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fecal calproctecin cut off value?

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Posted 3/4/2017 5:51 PM (GMT 0)
Hi Everyone,

I re-did my fecal calproctecin since i'm feeling better and looking like I may be in remission. My score on Jan 2st (when flare began) was greater than 2,000. Now it's 68. The cut off my lab uses is 162. The last time I was in remission it was under 15.

When I look online the cut off values for normal are under 50 and 50-150 are considered borderline. Was just wondering if anyone knows what the actual cut off values are for inflammation? Was confused why my lab uses 162 while many sites are saying normal is under 50.
Posted 3/4/2017 10:06 PM (GMT 0)
I read a study that essentially found that high calprotectin values are a very reliable indicator of inflammation, but that low, "normal" values are NOT a reliable indicator of lack of inflammation. So whatever low value you get, it just means you don't necessarily have inflammation. You need a scope to make sure.
Posted 3/5/2017 7:47 PM (GMT 0)
My report sais greater than 6000! Severe bloody stool's at the time. I haven't read anyone with a value higher than that. My gp said they don't pay too much attention to this test but the symptom's of patient. Don't make sense really. I thought it was meant to be quite accurate.
Posted 3/5/2017 7:53 PM (GMT 0)
Wow Jane remission for 12 yrs! I'm also on the scd diet. I do cheat at times as it's not easy. Only been on it for 2 weeks. Made my first scd cake a few days ago. Have you ever cheated or hve u kept to scd for 12 yrs? 12yrs is like being cured! I know its not but that's given me hope. Are you taking medication or doing anything else? Would be great to know
Posted 3/5/2017 7:57 PM (GMT 0)

Hedgehogs6 said...
My report sais greater than 6000! Severe bloody stool's at the time. I haven't read anyone with a value higher than that. My gp said they don't pay too much attention to this test but the symptom's of patient. Don't make sense really. I thought it was meant to be quite accurate.

From what I read, it's about 90-95% accurate. If you are above the cutoff (around 162), then that indicates intestinal inflammation. I don't think the actual numbers matter that much. Mine just said greater than 2,000 during a mild flare but didn't tell me more than that, so it could have been 10,000. In your case it's consistent because you are above the cuttoff and you are having severe flare symptoms. Don't focus on the numbers just track it overtime. Re-test when you are feeling better and see if it's come down.

Mine went from >2000 to 68 once I started feeling better and thought I was in remission. I use it to see if my treatment plan is working because colonoscopies are overkill (and have some risk) and don't want to have one more than every 2 years.
Posted 3/5/2017 8:12 PM (GMT 0)

Hedgehogs6 said...
Wow Jane remission for 12 yrs! I'm also on the scd diet. I do cheat at times as it's not easy. Only been on it for 2 weeks. Made my first scd cake a few days ago. Have you ever cheated or hve u kept to scd for 12 yrs? 12yrs is like being cured! I know its not but that's given me hope. Are you taking medication or doing anything else? Would be great to know

Yes, I've been on SCD for over 12 years (I can't remember the exact number of years anymore). When I'm in a flare or don't feel 100%, I am very strict with it and always go back to intro diet during a flare for the first few days. When I had many years of solid remission, I added rice noodles with no problem and was able to eat all the advanced SCD foods (nuts etc). I never went back to eating regularly because I do find that I have to stick with the diet in order to keep symptoms in check even after many years (grain free seems to be important for me). To maintain remission, I'm generally on SCD diet and SCD 24 hour yogurt for probiotics, and nothing else (aside from a few supplements like fish oil and added VSL 3 about 2 years ago). A few times I added low dose mesalamine when I had some minor symptoms for a few days here and there, so I use mesalamine very intermittently and mostly am not on meds.

I did have a flare recently after 12 years of remission, and only added low dose of balsalasize (I'm on a non-therapeutic dose b/c couldn't tolerate more). It took me 2 months to kick it though (SCD plus low dose mesalamine). You can see what i'm taking on my signature. If I could take the full therapeutic dose, I likely would have kicked the flare faster or maybe SCD kicked it after 2 months on its own and meds did not do anything.

I cook everything for the SCD diet once per week and refrigerate/freeze as needed (takes about 3-4 hours total). I don't cook more than once a week and that has made the diet very easy to follow consistently. If you just cook once/week and have lot's of SCD food available the diet is much easier to follow. You have to see it as a way of life...not a diet.
Posted 3/5/2017 8:13 PM (GMT 0)
Okay so does that mean I have severe colitis? Or do we all get severe flares at some point
Posted 3/5/2017 8:17 PM (GMT 0)
That's amazing you've been in remission so long before having a flare.
Posted 3/5/2017 9:21 PM (GMT 0)

Hedgehogs6 said...
Okay so does that mean I have severe colitis? Or do we all get severe flares at some point

I would base the severity on symptoms (frequency of BMs, blood, whether you are are anemic etc) as well as what your colonoscopy biopsy results were. I don't think I would use the calproctecin numbers to make any call around severity--but it is confirming that you are in a flare and having inflammation. I do track mine to see progress. Last 3: 15 (while in remission for years), greater than 2,000 (at first week of flare), 68 (most recent one after symptoms subsided and thought i was in or closer to remission). I will do a re-test in a few weeks/months to see where it's at again.

Yes--it is nice to have been in remission. Sometimes we are lucky and it's in remission for a long time.

Post Edited (Jane974) : 3/5/2017 2:36:55 PM (GMT-7)

Posted 3/5/2017 9:57 PM (GMT 0)
OK thanks. Yeah I was popping to loo all the time. about 30times but been good for last 3months. Biopsy results didn't confirm anything. Thanks for reply and hoping you stay in remission for another 12 yrs. Definitely given me hope
Posted 3/6/2017 5:03 AM (GMT 0)

Hedgehogs6 said...
OK thanks. Yeah I was popping to loo all the time. about 30times but been good for last 3months. Biopsy results didn't confirm anything. Thanks for reply and hoping you stay in remission for another 12 yrs. Definitely given me hope

Good luck with your health. I'm glad you are feeling better more recently and hope you continue to move in the right direction. It does get easier for many people once you figure out the right treatment and can identify warning signs of a flare.
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