Calprotectin tests- are they reliable?

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Jessa33
Regular Member


Date Joined Aug 2013
Total Posts : 163
   Posted 3/1/2017 3:11 AM (GMT -7)   
Hi everyone, I am really confused because I have been in a flare since last summer and I am on month 4 of budesonide/uceris, now on 3mg a day but not feeling well. I have a mixture of watery diarrhoea and semi-formed stool on 3 BMS a day and around an extra 3 which are skinny but almost formed but all urgent and traces of blood sometimes. I am exhausted and my cortisol level is currently 207 which apparently is normal. At one point they said low cortisol might be causing watery diarrhoea and it does seem odd to have watery diarrhoea and formed stool in the same visit.

I have done a calprotectin test and apparently it has come back normal which I find hard to believe and I am very worried I will be advised to stop uceris and carry on with my maintenance asacol at the usual full dose. I am worried I will relapse even more as I have been worse since stepping down to the 3mg and feel like it is simmering away. It even woke me up in the night at 4am with the need to go to the BM.

Have calprotectin tests been reliable for you? They are quite a new thing in the UK.
Diagnosed ulcerative proctitis in 2008, then left sided colitis 2014 and now subtotal colitis 2015.
Take 6 HD asacol per day plus salofalk suppositories/enemas.
Also take VSL3, fish oil tablets, vitamin D supplements, slippery elm tablets and wheatgrass.

iPoop
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Date Joined Aug 2012
Total Posts : 11047
   Posted 3/1/2017 8:03 AM (GMT -7)   
If you're having 3 bms a day then you likely have a small amount of inflammation. For a small percentage of people, that test is always inaccurate. Did you get a high value before or is this your first time getting that test? You could try a CRP blood test and see if the value is different.
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Jessa33
Regular Member


Date Joined Aug 2013
Total Posts : 163
   Posted 3/1/2017 10:37 AM (GMT -7)   
Thanks iPoop. Its 6 BMs a day but 3 with watery D unfortunately. Yes it was a reading of 600 before Christmas and 600 around August last year too, so I am worried they will start saying I must be better and it is just IBS...
Diagnosed ulcerative proctitis in 2008, then left sided colitis 2014 and now subtotal colitis 2015.
Take 6 HD asacol per day plus salofalk suppositories/enemas.
Also take VSL3, fish oil tablets, vitamin D supplements, slippery elm tablets and wheatgrass.

quincy
Elite Member


Date Joined May 2003
Total Posts : 29860
   Posted 3/1/2017 10:45 AM (GMT -7)   
I've never had one....and the CRP level is certainly not a for sure regarding flaring.

Have you been checked for for any other pathogens?

Has the doc taken a look-see for actual visual proof of inflammation?

Is there a reason why you're not on the Rowasa? And have you stopped the supplements other than the VSL?

Anything new in your diet?
q
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Airomir (asthma);Effexor XR 37.5 (depression)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care+Primadophilus Reuteri capsules @ bedtime)
~Metamucil capsules 7 @ 2x daily with meals; Vitamin D 4500 IU
~URSO 500mg @ 2x daily for Primary Biliary Cholangitis
My doc's logic.. "TREAT (FROM)BOTH ENDS" worth it !!!

Jane974
Regular Member


Date Joined Feb 2017
Total Posts : 251
   Posted 3/1/2017 10:59 AM (GMT -7)   
Jessa33 said...
Thanks iPoop. Its 6 BMs a day but 3 with watery D unfortunately. Yes it was a reading of 600 before Christmas and 600 around August last year too, so I am worried they will start saying I must be better and it is just IBS...


6 BMs per day with some blood is in line with inflammation and not generally mild inflammation (assuming it's not a pathogen and it's UC related).

Calproctein of 600 is elevated. My lab uses greater than 162 as the cutoff. Check what yours uses, but can't imagine it is way off? When I'm in remission my values are 15-16, and the last flare they were over 2000. The numbers are not meaningful, but you are definitely way above the cut off.

I don't buy the whole "IBS" thing in folks with UC. The last time my doc blamed things on IBS, I was starting a flare and missed the early warning signs because she was convinced the urgency and mucous were IBS related!If we have leftover low grade or mild inflammation it can present as "IBS."

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15430
   Posted 3/1/2017 5:17 PM (GMT -7)   
I've had them be reliable most of the time but unreliable once or twice. when I was at my worst, i think i had a score of~1500 - I don't remember the exact #, but it was quite high. i don't think 600 is considered "normal" or even "slightly elevated". i think slight is more like 150 or 200. 600 is high enough to be taken seriously.
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Jessa33
Regular Member


Date Joined Aug 2013
Total Posts : 163
   Posted 3/3/2017 1:36 AM (GMT -7)   
Hi all,

thank you for your replies.

Quincy, I am using suppositories day and night as well as the asacol maximum dose and 3g of uceris. When I have tried enemas I feel in better health the next day as I can tell from BMs that there is inflammation higher up but then the next day, more bleeding with bright red blood. When I just use suppositories I have traces of lighter blood. I feel like I need to use both at the same time to cover as much as possible. If I use an enema, I can only hold half of the bottle as otherwise it feels like I am going to burst somehow and although I can hold it, I cannot sleep because it is so distracting.

On the calprotectin reading, my reading was 600 twice in the first 4 months of this flare but my latest reading from last week is saying it is normal. Thanks for the tip of checking which reading is the cut off point. I completely agree about not accepting it is just IBS. We know when it is UC and yesterday I think I must have had about 10 BMS. I just worry I am going to struggle to convince the hospital to take it seriously after a normal calprotectin reading last week.
Diagnosed ulcerative proctitis in 2008, then left sided colitis 2014 and now subtotal colitis 2015.
Take 6 HD asacol per day plus salofalk suppositories/enemas.
Also take VSL3, fish oil tablets, vitamin D supplements, slippery elm tablets and wheatgrass.
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