Calprotectin lvl 1000? :(

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rollinstone

rollinstone

Joined
Dec 14, 2012
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Hi guys,

So just got back from the docs, she said my cal protectin from a few weeks back was 1000 :( she said she that's really high, im a little worried, Im on pred now but still got stomach pains, (they hurt when I think about it). I just wanna know if anyone else has had lvls that high? Last year when I was at my worse (I felt a lot worse than this) I think it peaked at like 500 maybe a bit more...
 
What about your blood work, do you have anemia, how's your CRP, ESR?

Sometimes I have a lot of inflammation as indicated by tests by feel OK, other times I have less inflammation but feel worst.

What I realised is that when I am on prednisone, it gives constipations and reduce pain, when I still have a lot of inflammation as evidenced by tests, masking symptoms.
 
I have had exceptionally high calprotectin levels too. The test just measures inflammation in the body and doesn't necessarily mean its your IBD. I think these along with blood tests are helpful measures but definitely aren't always accurate.
 
"For patients that are already diagnosed with IBD, monitoring of calprotectin levels can help determine treatment efficacy and whether there has been a relapse or flare. It must be noted that elevated fecal calprotectin levels are associated with other diseases such as cancer, bacterial infection, and NSAID induced mucosal lesions, so it is not used to diagnose IBD alone.[4]"
http://www.crohnsforum.com/wiki/Fecal-Calprotectin

Generally when we have IBD we assume that's the reason and it most likely is but we need to ensure nothing else might be causing it.
 
Joshua's

Fal calprotectin is measure inflammation in the bowel. Sarah's highest reading is 620.

Where is your Crohn's located? I believe the reading are normal lower with small bowel disease.
 
my disease is limited to the colon, small intestine appeared "pristine", im definitely flaring coz been hurting fairly bad, but even when I was real bad last year (more blood, runnin to loo heaps etc) I don't think it was more than 700, im a little worried, im on 30mg pred now, the doc reckons I shoulda stayed higher for a bit, but the GI said 50-30, 20, ahh man I don't want this thing to get outa control. so over this lame disease
 
My son's highest was 586 and he had no symptoms other than it was difficult for him to gain weight. His old GI never did them so I don't know what his level would have been when he was at his sickest.

I can only tell you that it went from 586 to 47 in 6 months and we didn't change anything. I don't know if it was a virus that made it high, something he ate, or he just needed more time to heal but it got back to normal. Out GI tested him every three months and as long as it was headed in the right direction he was okay with waiting and seeing.

So hopefully whatever is causing your level to be high at the moment it doesn't necessarily mean things will get out of control. Just make sure not to take any NSAID's like advil for pain. That will send your fecal cal number up quickly.

(((Hugs))))
 
thanks for that, its weird, I had some paracetamol the other day because I had an insane headache, apparently that shouldn't affect me whatsoever but I could swear it did...
 
My son's highest was 1700(lab work at that time was normal)
After tweaking his remi schedule, upping his dose and adding MTX
his level starting coming down; we tested every three months.
Next one it was 300, last one was 48

His inflammation is located in the TI of the small bowel at his IC valve.
His symptoms weren't at their worst when he had the 1700 level.
I think part of that is because at his worst he also had anemia and it exacerbated his symptoms, the fatigue was horrible.

FC test is a test of inflammation in the GI tract not the body. NGNG is right in that it doesn't have to be IBD it is measuring but those other causes would be causes occurring in the GI tract not the body as a whole. For instance the inflammation from cancer would be bowel cancer. But since you have CD then it is a safe bet it is measuring active CD inflammation.

I'm not sure if one dose of paracetamol would cause a high level on the FC test. The NSAID use it speaks of in the above link would have to be persistent use that caused ulcers and inflammation I think.

I do hope you find something to give you some relief soon.
 
I have regular calprotectin tests and fortunately they're always in the normal range. However about 6 months ago one came back with a result of 1682! My consultant asked for the test to be repeated and they did a double test - ie sent samples to two different labs. I'm pleased to say that both then came back in the normal range.

So, whilst calprotectin is the best of tests for Crohns, you can get false results. I would ask for the test to be repeated and take it from there.
 
Mine was 1788 before diagnosis - haven't had it done since, but it was the main factor behind doctors realising that my symptoms were probably something more serious than IBS.
 
