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Toddler calprotectin is 323 , ibd?

24 replies

Jadeyyy · 24/02/2025 18:11

My 3.5 year old has had soft stools ever since starting nursery in January it started the day he started nursery when he came home so assumed was a bug!
has happened on and off ever since, some poo’s look normal, but one the other day had mucus and blood,( he used to be constipated and sometimes have a drop of blood then ) but we got another test done and the calprotectin is 323
does anyone know if this is scary high? I read somewhere levels can be higher in toddlers, his dad has crohns so I’m very worried
thank you in advance

OP posts:
Are your children’s vaccines up to date?
Unseenentity · 24/02/2025 19:00

Many labs won't test calprotectin if the child is aged under 4 because the test results are very variable. I would check in with whoever did the test and see what they think, they may need to ask someone for advice and retest after a bit of an interval.

Generally in inflammatory bowel disease the levels are very high, >600 and/or there are other features of inflammation such as high temperatures, looking unwell more generally.

Jadeyyy · 24/02/2025 19:28

Unseenentity · 24/02/2025 19:00

Many labs won't test calprotectin if the child is aged under 4 because the test results are very variable. I would check in with whoever did the test and see what they think, they may need to ask someone for advice and retest after a bit of an interval.

Generally in inflammatory bowel disease the levels are very high, >600 and/or there are other features of inflammation such as high temperatures, looking unwell more generally.

Thank you very much for your reply, I am going to phone the gp tomorrow to ask if another doctor can speak with me as the doctor is away this week, thank you

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Donimo · 24/02/2025 21:41

My 2 year olds first calprotectin was 212 (not as high as your ds). GP arranged the test due to constant loose stools and frequent temperatures. But then her paediatrician asked for it to be retested along with a stool culture as calprotectin isn't reliable in toddlers. Second test and culture were normal. Was told often get abnormal results in toddlers due to harbouring some mild stomach bugs etc.

Jadeyyy · 25/02/2025 21:06

Donimo · 24/02/2025 21:41

My 2 year olds first calprotectin was 212 (not as high as your ds). GP arranged the test due to constant loose stools and frequent temperatures. But then her paediatrician asked for it to be retested along with a stool culture as calprotectin isn't reliable in toddlers. Second test and culture were normal. Was told often get abnormal results in toddlers due to harbouring some mild stomach bugs etc.

Thank you for taking the time to reply , that’s great your toddlers was normal in the end :) I hadn’t heard of a stool culture I will ask about that, thank you

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Lbet · 26/02/2025 18:25

On diagnosis of crohns disease my daughters calprotectin was 1800 So your child's reading is very low.

Jadeyyy · 28/02/2025 21:52

Lbet · 26/02/2025 18:25

On diagnosis of crohns disease my daughters calprotectin was 1800 So your child's reading is very low.

Thank you, sorry to hear that your daughters reading was high, I hope she is doing well now,
the doctor called and said they have considered it still high for his age and they are referring us to a gastro doctor now

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Lbet · 28/02/2025 22:11

Hi, getting reffered to the gastro dept is the best thing really. That is what happened in my daughter’s case but she was really poorly on diagnosis.

That was over 7 years ago and treatment has done wonders for her. If anything at all having a chronic illness has only encouraged her to live a great life.

Please let us know how you get on. Xx

CerealPosterHere · 28/02/2025 22:17

Could coeliac disease be another possibility? Dd had raised calprotectin levels when diagnosed with coeliac.

Jadeyyy · 28/02/2025 23:03

Lbet · 28/02/2025 22:11

Hi, getting reffered to the gastro dept is the best thing really. That is what happened in my daughter’s case but she was really poorly on diagnosis.

That was over 7 years ago and treatment has done wonders for her. If anything at all having a chronic illness has only encouraged her to live a great life.

Please let us know how you get on. Xx

Thank you ❤️ aw I’m so glad she is doing well now that is great to hear, I will definitely update, thank you xx

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Jadeyyy · 28/02/2025 23:08

CerealPosterHere · 28/02/2025 22:17

Could coeliac disease be another possibility? Dd had raised calprotectin levels when diagnosed with coeliac.

It could be I’m really hoping it is something like this instead, I funnily enough started a gluten free diet last year and feel so much better for it so I was thinking it could be, he did also have a rare food allergy to milk called FPIES! Which he outgrew at 2, but we were hoping maybe he was still allergic and it was that?!
I will update once seen gastro , thank you all for your replies ❤️

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farmlife2 · 28/02/2025 23:13

Under 50 is 'normal' so it's slightly raised. But that's not super high. In the thousands is high. It could be transient, so I'd retest in a few weeks. You can have normal results and still have IBD, so it's just an indicator, not conclusive.

Lbet · 01/03/2025 05:11

farmlife2 · 28/02/2025 23:13

Under 50 is 'normal' so it's slightly raised. But that's not super high. In the thousands is high. It could be transient, so I'd retest in a few weeks. You can have normal results and still have IBD, so it's just an indicator, not conclusive.

