Has anyone ever had unexplained high levels of calprotectin after a stool sample?

[IBlameTheDog]

My DD's has gone from 100 to 415 in a few days and we don't know why.

She was told she needed a colonoscopy a week ago for unexplained stomach pains and now this.

I'm terrified about what could have caused it. Google (I know, terrible idea) suggests IBD/inflammation.

She suffers with constipation so wondering if that could be it? No other symptoms, no blood in poo or bleeding, no change in bowel habits.

Not unexplained. Always due to flare up on ulcerative colitis. Mostly with but sometimes without symptoms.

Yeah, that's one of the things I keep reading about but she doesn't have any of the symptoms.

If you're saying you don't always get symptoms though?...

Those numbers aren't actually that high but high enough that they need checking. Many people have in the thousands. Could be IBD. In my experience, calprotectin can be helpful but it's not everything. I have IBD and have never had high calprotectin.

Stomach pains and constipation tendencies can be IBD. Not everyone with IBD has urgency. There is a more constipated type.

My daughter had calprotectin levels of 4000. After a lot of battling with doctors, she was diagnosed with Crohns. Feel free to PM me if you want to. Good luck

I had calprotectin of 2000 with bleeding that turned out to be a colitis due to an infection that cleared up after antibiotics

Yes, me! I had 3 tests within a few months of each other all with widely varying results
300+
2000+
7
I had all the invasive tests as well (up/down and inbetween) and the only thing that was detected was h pylori. First symptom was diahorrea and feeling pretty ill/exhausted. Only symptoms now is acid reflux to the max which I am stil trying to sort out through various means.

Yes I did a few weeks ago. I had to have a colonoscopy.

They did take some biopsies for IBD and I am waiting for the results but I don't have any symptoms of it.

I think I had an infection which caused bleeding and erratic bowel movements, all finished now.

My test result was 1200. However, my GP didn't tell me to do it in the morning and I did it after I'd been out running so that might have skewed the result.

@sharpclawedkitten

Our GP didn't tell DD to do the test in the morning either. I just read that somewhere the other day.

I really wonder if she should get another test done before having a colonoscopy.

Can I ask how yours went? DD is 18 and borderline underweight, I think she'll really struggle with it, she's absolutely tiny.

That's so weird!!

I think I'm desperately trying to avoid her having to have a colonoscopy tbh.

She's very very small (24" waist) and she has crippling emetophobia so I'm not even sure she'll get through the prep - if she so much as retches or gags she'll call it a day, no matter how much she's managed.

This is what I'm worrying about - but she also has endometriosis and I'm wondering if it could be related to that.

It's a really frightening time. She's never had anything wrong with her before and it's hard to see her in so much pain.

Thank you. I have saved this post and will definitely reach out to you if DD has the same/similar 🙏🏻

Seeing them in so much pain is horrific. I was that much of a nightmare at my Surgery, they threatened to take me off their books. Apparently Crohns is very hard to diagnose and it takes a battery of tests. I would ask them to do the colonoscopy under GA. They still might not find anything conclusive. For us it was the Pillcam that confirmed it....and that really isn't a "nice" test to do unfortunately

I've never been told to do it in the morning.

Being underweight can also be a sign of IBD as you don't absorb nutrients as well.

The pillcam isn't suitable if you have strictures though, which can be the case if there is Crohns. A colonoscopy under GA is the best bet. Likely instant answers and, since she's in pain, she really does need it.

Unfortunately the colonoscopy didn't give us instant answers though, and even after CT scans and MRIs, the pillcam was the only test that confirmed it. Which didn't go according to plan the first time, possibly because of the strictures. Also OP, it might be worth asking your doctor if she can go on a liquid diet for a while. That provided some respite for my DD for a while

Probably the MRI and CT showed you didn't have serious strictures, so the pill cam was an option for you.

Colonoscopy didn't give us an answer the first time either, but that was due to poor prep drinking making for poor prep. It was repeated with more determination and a diagnosis made.

My mum has multiple times and honestly, they just can't work out why. They identified a few inflamed areas but cannot work out the cause and say it's nothing sinister, maybe a pre Crohns state?

I put a summary on here which might be helpful: https://www.mumsnet.com/talk/generalhealth/5213452-colonoscopy-plenvu-prep

I started it without sedation but it was quite uncomfortable. Once I had the sedation - no problems at all.

I didn't retch or gag with the prep - make it really cold, have juice after every mouthful and take it slow.

Oh and one other thing - I had visions of having a hospital gown on and nothing underneath and they lift it up and shove the tube up your backside. You wear "dignity shorts" with a hole in the back and I left my top on. You lie on the couch with the shorts and gown on and they just come in and put the tube in. So it's much less embarrassing or undignified that I feared. Your poor DD though, having this to contend with at 18 is horrible.

I have and they never found out why.
i did have dodgy symptoms but it never amounted to anything colon-y (according the the dr) I do have an inflammatory autoimmune disease though and think it is linked.

Honestly a colonoscopy is nothing, you don’t need a GA, get the sedation and painkillers and she’ll be oblivious. It’s over in 10 mins.

The prep is awful but the best way to do it is to take the prep substance in as small amount a liquid as she can (like shots) and immediately follow with a pint or two of something less vulgar (within their rules)

if it is IBD it can be treated (not cured) and she’ll adapt. Please don’t put her off a colonoscopy - it could really help her.