I'm hoping someone can give me a bit of advice as I don't really know what to do. Here goes I started having bowel related issues when I was really young around 8/9 and would go weeks without going to the toilet I was diagnosed with chronic constipation and given suppositories and no further tests were done. Then when I got older around 12/13 I started having extreme stomach pain maybe twice a year where I would be sat on the toilet for hours at a time it was like someone was pulling and squeezing my insides and only when I had finished going the pain would stop, I attended out of hours drs and was told it was ibs. This continued and would happen every couple of months. Fast forward 15 years and it's got to the point where I can't cope with it anymore it now happens every couple of weeks rather than months so I went to the GP who did a stool sample after me being in really bad pain/diarrhea/bloating/mucus etc for a few weeks the calprotectin was over 600 I had a colonoscopy done which came back clear and my consultant has said they don't think it's small bowel related as my calprotectin is to high is this the case? There's a large family history of bowel cancer and Crohn's on both sides so I'm really concerned. Thank you in advice x
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Hannahs0991
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I have suffered with Crohn's disease for over 50 years (I am now 64), and I have never heard of Calprotectin being too high for IBD. Calprotectin is a measure of inflammation, and nothing more. I have read, on this site, readings of up to 3000. I would ask the consultant what does he think has given you this reading, and what about having a good old fashioned Barium meal and follow-through (which will show up the whole of the small intestine) and a Barium enema which will show all the large intestine. I, sometimes, wonder where these doctors have hidden their brains, all the modern tests are great but, if they have limitations, go back to the beginning and start again. Most patients aren't interested in what is not wrong, but in what is wrong and how can it be made better or cured. Good luck, keep well and stay safe.
Thank you so much for your reply I can't imagine what it's been like living with Crohn's for so long but I hope your doing well. He thinks it is IBS as colonoscopy was clear and recommended the fodmap diet then suggested if that doesn't work in 6-8 weeks to have scan but as it's private I have requested an entergram or however you spell it lol whilst I try the diet rather than just prolong it any longer so they can look at small bowel as that is where my auntie has it and she also had calprotectin around the same level as myself. When I asked what could of caused the levels he suggested that it was maybe a one off IBD flare which I have never heard of before so I'm not sure if this can happen? Or maybe a food infection so my reply was I must be cooking my food wrong then as Im bad with my stomach every couple of weeks now after that he didn't have any answers.
I have never heard of a one-off IBD flare. The nature of IBD is that unless you have Ulcerative Colitis removed, surgically, you are stuck with it for life (certainly with Crohn's anyway). At least the low Fodmap diet is the correct way to go (either IBD or IBS). Personally, I would request a second opinion on his diagnosis, as it sounds like he is fobbing you off, (I may be wrong, but have you asked your aunt's GI for an opinion?) Good luck, have fun and stay safe.
I'm quite relieved it's not just me that have not heard of a one off flare as like yourself I believed you had IBD or you didn't there's no in-between. Yeah I agree with the diet I eat quite a lot of the green already so don't think it will be to hard to cut out some more reds. That's exactly how I feel that I'm bring fobbed off my first consultation with him before he even heard all of my symptoms or my calprotectin result he said it was ibs and now because my colonoscopy is normal he's saying it again he literally brought me to tears because I just felt like he wasn't listening to me and from reading through this forum IV noticed that's all to common.
Did you know of this consultant prior to being tested (was he your choice, or was he just there?) I only ask because it seems as though your symptoms are being made to fit his diagnosis rather than the other way round. (Think about it and you will see what I mean). Normally the consultant will treat you as having nothing wrong and will, then, by analysing your symptoms, come to a conclusion and diagnosis.
No I didn't know this consultant it was just someone my private health insurance put me in contact with. I understand what you mean as that's exactly how I feel it's like he only listens to the symptoms that fit and nothing else he may be right it may be IBS but surely without doing all the tests it can't just be left at that. He had said IBD from the first conversation we had then when I mentioned my calprotectin level he said that changes everything then I told him of my family history of bowel cancer and Crohn's on both sides he said I don't think it's going to be anything sinister I hadn't even been examined by a Dr at that point. I rang my gps but there's not much they can do now as I'm under a consultant.