This is very true our consultant told us at the beginning that 50 or under is normal. My daughters reading has always been 30 or under once her medication kept it under control. In fact apparently 30 is better than anyone who doesn’t have IBD.

farmlife2 · 01/03/2025 08:45

Lbet · 01/03/2025 05:11

This is very true our consultant told us at the beginning that 50 or under is normal. My daughters reading has always been 30 or under once her medication kept it under control. In fact apparently 30 is better than anyone who doesn’t have IBD.

Family member of mine has IBD, takes no medication and is at 30.

Lbet · 01/03/2025 10:34

farmlife2 · 01/03/2025 08:45

Family member of mine has IBD, takes no medication and is at 30.

That’s brilliant hope my daughters gets to that stage at some point.

MumofCrohnie · 01/03/2025 11:01

My DD's calprotectin was over 2700 when she was in her last Crohn's flare, so whilst it's a bit high it's not so high that it's inevitably IBD.

Btw if you have started a gluten free diet, is your child having any gluten free alternatives, such as biscuits or bread? Just mentioning this because there is now pretty decent evidence that emulsifiers in processed foods are very bad in people genetically susceptible to IBD, and gluten free alternatives often have quite high levels of emulsifiers in in order to try to replicate the stickiness and rise of gluten.

academic.oup.com/ecco-jcc/article/19/Supplement_1/i262/7967009

Jadeyyy · 03/03/2025 21:28

Lbet · 28/02/2025 22:11

Hi, getting reffered to the gastro dept is the best thing really. That is what happened in my daughter’s case but she was really poorly on diagnosis.

That was over 7 years ago and treatment has done wonders for her. If anything at all having a chronic illness has only encouraged her to live a great life.

Please let us know how you get on. Xx

Thank you we are awaiting our referral now, so glad to hear your daughter is doing well on treatment ❤️ xx

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Jadeyyy · 03/03/2025 21:33

MumofCrohnie · 01/03/2025 11:01

My DD's calprotectin was over 2700 when she was in her last Crohn's flare, so whilst it's a bit high it's not so high that it's inevitably IBD.

Btw if you have started a gluten free diet, is your child having any gluten free alternatives, such as biscuits or bread? Just mentioning this because there is now pretty decent evidence that emulsifiers in processed foods are very bad in people genetically susceptible to IBD, and gluten free alternatives often have quite high levels of emulsifiers in in order to try to replicate the stickiness and rise of gluten.

academic.oup.com/ecco-jcc/article/19/Supplement_1/i262/7967009

oh gosh bless her that is high:(
i hope your daughter is doing better now, my son does occasionally have some of my gluten free bread and biscuits and things so I will look into that thank you ☺️ x

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Nunsyyy · 06/03/2025 13:43

I think your child is impacted and liquid stool pass around it called overflow diarrhoea. Faecal impaction causes high calprotectin

Jadeyyy · 06/03/2025 18:33

Nunsyyy · 06/03/2025 13:43

I think your child is impacted and liquid stool pass around it called overflow diarrhoea. Faecal impaction causes high calprotectin

Thank you, I didn’t know constipation could cause the high calprotectin, I really hope it’s this, when he was about a year I was given tons of movicol as he used stool hold, but every time I’d go i use it he would finally go and I actually never used it as I also worried about side effects and things, but now in hindsight I wish I had as I wonder if this constipation has caused some sort of tear too as he still stool holds now, he poo’s every two days roughly, last time I saw the doctor before all this started they weren’t worried by it and just said that it was ok , I hope if it was Ibd he wouldn’t be stil popping every 2 days and it would be more frequent ? But I’m no expert ! X

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Emeralds65 · 02/04/2025 14:44

Hi OP,
I am going through a similar journey with my son and wondered what was the outcome for you? Thanks

Jadeyyy · 02/04/2025 23:48

Emeralds65 · 02/04/2025 14:44

Hi OP,
I am going through a similar journey with my son and wondered what was the outcome for you? Thanks

Hi @Emeralds65 sorry to hear you are going through this too :( we are still waiting for our nhs appointment :(
my son used to have a dairy allergy which he had outgrown, but we decided in the meantime to give up dairy and see what happens, he still has the odd loose stool but it has improved a bit, but obviously we still need to do another inflammation test and wait for our gastro appointment, please keep me posted x

OP posts:
Emeralds65 · 03/04/2025 07:48

Hi
My son has dairy allergy as well but we were doing the milk ladder and it was going very well with no reactions and he could tolerate even having a pizza.
Then the weather changed and he kept getting ill like cold, fever, stomach bugs etc and then one day has blood in his stools which made the doctor do a fecal calprotectin which came up as 249.
we waited for my son to get rid of all his seasonal illnesses and then repeated fecal calprotectin which again came up as 244. Waiting for the gp to refer us now.
Thank you for your reply.

Lbet · 04/04/2025 06:56

Good luck to you both with your appointments.
I remember the time well when my daughter was having all sorts of symptoms and having to have all the tests fir a diagnosis.

Hope you both get some answers like we did. X

Nunsyyy · 04/04/2025 09:19

Don’t worry too much my son had same symptoms and tested negative for everything
he had prolonged norovirus and post infectious IBS due to norovirus which takes 6 months to subside

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