Calprotectin at 145 and panicking

[CalebC]

Hey everybody.

I’ve been experiencing constant abdominal discomfort for 10 weeks now. I wouldn’t say it’s pain but it’s definitely annoying, like my intestines are sore. It’s mostly lower abdomen but can be upper too. Sometimes food makes it better, sometimes worse.

It happened to me 3 years ago too, lasted for like six months and went away. But now I was worried so I pushed my GP for tests. CRP was normal, complete blood count too. Liver, pancreas normal. But calprotectin was raised at 146.

Obviously I’m freaking out now. Below 100 is considered normal. 100 to 200 is kind of a grey area and over 200 is very suggestive of IBD.

I am on a PPI too and apparently it can raise calpro levels.

I’m waiting for my GP to follow up on this but I feel defeated. Although 146 is apparently low for IBD, I’m putting 2 and 2 together: raised calpro and abdominal pain is almost 100% sure to be IBD.

But the thing is I don’t have diarrhea, blood, unintentional weight loss or anything like that. Just the dull ache. I the past ten weeks I’ve had diarrhea twice and it was after eating dodgy salad but it never happened again since.

Did anybody here ever have raised calprotectin but didn’t turn out having IBD?

Thank you for your time. I’m panicking hard.

[Liz191]

I don't know what might be causing your symptoms but I would say a calprotectin level of 146 isn't very high. Like you've said yourself it's indicates there might be something going on there but there might not For context if I'm having an IBD flare my levels are normally over 1000. My last flare it was over 2000. I would wait and see what the GP says. It sounds like your symptoms are annoying but manageable so if there is something going on you've caught it early. I doubt they will give you a definite diagnosis based on that one test result so best to speak to your GP and find out how they want to follow it up.

[CalebC in reply to Liz191]

Thank you for your reply. I have read many times that IBD sufferers tend to have calprotectin levels way higher than mine but in some cases it can be be on the lower side. I’m also scared of colon cancer. I’m 37 with no family history but it’s on the rise in younger people. Now that I know I have inflammation it feels like I can “feel” the intestines being inflamed and it’s freaking me out. Probably anxiety lol. My friend with Crohn’s says she doesn’t feel constant dull ache but more like pain after certain foods for a few hours and diarrhea.

Thank you for your time. I’m going crazy with worry.

[West987]

My calprotecting was 221 but I also experienced diarrhoea and abdominal pain, so the doctors suggested that there was an active inflammation. After a colonoscopy they said it was mild proctitis and ulcerative colitis. I stressed a lot and stressing can make things worse. If I were you, I would wait for the follow up but in the meanwhile be proactive in observing your body and maybe record what you eat and when you feel the pains. Rate them from 1-10 and add a characteristic word next to them. Also monitor your bowel movements and look for changes in the shape, odour, colour, or consistency of the stool. I found that doing these gave me some sense of control over my body and was able to offer my gp solid (no pun intended!) information that would otherwise be difficult to infer. Wishing you all the best.

[CalebC in reply to West987]

I already record everything daily. It seems there’s no real trend or any rhyme or reason as to what makes the symptoms worse or better. I don’t have diarrhea or blood which seems to make every doctor discard the IBD or cancer possibility but I will push for tests.

I should note his happened to me three years ago too. Lasted months and went away on its own. I never did any tests at the time.

[West987 in reply to CalebC]

I understand.. I had my issue happening to me twice before, in the past five years, but each time subsided on his own after a few weeks. This time it has been troubling me since December, but no medication has been offered or even suggested, as I am still waiting to be seen by a gastroenterologist at the hospital. I tried to have it investigated abroad, but eventhough the biggest test like ultrasounds were affordable (at about €80-90), the numerous blood works and consultations, quickly added up. So, there’s nothing more I can do than wait, in my case.

It is great you are already keeping track of your body. Admittedly, I found no pattern in my bowel movements or trigger foods, other than coffee, green leaves and consuming much fiber. I would say, we have a natural tendency to always fear for the worst (I know I do, anyways), but most times thankfully it is not the case. I hope you find what is happening to you soon, and please keep us posted x

[CalebC in reply to West987]

Thank you, you are very kind. I wish you the same!

Coffee can mess me up too, but on some days it’s also fine. I do love it though and have a hard time not drinking any. I stopped drinking it for a month but still had abdominal pain daily. so two days ago and yesterday also I said fuck it and had a cup. I didn’t suffer from it and actually had the best 48 hours I’ve had since the beginning of this 10 weeks ago. Yesterday evening I had zero pain and was blown away. This morning only a bit of discomfort but at least I know my body can be painless in the right circumstances.

Continuing to work and raise my kids while waiting for appointments and tests is the most difficult thing. I obsess over my symptoms and I’m not present mentally when I’m around people. Anxiety sucks.

[Frasina]

I have both IBS (past 25 years) and IBD (past 2 years). Calprotectin levels can differ in individuals so that two people with similar inflammation could have completely different levels. As a rule of thumb, over 100 is considered raised and because you are 'feeling' inflammation, there may well be some. But, please do not worry! Even if you do have IBD the chances are that it is really mild and would be easily treatable. The only way to find out for sure what is going on is to have a colonoscopy and you would need to see gastro first as they would have to organise it. Unfortunately outpatient waiting times are rather long these days. If the wait to find out what is what is making you too anxious, you could pay for a one off appointment to see a gastroenterologist (this is what I did in the first instance) and they may be able to push through tests on the NHS a bit sooner. My IBD by the way is patchy pancolitis and I never had any blood, but I did have D and lost a stone in a month. Good luck!