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High calprotectin - again!

11 replies

Boredofmyguts · 10/02/2025 09:01

I had a stool test last week as had been experiencing awful wind and some 'reflux incontience' she called it (ie mild sharting) and while not getting truly constipated or having proper diarrhoea, it has been very embarrassing/uncomfortable etc.
FIT came back well in the negative zone, but I had an alert on my phone this morning to to say the calprotectin was over 1000 and she wants me to do another stool test and then refer to gastro.
I went through all this about 2.5 years ago. Calprotectin was over 300, referall to gastro (I went privately as was really worried that I may have had cancer at that point as felt awful as well), had colonoscopy but it was fine although was only a 'Fair' clear out for some reason, also had endoscopy a few months later which was also fine (although another gastro from RefluxUK thinks I have a small HH).
This is my third calprotection test - first was over 300, they retested a couple of weeks later as I'd just had Covid, and it was over 2000 which triggered the colonoscopy, then a couple of months later I came back from holiday with awful diarrhoea and had another one and it was 7 so it had gone back to normal!
So I really have no idea what's going on now. I thought it was too much fibre giving me wind due to being on the Acid Watcher Diet, but now, who knows?
All bloods were fine - slightly on the low side for iron stores (not aneamic), but I always am.
Can having reflux/GORD give a high calprotectin result?
Did the Dr not taking biopsies first time round mean he didnt' pick up any IBD? I did have small bowel MRI as well at that point which was 'normal'.
I've got to log in to work now but will do some more research later on today., but in the meantime I'm going to the hive mind to see other people's experiences.

OP posts:
flappingsoles · 10/02/2025 09:06

youll need another colonoscopy I expect. Look into microscopic colitis.

Boredofmyguts · 10/02/2025 12:13

flappingsoles · 10/02/2025 09:06

youll need another colonoscopy I expect. Look into microscopic colitis.

I think that's probably what will happen. How can I insist they take biopsies as my last GI didn't bother when IBD was suspected?

OP posts:
flappingsoles · 11/02/2025 00:00

I’m not sure. Maybe when you have your consult you can ask why they weren’t taken? I’ve been told I’ll likely have biopsies taken even of healthy looking tissue

ChazsBrilliantAttitude · 12/02/2025 19:44

My colon looks completely normal in colonoscopies but all the biopsies showed microscopic colitis. My FC was in the 500s.

Do you take proton pump inhibitors for reflux (I did for years due to a hiatus hernia)? PPI are a known trigger for MC.

Developedanillness · 12/02/2025 19:46

If

Boredofmyguts · 12/02/2025 20:48

flappingsoles · 11/02/2025 00:00

I’m not sure. Maybe when you have your consult you can ask why they weren’t taken? I’ve been told I’ll likely have biopsies taken even of healthy looking tissue

I will do for sure. It will be with a totally different doctor as well.

OP posts:
Boredofmyguts · 12/02/2025 20:51

ChazsBrilliantAttitude · 12/02/2025 19:44

My colon looks completely normal in colonoscopies but all the biopsies showed microscopic colitis. My FC was in the 500s.

Do you take proton pump inhibitors for reflux (I did for years due to a hiatus hernia)? PPI are a known trigger for MC.

I have been on and off PPI but haven't taken any since the early summer as they don't do anything for my reflux really - and possibly make it worse. i just take Gaviscon Advance in terms of medication.
My first Calprotectin test was taken before I even started on PPI when it was 300+, second I had started taking them but only for a week or so, third I had been on them for a couple of months (all tests were in about 2 months of each other in 2022). So this is my fourth one and not on PPI again.
Are you on any medication for your microscopic colitis?

OP posts:
ChazsBrilliantAttitude · 12/02/2025 21:35

I am on steroids (budesonide) for 8 weeks to calm down the flare I am having. It is working. Then hopefully I can come off them.

flappingsoles · 12/02/2025 21:48

Just to update I had biopsies taken despite my bowel looking normal and a normal calprotectin (below 50) to rule out MC yesterday so I have no idea why you didn’t, especially with your results!

Boredofmyguts · 13/02/2025 09:24

flappingsoles · 12/02/2025 21:48

Just to update I had biopsies taken despite my bowel looking normal and a normal calprotectin (below 50) to rule out MC yesterday so I have no idea why you didn’t, especially with your results!

I have no idea either with a calprotectin of over 2000 at that point. When I went to have an endoscopy a while later with the same Dr I asked if he was going to take biopsies and he said 'only if I see any inflammation'.
It's very hard to 'argue' with a doctor who is supposed to know more than you as a layman!

OP posts:
Boredofmyguts · 13/02/2025 09:26

ChazsBrilliantAttitude · 12/02/2025 21:35

I am on steroids (budesonide) for 8 weeks to calm down the flare I am having. It is working. Then hopefully I can come off them.

Glad it is working for you! I did my 2nd stool sample this morning (lucky DH delivered it on way to work as I'm not in until later and they like it first thing) to see if there are any nasty bacteria or pathogens but I really don't think there will be. The GP is just making sure it's nothing 'obvious' before NHS referral I think.

OP posts:
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