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Crohn's Disease Forum » Tests for IBD » Raised CALPROTECTIN NO DIAGNOSIS


01-13-2017, 12:50 PM   #1
izzy26
 
Join Date: Jul 2015
Location: West sussex, United Kingdom
Raised CALPROTECTIN NO DIAGNOSIS

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
01-13-2017, 01:06 PM   #2
Maya142
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Hi and welcome!
Please check out the parent's forum - we have lots of parents who have been in your situation and lots of info there.

I agree with you that something is not right if she is not gaining much weight and a high Fecal Calprotectin. Typically Fecal Calprotectin is only raised with inflammation or infection. If infections have been ruled out, and NSAIDs aren't being used, then it's pretty likely that it's inflammation.

There are MANY kids who do not have the "typical" symptoms of IBD. In fact, we sometimes say that there isn't really a "typical." My daughter had abdominal pain, weight loss and some constipation and a scope showed definite Crohn's. She had NO bleeding or diarrhea.

Some kids are completely asymptomatic and still have Crohn's. Others show slowed growth or slowed weight gain but have no gut symptoms at all. It REALLY varies.

All the things you mention - blood in stool, tummy pain and constipation/diarrhea can be symptoms of IBD. I'm not sure why the consultant is not doing more testing.

Has she had any other testing? Scopes? A pillcam or an MRE? Scopes with biopsies are the
gold standard for diagnosing IBD.

Is it possible you can get a second opinion?

I will tag some other parents so you can hear from them:
Clash, my little penguin, crohnsinct, pdx, Farmwife, Pilgrim Jmrogers4
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Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
01-13-2017, 01:14 PM   #3
izzy26
 
Join Date: Jul 2015
Location: West sussex, United Kingdom
Bloods tested for a year and a half show elevated CRP twice. No bacteria, negative for Cealic and cystic fribrosis due to no pancreatic enzymes. She has movical as and when required and no further tests other than stool and bloods. Just so frustrated with this lady, she doesn't understand when she has tummy pain of a night how the lack of sleep disrupts her nursery. She is also delayed in speech, toieting and self care skills. The consultant is so focused on her putting on a small amount of weight although her weight stayed stagnant for over a year
01-13-2017, 01:32 PM   #4
ronroush7
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The blood would lean me to thinking IBD but I am not sure. I wish you all the best.
01-13-2017, 01:57 PM   #5
izzy26
 
Join Date: Jul 2015
Location: West sussex, United Kingdom
Thanks for your comments. I have searched the net for any material relating to elevated calprotectin and no correlation to IBD and I am struggling to find any alternatives other than polyps. Is there anything else other than IBD that can cause raised calprotectin without the intake of ibuprofen and no infection....thanks xx
01-13-2017, 02:14 PM   #6
ronroush7
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I think so but not sure what.
01-13-2017, 02:38 PM   #7
Maya142
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I can't think of anything else besides infections and NSAIDs. I would either push for more testing or a second opinion if possible.
01-13-2017, 07:28 PM   #8
my little penguin
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Hugs
Can you get referred to the great ormond street in London ?
They have seen little kids with ibd there
Fecal caloprotectin being raised suggests inflammation but not the type
It can be ibd
Infection
NSAID
Eosinophilic disorders (including eosinophilic colitis )
Have they ruled out hiersprung ?

Have you track her stool using a Bristol stool chart ?
Ds was going every day or every other day as a toddler and preschooler
But was still only a Bristol 1 on the chart so constioayed
Ds was dx at age 7 with Crohns
The investigation started due to rectal prolapse which started at age 7

He has constipation with his Crohns so takes miralax (movicol) daily
Have you asked the doc about een (formula only no fiod ) ?
For some this helps but doesn't give a dx though
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01-13-2017, 11:38 PM   #9
pdx
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So sorry that you're having so much trouble getting your consultant to consider and test for IBD. It is common for kids with IBD to have non-typical presentations, although it seems like your daughter does have many classic symptoms, along with the raised fecal calprotectin results, so I'm not really sure what your doctor is thinking.

I agree that a second opinion would be a good thing. Good luck--I hope you can find someone willing to do more testing.
__________________
Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
02-11-2017, 07:23 AM   #10
Pilgrim
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Some children don't have elevated bloodwork. Our daughter was diagnosed at 3 and had a stool every other day that was mush. Sometimes blood. Her labs looked ok. She had good weight. But she wasn't right, so I persisted. It took 7 months to get scopes. The GI was apologetic. Keep persisting.
05-08-2017, 01:55 PM   #11
Hollaka79
 
Join Date: May 2017
Location: Copthorne, United Kingdom
I'm a now old Crohns patient. I got sick when I was 8. Went from 5 1/2 stone at 8 to 2 1/2 stone at 11. First Drs said it was growing pains. Then they said I was anorexic. No one listened to me or my parents about my tummy pain & I was admitted as a anorexic patient on a mental health ward. Two weeks of my parents & me pleading with the Drs & they finally started tests. Few days later I was sent to Kings college London & finally an amazing paediatric gastroenterologist did more tests & confirmed Crohn's disease. Sadly by then I had gained multiple fistulas, strictures & ultimately a blockage so had a resection & strictioplast few years later. I'm now almost 40 & fighting the same battle with a different gastro as am so poorly again but only abnormal test is FC of 600 & swelling on ct & x Ray in small bowel. Everything else shows as normal when I can assure you I'm far from "normal" right now lol...
so my long point being. Trust your instincts. Drs aren't always right. I'm a mummy of two now & I always go with my gut (excuse the pun). So if necessary ask to see a different gastr. Like someone above said Great Ormond St is a great kids hospital or Kings college where I went. Don't give up, Mummy's are always right xxxxx
05-09-2017, 06:14 AM   #12
izzy26
 
Join Date: Jul 2015
Location: West sussex, United Kingdom
Thanks for your replies.

We have moved further forward with tests. She had colonscopy/endscopy and found inflammation of the esophagus, they couldn't do the rest of the bowel due to compacted stool. We are due to have a scan in about two weeks. And again no explanation why she has inflammation of the esophagus which came as a shock
05-09-2017, 06:27 AM   #13
izzy26
 
Join Date: Jul 2015
Location: West sussex, United Kingdom
Hugs
Can you get referred to the great ormond street in London ?
They have seen little kids with ibd there
Fecal caloprotectin being raised suggests inflammation but not the type
It can be ibd
Infection
NSAID
Eosinophilic disorders (including eosinophilic colitis )
Have they ruled out hiersprung ?

Have you track her stool using a Bristol stool chart ?
Ds was going every day or every other day as a toddler and preschooler
But was still only a Bristol 1 on the chart so constioayed
Ds was dx at age 7 with Crohns
The investigation started due to rectal prolapse which started at age 7

He has constipation with his Crohns so takes miralax (movicol) daily
Have you asked the doc about een (formula only no fiod ) ?
For some this helps but doesn't give a dx though
Very interesting and helpful reply. If i could move her to great ormond street i would. Her constipation is similar to your little one, she too is very constipated mainly 1 on bristol stool chart and even the size of a coffee granule. I find movical is not doing that much of a good job as it used to.
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