Question about Fecal Calprotectin Counts

[nicumom]

It would take forever to type out the history of our soon to be 13 year old. Lifelong issues with belly pain and wanting to go #2, ever since the potty training years. When he goes - it takes FOREVER.

Year after year - doctors prescribed MIRALAX.
He's been constipated - and also had diarrhea episodes in the past - not much diarrhea anymore - but once he was so constipated that the diarrhea went AROUND the blockage - who knew? Taken to the doctor a few times - x-rays showed constipation - always told to use MIRALAX. Once we left the Dr. office being told "constipation" - only to make it home and my son was in so much pain I had to turn around and go to the ER....after exam they agreed constipation but it was hard as a rock - and they'd never seen anyone backed up so much - yet our pediatrician dismissed us with MIRALAX - and NO pediatrician ever did food allergy tests!
Finally around age 11 - one smart doctor - a Gastro at Childrens - did some tests and we learned that his lactose count is low - (9).
He had a colonoscopy, endoscopy and biopsy Sept 2013 - everything looked great other than some ulcers in his lower colon. Doctor not concerned. No answers.
Belly pain MUCH better after we took dairy out of his diet. And on a hunch - I took him off GLUTEN even though he tested negative for Celiacs.
In my opinion - his belly pain is less frequent when he is off gluten.
Yet his bathroom time still takes FOREVER. Some rare days less than 15 minutes, but many days 30 minutes to 90 minutes.
Fecal Cal results in July 2013 - 155
Fecal Cal results in Nov 2014 - 249
Had 2nd colonoscopy, endoscopy & biopsy in Sept. 2014 - everything looked normal - even the ulcers were gone.
We go to Cincinnati Childrens Hospital - which according to them - is ranked #3 in the country for being the best. Why can't they figure out what's going on?
Why did his fecal cal number go up? I understand that "normal" is below 55! I was told that it indicates "inflammation" - from what? Google search results come up with all sorts of things - including CANCER. The doctor says it's NOT Crohn's, or Celiacs, or IBS, or IBD ....what is it? What tests should I ask for without making my son being picked and prodded unnecessarily? He is almost 13 - I hate hate hate when his belly hurts - and I hate knowing that a test result has come back showing a problem - yet nobody knows what that problem is.
See - I told you this would take a long time to explain his history. I'm new to your forum - and desperately looking for other parents who have struggled with a diagnosis of any sort.
Side note - he was born 7 weeks premature - and I always wondered if that is the problem - did he miss developing something????
So sad, so frustrated. If you read this far - then a million thank yous!!!!

 

[Clash]

Welcome to the forum and I'm so sorry to hear of your son's struggles. The Normal Reference Range for Fecal calprotectin stool tests can vary by lab. For labquest the NNR is <50 for Quest Labs it is either <163 or <167, I can't remember off the top of my head.

Has he had any imaging done, MRI or MRE? Has he had any motility tests to determine if there is dismotility? Also there is the pill cam to get a look at the entirety of the small bowel since EGD and colonoscopy cannot do this.

I hope you find answers soon!

 

[nicumom]

Guess I forgot to mention a few things - yes he did have an MRI, and over the Christmas holiday he swallowed a camera pill to take pictures of his stomach and areas where the endoscopy couldn't reach - all normal. Nobody has mentioned dismotility and I have no idea what that is. I will google it now. His fecal cal count is high from either of the ranges you mentioned. Childrens posts that less than 50 or 55 is normal, but our gastro doesn't worry until it's over 100 - and his is over 100...but nobody can tell us "why" - Thanks so very much for the reply!!!

 

[Clash]

Was his negative result for Celiac by blood test or biopsy? I'll tag Mehita in on this.

Dismotility is a functional issue involving movent of the bowel.

 

[nicumom]

Both! He did the blood tests and 2 biopsies - one in 2013 and again in 2014. Interesting about the dismotility - another thing I had found online was called "peritonitis infection" and "meckels divertculum" It just saddens me so much that the #3 children's hospital can't figure this out and I feel like I am on my own. Thanks so very much for any advice!!!