I'd ask for another calprotectin test. Mine are consistently raised. If still inflammed ask for an MRI. My Colonoscopies don't show anything and I'm still IBS. The last Colonoscopy was a fail so waiting to see if they'll do a capsule endoscopy. At least my lot are still looking for an explanation. My brother has crohns too
I'm sorry your last colonoscopy didn't go well I hope you get some answers soon. I have asked my GP if they can re do the calprotectin but she said there's not really much point as it has already shown raised levels which need further investigation. I'm being referred for an enterogram which I believe is the same as an MRI but I'm not sure, to look at the small bowel although my consultant doesn't think will show anything as he said my calprotectin is to high for it to be small bowel Crohn's. I'm glad they are still trying to find out what's causing you all this trouble.
Calprotectin is the only thing that shows inflammation. My bloods are ok, hense why I have done a few. I just thought they may do another to see if it's gone down
Yeah, as long as the pain isn't 24/7, I feel like I should be grateful. I suppose I am ok really, as long as I don't think about it. Keep well and stay safe.
Hiya, I’ve been in similar situation, have been unwell in relation to my bowels for a long time, and have had two bad episodes of what was thought to be ibd flare ups. This summer (June until September) I really struggled and due to a slow response by nhs (obviously because of current situation) when I had colonoscopy and mri they were both ok, as were my biopsies. My calprotectin results were over 2000. Goodness knows what’s going on!bi hope you find answers soon too x
Sorry to here you weren't doing to good I hope your feeling better now. I know the wait is so long isn't I ended up going private in the end but to be honest after all of this I'm wishing I stayed with the NHS, have they said what they will try next to find out what's causing your calprotectin to be so high? And thank you I hope they find some answers for yourself aswell xx
I hope they don't just discharge you as something has to be causing the calprotectin to be as high as what yours is and they get to the bottom of it. I'm sure I came across your post when I first came on here it's bizzare we have quite similar symptoms from a young age I was also lactose intolerant when I was a baby and was put on soya milk but just grew out of it as I got older I wonder if that possibly plays a part in all of this? How are you doing at the moment? Xx
I'm still under the gastro after four years. I keep expecting to be discharged but haven't been yet and see, well now get phone calls every 6 months lol.
It's good that they are still keeping you under gastro just very frustrating that they can't get answers for you I hope they find out what's causing your symptoms soon xx
I hope they don’t either, but symptoms have pretty much gone and only got the “normal” ones for me left (bloating, varied stools, uncomfortable joints etc) but not any urgency or bleeding any more. I had an intolerance test done and only showed up a slight issue with egg white, but nutritionist said to also cut out gluten and milk too as they wouldn’t show on a test like that, so maybe lactose Intolerance could be playing a role 😖 I have also seen a chiropractor about joint pain and he thinks there is inflammation throughout joints in my body and he is convinced something isn’t right with my bowels... but scans say different. Goodness only knows now 🤷🏼♀️ I hope that you’re ok and everything gets back to normal for you soon x
Glad your symptoms have subsided. Just thought I'd drop a note on what my consultant is planning in terms of diagnostics in case it might give you and your docs on ideas on where to go next ... I was tested positive for both FIT and Calprotectin (6000!) so have had blood test, sigmoidoscopy, CT (awaiting results) and planning for gastroscopy and colonoscopy which sounds like is what you have already had. He said that if none of these show anything, then next would be pill cam to look at the small bowels so perhaps you can ask for that? I know you can get your own Calprotectin tests online but most won't show a reading beyond there standard range, whatever that is.
Calprotectin of 6000 that's really high 😲 have you heard any more on your results I hope all was ok? Yeah a few people have mentioned the pill cam if the MRI doesn't show anything IL Def ask about that thank you for your reply xx
Hi there, I actually had the gastroscopy and colonoscopy today where they have taken a number of biopsies. Gastro saw antral gastritis but need biopsy results to confirm any form of IBD in the colon. Will decide if pill cam is needed depending on biopsy results and how my symptoms evolve since I have gone gluten and dairy free from an intolerance test I did myself. My CT showed some cysts in the liver which doc wants to do an MRI for as this could be a cause of my frequent bright yellow diarrhea.
