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Calprotectin result. Really high. Any ideas?!

7 replies

itendswithus · 30/06/2023 00:27

Please can anyone advise on this result and what it may mean?

My just turned 17 year olds Calprotectin test came back with a result of over 2500. Normal range is 0-50. We have seen the gastroenterologist however they are being really vague as to what this could mean.

I'm not looking for a diagnosis, just for anyone with an understanding of this test to give a rough idea of how concerning this may or may not be.

Or any info as to how this test works. I just need to understand it better!!

OP posts:
nocoolnamesleft · 30/06/2023 00:36

Basically, it suggests that there is some form of inflammation in the gut. You can get a temporary rise in faecal calprotectin after a particularly nasty tummy bug, for example, but not usually as high as that. The possibility that they will be seriously considering is whether this might possibly be down to Inflammatory Bowel Disease. This is split into two conditions Crohn's Disease, or Ulcerative Colitis. Both of these cause inflammation/ulceration of the lining of the gut, but in slightly different patterns. The symptoms tend to be abdominal pain, weight loss, changes in bowel habit (especially bloody mucusy diarrhoea), oral ulcers, perianal ulcers...you don't actually say why the test was done.

Investigation often involves endoscopy (camera tests), with biopsies taken if anything looks concerning. If it were to be IBD, there isn't a cure as such, but there are lots of treatments, both in terms of medication, and specialist temporary diets. Occasionally surgery can be needed. If you want to know more about the possibility, the Crohn's and Colitis website is useful. Crohn's & Colitis UK (crohnsandcolitis.org.uk)

Crohn's & Colitis UK

We're here for everyone with Crohn's and Colitis

https://crohnsandcolitis.org.uk/

itendswithus · 30/06/2023 01:09

@nocoolnamesleft thank you so very much for your reply. It's exactly what I needed.

She's had the tests done as she's had a range of symptoms starting back at the end of Feb which were tiredness, lethargy, headaches and generally feeling unwell. Bloods were done via the gp and put down to a mild anaemia. 3 weeks ago she came to me with a dark purple/blackish thumb and finger. We went to the gp that day and he did new bloods which showed a raised CRP, low kidney function and a speckled ANA. Luckily we took private health out prior to all this so in the space of a week she's seen a consultant rheumatologist who has done blood tests (14 bottles worth) chest X-ray, wee and faecal tests, a full body mri and a referral to gastro who we saw today.

My DD has had rectal bleeding, the weird thumb thing which she has said she thinks is small vessel vasculopathy, red eyes, mouth sores, quick and obvious weight loss, nausea, random vomiting, lack of appetite, odd rashes and so on.

I'm presuming that she has IBD, however the consultant seems to think she may have a "couple of autoimmune conditions" and I just wasn't sure how bad that result was. She's just literally turned 17 and is a shell of herself. It's horrific and terrifying to watch.

If you have any further input I'd be really interested to hear it.

OP posts:
Lbet · 19/08/2023 14:12

Hi There.

Just wondering if you have got any further with any answers or diagnosis of any kind.

Interested in this thread?

Then you might like threads about this subject:

itendswithus · 22/08/2023 22:58

Hi.

Dd has been diagnosed with severe chron's and a blood clotting disorder. Now on a whole world of medications to get on top of it but it's going to be a long road back!

OP posts:
Remmy123 · 22/08/2023 23:11

@itendswithus i hope your DD is doing well - my son got diognosed with UC a couple of years ago - there is a great Facebook site ' UK parents of kids with IBD' it's very supportive and informative x

HGC2 · 22/08/2023 23:20

I have severe chrons but to give you hope as your daughter starts this journey, I’m in remission and have been for 2 years after having surgery. I am also on weekly injections. Once your daughter gets the right medication she’ should find such a difference

itendswithus · 21/11/2023 19:44

I realised that I never came back to thank you for posting. It's been a whirlwind but DD is doing much better for now although we have been told it will be a difficult road ahead. And thank you for the positivity! I hope all affected by IBD are as well as possible xx

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