Crohn's Disease Forum » Support Forum » Undiagnosed Club » VERY high calprotectin in 3 month old, otherwise healthy

12-15-2013, 10:43 AM   #1
Join Date: Dec 2013
VERY high calprotectin in 3 month old, otherwise healthy

I'm hoping someone can give me some much-needed insight about my 3-month old son. When he was first born, he had severe colic for several weeks. His stomach would cramp up and he would scream all hours of the night and then be exhausted and sleep all the next day. We started him on gripe water and Prevacid for supposed acid reflux which were minimally effective. We took him to a gastroenterologist who told us to try alternating between gripe water and Colic Calm, which is a different kind of gripe water ( with charcoal and herbs that help to coat the stomach). Ive exclusively breastfed him and have tried the elimination diet with no gas-causing foods and no obvious sources of dairy (like milk, cheese, or yogurt) but the gastroenterologist said there's no reason for me to avoid casen or gluten containing products at this point. We've been alternating between the two gripe waters for several weeks and have noticed a huge change for the better he started sleeping well at night, crampiness not as bad, etc. So we stopped the gripe waters and only have him on Prevacid..still no real issues. So I was surprised when i got a call from the gastroenterologist saying that his calprotectin levels were in the thousands.. THOUSANDS!! No other issues though.. No blood in the stool or high bacteria count. He's always had a good appetite and is gaining weight well. Gastro did a repeat stool test with the same results. She still thinks its a lab error and wants to do another stool test at a different hospital in January. My father in law has UC, but the dr said she has never seen UC in a baby this young and she thinks he is too young to have IBD. Otherwise, he would be completely miserable still which he isnt. She told me not to worry about it because my son has no severe symptoms that would manifest with a calprtectin this high. But I'm still worried sick of course and considering cutting out casen in my diet, although the Dr said there wasn't a need to. Any thoughts on this or someone that has been in a similar situation?? Thanks so much in advance!
12-15-2013, 11:28 AM   #2
Forum Monitor
Johnnysmom's Avatar
Join Date: Oct 2011
Location: Cincinnati, Ohio

My Support Groups:
I know that there are other things that can cause a high fecal cal number. Viral stomach bug, allergies, Ibuprofen usage, basically anything that can cause inflammation in the digestive tract.

I don't think a fecal cal is normally done on infants so my guess is they don't have a good baseline of knowledge to understand what might cause high readings. Could it be something in breast milk or formula that is causing inflammation? Could it be a natural process of the infant digestive tract that isn't well understood? From my experience Dr.'s are very hesitant to make guesses.

I have heard of many moms who cut out certain foods while breast feeding because their child is having tummy issues. I would probably at least give it a try and see if he seems to feel better. You could always reintroduce it later and see if the symptoms come back.

From what I have read on this forum it seems that in young children the disease presents differently and is usually still developing so it is hard to pinpoint exactly what is going on. I know sometimes very young children get treatment before a diagnosis but it is usually when there is a lot of bleeding, pain, or failure to grow. And usually it is elemental formula which basically means easily digestible with no food, and it sounds like your little one is already getting that. The first sign in my son was weight loss and failure to grow. So if your little one is still doing that, I wouldn't be overly worried. (Easier said than done I know). The drugs that treat intestinal diseases are pretty hard core, so the benefit has to outweigh the risk. At this point it sounds like your DD's GI hasn't gotten to that point yet.

Hopefully, this will disappear as your little one gets older. Either way it sounds like you have a good GI on your side to help you watch your little one. Please let us know how he is getting along. ((((hugs)))
Mom of Johnny
Dx Oct 11 2011 Crohns disease
Prednisone done 12/30/11
6mp 50mg every day
Allopurinol 50mg -discontinued per new G.I. on 11/01/12
Multi Vitamin
Vitamin D3 1000mg
12-15-2013, 04:25 PM   #3
Senior Member
littlemissh's Avatar
Join Date: Dec 2010
Location: United Kingdom

My Support Groups:
Faecal calprotectin levels in children under 6 months tend to be much higher and are not thought to be reliable. If your baby is thriving, hopefully the levels will settle. I am sure your gastro is aware of tis and other things such as infectious diarrhoea etc that can cause it and will have a plan for monitoring.
Diagnosed Crohns small bowel 2010,Gastroduodenal crohn's Jan 2012. Gastroparesis june 2014.
Duodenal perforation/peritonitis nov 2011. Portacath placed Nov 2013. Gastric pacemaker 2015.
Perforated jejenum/peritonitis oct 2015, PEJ for enteral feeding nov 2015

On Humira every 7 days, intermittent iv iron, regular blood transfusions :faint:
On TPN since March 2016.
12-15-2013, 06:18 PM   #4
Senior Member
Naturelover's Avatar
Join Date: Jul 2012
Location: Westminster, Maryland

My Support Groups:
Infants can have IBD etc. Anyone can have inflammation but not always show symptoms. I think that's why your pediatrician is keeping a close eye on things. If you get the same result from another lab, then make sure to keep regular doctor appointments so the doc can catch things sooner rather than later. Also, keep a log of your sons symptoms etc. You just might be able to pick up some subtle signs and symptom that you may not otherwise. Best wishes.
Please keep us posted on how your son is doing.

12-15-2013, 07:05 PM   #5
Forum Monitor
Farmwife's Avatar
Join Date: Apr 2012
Location: Michigan

My Support Groups:
Hi and welcome,
Parts of your story sound just like my Grace as an infant. I'm glad things seem better.
Have your taken a look at FPIES & EGID's? Both have bowel problems of an allergic nature.
Sadly Grace has both.

I'll try to get some links for you to check it out.
Also I'll tag in MLP. She knows more about allergy stuff then most docs. BUT SHE'S NOT A REAL DOC (she should be).lol
I'm mom to............... Little Farm Girl 9 yr old
Ibd (microscopic)
dx Juvenile Arthritis
dx Erthema Nodosum
Bladder and Bowel Dysfunction
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 2 wks
MTX started AGAIN on 11/21/17
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine,
12-15-2013, 07:11 PM   #6
Forum Monitor
Farmwife's Avatar
Join Date: Apr 2012
Location: Michigan

My Support Groups:
This link has to do with FPIES

This link has to do with EGID's

Crohn's Disease Forum » Support Forum » Undiagnosed Club » VERY high calprotectin in 3 month old, otherwise healthy
Thread Tools

All times are GMT -5. The time now is 12:09 AM.
Copyright 2006-2017