 

[my little penguin]

Here is a link to our parents forum
Many parents have been in your shoes .

http://www.crohnsforum.com/forumdisplay.php?f=49

If you post there you would get more parent input.

As far as high fecal cal many things can cause that
Over 50 is high it un treated crohns flares are in the thousands normally.


Talkinga long time to go doesn't mean Ibd
My non Ibd kiddo can take every bit as long

Some kids take longer to figure out
Has he seen the colorectal group at cchmc ?
They handle severe constipation and analrectal disfunction .
There are Manometry tests ( painful tests)

Has he tried formula only ( peptamen jr etc)?
Has he seen the pain managment team -they are excellent there -tens unit to break up the pain ?
Has he tried the fodmaps diet ?
Have you kept a food diary ?
Checked out for mast cells disorder ?
Gotten a second opinion any where else ?
Just because the facility is number three doesn't mean the actual gi you saw was the best option for your kiddo

 

[Mehita]

With neg blood and biopsy for Celiac, what about gluten intolerance? Especially if he felt somewhat better after being off of it for awhile. There is no test for it per se, just trial and error, but if it helped at all, I'd stick with it.

Has any other food allergy or intolerance testing been done? I've heard of kids reacting to really odd things like Red 40 and xantham gum, things that don't always pop to mind right away. Just a thought...

Hang in there, momma!

 

[nicumom]

No other food tests - well, our asthma/allergy guy did a food test - but said he had no allergies - and I honestly don't remember if it was the skin prick test or a blood test - or both - I should call them. We go there because my other son has asthma. Not this one. Yes, avoiding gluten helps - so we continue to avoid it. Which makes the pain less frequent but doesn't explain why his fecal cal test is high.
Has he seen the colorectal group at cchmc ?
They handle severe constipation and analrectal disfunction .
There are Manometry tests ( painful tests)

Has he tried formula only ( peptamen jr etc)? No he hasn't - I have no idea what this is.
Has he seen the pain managment team -they are excellent there -tens unit to break up the pain ? - No we haven't. Wouldn't know where to look or what they would do with him? Would they decide it's "in his head?" - Yet his has inflammation - that we can't deny.
Has he tried the fodmaps diet ? No, we haven't - I can try that - but my husband continues to make fun of me claiming that it has nothing to do with food....and he is a FOOD SCIENTIST. He will not read all the things I've read - I think he is in denial - and that breaks my heart.
Have you kept a food diary ? - I have off and on - guess I should get back at it and stick with it.
Checked out for mast cells disorder ? - No idea what this is - but no, he has not been checked out for that.
Gotten a second opinion any where else ? No, but I am close - they finally called me today to see how he is doing - and they are suggesting some sort of "anal manometry" procedure - done while he is awake - to see how his muscles work or don't work in the rectum? But how would that explain the inflammation numbers in the fecal cal? It might help us understand why it takes him forever when he uses the bathroom - but I am most concerned about the inflammation.
Just because the facility is number three doesn't mean the actual gi you saw was the best option for your kiddo - I agree - the gastro we saw there 6 years ago - did nothing, so at least this one is better and figured out the low lactase count.

Sorry for my delay in replying to your very thoughtful questions and comments - I am just at a loss - especially since my husband is in denial and will to 'see' that something is just not right- we can't deny that fecal cal number -granted he tested negative for crohns but avoiding gluten really does help - and my husband thinks this gluten thing is a "fad" - I just tested myself and have a food sensitivity with it - a level 3 - and I was told I should avoid it - so my son could have a sensitivity as well. But my husband just pokes fun and doesn't see it - he thinks our son is 13 now and should use the restroom like normal people - and he is ignoring the inflammation in the fecal cal test. I'm beyond frustrated - and it's taking it's toll on me mentally - not being able to help our son - and not having my husbands full support
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