High Fecal Calprotectin but Nothing from Colonoscopy

[lakesarcool]

Hi Everyone,

I was hoping to seek some advice on where to go next. I have been having a whole slew of symptoms including the following for 4 years with no diagnosis:

Chronic Fatigue
Muscle Weakness and Pain
Irritable Bowel rotating between constipation and diarrhoea
Reoccurring Fissures
Bloating, abdominal discomfort
Brain Fog
Parasthesia in legs
Muscle Stiffness

Two of my direct family members have been diagnosed with Crohn's disease and as many of my symptoms stem from my stomach and seem to line up with an autoimmune condition I always suspected I may have it but I have never had bleeding.

The problem is I have undergone 3 colonoscopies and endoscopies and nothing has ever come up. The only thing seen was a fissure and multiple benign polyps everytime I complete a colonoscopy. I have also undergone an abdominal CT Scan which came back fine.

Where the mystery is with my fecal calprotectin test which came back as a 292.6 on a reference range of less than 50. My CRP and ESR have always been fine after multiple tests.

I was wondering if its still possible due to my elevated fecal calprotectin to have something my doctors may be missing and if there is any other tests I may be able to complete?

Thank you very much for any help you might be able to provide.

 

[Lady Organic]

hi and welcome.
292 is considered low calprotectine even if in the above 5- to 250 ''grey zone''. It wont alert any gastroenterologist especially if colonoscopy and biospsies are clear. it is not significant enough to assess IBD inflammation.
have you ever test for small intestine or stomach?
thats the only thing that comes to mind at the moment...
I have never done capsule endoscopy but maybe that could be a possibility for you to look at the small intestine. and upper endoscopy for stomach.

 

[dchad57]

My fecal calprotectin test was also high, and my Colonoscopy fine. They found active Crohn's in my small intestine after a CT scan with contrast. Have you had a small bowel xray? or EGD ?

 

[mere282]

It was explained to me that it picks up on inflammation in the intestines doesn't always mean IBD

 

[dchad57]

Yes, that is also true.

 

[lakesarcool]

Thank you everyone for helping me with this,

I have had a few endoscopies done and an Abdominal CT Scan without contrast. I'll ask my doctor about a capsule endoscopy as it seems like it may be the only thing left to try. Either that or another CT Scan but with contrast.

 

[Dmarks70]

hi and welcome.
292 is considered low calprotectine even if in the above 5- to 250 ''grey zone''. It wont alert any gastroenterologist especially if colonoscopy and biospsies are clear. it is not significant enough to assess IBD inflammation.
have you ever test for small intestine or stomach?
thats the only thing that comes to mind at the moment...
I have never done capsule endoscopy but maybe that could be a possibility for you to look at the small intestine. and upper endoscopy for stomach.

In the UK my docs say that anything over 50 is 'abnormal' in the calprotectin test. I've ranged from 79 to 300 and although not particularly high was enough for my GI to get me to have the pill cam which found ulcers. From this she diagnosed me! Maybe the ranges are different in different places.

 

[eleanor_rigby]

My fecal calproctectin tends to hang around the 60 - 70 zone with >50 being abnormal. Ulcers were found at my terminal ileum during a colonoscopy when my fecal calproctectin was 65 and my CT scan with contrast was completely normal. I am wondering if you could have ulcers higher up than the colonoscopy can reach. Colonoscopies only go so far as the terminal ileum, and endoscopies only go down as far as the duodenum. Therefore you have literally metres of small bowel that has not been examined. I had an MRE with contrast as well that was normal but I was lucky that my ulcers were were my small bowel meets my large bowel so a colonoscopy was able to pick it up. If it wasn't for that I would not have been considered to have IBD most likely as literally everything else was normal for me, or there abouts. I would also suggest a pill cam.

 

[Lady Organic]

In the UK my docs say that anything over 50 is 'abnormal' in the calprotectin test. I've ranged from 79 to 300 and although not particularly high was enough for my GI to get me to have the pill cam which found ulcers. From this she diagnosed me! Maybe the ranges are different in different places.

Im glad you found a proactive doctor or maybe you went directly to pill cam without colonoscopy?. Where were your ulcers located? Other situations can lead to abnormal not so elevated FC numbers, such as irritable bowel syndrome, use of anti-inflammatory drugs if I am correct. So I can easily imagine that some doctors wont insist and pursue further investigation after clear colonoscopies and biopsies.

 

[Dmarks70]

Im glad you found a proactive doctor or maybe you went directly to pill cam without colonoscopy?. Where were your ulcers located? Other situations can lead to abnormal not so elevated FC numbers, such as irritable bowel syndrome, use of anti-inflammatory drugs if I am correct. So I can easily imagine that some doctors wont insist and pursue further investigation after clear colonoscopies and biopsies.

