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Crohn's Disease Forum » Support Forum » Undiagnosed Club » Calprotectin Results advice please


08-05-2014, 08:37 AM   #1
MSP
 
Join Date: Aug 2014
Calprotectin Results advice please

Hi, new to the forum and not sure where else to ask this sort of question (found you by googling!).
I went to the doctors as have had stomach problems since i was about 16 (20 years) and its just getting worse. Was told 20 years ago was IBS and since then ive just dealt with it and lived with it.
Got to much a few weeks ago when I was having a severe episode with it and was told was severe IBS but they did a blood test (came back normal) and I have been given Amitriptyline (didnt really do much). I then read about Calprotectin test so I rang and asked for one and took the sample at the end of my episode of symptoms.

I then had to go back as she wanted to see me after two weeks (the calprotectin wasnt back at this stage). I said the episode lasted about a week and a half and was coming out the other side of it but usually does come back. She said to leave it 3 months and see how go taking Amitripyline every day (which I am not keen on doing from reading about it). I asked about colonoscopy/endoscopy and she said not at the moment but lets see in three months.

I rang today and was told Calprotectin was normal, so I asked for the number and was 54. From looking up I can see that is in the borderline range so you should have another one done. They didnt offer this at all.

Should I just leave it as 54 is in the borderline and go back in three months time or ring and ask for another test? Also, assume its best to be tested when having symptoms or not?

I know you dont have magic answers but Im just wondering what you all did/do.

Thank you for reading - I do appreciate it

M
08-05-2014, 08:46 AM   #2
SarahD
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Welcome to the forum MSP. Sorry to hear about your problems.

54 for a Calprotectin result wouldn't cause me to worry at all. I'm not sure how accurate the Calprotectin test is, and am sure there are some cases where it will give false negatives. If I were you I would push for a colonoscopy and endoscopy rather than a repeat Calprotectin test. A visual inspection of the bowel might show what's going on, plus the dr can take biopsies to look for microscopic inflammation.

Sarah
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Symptoms from the age of 12. Mis-diagnosed with UC at the age of 13, and later diagnosed with Crohn's in January 2012 at 24 years old. Disease mainly in terminal ileum.


Current meds:
Azathioprine, Allopurinol, Calcichew D3-Forte, Fortijuice, Alendronic acid, Ranitidine

Previous meds:
Augmentin, Doxycycline, Lansoprazole, Asacol, Pentasa, Prednisolone, Entocort, Cipro, Flagyl, Elemental Extra 028
08-05-2014, 09:14 AM   #3
MSP
 
Join Date: Aug 2014
Thank you. I did say that I would like a colonoscopy as just want it sorted but she wanted to give it a few more months so looks like I will have to leave it and go back again and ask again. Been like is for 20 years, guess Ill have to deal with it for another 3 months more! Joking aside, when I have an episode it's horrendous so want to just sort things.
Thank you.
08-09-2014, 06:08 AM   #4
gotumtum
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Hi MSP

Is it your GP that you are currently seeing? You could ask for a referral to a gastroenterologist, as there are other alternatives to IBS and IBD that the gastro would be more knowledgable about than the GP, and they could organise a scope.
08-13-2014, 08:09 AM   #5
MSP
 
Join Date: Aug 2014
Hi, yes this was via the GP. I did ask about a referral and she said to see how I go for 3months, so looks like I will have to put up for another 3 months then go back and ask again.

Thank you
Michelle
09-10-2014, 07:57 PM   #6
RickUK
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Hi, new to the forum and not sure where else to ask this sort of question (found you by googling!).
I went to the doctors as have had stomach problems since i was about 16 (20 years) and its just getting worse. Was told 20 years ago was IBS and since then ive just dealt with it and lived with it.
Got to much a few weeks ago when I was having a severe episode with it and was told was severe IBS but they did a blood test (came back normal) and I have been given Amitriptyline (didnt really do much). I then read about Calprotectin test so I rang and asked for one and took the sample at the end of my episode of symptoms.

I then had to go back as she wanted to see me after two weeks (the calprotectin wasnt back at this stage). I said the episode lasted about a week and a half and was coming out the other side of it but usually does come back. She said to leave it 3 months and see how go taking Amitripyline every day (which I am not keen on doing from reading about it). I asked about colonoscopy/endoscopy and she said not at the moment but lets see in three months.

I rang today and was told Calprotectin was normal, so I asked for the number and was 54. From looking up I can see that is in the borderline range so you should have another one done. They didnt offer this at all.

Should I just leave it as 54 is in the borderline and go back in three months time or ring and ask for another test? Also, assume its best to be tested when having symptoms or not?

I know you dont have magic answers but Im just wondering what you all did/do.