I was also given the diagnosis of IBS vetgirl until i did a stool sample and faecal calprotectin came back 742. My consultant started leaning towards IBD then, awaiting colonoscopy and stomach MRI now (within 6weeks)
 
I have a question. My son's Calprotectin came back 172 and the nurse told me they don't like seeing it over 162. I think that's what she said? Anyway my son's blood labs all came back normal and we even did a blood test to see where his Crohn's markers were. The test came back inconclusive with Crohn's. His MRE came back clear, but the doctor still wants a Colonoscopy done. We recently switched doctors because we weren't happy with the other one we had. My son never has flares, never fells he can't anything because it hurts or upsets his tummy. The last time he had anything that resembled a flare was almost 2 years ago when he and I got the flue. That was only about 3months after his diagnoses. Before any of this what kicked everything off was when he got a Parasite ( Giardia ). In the beginning we thought he had a stomach bug he couldn't kick. So when we went to the doctor they gave him the medicine to fix it. But after he finely started to feel like he could eat again and be a kid again he started having the same symptoms but not really we then needed more help as into why. That's when he was diagnosed with Crohn's. My only question is when they did the Colonoscopy did they mistake the damage from the Giardia as cause to be Crohn's.

Maybe that's why this doctor wants a Colonoscopy with such a low Calprotectin lab. I understand it's over what they want to see on the Calpertectin levels.

I just don't know! Any input would help at this point.
 
Smile Please said:
I have a question. My son's Calprotectin came back 172 and the nurse told me they don't like seeing it over 162. I think that's what she said? Anyway my son's blood labs all came back normal and we even did a blood test to see where his Crohn's markers were. The test came back inconclusive with Crohn's. His MRE came back clear, but the doctor still wants a Colonoscopy done. We recently switched doctors because we weren't happy with the other one we had. My son never has flares, never fells he can't anything because it hurts or upsets his tummy. The last time he had anything that resembled a flare was almost 2 years ago when he and I got the flue. That was only about 3months after his diagnoses. Before any of this what kicked everything off was when he got a Parasite ( Giardia ). In the beginning we thought he had a stomach bug he couldn't kick. So when we went to the doctor they gave him the medicine to fix it. But after he finely started to feel like he could eat again and be a kid again he started having the same symptoms but not really we then needed more help as into why. That's when he was diagnosed with Crohn's. My only question is when they did the Colonoscopy did they mistake the damage from the Giardia as cause to be Crohn's.

Maybe that's why this doctor wants a Colonoscopy with such a low Calprotectin lab. I understand it's over what they want to see on the Calpertectin levels.

I just don't know! Any input would help at this point.
Click to expand...

I was told recently that even normal bloods do not rule out IBD. Especially if you have normal bloods but abdnormal calprotectin. I can go week and weeks with no symptoms then have a flare-up, maybe due to something i ate. But my calprotectin came back at 742. But anything over 120, I believe warrants a colonoscopy so i can understand why they're doing another, or want to. In regards to mis-diagnosing I wouldn't know tbh. Fingers crossed for you, sorry I couldn't help :(
 
Smile Please said:
I have a question. My son's Calprotectin came back 172 and the nurse told me they don't like seeing it over 162. I think that's what she said? Anyway my son's blood labs all came back normal and we even did a blood test to see where his Crohn's markers were. The test came back inconclusive with Crohn's. His MRE came back clear, but the doctor still wants a Colonoscopy done. We recently switched doctors because we weren't happy with the other one we had. My son never has flares, never fells he can't anything because it hurts or upsets his tummy. The last time he had anything that resembled a flare was almost 2 years ago when he and I got the flue. That was only about 3months after his diagnoses. Before any of this what kicked everything off was when he got a Parasite ( Giardia ). In the beginning we thought he had a stomach bug he couldn't kick. So when we went to the doctor they gave him the medicine to fix it. But after he finely started to feel like he could eat again and be a kid again he started having the same symptoms but not really we then needed more help as into why. That's when he was diagnosed with Crohn's. My only question is when they did the Colonoscopy did they mistake the damage from the Giardia as cause to be Crohn's.

Maybe that's why this doctor wants a Colonoscopy with such a low Calprotectin lab. I understand it's over what they want to see on the Calpertectin levels.

I just don't know! Any input would help at this point.
Click to expand...




I am not sure how old your son is, but until about age 9 or 10, the upper limit of normal for FC is about 160. It drops quickly during adolescence and young adulthood to about 50. 172 is not normal. If your son is under 10 is not horrible, but I would not call it normal, and yes, should be investigated.