The ulcers were found in my small bowel. I did have a colonoscopy but this was clear although it did put me in hospital for a week with bleeding. From all the reading I have done people with IBS will not have raised FC but you are right about anti-inflammatories. It's all so confusing!

 

[Hollaka79]

Following this thread... just been discharged from hospital for the second time in a month. Normal colonoscopy (apparently they saw one ulcer), normal MRI, slight swelling on CT & x Ray and a FC of 600! Drs put me on steroids initially which helped then this time they said I was constipated (even though I have D most days going 10-15 times a day) and gave me movicol then made me do a moviprep yesterday. Still got tummy ache, severe fatigue/exhaustion, sweats & just generally feel unwell. I've had crohns 30 years & been in remission 20 years & this is the first time I've kicked up a fuss with my Drs in that 20 years. But cos most my labs are ok I feel like they think I'm going mad?! I'm doing as they say with the moviprep etc (which makes me feel worse) but I'm having to taper off steroids now (currently on 30mg) and am worried it's gonna flare again badly & they'll blame it on constipation or something equally ridiculous! They have arranged for me to have a pill cam as my CD has always been in my small bowel so I'm really hoping that confirms it again & im not going mad (which like I said they start to make me feel like I am). I'm so fed up with it all, I have two children & im stuck in my bed missing precious time with them all because I'm not the stereotypical crohnie

 

[Sucane1]

I just checked my results from when I was diagnosed with crohns this past January. Prior to my colonoscopy in January my calprotectin was a 336. It says on my results in the notes that the standard range is less than or equal to 162.9. Inrealize this doesn't solve your problem, but maybe that's why they aren't concerned about this result in your case.

My dad has bad IBS. Is it possible that's what you have? Basically anything with spice or pepper will set off his IBS and he'll have horrible cramps and stomachs issues for days and sometimes weeks. He too gets colonoscopies every so often but he does not have crohns. The doctor who's treating me is also treating him for his IBS. He asked her about if he had crohns and she confirmed no. He just has a super sensitive stomache.

 

[eleanor_rigby]

I just checked my results from when I was diagnosed with crohns this past January. Prior to my colonoscopy in January my calprotectin was a 336. It says on my results in the notes that the standard range is less than or equal to 162.9. Inrealize this doesn't solve your problem, but maybe that's why they aren't concerned about this result in your case.

My dad has bad IBS. Is it possible that's what you have? Basically anything with spice or pepper will set off his IBS and he'll have horrible cramps and stomachs issues for days and sometimes weeks. He too gets colonoscopies every so often but he does not have crohns. The doctor who's treating me is also treating him for his IBS. He asked her about if he had crohns and she confirmed no. He just has a super sensitive stomache.

For the lady posting on this thread her reference range was that anything above 50 was abnormal. Her result was near 300. Therefore it is unlikely to be IBS as IBS does not raise a calproctectin result.

 

[Maya142]

It actually depends - in the US, some labs list anything under 169 is normal. At LabCorp, under 50 is normal, 50-120 is borderline and above 120 is high.

Close to 300 would be considered abnormal though. In IBD patients, FC can go into the 1000s, so it's not extremely high, but it is considered high.

 

[eleanor_rigby]

It actually depends - in the US, some labs list anything under 169 is normal. At LabCorp, under 50 is normal, 50-120 is borderline and above 120 is high.

Close to 300 would be considered abnormal though. In IBD patients, FC can go into the 1000s, so it's not extremely high, but it is considered high.

Yep - I think just in the first post the OP said:

Where the mystery is with my fecal calprotectin test which came back as a 292.6 on a reference range of less than 50.

 

[Sucane1]

Following this thread... just been discharged from hospital for the second time in a month. Normal colonoscopy (apparently they saw one ulcer), normal MRI, slight swelling on CT & x Ray and a FC of 600! Drs put me on steroids initially which helped then this time they said I was constipated (even though I have D most days going 10-15 times a day) and gave me movicol then made me do a moviprep yesterday. Still got tummy ache, severe fatigue/exhaustion, sweats & just generally feel unwell. I've had crohns 30 years & been in remission 20 years & this is the first time I've kicked up a fuss with my Drs in that 20 years. But cos most my labs are ok I feel like they think I'm going mad?! I'm doing as they say with the moviprep etc (which makes me feel worse) but I'm having to taper off steroids now (currently on 30mg) and am worried it's gonna flare again badly & they'll blame it on constipation or something equally ridiculous! They have arranged for me to have a pill cam as my CD has always been in my small bowel so I'm really hoping that confirms it again & im not going mad (which like I said they start to make me feel like I am). I'm so fed up with it all, I have two children & im stuck in my bed missing precious time with them all because I'm not the stereotypical crohnie

I hope you are finally starting to feel better. I'm new to the crohns world. Apparently I've had symptoms for it for 20+ years but every doctor wrote it off as something else and this past December was my first really bad flare up. I was diagnosed with crohns after my colonoscopy in January. I was told to please not google anything and to join a support group instead. Well there weren't any local chapters, so I found this website. So forgive me if this question sounds ridiculous, but what is a stereotypical crohns patient? I don't even know what the fecall calprotectin result means. And why one earth would above 50 be abnormal in one country and above 169 in another, that seems like quite a huge variance.