Did cutting out gluten, milk etc help your symptoms at all? IV been trying this fodmap diet and nothings changed but I know it can take a while for your body to adjust so im just hoping it's that. I suffer with pain in my wrists and knees but when I was pregnant I had a rare case of osteoporosis in pregnancy and broke my neck of femur and had to have pins and plates in my hip and my femur so IV always put the knee pain down to that and I broke my wrist about a year after my son was born and still they didn't do any further tests and like my knee because of the fracture I also put I down to that. It's awful when you know somethings not right and the appointments take so long to come around by time they are here everything has calmed down ain't it 😔 but I hope they investigate further to find out what is causing all of your symptoms xx
Hi sorry have just seen this. I have definitely seen an improvement with gluten and dairy free. Less frequent and more normal consistency and colour. There is a difference between lactose and milk intolerance and as mine is milk, I have cut out all milk products which is not too hard as I only have a love for cheese and there are vegan cheeses available.
Going gluten and dairy free was only ever going to be a test for me and some say it takes 21 days for remains of milk proteins to exit the body, I thought I’d try it for 3 weeks and see how I go. I saw improvements from after 2 weeks so stuck with it since. It doesnt have to be permanent as you cal slowly reintroduce things afterwards and only eliminate the ones aggrevating your symptoms. I also follow the low FODMAP diet as there must be inflammation inside with that result.
I have found it has helped my joint and muscular pain after changing my diet and lost about 2.5kg in weight which are the added bonus!
Hope you get the fixes soon. Love these forums and sharing of experiences and ideas!
Hi Hannahs0991, I am in similar situation. I have had tummy problems on and off since I was a child too. Very painful cramping but couldn't go to toilet. Frequent multiple mouth ulcers too. Went away until late teens early twenties, then in 2010 after a few months of pain I got admitted to hospital with acute pancreatitis. They never found out why so it was diagnosed as idiopathic. Then in 2016 I developed bad pain again and bleeding, mouth ulcers, very fatigued. GI thought maybe coeliac but blood test was negative. I eventually had a small bowel mri but by then was feeling better and it showed nothing sinister.
Now from April this year I have had diarrhoea and cramping and fatigue again and this time it's steatorrhoea. I have bad hip and back pain too. My GP did calprotectin and elastase. Calprotectin was 587 and elastase 157. GI is treating it as exocrine pancreatic insufficiency but he says he needs to find out why I have it and see if the the high calprotectin is related. I am having pill cam first then colonoscopy and endoscopic ultrasound. It sounds like you should push for pill cam too. It's a non aerosol generating procedure so relatively safe and not as resource intense for the hospital in these pandemic times.
It sounds like you've been having a really rough time I hope your feeling ok now. I also get mouth ulcers alot and when I was pregnant I broke my neck of femur and had to have pins and plates fitted and was told I had a rare case of osteoporosis in pregnancy but since learning about the high calprotectin I pushed drs to do more bloods and this has shown a deficiency in one of the vitamin tests I had but the receptionist said I got to wait for Dr phone me to discuss what one and treatment I'm thinking it's most likely the vitamin D as that would explain why I suffered so bad in pregnancy and I believe that vitamin deficiency can also be linked with Crohn's? I'm sorry but what does steatorrhoea mean? My consultant agreed to send me for the MRI but I still haven't heard anything and it's private healthcare so I'm a bit concerned IV just been forgotten about but once IV had it if I still haven't got any answers IL Def ask for the pill cam. I hope all goes well and you finally get some answers xx
Yeah probably vitamin D. Mine is always low even with supplements. I can get it up a bit with really high dose supplements. Steatorrhea is diarrhoea with fat in it (because it's not being absorbed because I don't make enough of the enzymes that break fat down).
I had my pill camera this week so just (im)patiently waiting on results...
How did your colonoscopy go I'm waiting for my MRI results they were send to my consultant last Wednesday but I've still not heard anything so I'm thinking maybe that means they are clear but I suppose IL just have to wait a bit longer xx
It was clear (they took biopsies anyway and I don't have the results yet but I'm sure they'll be fine) delighted as means I don't have IBD, at least that's one cause of the pancreatic insufficiency ruled out. Only thing left to check is for chronic pancreatitis and waiting on an EUS for that. How are you getting on?
Private scans should be quick normally within a week fron the consuktant ordering it. Maybe ring the consultant’s secretary and follow up. As far as I am aware, the private sector is still operating as normal despite lockdown as some turned into NHS overnight with the first lockdown. Best of luck!
I've had an EUS endoscopic ultrasound after MRCP showed enlarged intra and extra hepatic ducts. There was some inflammation seen. They put it down to my gallbladder being removed in 2015. The test was done in 2018 after having ALT's of over 400 3 years after gallbladder surgery lol
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