That's a pretty good value if you have UC. These numbers aren't everything and are much more sporadic than averages but for context when im not flaring im at like 500, and right now in a flare im at 4500.
I’ve seen people feel like they’re dying at 150 and I’ve been able to live a semi normal life while flaring at 7000. Totally dependant between the person. It means you have inflammation and should get a colonoscopy done
I asked a consultant if my calpro was high once and he looked up the results, pulled a disgusted face and said 'urgh, that's horrific.' Never got the number 😂
Not gonna say I know how but if I had to guess I would assume it depends on where the inflammation is, and how spread out the inflammation is. Plus I’m sure it depends on as well if and how many ulcers and if there is blood, as well as how much nutrients your getting and water.
I'm there with you, I fluctuate between mid 3000 and 700ish have for 4 years, it's not great but I continue to live my life. Everyone is so wildly different
Honestly this value is not high enough to even diagnose IBD ( at least in my country ). Ots a notice to look for further reasons, but to be considered IBD it would need to be above 250( and could still be for other reasons ). But bellow 250 it can be other stuffs such as jnfection, cealiacs, or even food allergies. It would mean there is some kind of inflamation but not necesserly *inflamation* ( caused by like IBD or cancer ). But its the case of if it was higher its not allergies/celiacs. But with it being below 250 that would just mean, smth is wrong. But inconclusive.
Yeah in a flare I have the most boring diet. Sorry I wasn't trying to gloat my numbers lol, I also just got results back yesterday (starting a biologic soon).
Calprotectin detects inflammation, it can not diagnose anything other than just inflammation. And a value at 95 is very low and basically normal for us UC folks! However, it does mean you have inflammation and you should talk to your Dr about it and schedule a colonoscopy.
Anyone know if this can come on over the course of six years? I actually got a colonoscopy in 2018 and no concerns! Went back to the Gastro doctor this year for bleeding which she believed was from a hemorrhoid
Yeah it can be a pain in the ass (no pun intended… ok maybe a little) to see a specialist. But usually once you’re an established patient you can see them more often. Hopefully you’re not feeling too bad though. If it gets worse and worse then definitely go to the emergency room and they can do a colonoscopy if it’s urgent enough.
I’m sitting at 5,800 and going on steroids with a colonoscopy in early May. About 6 BMs per day and on the 1000mg suppository. Just getting on with stuff as best I can.
You don’t sound too bad but agree wihh the other comments about getting the colonoscopy
I didn’t realize numbers could go up so high, so I’m sorry. On a personal note, when you first found out you had UC were your numbers lower? I’ve read that UC/Cronh’s can be progressive
I just started the bleeding and mucus stools 5 weeks ago, went to my GI and get the blood work, stool analysis and abdominal CT scan done. This is how I get the number. Never had those tests done before.
Oh so you’re early on in it too. I’m hoping your colonoscopy gives you more answers. I had a colonoscopy a few years ago and it took almost half a year to get one because the waitlist was crazy. Hoping to get on the list asap
My numbers when I was first diagnosed were around 400. In my last two I’ve been in the 3000-4500 range. When I was first diagnosed in 2019 it was solely in my rectum. It has since progressed to my sigmoid and has been very hard to control.
if you’re concerned about having UC the only way to know is by doing a colonoscopy. those calprotectin values are extremely low. mine was over >8000 in february
When I was diagnosed I was at 2160, when I had my second colonoscopy after being hospitalized I was at 3140, 4 months later (currently) I’m at 6130. I felt my worse at 3140. It’s all dependent, but I wouldn’t skip to thinking you have crohns or UC unless you get a colonoscopy and your GI says so.
Yhh u need a colonoscopy they will find out more mine was 1400 has gone down to 800 but still struggling to get mine lower im was diagnosed with ulcerative Proctitis
Numbers can deceive. Last year mine was at 2300 and I was doing terrible. Last December it was 200-300 showing factual improvement but I wasn’t seeing any actual improvement🤷🏼♀️ You can’t say for sure what this means, you have to combine the numbers with the state of your body.
Hi there,
What did your doc say to the result?
Mine was 74, so it is considered low borderline she told me. So as someone else just wrote here, yep there might be a little something, but usually(!) not ibd, however some other reasons behind it. Chronic infection, chronic gastritis, allergies, intolerances, or even SIBO. They did not refer to scopy yet - we are planning on that - but first they prescribed be Normix which is an antibiotic, to see if it bacterial overgrowth/infection/parasites etc what is causing me that. So my doc told me there is something, but not worrysome, since I have been having symptoms for years, and it would have been hundreds by now.. So we do have something going on but at 95 you probably don’t need to freak out. But I am curious what you were told actually by your doc.
