Very high Calprotectin levels. Very concerned and confused! Thoughts? [Archive]

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Solidsimpson

06-01-17, 16:39

I was having some bloody diarrhea last year so I did a colonoscopy. They found a very small amount of inflammation. Like nothing to be concerned about but chronic inflammation nonetheless. Probably only takes up like 2% of my colon.

I decided to a year later (now) to revisit why I still have some mild bowel issues. 1-2 fairly loose stools a day. No pain or any other symptoms.

I did my first comprehensive stool test and my calprotectin levels were off the charts at 1500 (normal is below 50). My symptoms are better than they were when I got a colonoscopy so I don't expect that to be different. I'm just confused why my numbers are so high.

I do have eosinophilic esophagitis so inflammation can be from that maybe. And also I heard that taking acid reflux medication can raise levels significantly and I take Zantac 2 times a day.

Again my levels are at 1500. No occult blood was found. Seeing Doctor next week. Anyone have experience of high levels when they aren't expected? False positives?

Pepperpot

14-01-17, 00:28

Yes me.
My level was over 300 and I had a colonoscopy. Nothing was found. She said sometimes we get false positive results. I'm not sure how this would help you but I wanted to share :)

Solidsimpson

15-01-17, 18:33

Thanks!! Mine was 1500!!!!

No evidence I have inflammation anywhere else besides the little shown in my colon but why such a high number? Doctor wasn't very concerned since all my other numbers were good but she did say it was the highest number she has seen. Maybe it was false? Ugh

Elizabeth Fry

02-08-17, 11:20

Hi Solidsimpson

I am linked to an old post of yours where you cal protectin was very high. Mine is 700 and I'm worried sick. What was the outcome for you? Did it all settle down? Hopefully it did.

Many thanks
Elizabeth

Solidsimpson

02-08-17, 14:43

Elizabeth,

Nothing really new to update with me which I guess is a good thing? I feel fine. I never got retested or anything. My colon is still not great but far from being horrible.

Do you have any symptoms or get a colonoscopy?

Elizabeth Fry

02-08-17, 15:34

Thanks that is so reassuring. I had a colonoscopy in November last year and they found a couple of benign polyps (caused by inflammation) and said ibs and haemorrhoids. The caloprotectin then was a bit raised. I was reassured, then I saw some blood recently and the diarrhoea got worse so my GP referred me back. The GI consultant said He thinks I have a malabsorption problem (because I had my gallbladder out and this can happen) and caused also by campylobacter infection I had 2.5 years ago. He did the caloprotectin test before he'd do a sigmoidoscopy. That's come back raised 700 and he has ordered a ct abdomen as he doesn't want to do another colonoscopy. He thinks it's viral (campylobactor because it can stay around) or inflammatory condition such as colitis.

My Gp says that's the thing with tests it throws things up unnecessarily. She says it only a marker for inflammation nothing else. So am pleased to hear that and also that yours was raised but settled down.

Thank you so much for responding.

Solidsimpson

02-08-17, 15:46

Capercrohnj

02-08-17, 20:54

Yea it's tricky! I wonder if mine was just a mistake. I do have chronic colitis but it's very mild. I don't have any malabsorption or any reason to think I have colitis in my small intestine. So it's a mystery. Keep us updated!

You definitely don't have colitis in your small intestine ;) (colitis is inflammation of the colon).

Solidsimpson

02-08-17, 20:57

Elizabeth Fry

03-08-17, 00:14

Solidsimpson

03-08-17, 00:20

Apparently you can get false readings and I suppose they vary e.g. On one day high on another lower. I hope mine was just a blip. I have been much better over the last two days - fright perhaps? Usually when I'm anxious it gets worse though. Funny just been emailing someone and told them what's happened and I got the pain! Hadn't had it for 2 days as I said. I've been doing the ibs YouTube video by Michael Sealey and Mindfulness by Jon KabutZinn which have helped a bit.

Thanks to you for sharing, I'll let you know how I get on but if you do think of anything else which might allay my fears, I would be glad to hear it.

Thanks again,
Elizabeth

Yes, anxiety definitely plays a role in symptoms. When I looked around online, it seems like people are usually in a bad flare if it's over like 600 Calprotectin levels and they feel it. So the fact that ours is so high and we feel ok for the most part, maybe it is a mistake. Mine is 1500 and usually you are in the hospital if it's that high. I would do it again but I don't want to spend the money and go through the process really. But maybe I should!

