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Boris-bobo profile image
6 Replies

Here is my story. To cut it short after numerous visit to GP since last October and been sent away to be told you have GERD increase Omeprazole for acid reflux. Finally last week I said you need to investigate this further. I have been having incomfortable feelings sensations in al of my tummy from the stomach to the bowel to the sides. Lots of wind burping constantly and occasional nausea. GP visited me and said your tumky feels ok. We did a stool test for micobiology and came back negative. Calptotectin test result 3000. She called me to inform me she did a urgent referral to GI she wants me to br seen in a week. I have read extensively about Calprotectin IE iflammatory mark. I have also read that some people had Calprotectin value of 4000 - 9000 - 1800 - 2000. Of course my worse fear is that is cancer. Suffering from health anxiety does not help as I catastrophise what will happen. The only symptoms I have is the ones described above. I go regurarly every morning no diahorrea no blood no mucuos no pain. I have had a fissure for sometime that has been bleeding occasionally when I go. But very little.

Can anyone please tell me or share with me their story. I know that Calprotectin value of 3000 is high. All my blood test are ok no anemia nothing. What can I expect to be told by GI? Or what can they find? Thank you for any reply.

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Boris-bobo
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6 Replies
Monkeypuzzler profile image
Monkeypuzzler

My son has similar symptoms to you - blood tests ok, no diarrhoea or blood in stool, he had a raised Calprotectin level but not that high. Finally after 4 consultants, numerous GP visits, 2 stone lost in 2 months he has had a capsule endoscopy last week and awaiting results. (Strangely the clearout drink moviprep in preparation for endoscopy did nothing to him so wondering if this part of his problem.)

He had previously had an endoscopy 2 years ago after a flare up which found nothing but like you he was put on omeprazole for overproduction of acid. The professor we are now seeing has taken him off those and absolutely no detrimental effect so weren’t doing anything. I think to have capsule endoscopy you need to have had an endoscopy or colonoscopy first.

Good luck to you in getting a diagnosis as it can be notoriously tricky. I will reply when we have results in case it helps you. Crohns in small bowel or a functional disorder are suspected for my son and he doesn’t care what it is just wants help with managing symptoms and to get his 18 year old life back after 2.5 years of dominating these important teenage years.

Boris-bobo profile image
Boris-bobo in reply toMonkeypuzzler

Thank you for your reply. Do you mind if you tell me what was the level of calprotectinin that your son had thank you

Monkeypuzzler profile image
Monkeypuzzler in reply toBoris-bobo

It was 230 but taken when he was doing alot better but apparently lots of factors can affect this inflammation level such as medication etc so whilst it is indicative it is not definitive to diagnosis.

RedFlamingo27 profile image
RedFlamingo27

Hey! My calprotectin level was like 1200 when I did it a few months ago. Not as high, but still pretty up there. I ended up having Crohn’s disease and after being on Prednisone and now the Humira, it’s gotten down to 530. Not where it should be, but drastically lower. Try not to worry, it sounds like your dr’s are pretty on top of it, I always say no news is good news.

After complaining to my dr for about a year about pain and diarrhea and bleeding (I had a fissure as well) my regular dr finally gave up and sent me to a specialist. She did a calprotectin test as a last resort kind of thing because previously all my blood work came back fine aside from my CRP (inflammatory marker) was elevated so she had no clue . When it came back so high she had me on a cancellation list for a colonoscopy right away . They took biopsies and found out I have Crohns. It all took about a month after my scope to get a final diagnosis and then we started treatments.

Just remember that stress can often add to symptoms and try not to worry , we’ve all been there. Good luck in everything 💕

Rosiesdaddy21 profile image
Rosiesdaddy21

Hi I’m awaiting my colonoscopy. My calprotectin was only 500 odd. But that’s risen since my first test of 340. What other symptoms do you get? I get aches and pains all over my body, legs and back the most. I’m fed up waiting and just want answers

Boris-bobo profile image
Boris-bobo

Pain in my lower back. Discomfort all over my tummy mostly sides.

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