 

[eleanor_rigby]

I hope you are finally starting to feel better. I'm new to the crohns world. Apparently I've had symptoms for it for 20+ years but every doctor wrote it off as something else and this past December was my first really bad flare up. I was diagnosed with crohns after my colonoscopy in January. I was told to please not google anything and to join a support group instead. Well there weren't any local chapters, so I found this website. So forgive me if this question sounds ridiculous, but what is a stereotypical crohns patient? I don't even know what the fecall calprotectin result means. And why one earth would above 50 be abnormal in one country and above 169 in another, that seems like quite a huge variance.

Hello. There is no typical Crohn's patient. Sometimes I read people's stories on here and I cannot relate to them whatsoever. It is like they are talking about a completely different disease. Some patients have to always know where the nearest toilet is, and plan trips around toilets etc. Whereas I never think about the toilet whatsoever as I have always had normal bowel movements. My boyfriend has more weird bowel movements than me. Everyone really varies. You can have lots of symptoms, a few symptoms or even no symptoms.

Fecal calproctectin is a sensitive stool test, which looks at how much blood/inflammation is in your bowel. Crohn's causes bowel inflammation/ulcers so a high result would mean a Crohn's patient might be having a particularly active flare.
There are different laboratories with different testing systems. So my result might be sent to one lab, which uses the reference range of 50 for what is normal. My result might come up as say 70, which is abnormal. In the other lab, which uses the normal reference range of 169, my same sample might come up as like 190 or something there. It wouldn't come up as 70 there. While it is the same test looking at the same thing, the lab systems differ. It's best not to get too bogged down with it. All you need to know is what your result is, and whether the lab that tested it would consider that abnormal.

 

[Hollaka79]

I'm in the UK & below 50 is deemed "normal" here. However my Dr says a crohns patient in the 100's is not so bad. Mine went over 600 on admission & has now dropped to 420 whilst on steroids. I'm having the capsule done next week as they still can't determine where the inflammation is. I'm worried it'll show ok now I'm on steroids & I'll be back to square one..

As for typical crohnie, there really isn't such a thing, I meant by fact that "typical" showed up on colonoscopies, bloods etc easily whereas mine never has, always had to undergo multiple tests to confirm the crohns...

 

[highlandsrock]

Haven't logged on for a while so only just found this thread.

I'm in similar position with increasing calpro (851! when last tested) and two completely clear colonoscopies (Rutgeerts i0). I feel fine and haven't been on any Crohn's medication for 6 years (post ileostomy reversal).

Are there any drugs or other conditions that can cause the calpro to be high? I do take Omeprazole (following burst esophageal varices) and I have severe Bile Acid Malabsorption due to losing my terminal ileum for which I take a couple of loperamide a day.

 

[Guerrero]

You could have active disease in the small bowel, so colonscopies are negative but fc positive.

To be sure i'd suggest an MRI or other endoscopy of small bowel

 

[Hollaka79]

Second that. My colonoscopy was normal but fc was 600+ did a capsule test & showed ulcers throughout the small bowel. Start Humira next week...

 

[highlandsrock]

Could I have inflammation in my small bowel and be completely unaware of it? No pain at all but I have lost a bit of weight

 

[Guerrero]

Could I have inflammation in my small bowel and be completely unaware of it? No pain at all but I have lost a bit of weight

yes in my case inflammation in my small bowel have always been very silent like no pain, only some discomfort but nothing too bad :S ... then one day suddenly i had bleeding and I fainted

 

[highlandsrock]

yes in my case inflammation in my small bowel have always been very silent like no pain, only some discomfort but nothing too bad :S ... then one day suddenly i had bleeding and I fainted

Interesting. I had an MRI scan last December followed quickly by my annual upper GI endoscopy and neither showed any active disease in the small bowel. The calpro test was about one month later. This has really got me stumped.

 

[Guerrero]

Interesting. I had an MRI scan last December followed quickly by my annual upper GI endoscopy and neither showed any active disease in the small bowel. The calpro test was about one month later. This has really got me stumped.

Don't worry too much for one single calprotectin test by the way, it usually doesnt lead to any change in therapeutic strategy for what i heard from my GE. This disease can be a bit strange and also the results of this test may be quite volatile. You should try to repeat it in one month and see how's the trend.

The fact that your MRI and endoscopy were negative is much more important than this last FC test I think.