Raised calprotectin no diagnosis

[izzy26]

I am at my wits end with my daughters consultant. My daughter is 4 years old and weighs 26lb. She has always been slow to gain weight and also had zero enzyme in her pancreas which is now slowly improving.

What is irritating the hell out of me is my daughter has consistently tested over 600 for calprotectin for over a year and a half. She has mainly constipation and bouts of diarrhoea, two episodes of blood in stool, and tummy pain mainly at night.

This consultant says it's highly unlikely she has IBD because she doesn't show the classic signs and is gaining weight albeit slowly. She says other things can cause raised calprotectin, my daughter has never had ibuprofen or any anti biotica for well over two years.... everything I have researched points towards IBD but this flipping consultant says not a chance. I've argued with her today after a year and a half of repeat bloods and stools to finally get endo in sight. HELP

 

[ronroush7]

Everyone is different with the symptoms. The blood in the stool would make me think IBD but I don't know for sure.

 

[ErnieElse]

In the first instance I would speak honestly and openly with your GP about your concerns. The consultant needs to have a very good explanation as to what the problem might be before dismissing IBD so determinedly. Everything seems to point towards bowel inflammation so what else could it be other than IBD ?

 

[Scipio]

Has she been tested for celiac?

 

[izzy26]

hi, thanks for you questions. When I've taken her to GP regarding tummy pain they are reluctant to do anything as she is already referred to all the specialist.

She's tested negative for celiac disease. Her consultant reels off clinical things that can cause elevated calprotectin. I can't believe she is so dismissive. We are doing one more stool sample and if this one comes back elevated she will do an endo. I feel so frustrated because without a diagnosis other specialist won't continue with other treatments my daughter needs in terms of dietician and continence issues

 

[ronroush7]

Maybe you need a second opinion.

 

[Lady Organic]

some patients can have minimal symptoms, especially if disease is located only in a short part of the intestine or if disease is very mild. I tested 174 and 324 calprotectine when my disease was mild and located in my rectum only...
You got endoscopy for your daughter finally?

 

[ErnieElse]

It may be different for children but in my case I had one raised CRP test followed by two raised Calprotectin tests (the second one higher than the first, but both only in the 200 range) and it was straight to Endoscopy for me with no messing around. I am in Yorkshire.

I am very new to all this myself but I am starting to get the sense that the doctors know precisely the same amount as the patients about IBD. It seems as much a mystery to them as it is to us, so don't hesitate to speak your mind.

Good luck with everything.