Capercrohnj

03-08-17, 01:28

Thanks Caper! I meant inflammation I small intestine. My colonoscopy didn't show any and my comprehensive stool exam didn't show any evidence of malabsorption. Just extremely high calprotectin! It's pretty spooky...

When you say you have mild colitis do you mean ulcerative colitis or possibly crohn's (if there is anything in the small intestine)? I have crohn's but never had a calprotectin while I was flaring. I do know people with uc or crohn's with it in the thousands and not in the hospital. It could be false as probably can happen with any test.

Solidsimpson

03-08-17, 01:34

When you say you have mild colitis do you mean ulcerative colitis or possibly crohn's (if there is anything in the small intestine)? I have crohn's but never had a calprotectin while I was flaring. I do know people with uc or crohn's with it in the thousands and not in the hospital. It could be false as probably can happen with any test.

So it's most likely a mild Crohn's that is only in the colon. It's only in my sigmoid colon. But I do believe if I really had a 1500 then I would be in a very severe flare. It's just pretty frightening to see!

Capercrohnj

03-08-17, 01:51

So it's most likely a mild Crohn's that is only in the colon. It's only in my sigmoid colon. But I do believe if I really had a 1500 then I would be in a very severe flare. It's just pretty frightening to see!

Ok that was my diagnosis (crohn's colitis and perianal Crohn's) but my entire Colon was involved. I say was as I have had my colon and rectum removed (i had some nasty fistulas). I still have crohn's obviously but I'm in remission as i had the diseased parts out (but it can and probably will attack somewhere else). Yes that number would be scary. As I said I have no clue what my calprotectin was when I was very sick.

Solidsimpson

03-08-17, 02:07

Ok that was my diagnosis (crohn's colitis and perianal Crohn's) but my entire Colon was involved. I say was as I have had my colon and rectum removed (i had some nasty fistulas). I still have crohn's obviously but I'm in remission as i had the diseased parts out (but it can and probably will attack somewhere else). Yes that number would be scary. As I said I have no clue what my calprotectin was when I was very sick.

Sounds like the worst is behind you! I assume your small intestines would remain unaffected and whatever else might bug you in the future would be mild compared to what you have been through.

I've had my issues for 2 years now and I'm glad my symptoms have only gotten better. It's too mild for medication or even for an official diagnosis. Having it for 2 years has helped me deal with it mentally a lot more than when it first started. Hope it keeps getting better. Some of me wonders if it's actually just an infection that won't go away.

Capercrohnj

03-08-17, 02:22

Sounds like the worst is behind you! I assume your small intestines would remain unaffected and whatever else might bug you in the future would be mild compared to what you have been through.

I've had my issues for 2 years now and I'm glad my symptoms have only gotten better. It's too mild for medication or even for an official diagnosis. Having it for 2 years has helped me deal with it mentally a lot more than when it first started. Hope it keeps getting better. Some of me wonders if it's actually just an infection that won't go away.

Definitely the worst is behind me! The bad thing with Crohn's is that it has a tendency to move somewhere else after the affected part is removed ( that is why they don't like doin colectomies or proctocolectomy like i had as there is only so much they can take but rather just do resections). I have to go back on a biologic once i am completely healed to hopefully prevent this from happening (I am 12 weeks post op and still have an open wound).

Elizabeth Fry

03-08-17, 09:47

Sorry that you have had such a bad time Capercrohnj. Again I feel a bit better reading both your posts because my symptoms have been virtually the same for years but a bit worse recently and certainly after the campylobacter episode. (I have been stressed too because my husband died just before Christmas.) The ibs has been terrible and then a couple of visible bloods in stool but I do have haemorrhoids. Sorry about that! I also have high blood pressure, GERD, hiatus hernia, gastritis as well as what's happening now. For the gastritis I'm on 40mgs of Omeprazole twice a day and Gaviscon Advance x4 times a day and I wonder if they could be affecting my gut? Have either of you got any thoughts about that?

I just have to believe it will all be ok.

Thank you both.

Catoonipop

04-10-17, 11:41

Hello. I'm new to the forum so please excuse me if I'm posting in wrong place.
I'm back at the GP tomorrow. Been having horrendous stomach and back pain, loose BM's. My calprotectin has come back at 1606 ug. I've immediately googled this and have seen at all the worst possible scenarios. Getting very anxious about what could be happening down there. Does anyone have any advice? Thanks.