Any infectious colitis, including Giardia can cause increased FC. However, if he was treated appropriately 3 months ago, that should be resolved by now. It may be prudent to do stool studies for ova/parasites, WBC's, routine culture and C. diff ( IBDers are at risk for spontaneous C diff infections.) In fact, before diagnosing any actual "flare" stool cultures should always be performed to rule out infection (last thing you want to do if give prednisone to someone with acute C diff.) And, as stated before many acute GI infections can increase FC.

Other blood work and imaging are helpful, but not fullproof. Assuming stool cultures are negative, a scope and biopsy are needed. The old saying in medicine is "tissue is the issue."

M.D.
 
M.D. said:
I am not sure how old your son is, but until about age 9 or 10, the upper limit of normal for FC is about 160. It drops quickly during adolescence and young adulthood to about 50. 172 is not normal. If your son is under 10 is not horrible, but I would not call it normal, and yes, should be investigated.

Any infectious colitis, including Giardia can cause increased FC. However, if he was treated appropriately 3 months ago, that should be resolved by now. It may be prudent to do stool studies for ova/parasites, WBC's, routine culture and C. diff ( IBDers are at risk for spontaneous C diff infections.) In fact, before diagnosing any actual "flare" stool cultures should always be performed to rule out infection (last thing you want to do if give prednisone to someone with acute C diff.) And, as stated before many acute GI infections can increase FC.

Other blood work and imaging are helpful, but not fullproof. Assuming stool cultures are negative, a scope and biopsy are needed. The old saying in medicine is "tissue is the issue."

M.D.
Click to expand...
When my son was almost 10 (2012) back before he was diagnosed with Crohn's. He had the Giardia, then took medicine to kill it, then was tested free of it. Then he had a month where he didn't eat dairy and such so his gut could repair it's self. But soon after he started feeling better and recovering from his Giardia. But then he started having the same type of problems kind of but not really. He had a feeling of bloating and feeling full quickly. He always thought if he could burp and pass gas he could eat more. Never helped..... He did have cramping and would go a few days without throwing up all the while losing weight. The family doctor at the time would say oh he'll work through it. I then took him to her every few weeks to gage his weight with her being happy he gained a 1/4 a pound in several weeks. At that time she introduced us to Probiotics (never knew they were around). He took two Probiotic gummies everyday and still takes one a day with one or two Danimals smoothies each day. The probiotic seemed to help a little. I mean he wasn't throwing up quite as often. But then the doctor also suggested him taking Gasex since he said he felt like he had more room to eat after he would burp and let out gas. This went on for one maybe two months. The gasex didn't help! At the time I think the doctor wouldn't refer him to a GI because we didn't have health insurance. My husband was working a seasonal job without benefits. I finally had to get insurance for my son through the state. The only reason why I did that was because the family doctor we had at the time had another doctor at her practice who told me if it's something big ( like Crohn's ) then being insured at the time of diagnosis would be helpful.

After he was referred to the GI they did blood work and prescribed him Prilosec and sent us home, that was on a Thursday. By Friday afternoon they called and told us he needed a Colonoscopy first thing Monday. Weird thing after the Colonoscopy he felt great. Well for a few days. then a when they finally called with the results they prescribed him Prednisone. He never needed the Prilosec.

About the Calprotectin level.......................the same week he had the labs done he had an upper respiratory going on. Couldn't that effect the Calprotectin level? Don't IBS patients have slightly higher Calprotectin levels?

I don't know? Now that I've written yah all a book................

Thanks for the help!
 
IBS can indeed be associated with very mild often microscopic levels of inflammation and therefore some borderline high FC's. However, it really should never be more than this, and should be self limited. Vomiting and inability to eat is not c/w IBS.

People often feel better after colonoscopies. For one, imagine a damaged highway with normal level of traffic all of a sudden free of traffic, nothing irritating the pot holes etc.. Also, depending on what is used for sedation can cause slowing and relaxation of the gut. All of this is temporary though.

Giardiasis, though certainly can cause significant illness, once properly treated should not cause chronic inflammation of the gut. Gut infections certainly can be a trigger point for IBD. In fact it is quite common.

Best wishes,

M.D.
 
M.D. said:
IBS can indeed be associated with very mild often microscopic levels of inflammation and therefore some borderline high FC's. However, it really should never be more than this, and should be self limited. Vomiting and inability to eat is not c/w IBS.

People often feel better after colonoscopies. For one, imagine a damaged highway with normal level of traffic all of a sudden free of traffic, nothing irritating the pot holes etc.. Also, depending on what is used for sedation can cause slowing and relaxation of the gut. All of this is temporary though.