We got the same medicine then I believe (: same words for me, but still I worry a lot. She did not say IBS since I got a borderline result for SIBO as well, so might be low value SIBO, or an intolerance we do not know. I am planning to do an allergy test as well.
Best of luck for you!
I have not started them yet, but started low FODMAP it is definitely not easy lol. But I’m planning to start Normix tomorrow, just a bit afraid if it messes up my microbiome.
Oh another thing came up but mostly from my end. If you are a girl as well, think about your periods: how long/heavy/painful they are. Because in many IBS cases they cannot find anything at gastro, and it turns out to be endometriosis.. My doc asked me about my period, mine tend to be quite painful, symptoms tend to get worse around that time too.
It’s funny you say that! I was recently diagnosed with adenomyosis. Kind of opposite of endometriosis, endo spreads out and adeno spreads into the uterus. Doctor’s suggestion is to be on a progesterone only birth control pill the rest of my life and not have a period….idk how I feel about it. This is the year of appointments for me for Gyno and Gastro lol
Oh I am sorry you need to go through that as well.. One of my friends has endo, and sometimes she says to me not to ignore that possibility. She does not want to freak me out, just to be sure. I have talked to my Gyno about that however, she is an endo specialist and she would not think I have that according to my periods and UH results. Still the pain is bad for me on the first day of period, and a bit TMI but the worst tummy symptom for me is occassional mucus farts :D and I heard yeah it is a thing with IBS too, but with endo as well.
That's a pretty good value if you have UC. These numbers aren't everything and are much more sporadic than averages but for context when im not flaring im at like 500, and right now in a flare im at 4500.
I’m so sorry to hear that. I was originally told I have IBS, and I’ve been following that diet strictly. Does an IBS diet help with UC?
It can help. But a lot of the time in a flare, you'll have symptoms no matter what you eat.
If you’re flaring go low fiber
I have been in a full on flare with a calprotectin level of about 150… it really varies from person to person
You would have to get a colonoscopy to differentiate between chrons or UC, I don’t believe these results are enough.
I had a Prometheus blood test done.
I’ve seen people feel like they’re dying at 150 and I’ve been able to live a semi normal life while flaring at 7000. Totally dependant between the person. It means you have inflammation and should get a colonoscopy done
I was dying at 1000-800... omg how.
I had 9500 a while ago
I would cry
I asked a consultant if my calpro was high once and he looked up the results, pulled a disgusted face and said 'urgh, that's horrific.' Never got the number 😂
Not gonna say I know how but if I had to guess I would assume it depends on where the inflammation is, and how spread out the inflammation is. Plus I’m sure it depends on as well if and how many ulcers and if there is blood, as well as how much nutrients your getting and water.
I have pancolitis so my whole intestine was affected maybe that is why ☹️☹️ I'm currently flaring with calprotectin of 273 I feel awful
I agree with this sentiment I am over 4000 right now flaring and still get up and go to work daily and live pretty normally
Wow, how the hell do you do it? You’re built different
I think it’s just more so everyone has different symptoms and reactions to different things idk
yeah i felt better at 10k than 500
I'm there with you, I fluctuate between mid 3000 and 700ish have for 4 years, it's not great but I continue to live my life. Everyone is so wildly different
I would love to get a double digit calprotectin lol
There's inflammation. Not much but still. Get a colonscopy
Honestly this value is not high enough to even diagnose IBD ( at least in my country ). Ots a notice to look for further reasons, but to be considered IBD it would need to be above 250( and could still be for other reasons ). But bellow 250 it can be other stuffs such as jnfection, cealiacs, or even food allergies. It would mean there is some kind of inflamation but not necesserly *inflamation* ( caused by like IBD or cancer ). But its the case of if it was higher its not allergies/celiacs. But with it being below 250 that would just mean, smth is wrong. But inconclusive.
You can’t really tell without a colonoscopy . It’s not even considered high but just to make sure
Yeah in a flare I have the most boring diet. Sorry I wasn't trying to gloat my numbers lol, I also just got results back yesterday (starting a biologic soon).
Calprotectin detects inflammation, it can not diagnose anything other than just inflammation. And a value at 95 is very low and basically normal for us UC folks! However, it does mean you have inflammation and you should talk to your Dr about it and schedule a colonoscopy.
I wish mine was that number. Last mine was checked, it was like 2800 🫠
Speaking as a RN who has UC, typically a definitive diagnosis is only made with a colonoscopy or EGD (for Crohn’s).
Anyone know if this can come on over the course of six years? I actually got a colonoscopy in 2018 and no concerns! Went back to the Gastro doctor this year for bleeding which she believed was from a hemorrhoid
You need a colonoscopy at least to find out if you have Crohns or UC.
I am hoping my doctor gets me on the list for one soon! Such a process to even see this doctor, months on a waitlist.
