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Anyone have very high calprotein level but very mild symptoms?

I have been diagnosed with Crohn’s disease. The funny thing here is that my symptom is generally very mild. I’m taking two pills of mezavant every day. I do have flareup, but it usually comes with increase of heartbeat and feel of fatigue for several hours, which followed by one day of increase of the number of bowl movement (typically I have one or two; with flareup, I have 3 to 4). The stool usually looks normal. But the problem is that my calprotein level is very high, the most recent testing is 6500. The doctor is considering doing a CT on My small intestine. But I’m wondering if anyone have similar situation like me? When I search online, people with this high level of calprotein usually have very severe symptoms.

  1. you sound just like me when I was first diagnosed! I was essentially asymptomatic when I was first diagnosed, never having stomach issues or pain. My Crohn's was diagnosed accidentally after I went to the ER with kidney stone pain.
    It wasn't until 2 years later that I experienced more severe flares which required a biologic. I am glad that you are on medication, as I think my refusal for medication when I wasn't symptomatic was a mistake, but your disease will most likely continue to be treated based on your symptoms rather than calprotectin levels. You are one of the lucky ones!

    --Julie (Team Member)

    1. Do you have calprotectin test at that time? Thanks

      1. thank you very much

      2. You are so welcome. -Elizabeth (team member)

    2. By the way, I forget to mention that colonoscopy does not show much problem. My doctor say this is a very mild Crohn. But my cal protectin is vey high.

      1. Hi . If you are interested in getting some answers sooner, I know some community members have had luck getting an earlier appointment by asking the doctor's office to be put on a cancellation list. You'd be surprised how often something opens up. Best, Richard (Team Member)

      2. thanks. I will check with my doctor’s office

    3. Hello, , I'm so glad Julie was able to share her experience with you. As she mentions, doctors sometimes treat based on symptoms (although I know some also focus on the numbers). Hopefully anyone else with this experience can chime in here.

      It sounds like your doctor might want to do some more investigating (the CT scan), how are you feeling about that?

      Please know that our community is here for you, and don't hesitate to reach out any time. Wishing you a gentle evening. -- Warmly, Christine (Team Member)

      1. thank you very much. my GI has not officially asked me to do that yet. Will see her in July. I think I'm a fine with doing CT. The only concern I have is that I may need to drink a lot of fluid before doing it. I'm a relatively small size person, and drinking fluid is always a problem for me when I preparing for Colonscopy: I'm using Pico Salac. So, the taste of the fluid is not a problem, the problem is the volume of fluid that is required. I think at best I can do only around 1 L an hour. Not sure what is the experience of people who have did this before. I have not done this ever.

      2. , I know that the volume of liquid can be problematic for a lot of people for colonoscopies. I'm not familiar with how much liquid might need to be ingested for a CT scan, but hopefully any of our community members who've had one can let you know about their experience. Please don't hesitate to reach out to your doctor earlier if you have questions or concerns about any upcoming procedures, and hopefully you can get some answers this coming July when you see her again. And, of course, this community is here for you also, so please reach out here anytime. -- Warmly, Christine (Team Member)

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