Fecal Calprotection

[Shanen]

Curiosity question...I had my Calprotectin levels checked again recently...how accurate are these levels? Or do they vary by individuals as all Crohn's related items seem to?


Standard range is < OR = 162.9 mcg/g

Past results:
2/18/15 210.6
11/23/15 435.5

I'm trying to determine if this is something I need to investigate further or take a wait and see approach.

 

[ronroush7]

How are your symptoms? Are they consistent with the fc levels.

 

[Shanen]

Aza & Remicade have helped symptoms stabilize. Appetite is decreased and I feel "full" regardless of the amount of food I eat. Sometimes it can feel as if I swallowed food whole?? It's all stricture related but how do you know when to worry and when to just deal with it?

 

[Clash]

Fc has in the past been a good tool for my son as he has been asymptomatic for awhile now.

It's generally best to get a comparable baseline established. My son's first fc came back 1700 we had no idea because he didn't seem to be exhibiting symptoms. 3 months later we pulled an FC, colonoscopy and MRE. The FC result was 300 and the GI felt that number was in line with the bit of simmering inflammation he saw with scope and that the MRE showed as present.

At 400, I would think further testing is warranted to assess level of inflammation which can in turn help to determine if med adjustment or new med is needed.

Most severe flares will get into the thousands but simmering inflammation can cause damage too.

If you've recently started a new med or adjusted dosages on current med then the approach could be to pull another FC in a few months after giving med changes time to reach efficacious levels.

 

[ronroush7]

Aza & Remicade have helped symptoms stabilize. Appetite is decreased and I feel "full" regardless of the amount of food I eat. Sometimes it can feel as if I swallowed food whole?? It's all stricture related but how do you know when to worry and when to just deal with it?

Usu

 

[ronroush7]

Aza & Remicade have helped symptoms stabilize. Appetite is decreased and I feel "full" regardless of the amount of food I eat. Sometimes it can feel as if I swallowed food whole?? It's all stricture related but how do you know when to worry and when to just deal with it?

Usu

 

[ronroush7]

Usu

What I was trying to say was that a lot of times my doctor will ask about my appetite so I wonder when you talk like you don't have much of an appetite.

 

[buttER]

I think the results can vary from person to person. My calprotectin was always normal, even when I had ulcers through half of my large colon. So I am very careful if someone wants to use calprotectin as a marker for me. I am not the only one with this problem, although I am sure it is a good marker for the majority of patients, otherwise it would not be used.

 

[Shanen]

What I was trying to say was that a lot of times my doctor will ask about my appetite so I wonder when you talk like you don't have much of an appetite.

Most of the time I could care less about eating. When I do get hungry I fill up quickly.

Typically symptoms are few until things go bad and then it gets really bad very quickly. (abscess, pneumonia etc) No med changes lately. Not thrilled about another MRE but I'm guessing it'll be ordered in the near future. Before year end if i have to.

 

[ronroush7]

Wishing you the best.

 

[Optimistic]

I'm a little confused about FCP. It wasn't a good marker last year for my son. His was 250 when he was in hospital, down 20 pounds in a few weeks, and scopes showed he was a wreck. Odd.

We are going to test again soon.

 

[Lady Organic]

I think the results can vary from person to person. My calprotectin was always normal, even when I had ulcers through half of my large colon. So I am very careful if someone wants to use calprotectin as a marker for me. I am not the only one with this problem, although I am sure it is a good marker for the majority of patients, otherwise it would not be used.

Thanks for sharing. This is disappointing to know FC is not as reliable as i thought it could be.

 

[Ihurt]

I had my FC test done and it was elevated ( normal under 162 and I was at 384). I have not even been diagnosed with Crohns, my GI doc keep saying probably IBS!! I also have elevated C-reactive protein level as well. GI doc did not seem excited at all. He said he was not concerned with the levels. He said many things can raise them. I have no idea what to think. It can be frustrating

 

[ronroush7]

It can be upsetting. He said probably IBS. I am no expert but has he run other tests.

