Anyone with Calprotectin level higher that 6000?

[BelindaSteyn]

My son (14) has been diagnosed with Crohn's 5 years ago. His initial Calprotectin levels were between 2000 and 3000. After a year and a half of Prednisone, Salazopyrin and Entocort his levels shot up to over 6000 (literally off the chart). The doctor ordered another test assuming that it was a false positive but the result was the same. My son started Humira and his levels was the lowest at 2500 before it shot up to >6000 again. Then he was switched over to Stelara and his levels came down to about 5000 after 6 months. It went back to >6000 again and he is going to start Entyvio as soon as we get approval from the insurance. What I actually want to know is if there is anyone who had Calprotectin levels this high. My son has been to 3 doctors - none of them can explain this ridiculous high result. His latest test is the 5th test with a number >6000 - it cannot be all false positives. I would also like to mention that I do use a sterile container and I take the stool sample immediately to the labs.

[Valbaty54]

I've had levels of 4,000 - not quite as high but still off the chart. I have Ulcerative colitis and after the usual initial treatments such as Pred, tried Humira (didn't work for me) followed by infliximab (remicade). My results were still high until we added azathioprine in combination and that did the trick. Vedo (entyvio) is also widely used in the UK so hope that works for your son.

[BelindaSteyn in reply to Valbaty54]

Thank you. My hope is all on Entyvio now

[SuHMK]

I just don't understand the calprotectin levels at all. Despite feeling well and active my daughters are consistently high. Quite bizarre

[Pte82]

Belinda, has your son's diet been modified for his Crohn's? The last link raises the subject of thiamine deficiency. This deficiency impacts the brain and the vagus nerve leading to many IBS conditions. The deficiency may be a result of diarrhea caused magnesium loss as magnesium is needed for thiamine activation. Please search on "IBS thiamine" for more info. Also search on "Tocotrienols have potent antifibrogenic effects in human intestinal fibroblasts" Always consult the health care provider before using any supplement.

crohnsandcolitishub.com.au/...

ncbi.nlm.nih.gov/pmc/articl...

chroniclesinhealth.com/inde...

stuttersense.blogspot.com/2...

[RuthRob101]

Hi. My daughter was diagnosed with Crohn’s 18 months ago aged 15. Her calpro was also off the chart at over 6000. She went on an exclusive liquid diet of Modulen IBD milk powder for a few weeks, followed by a careful diet plan. Azathioprine was started and stopped as within days it gave her pancreatitis. She was due to start infliximab but then covid hit so instead we were sent home with a few weeks of antibiotics coupled with the modulen . Her calpro went down to about 4000 and then we started Pentasa granules. We were told this was not ideal but I was not happy with the suggested options of infliximab or humira coupled with methotrexate. Slowly but surely her calpro has gone down to 14!! Her doctors are amazed and can’t quite believe it. Have you tried the modulen diet to see if this helps. It allows the bowels to heal before slowly reintroducing foods. And we are also very happy with the Pentasa, no side effects except maybe a dry mouth. All the best.

[BelindaSteyn in reply to RuthRob101]

Thank you. This is very helpful

[Atrebor]

I have just got back my calprotectin results which is over 9000! My biopsy did not confirm Chron and I need to see a specialist in 10 days to give me a diagnosis. I was hospitalized twice in a month and felt awful. I am on predisona and pentasa and still got 9000 calprotectin!. I hope it was just a very bad case of food poison but doctors suspect I might have Chron. I was totally fine before getting sick a month ago. I hope your son may feel better soon somehow....

[Worriednanxious in reply to Atrebor]

Hey I know this is 4 months ago but hope you answer. Did you end up getting a colonoscopy and finding out what caused your issues?

[BelindaSteyn in reply to Worriednanxious]

My son is still in a flare. He was on Entyvio for 6 months - did nothing. He started Stelare again mid Dec. I am waiting for his latest Calprotectin results - should be this week. I do not know what to expect.

[Pm1100]

Hi my level was over 6000 I was diagnosed with Ulcerative colitis,