Giardiasis, though certainly can cause significant illness, once properly treated should not cause chronic inflammation of the gut. Gut infections certainly can be a trigger point for IBD. In fact it is quite common.

Best wishes,

M.D.
Click to expand...

Giardia triggered the underlined Crohn's ........................I was told that might be a possibility.

I hope you understand he's fine now. Hasn't had anything resembling a flare since Jan. of 2013 and that's when he and I got the flu. his stools look normal and he eats like a horse.

Do you know what scares me about a Colonoscopy................Joan Rivers.

........................my son asking if he'll wakeup.................wanting an answer, but not the one they gave me.................the never ending health issues...........not being able to fix it.
 
Smile Please- I did not want invasive tests for my son. I'm a parent who never pushed screening blood work and I declined dental x-rays before age 6. I don't like a lot of interventions. My son had mild symptoms when his colonoscopy showed a lot of inflammation in many areas. He is on Remicade to treat that. Now I encourage people to get the tests done if any question. If I had declined that scope, I suspect my son would have been diagnosed after developing a fistula or obstrucion. I hope he will avoid some complications by staying a step ahead of the disease process.

Before my son's diagnosis, I would have assumed a child with Crohn's would have obvious symptoms. I've met many parents whose kids didn't seem symptomatic but had moderate disease on testing.

Good luck to you and I hope his future tests give good results.
 
Smile Please said:
Giardia triggered the underlined Crohn's ........................I was told that might be a possibility.

I hope you understand he's fine now. Hasn't had anything resembling a flare since Jan. of 2013 and that's when he and I got the flu. his stools look normal and he eats like a horse.

Do you know what scares me about a Colonoscopy................Joan Rivers.

........................my son asking if he'll wakeup.................wanting an answer, but not the one they gave me.................the never ending health issues...........not being able to fix it.
Click to expand...


Though I'm considering signing off on this forum, I do feel it necessary to close the loop on this discussion.

Your fears are 100% valid. Sure, even gentle sedation carries some tiny risk- though I'm sure your medical team will not be taking selfies and your son does not have 81 year old organs. The only thing I will say is that kicking the can down the road with IBD is usually not in the best interest of the pt. and in terms of not being able to fix it- true, we may not. But the longer is goes untreated the harder it is to treat. Just stuff to keep in mind.


BTW- just a quick editorial here. If it is true that the doc on the Joan Rivers case was taking selfies while she was under then that doc should be taken out and shot. I would do it myself. That blatant disregard for the patient, disrespect to professional duties are all nothing short of disgusting. This is what we do when patients entrust their lives to us? Most docs, myself included have taken care of some famous people. Their organs and blood tests, and biopies and EKGs are no different than anyone else's. Selfies while a patient is under. Nothing more shameful.
 
My current level is 1200. My crp is 15 and esr around 38.

All my markers are high. I honestly don't feel that bad though. My appetite could be better, but that's it.

I get remicade infusions and that's it. Thinking about adding metho but side effects like hairloss and decreased libido freak me out.
 
baistuff said:
Though I'm considering signing off on this forum, I do feel it necessary to close the loop on this discussion.

Your fears are 100% valid. Sure, even gentle sedation carries some tiny risk- though I'm sure your medical team will not be taking selfies and your son does not have 81 year old organs. The only thing I will say is that kicking the can down the road with IBD is usually not in the best interest of the pt. and in terms of not being able to fix it- true, we may not. But the longer is goes untreated the harder it is to treat. Just stuff to keep in mind.


BTW- just a quick editorial here. If it is true that the doc on the Joan Rivers case was taking selfies while she was under then that doc should be taken out and shot. I would do it myself. That blatant disregard for the patient, disrespect to professional duties are all nothing short of disgusting. This is what we do when patients entrust their lives to us? Most docs, myself included have taken care of some famous people. Their organs and blood tests, and biopies and EKGs are no different than anyone else's. Selfies while a patient is under. Nothing more shameful.
Click to expand...

It's not the selfies I'm worried about. I thought about my post after I signed off and thought will they think of the selfies or the biopsies. I was referring to the biopsies. Our bodies were not made to be picked on and cut out on the inside. It's like getting a cut or gouging a chunk of meat off of your finger and not expecting the body not to show any signs of it happening. Not to mention the time it will take for it to heal back.
 
my son calprtectin higher than 1000 since 3 months ( since he diagnosed) he is using imuran 50 mg since 35 days and start modulen IBD elemental diet since 4 days now I want to know how long it take for calprotectin to come down ?
 

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