 

[crohnsinct]

FC is generally a more reliable marker than CRP but as others have mentioned I think it is individual. I don't think the exact number is as important as the trend. For example as Optimistic pointed out at 200 people can be a wreck where as my daughters are both at 500 and doing rather o.k.. At that level and given your symptoms, our doc would probably wait and see and retest in 8weeks but with one of my daughters we have an FCP history and it is really more like 600-700 where things go off the rails.

Ihurt - It is true other things can lead to increased FCP...NSAID use, recent infection milk protein allergy etc but given a raised CRP AND an increased FCP I would think the GI would investigate further. t the very least I would be asking for a second FCP in 8 weeks time to see which way it was trending. If up then I would think further testing is warranted. True your level isn't sky high but it is about twice the normal range and I wouldn't appreciate a doc disregarding it.

 

[Ihurt]

Crohnsinct: I agree with you. My GI doc was not even the one who ordered the first Calprotectin test, I asked my Primary care doctor to do it. I just brought him the results. He was not concerned. His answer to me was that we just did a colonoscopy 2 years ago that was completely normal so he is not concerned about it being IBD. I am going to ask my primary care doctor to retest my Calprotectin level when I see her in a couple weeks just to see where I am at as well as my CRP levels. I think what makes it worse is that I have other chronic health issues ( Interstitial Cystitis, Fibro, possible Lyme) that my GI just kind of lumps all my issues together and does not take my symptoms seriously as he should. I started having intestinal pain( severe) back in 2012. I had lots of tests ( MRE small bowel, CT scan, blood work, then colonoscopy 2 years ago) which were all normal. The only different thing is that this time my Calprotectin was elevated as well as my CRP. You would think he would be concerned about that. I think he is just basing everything off of the fact that my tests I had done in the last 3 years were normal so I cannot have IBD! He should be looking at the fact that my Calprotectin level was elevated and the CRP which is different from before. SO frustrating.

 

[Shanen]

:rof: Laughing at myself as I just realized my spelling mistake in the title of my thread.

It's all frustrating trying to figure out Crohn's. Ironically they wanted to do surgery last year but I was too unhealthy. Off Prednisone now and doing better most of the summer but starting to feel crappy (pun intended) and now surgery is not being considered. Not that I'm volunteering for it but if it makes me feel better in the end and avoids an emergency situation...

 

[crohnsinct]

Ihurt: well if it makes you feel better my two diagnosed kids both have FC values of about 500 and doc has us waiting and see'ing so you are in good company!

...and another thing...your doc said FCP could be raised for a few reason. O.K. so how about we try to figure out the reason? I am down with not blaming IBD off the bat but something is up so get on it!

Sorry, I know this isn't helping...well maybe it is because now you know you aren't crazy.

 

[Ihurt]

Thanks for the reply. Yes, I agree 100% with you. Sadly it seems like doctors are very limited these days when it comes to chronic illnesses. I am no stranger to chronic illnesses as I have other chronic health issues and sadly I have seen some of the top specialists and they were very limited in what they could come up with or offer.

I am seeing a functional practitioner right now who is trying to help me put the pieces together. I am keeping my fingers crossed. She is looking at my health issues as a whole body issue, not just one organ. She said whenever there is chronic inflammation, 9 times out of 10 it is more of a systemic thing versus just one single organ. I have to agree with that. The body is just so complex, it is frustrating.

Ihurt: well if it makes you feel better my two diagnosed kids both have FC values of about 500 and doc has us waiting and see'ing so you are in good company!

...and another thing...your doc said FCP could be raised for a few reason. O.K. so how about we try to figure out the reason? I am down with not blaming IBD off the bat but something is up so get on it!

Sorry, I know this isn't helping...well maybe it is because now you know you aren't crazy.

 

[esther_m]

Ihurt, my friend has had fibromyalgia for about 8 years. Its so frustrating doing the rounds of doctors who can't help but want to make you try the same things over and over ... fortunately for you, they believe in Lyme disease in the US. In Australia it's huge taboo and my friend was only diagnosed with it this year, by sending samples to the US for testing. After eight. years. misdiagnosed. fibro. >.<

I can understand why the doctor would just dismiss your recent problems as not IBD, because fibro etc. are so random in the way they manifest. But I really hope you can get some answers, because you know your body better than your doctor, and new symptoms are new symptoms.

Peace~