Calprotectin level 120 in 15 yr old teenager
Posted , 6 users are following.
Hi, I am new here but my 15 year old daughter has received stool test stating 120 calprotectin level. She is already under a gastro consultant on waiting list for endoscopy and colonoscopy. She has gone from 10 stone 7 to 8 stone 7 in 2 months and has had vomitting, stomach pains, lack of appetite and general feeling of being unwell. Always tired, rashes and intermittent frequency of bowels. Does this level indicate something significantly wrong? Do you think she will be seen sooner now that these results are back? Or is 120 result borderline? Any advice for a worried mum greatly appreciated x
0 likes, 8 replies
UKMattG lucie12086
Posted
Hi, sorry to hear your daughter is going through a rough time of it. Must be very stressful for all.
A calprotectin of under 50 is considered normal according to NHS guidelines. 120 is something like "slightly or moderately raised". It's not a massive number but it does clearly indicate inflammation markers which can only be caused by IBD or infection, or in rare cases I believe "non specific inflammation". It's important to note the calprotecrin test is just a test for inflammation and not specific for Crohns, colitis or anything else. Next step really should be a colonoscopy to see first hand and to collect biopsy samples.
I'm not an expert but have learnt a lot from my own experiences. For more info have a look for the NICE calprotectin guide.
As for will it get your daughter seen sooner, I'd say based on the weight loss alone - this should already be happening.
Good luck
lucie12086 UKMattG
Posted
Thats really helpful thank you. So if it's moderately raised it could be an infection Amd not necessarily something more sinister although this has been going on for nearly a year (dismissed by Dr as anxiety because she kept vomitting). Fingers crossed seen soon if not just to make her comfortable. Thank you
UKMattG lucie12086
Posted
Hmmm, a year long infection sounds unlikely. IBD is tough to diagnose and it really takes perserverwnce. Keep questioning and pushing for results, it's often the only way.
craig84609 lucie12086
Posted
I had similar issues when I was young and I would get better. As I got older these bouts would get worse and last longer. I was diagnosed with Ulcerative colitis. I really think I have Crohn's disease, but they have not yet found inflammation any other place other than my colon. I had the stool test and mine came back very low, under 30, but I had a scope done of my colon and my doctor said that my disease was severe, so the stool test isn't always very accurate. At least in my case. I never come back high on any test for inflammation and yet I have severe bowel disease. She may have Crohn's, so the sooner they figure that out the better. She could be put on steroids and that could fix it in 3 to 5 days, they work fast. I wish you luck and hope she feels better soon. IBD is a terrible disease, but it can be controlled.
lucie12086 craig84609
Posted
Thank you for sharing that. She had inflammation in a previous blood test then next blood test was fine. Then at a and e for stomach pain and blood and protein found in urine. So she's had so many different ailments it's been hard to know whether separate or linked etc but this stool test is the first proper evidence we have of something amiss in her tummy causing the vomitting. Rash, fever, tiredness, cramps etc all shrugged off but thankfully seem to be on the right road to a diagnosis now
craig84609 lucie12086
Posted
Wow, it really sounds to me like IBD. If she is getting large amounts of protein in her urine that can be also a sign of IBD. I get kidney stones a lot because of my IBD. IBD isn't so bad, but it can be hard to cope with at times. I am on a new medication for mine and having all kinds of bad side effects from the medication. Unfortunately they don't have any that are really safe. If she needs to go on some meds for IBD, then be careful of the biologic type. Humera and remicade can cause cancer in younger patients. If you do need one then look into Entyvio, it seems safer and that is what I am getting now, but there are still side effects.
lucie12086 craig84609
Posted
That's extremely helpful thank you. She had blood and protein in urine for months but nobody gave her antibiotics which I thought odd. Was referred for kidney ultrasound which was all fine. Didn't realise could be related
clare75932 lucie12086
Posted
hi,
I know this post is 4 years old but I was just wondering did your daughter manage to get a diagnosis? my son has been going through similar for the past 6 years - non blanching rashes, fevers, joint and limb pains, tiredness, stomach aches, bouts of diarrhoea, vomiting, headaches, low neutrophils causing infections, moth ulcers, soar throats, on and off anemia, vitamin D deficiency, folate deficiency, he has has a lot of tests but has never been diagnosed with anything, we have just been told it might be an autoimmune disease but they can not do anything!
After seeing a mew GP he done some tests as he said it could be crohns disease, his stool tests have come back "borderline" high calprotectin level over 100, he has to do the test agaon next week.
any information/personal experiences would be appreciated,
Thank you 😃