Hi, yes I finally got them back!

The biopsy reported Acute Terminal Ilietus.. Not sure what that means but it's either a form of Chron's Disease or something else. I will let you know what they say when I get to an appointment with a specialist.

I hope you are both well?

How are you doing? Xx 

I think that's chrones. Very treatable so I'm told. I think I might be spelling chrones wrong :-). Apparently cutting out alcohol helps, if you drink alcohol that is, and reducing stress.

I'm ok myself, but my calprotectin levels are high again. I've had the gold standard of tests (colonoscopy, gastroscopy,  ct scan, camera endoscopy, blood and stool tests, physical examination) but they can't find any significant problem or reason why my calprotectin levels are so high. So I should be happy, right? But it does make me question if they've missed something......since no one can tell me what's the cause of these false positives.

Simon

I am going through the same! High calprotection! Had colonoscopy, mri, xray, can't find anything! Im having the pill cam soon! Hope to get some answers 

Last year my calprotectin was over 600. I had ct, colonoscopy, gastroscopy, biopsies, and pill cam. This year my calprotectin was 430. I had mri. Every test has shown nothing wrong apart from diverticular. Now diverticular can raise calprotectin, but only when infected, and when they've tested me they didn't find an infection. So I'm left not knowing. But my symptoms (runny stools) have all but disappeared by moving onto a high fibre diet. Calprotectin does take many months to disappear from the system, so I can only think that I had an infection, but it resolved itself by the time they did the tests, and now it's a waiting game for the calprotectin to drop. That's my best guess. What's your story?

Exactly this! my calprotectin was 448! Had loose stools etc! I've had colonoscopy, mri, biopsys and they haven't found anything! Im waiting for a pill cam now! But after a year of bad symptoms! Things are improving slowly! I am just hoping mine was just an  infection too! I have done another calprotectin test and waiting for the results and hoping the number has gone down 

Wow, you're literally the only person who I've come across that's in exactly the same boat as me. Cutting out acidic fruit (e.g. oranges), eating more fibrous fruit (e.g. pears), and taking a daily fibre supplement (psyllium husk) has helped with my symptoms. Literally a 95% improvement. I'm going for another calprotectin test in August, to see if my levels have dropped. Please let me know how you get on with the pill cam.

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 all, 

so sorry that you are all in this limbo stage, it's so stressful when you're not able to find an answer.

I have just been told I have high (not sure the amount) Calprotectin levels and need an urgent referral for further investigation. I've only had about 7 weeks of symptoms but they include loose stool, some blood (not constant) and that's it really. I have a family history of cancer, although none are hereditary, so my anxiety is through the roof! How did you find the testing? I had sedation with dental work and tried to fight the dentist, so not sure how that will work if they try to do anything else!