Thank you for reading - I do appreciate it

M

Hi, in the UK anything under 50 is normal for calprotectin. Between 50 and 120 is borderlien and needs re-testing after 4 weeks, over 120 is abnormal. Mine came back 742 and my gastroenterologist put me straight forward for MRI and colonoscopy. From what my gastroenterologist told me on the phone when he gave me the results its a specialised test to look for specifically inflammation and help avoid giving invasive exams to people who dont require them, he said if it was IBS it'd have come back under 50, or marginally/ever so slightly over, likely IBD you'd be looking into the hundreds, even thousands.

Calprotectin is also done during a flare up to help determine the extent of the inflammation too i think or something along those lines (but it is 100% done during flare ups). So I would absolutely do one during your next flare too!



Good luck!
12-02-2014, 06:30 PM   #7
Apac
 
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Similar story to yours MSP. I've been diagnosed with IBS for 20 years. Guts worsened with non typical IBS symptoms a couple of years back. I had a Calprotectin test with results of just under 300. Had a colonoscopy spring 2013. Scope and biopsy results were clear. Got diagnosed with IBS again. Was prescribed amitryptiline on top of the mebeverine, hyocine and omeprazole and the amitryptiline helped, though I had to have the dosage doubled twice. However in the last few months, bad diarrhea, stomach cramps, bleeding etc returned so next week I have to go see a specialist again. (Typically after waiting months for an appointment whilst flaring, my guts aren't too bad at the moment) I've never had a repeat of the calprotectin test though, not sure why.

I hope they sort out your situation and that you are feeling better.
09-09-2016, 12:33 PM   #8
Elena
 
Join Date: Sep 2016
Hello I know this post is old so not sure if you will see this. But what ever happened to your results ? I have a result of 54 also and I am worried it will turn into something more serious. Many thanks and hope all is well with you.
09-09-2016, 01:09 PM   #9
aypues
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54 is normal. Anything under 162 is normal according to the labs I have gone to for this (2 times). My fecal calprotectin is 800.9! Hoping it goes down soon with my new treatments.
09-09-2016, 01:16 PM   #10
Elena
 
Join Date: Sep 2016
aypues good luck with it all. Not sure why the doctors say over 50 is bad. What did they tell you it was IBD?
09-09-2016, 01:41 PM   #11
ronroush7
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Mine is around 94 and I was told that is fine.
09-09-2016, 02:58 PM   #12
Elena
 
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I took the stool test when my stools weren't in a too bad state. I'm wondering if the result is 54 in remission.
09-09-2016, 03:09 PM   #13
aypues
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I took the stool test when my stools weren't in a too bad state. I'm wondering if the result is 54 in remission.
yes, anything under 162 is a normal reading and would indicate no/minimal active disease/inflammation process.
09-09-2016, 04:16 PM   #14
eleanor_rigby
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It depends what lab is running the tests. Different labs use different markers for what is normal and abnormal. The lab who did my fecal calproctectin used anything below 50 as normal. I have Crohn's in the small bowel and over the past year I have had this test done 3 times and my results were 65, 70, 60. I have been in a bad flare throughout that time and ulcers and inflammation were seen on a colonoscopy - it couldn't even get into the ileum. In my personal experience this test hasn't been all that useful, for others it may be more useful but I think it depends where your disease is active.
09-09-2016, 04:33 PM   #15
aypues
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that's where my disease is too! mostly in the small intestine. it's been a great marker for me. both labs had ranges up to 162.9 as the cutoff for normal. my first test was 806.9 before I did Humira and then after a few months it wasn't doing anything and my score was 800.9. We ended up changing to Remicade and Cellcept, with a short course of Prednisone as my HGB had been declining to 10 and very very low iron and ferritin.
09-09-2016, 05:07 PM   #16
Clash
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In the past Labcorp, who my son used, had a below 50 Normal Reference Range. Quest whom I've used had a below 162.7 Normal Reference range, same units of measurement.

It's really down to what their pool of patients ranged with issues and without as to what established the labs NRR.

The last Labcorp FC my son did the NRR had changed from below 50 to below 150.

I don't have IBD but during a time that I was having some GI issues my Quest lab result was 167. I had both scopes, MRE and a SBFT. The only think found was h pylori which I was treated for. We did a follow up several, we'll more than several, months later and my result was still 157 or something, I was having no GI issues at that time.

So I wouldn't worry too much about 54. If you are still having the GI issues then I'd next push for scopes.

My son's disease was just in his small intestine. He's never reached remission. Before surgery his fc ranged from 300-1700. He was symptomatic at 300 (which also had scope and MRE at that time that showed simmering inflammation at the TI). At 1700, he was asymptomatic.

Afyer surgery his CD became active from anastamosis site to throughout colon and rectum. His last FC was again 300+.
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09-09-2016, 05:22 PM   #17
eleanor_rigby
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I think everyone is different. Just as different people respond differently to medication, they also find different tests useful and not useful. I think the key is if you have continued debilitating GI symptoms the best course of action is a scope or pill cam as this gives the truest picture of what is going on.
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