Calprotectin Confusion! Can the tests be too sensitive?

[Lotus_flower1]

Hi all, please shed some light on Calprotectin results..... as they are confusing me a lot!

My son, now 10 years old, was diagnosed last June (2021) with Crohn’s with very minimal symptoms but Calprotectin at 1500. I took the natural approach with diet and meditation and results were 1150, 655, 566 over 4 months.

My son has been symptom free since diagnosis for IBD inc no hidden symptoms such as skin issues, eczema, hair loss, weight issues etc. CRP has always been normal range even at diagnosis? We were being forced biologicals and I refused due to the trends in results and him growing and putting on weight. I lost trust with the hospital totally as I was dismissed and contradictions in advice. We found with a functional doctor that he has SIBO (bacteria in small intestines) which was dismissed by the hospital. There is no concerns with him what so ever and living a normal life with no restrictions.

Did private results 6 months later which came back at 30 and 26? Hospital results were 1300 and 633 at the same time? Did a Genova Test with a functional doctor - 233?

I distanced myself from the hospital because they kept pushing meds and their treatment plans which were causing psychological issues with my son with constant checking, poking and prodding.

Did a Nordic Lab private test with functional doctor recently and it’s come back as 1062? No changes in symptoms at a healthy weight.

I don’t understand as there is no issues. He is growing and looking healthy and has no sickness days from school ever and no illness, no virus etc since diagnosis. Even got Covid and had no symptoms!

It’s just the confusion with the Calprotectin??

If it wasn’t for this last result - we have no concerns. Anybody experienced anything similar? Can a child be putting on weight if there was active inflammation? I was told no?

Are these Calprotectin tests too sensitive and misleading?

[SuzyQ67]

Calprotectin test is not a 100% indicator, it's used as a marker. I've seen people with them extremely high & have no symptoms, however, someone much lower have symptoms. In other words, don't rely on this test to determine if inflammation is present. I belong to another forum, a mom had a 12 yr old daughter, dx'd with crohns & she went the diet route. When her repeat scope was done a year later, she had severe inflammation with friability, & yet she had no symptoms. After seeing the pics & comparisons from the previous scope her daughter was put on medication. Untreated inflammation causes scarring in the intestines which can lead to strictures. Never underestimate crohns, it can be sneaky & silent at the same time. Take care.

[Lotus_flower1 in reply to SuzyQ67]

Appreciate your response. Very helpful 🙏🏼

[Allie2022]

Calprotectin could be high because of infection or allergy as well.. Only colonoscopy/endoscopy can tell if your child has IBD … maybe MRI or Intestine Ultrasound

[Lotus_flower1]

Thank you for your response.

What tests can be done for infections and allergies? Colonoscopy and Endoscopy and MRI have been done and saw mild inflammation. Can you have mild inflammation due to infections or allergies and can it cause long term damage? Due to no symptoms, full of energy and growth is very good - it’s all very confusing?

[Hidden]

Hi, I realise this is a little late, but I am new and just saw your post here. I am a Biomedical Scientist for the NHS, so I felt compelled to help you out here. The Calprotectin test, as someone previously mentioned, is used to determine if there is inflammation in the bowel. It measures an inflammatory marker specific to cells in the intestine. This is usually due to IBD, however, can also be due to infection or allergy, or more rarely a pancreatic or bile duct disease. To rule these causes out you can ask your GP to do culture and sensitivity testing on a stool sample including ova, cysts and parasites and C.diff screening (only done if the stool is diarrhoeal in most labs) as well as an allergy panel and ultrasound if there was any indication of pancreatic/gall bladder dysfunction (unlikely). The Calprotectin test is more than 90% specific and sensitive regardless of what assay is used in an NHS laboratory. Most often these laboratories offer it under UKAS accreditation scope, meaning this is a very reliable result.

If your child already has a firm IBD diagnosis and had no other symptoms to indicate infection or allergy, it's most likely raised due to the Crohn's. Unfortunately it is a silent disease and often children can be asymptomatic and more resilient than adults when unwell. It may be that they are heading for a flare up. Inflammation does not necessarily prevent you gaining weight, what does this is nutrient malabsorption as a result of the inflammatory processes damaging cells in the gut. The level and location of inflammation can influence this, so your child can still gain healthy weight even if they have a flare.

I hope this is helpful to you!

[Lotus_flower1]

This reply is so helpful, clear and concise. Thank you so much for taking time to reply and sharing your knowledge. I will definitely consult the GP on those extra tests. You are the first person to actually shed some light on other possibilities on the Calprotectin results other than my own research.

Are you able to explain why there is such a variation in results between NHS and private? The same stool sample was used for both tests - NHS was 633 and Private was 30?

I contacted the private lab and I was reassured all quality standards adher to the UKAS accreditation and the results are totally reliable. I got no response from NHS?

If there was a small difference, i wouldn’t question it but these results are too far apart?

Due to no symptoms, CRP being in normal range and growth is amazing - it has made me question everything. I’ve also had a terrible experience with the GI consultant which I lost total trust.