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Has anyone experienced a false negative with faecal calprotectin?

I am at my wits end at the moment. I had my colon removed due to Crohn’s in 2013 and I have a permanent ileostomy. For three years after I was really well but a couple of years ago I started getting symptoms of a flare up. I have had CTE, MRE, ultra sound. Blood tests are normal and Faecal calprotectin normal. There were a few abnormalities on MRE and Ultra sound i.e gall stones and adhesions but none explain the symptoms I am having. My Crohns was missed for 9 years because all lab results came back as normal but my Gastro consultant is adamant it isn’t active Crohn’s because the FC test is normal. Thing is I dont have a lot of faith in these tests and I know the signs of a flare! My abdomen is so tender and painful and I’ve had to go on liquid only diet and take high levels of pain killers. Also my ankle has swollen up which was always a sign that Crohns was active too! Anyone else had a false negative on calprotectin?
 
I haven’t particularly had a false negative, but I took a very long time to be diagnosed too as my blood results etc are normal and I often feel I’m not taken seriously when I feel things are flaring up because of this.

Keep fighting, I know how frustrating it is but you know when something isn’t right. Can you maybe get a second opinion?
 
Thank you, I have been in this situation before and ended up so ill I had to have my colon removed in emergency surgery. I am going to ask for an endoscopy as that is the only test that shows the ulcers for me.
I do hope you find some relief soon😊
 
Thank you, I have been in this situation before and ended up so ill I had to have my colon removed in emergency surgery. I am going to ask for an endoscopy as that is the only test that shows the ulcers for me.
I do hope you find some relief soon😊
 
Thank you, I have been in this situation before and ended up so ill I had to have my colon removed in emergency surgery. I am going to ask for an endoscopy as that is the only test that shows the ulcers for me.

I do hope you find some relief soon[emoji4]


That sounds like a good idea. I’m sorry they didn’t listen to you the first time around with such drastic results. I feel your pain, only scopes and MRI’s reliably show my inflammation but they aren’t done often because of the cost. To me the hardest part of this illness is feeling like I somehow have to ‘prove’ what I’m saying to be taken seriously when I’ve been struggling for a while and end up feeling completely dejected when I give in and ask for help. Best of luck, let us know how it goes!
 
My dr wants me to do that test and I am hoping being on steroids for 3 months
won’t affect the test.
Although they have been negative before and I still have CD ?

Lauren
 
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