and Im losing confidence in myself - not always sure whether I can commit to doing things because im worries I could get/be ill for example. I'm trying to carry on with most things anyway, but finding it hard.

There are odd mild things that I could consider symptoms like wind after eating sometimes and often some urgency to go to the loo first thing in the morning but if I take away the anxiety about it all these are probably things I wouldn't think much of usually. 

The doc has said it's likely IBD which of course I've researched and found some people say is really manageable and others are very ill from - so of course I've found myself anxious about that too. I live on my own which I don't think helps, and I'm a bit scared of going through all of the tests and potential illness on my own. I'm basically catastrophising everything and I know it but finding it hard to be positive - the unknown is taking over really. I think maybe my coping resources are at a bit of a low as I'm usually more resilient and pragmatic. 
 

It has been helpful to read this thread and see that it's not worth diagnosing myself as things might not be as scary as I'm expecting them to be, especially as I know I'm not at my best emotionally at the moment. So thanks to those who've contributed with reassuring posts and updates. 

If anyone has any suggestions for managing this interim period of the unknown and worries/anxieties that would help too - but really just hearing outcomes that were pretty positive has been helpful. 
 

Thanks x 

Hi - I am exactly the same as you - can't stop worrying and it's exhausting! 

I have had loose stools and no control, (although is better than it was now), low tummy cramps/pains, not eating as much and trying to stick to really plain stuff and awful really low back pain.

Blood tests all okay other than low selenium levels.  Consultant rang me on 7 December and said stools showed no blood or infection but my large bowel was very inflamed and my calprotectin level was 1720.  He said it wasn't IBS and was thinking IBD, (but still can't help worrying about the big C). Consultant said 'tests were negative for cancer' but I'm still worried and having endoscopy with biopsy.

I have a complicated medical history as I had a gastric bypass 11 years ago and have ulcers at the joint of my new stomach.

Got telephone pre-assessment Monday 19 December for the bowel prep for my Endoscopy, (don't know date yet though !)

It is helpful to read through this thread - thank you x

Hi

Came across this thread after searching about high calprotectin levels. My levels aren't extremely high, they are 200. I have had a FBC, thyroid function and auto immune blood testa done and all came back fine. My GP said she wanted to test Calprotectin levels and H-pylori (still awaiting this one). I have diagnoses of PCOS, Hyperthyroidism and Raynauds. I have never officially been diagnosed with IBS, but have always had issues and flare ups that have required Lansoprazole for a month. I have been on Lansoprazole now for a month and am due to come off them again. Last time was Dec 2020 when I had a flare up.

So although my result isn't in the thousands, I'm worried as it is above normal. GP asked the receptionist to call me to arrange a telephone appt on Monday to discuss the next steps. She reiterated through the receptionist, that I wasn't to worry and the result was "as expected". However I suffer health anxiety so I am worried, especially after reading this thread :( 

Hi

I am to like you absolutely terrified.  I too have bad health anxiety and after recently having a fit test they found low levels of blood in it. I was referred for urgent colonoscopy and on viewing all was fine. Had biopsies taken which have come back in some parts showing inflammation.  I've been referred to gastroenterology but atleast an 8 wk wait even though its urgent . My Dr done a faecal calprotein test which shows my levels were at 329. I'm really worried now as everyone on the forum seems to be saying when it's very high it more likely not to be cancer and when it's 200/300 it's more likely to be. I'm so worried now having to wait 8 wks atleast.

I have coeliac disease but I'm so scared now that maybe it's my small bowels and obviously in a colonoscopy that's not looked at.

Hi 

My husband had this test that came with 315.

Did you had further tests already?

Hi Jessica, I know this is an old thread and I hope you are now doing well. I am having same symptoms and been put on a 2WW, have you found out what was causing your symptoms?

Hi, this might sound strange but from the gastro issues and you mentioning nearly passing out. Look up a condition called POTS (Postural Orthostatic Tachycardia Syndrome). The reason I mention this is my daughter's calprotectin levels above 500 so referred for urgent colonoscopy. (People keep mentioning IBD but there is also bowel cancer in the family). Unfortunately she could not tolerate the full procedure but they have taken biopsies, awaiting results. But while all this has been going on pretty much every time she stands up her heart rate elevates causing her to either feel she is going to pass out, or has on a few occasions. Apparently from my research POTS can cause gastro and lots of other issues. Can be linked with MCAS. I don't know what any of this means as awaiting results and to see gastro Dr as well as she has been referred to see a cardiologist. I understand how stressful this all is as I am worried sick as she is ill everyday. I hope you have managed to get some answers and are feeling better and less stressed. 

Hi, this might sound strange but from the gastro issues and you mentioning nearly passing out. Look up a condition called POTS (Postural Orthostatic Tachycardia Syndrome). The reason I mention this is my daughter's calprotectin levels above 500 so referred for urgent colonoscopy. (People keep mentioning IBD but there is also bowel cancer in the family). Unfortunately she could not tolerate the full procedure but they have taken biopsies, awaiting results. But while all this has been going on pretty much every time she stands up her heart rate elevates causing her to either feel she is going to pass out, or has on a few occasions. Apparently from my research POTS can cause gastro and lots of other issues. Can be linked with MCAS. I don't know what any of this means as awaiting results and to see gastro Dr as well as she has been referred to see a cardiologist. I understand how stressful this all is as I am worried sick as she is ill everyday. I hope you have managed to get some answers and are feeling better and less stressed.