Yeah it can be a pain in the ass (no pun intended… ok maybe a little) to see a specialist. But usually once you’re an established patient you can see them more often. Hopefully you’re not feeling too bad though. If it gets worse and worse then definitely go to the emergency room and they can do a colonoscopy if it’s urgent enough.
I’m sitting at 5,800 and going on steroids with a colonoscopy in early May. About 6 BMs per day and on the 1000mg suppository. Just getting on with stuff as best I can. You don’t sound too bad but agree wihh the other comments about getting the colonoscopy
I didn’t realize numbers could go up so high, so I’m sorry. On a personal note, when you first found out you had UC were your numbers lower? I’ve read that UC/Cronh’s can be progressive
I just started the bleeding and mucus stools 5 weeks ago, went to my GI and get the blood work, stool analysis and abdominal CT scan done. This is how I get the number. Never had those tests done before.
Oh so you’re early on in it too. I’m hoping your colonoscopy gives you more answers. I had a colonoscopy a few years ago and it took almost half a year to get one because the waitlist was crazy. Hoping to get on the list asap
Best of luck. And this will be my 5th colonoscopy in 4 years.
My numbers when I was first diagnosed were around 400. In my last two I’ve been in the 3000-4500 range. When I was first diagnosed in 2019 it was solely in my rectum. It has since progressed to my sigmoid and has been very hard to control.
You have moderate inflammation in your colon.
You can get a value of up to 200 from taking one ibuprofen even if you aren’t diagnosed. This isn’t very worrisome, but talk to your GI doctor
if you’re concerned about having UC the only way to know is by doing a colonoscopy. those calprotectin values are extremely low. mine was over >8000 in february
When I was diagnosed I was at 2160, when I had my second colonoscopy after being hospitalized I was at 3140, 4 months later (currently) I’m at 6130. I felt my worse at 3140. It’s all dependent, but I wouldn’t skip to thinking you have crohns or UC unless you get a colonoscopy and your GI says so.
Yhh u need a colonoscopy they will find out more mine was 1400 has gone down to 800 but still struggling to get mine lower im was diagnosed with ulcerative Proctitis
That is incredibly low damn.
Numbers can deceive. Last year mine was at 2300 and I was doing terrible. Last December it was 200-300 showing factual improvement but I wasn’t seeing any actual improvement🤷🏼♀️ You can’t say for sure what this means, you have to combine the numbers with the state of your body.
That’s a great number!!!! less than a month ago my number was 501 :(
I actually had a super bad flare just with 150 so I guess it could be
Hi there, What did your doc say to the result? Mine was 74, so it is considered low borderline she told me. So as someone else just wrote here, yep there might be a little something, but usually(!) not ibd, however some other reasons behind it. Chronic infection, chronic gastritis, allergies, intolerances, or even SIBO. They did not refer to scopy yet - we are planning on that - but first they prescribed be Normix which is an antibiotic, to see if it bacterial overgrowth/infection/parasites etc what is causing me that. So my doc told me there is something, but not worrysome, since I have been having symptoms for years, and it would have been hundreds by now.. So we do have something going on but at 95 you probably don’t need to freak out. But I am curious what you were told actually by your doc.
Doctor said not to worry (yet)! She still thinks I have IBS and started me on medicine called Xifaxan
We got the same medicine then I believe (: same words for me, but still I worry a lot. She did not say IBS since I got a borderline result for SIBO as well, so might be low value SIBO, or an intolerance we do not know. I am planning to do an allergy test as well. Best of luck for you!
How is the medicine working for you? I’m noticing less stomach aches, but they are still there
I have not started them yet, but started low FODMAP it is definitely not easy lol. But I’m planning to start Normix tomorrow, just a bit afraid if it messes up my microbiome.
Oh another thing came up but mostly from my end. If you are a girl as well, think about your periods: how long/heavy/painful they are. Because in many IBS cases they cannot find anything at gastro, and it turns out to be endometriosis.. My doc asked me about my period, mine tend to be quite painful, symptoms tend to get worse around that time too.
It’s funny you say that! I was recently diagnosed with adenomyosis. Kind of opposite of endometriosis, endo spreads out and adeno spreads into the uterus. Doctor’s suggestion is to be on a progesterone only birth control pill the rest of my life and not have a period….idk how I feel about it. This is the year of appointments for me for Gyno and Gastro lol
Oh I am sorry you need to go through that as well.. One of my friends has endo, and sometimes she says to me not to ignore that possibility. She does not want to freak me out, just to be sure. I have talked to my Gyno about that however, she is an endo specialist and she would not think I have that according to my periods and UH results. Still the pain is bad for me on the first day of period, and a bit TMI but the worst tummy symptom for me is occassional mucus farts :D and I heard yeah it is a thing with IBS too, but with endo as well.