• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Elevated calprotectin -your thoughts?

Haven't heard from the doctor yet. Our son has a follow up EGD coming up to see how he is responding to high dose PPIs for the severe esophageal damage from GERD. Dr. had us do a follow up calprotectin since we still don't know if the ulcers and erosions in small intestine are early Crohn's. This is the first time calprotectin is above Borderline. It was borderline before starting PPIs. It's 149 now, which I know in Crohns world isn't considered that high, but it's high for him. PPIs are known to raise calprotectin, but not as much as his has gone up, even for those on a high dose of PPIs.

Periodic small amounts of blood in stools and some digestion issues stopped thanks to entocort/budesonine and appetite improved, but some issues remain. He is gaining some weight with the addition of nutrition shakes to his normal diet. Lately, he probably teeters between being underweight and being bottom of normal teen BMI range, but it's an effort to keep him gaining. He is done with his course of steroids (finished a few weeks ago) and is just on Bentyl (IBS med) and the PPI. Your thoughts? Any suggestions for questions I should ask?

I am thinking the logical recommendation will be to see if we can decrease his PPI once biopsies come back or even go off them (one doctor said never!) and then re-test the calprotectin then, rather than starting on Crohns meds. However, if this is Crohn's, that might not be ideal/safe. I am hoping the doctor isn't that concerned and if she were, she would have called, but I know they are understaffed and over-worked so she may be very busy.
 
Last edited:

my little penguin

Moderator
Staff member
149 is still borderline
Above 120 is borderline and requires a simple retest
Fecal cal can vary by time of day within a day
And by how you store it (room temp ,refrigerator,freeze ) or how the lab stores it
Not really something to worry about
Especially given the ppi
 
149 is still borderline
Above 120 is borderline and requires a simple retest
Fecal cal can vary by time of day within a day
And by how you store it (room temp ,refrigerator,freeze ) or how the lab stores it
Not really something to worry about
Especially given the ppi
Thank you. This is reassuring. The lab classifies above 120 as high, but I know ranges vary at different places.
 

crohnsinct

Well-known member
Generally labs will classify above 120 as elevated with a suggestion to repeat the test in a number of weeks.

Given the PPI use, I would think the suggestion will be to sit tight and retest.

I know it’s hard to wait and watch but you are doing a great job!
 

Maya142

Moderator
Staff member
It's not high enough that I would immediately think Crohn's - my guess is also that you'll have to re-test and wait. But if you do know he has severe GERD, then why stop the PPIs? Decreasing them makes sense but with severe damage from GERD, I'd be hesitant to do more without a scope once on a decreased dose for a while.
 
It's not high enough that I would immediately think Crohn's - my guess is also that you'll have to re-test and wait. But if you do know he has severe GERD, then why stop the PPIs? Decreasing them makes sense but with severe damage from GERD, I'd be hesitant to do more without a scope once on a decreased dose for a while.
It's a good question. There have been several studies, one recently I think in a journal called Gut, which suggest PPIs significantly increase chances of stomach cancer (by something like 45%). So basically once we get the results of EGD and biopsies we will weigh the risks of stomach cancer against risks of esophageal cancer with the doctor. (Just typing that gives me indigestion!) Also, there is the risk of osteoperosis and other issues with the PPIs long term. We will see what our doctor says and get a second opinion. Regardless, he will have follow up EGDs because he had silent reflux so there was no way to know how bad the problem had become until it was really bad. One doctor even called it Barrett's esophagus, which is pre-cancerous, but the second one said findings were too hard to read at that area. I must say he has been a champ with accepting he can't have chocolate. Luckily, he doesn't drink coffee or alcohol and he doesn't smoke. He's willing to sleep with multiple pillows and stop eating several hours before bed so that all should help. I do wonder if the small intestine ulcers and erosions and the reflux are related to some overall issue with stomach acid and if there is a way to correct it without PPIs for the rest of his life.

I think you all are right about re-testing. We see the doctor soon for EGD, but the fact she didn't contact us about the result makes me think she isn't concerned at this point.

It is a miracle to see him gaining weight again. He had another recent gain this weekend and it makes me so happy to see him looking healthier and not so emaciated. He would not be able to do this without the nutrition shakes. I do think the ulcers were causing problems with appetite and digestion.
 
Last edited:
Top