Hello, my 14 year old son has a Calprotectin level of 1422. He has an upper GI and lower GI/colonoscopy scheduled in 12 days. After googling this afternoon, I’m feeling quite concerned having seen high Calprotectin levels could be indicative of cancer (however rare in children and adolescents). But still, frightening for a parent (or anyone for that matter) to read!
Backstory- my son has been dealing with gastro problems for about a year. He had a stool sample done at onset, but it came back normal (not sure if Calprotectin was measured then). The dr believed his digestive issues could be due to lactose intolerance, so we took dairy out of his diet and saw some improvements (or so we thought). IBS also runs in the family, so the dr mentioned it could be that as well. However, his stomach has continued to be sensitive with frequent diarrhea, flatulence, and abdominal pain. We thought it was just the IBS. Around that same time he was exhausted most of the time. Blood test showed he had traces of mono and low iron, so started an iron supplement.
Fast forward to two weeks ago- my son noticed blood in his stool. A considerable amount, which was alarming. That’s when we decided it was time to see a pediactric gastroenterologist. The stool sample and blood tests both show elevated inflammatory markers. From what I’ve learned from research, it seems very possible he has IBD. His iron levels are very low, even though he’s been on an iron supplement. I’m happy to report the ball is rolling and we are hoping to get some answers. I just hate he’s having to deal with this.
In addition to the digestive issues, he’s been VEEY tired lately. He is underweight, always has been though. I’ve noticed lately how pale his skin looks. He’s been complaining of chills going through his body from time to time. Anyone else experience anything similar or have insight to share? This is scary!
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Memedawn11
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Hi, The symptoms you state are indicative of IBD, and I feel more so because of the chills you say he is getting. The good thing about the colonoscopy is that you will get the results immediately, if no biopsies are taken, and generally an idea of the problem if they do take biopsies. Good luck, stay safe, and let us know how he gets on.
Have they tested for Coeliac Disease.? My hubby was very poorly for a year and we were fobbed off with folic acid. We ended up paying privately, however, his BP dropped to 60/30 and was taken to hospital and placed in isolation for three weeks. When the biopsies eventually came back, before CD blood test, he was diagnosed with CD and lymphatic colitis. He lost 35kg and went to the toilet 30 times a day passing very dark blood during these visits. How I wish that I had known that just cutting gluten out of his diet would have saved all the pain and stress he went through.
Yes hubby has CD, he hasn’t passed any blood since he came out of hospital almost two years ago. The consultant put him on a very high dose steroid for eight weeks and with his GF diet he made a good recovery. He also has Lymphocytic Colitis which also affects his stomach at times but he was given emergency steroids for this. He has very good support from our local hospital with annual check ups.
My son, now nearly 18, was like this before he was diagnosed with IBDu and sclerosing cholangitis (a linked liver disease). His calprotectin was similar, lost weight, was pale, blood in stools, fatigued...we were beside ourselves as you are.
He now has a diagnosis of ulcerating colitis but it is not just his colon but beyond it.
He was diagnosed at 13 and it took a while to get his meds right. But now he is fit and well, the 2 conditions are managed.
Fingers crossed for you that you get a diagnosis soon and it is managed as well as possible. Xx
It’s a scary time when your child is going through something. So I’m sorry you’re having to deal with this.
Calprotectin is usually a good marker for people that have IBD.
He’s at least on the right route to finding out for sure now as well.
Honestly if it is some kind of IBD, be assured there are many meds available and a high chance that it can be controlled well, and your boy will lead a fulfilled life 💛 best of luck getting your answers xx
Hi
I am a mom of a kid with Ulcerative Colitis. My son is 15 years old and recently diagnosed. I understand your despair and fear for what is going on with your son. My son's onset of IBD was acute, severe and sudden. He had no prior symptoms before one morning waking up and going to the toilet seeing only blood. And from there we ended up in the emergency room not knowing what to think of it.
Most people diagnosed with any type of IBD will have ongoing symptoms for some time before they experience their first flare. It sounds to me like your son's symptoms are indicative of IBD as one other user states and the colonoscopy will give you the results.
However, you mention that there are 12 days to his scope. I think this may be too long time without any medical care and supervision if his stools continue to be bloody and becomes more frequent. IF this is IBD it is better to stop this first flare before it gets severe and for this he needs to be in the hospital.
Also, it seems to me that your son perhaps unknowingly have lost blood a little longer than he knows, since he is anemic and so very tired and pale. Now that he is seeing the blood the amounts are larger. So please do not hesitate to go to the emergency room if the frequency of bloody stools starts to accelerate. He can lose blood and fluids pretty quickly and will need to be in the hospital and get the care he needs.
I am really sad to be writing you like this with such a dire message. I hope for you and your son this is not IBD related and just a scare. As said my son was just recently diagnosed. He is better now, we are trying to find the right drug therapy for him. I have to tell myself and him that he will be fine but there is a lot of unknown and uncertain still.
Please feel free to contact me directly with any questions. I will be checking the replies.
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