Fecal caliproctine level 227

[kathleens]

HI my daughter is 13 years old and we dont have any answers yet.She has has joint and skin problems for years when she was younger she was hardly able to roll over in her bed walk and about an hour later was running about like nothing a matter with her .
Over the years rashes, pustules on her hands and feet and the doctors thought she had SAPHO syndrome but really rare..
Her ANA bloods 1.642 so they said auto immune but not sure what. Started with hip problems, ankle wrist , knees thought arthritis but all other bloods ok.
Started now and again like bowels are moving when out and about doing every day things but bowels arent only the feeling, tingly hands and feet at times, vision problems.
Now last year tummy pains they did a fecal caliproctine test level 227 in and got camera up and down and all biopsys clear.
NO BOWEL PROBLEMS.
Doc said before they did the camera THE ONLY THING THAT RAISES FECAL CALIPROCTINE IS CROHNS OR COLITIS.but now all biopys and camera clear she might have had cold or sore throat i didnt like to say to doc you told us these two things only raise it.
She has had a bowel mri done with the drink mannitol but no results back yet but doc said wont likely be anything as there would be spead to the areas that they have looked at
The fecal caliproctine test was done MARCH and SEPT 2012.
ANA they now say might always just stay high.
We do have family history of crohns but all runnign to toilet bowels.
Where my daughter doesnt have problems with her bowels.

COULD ANYONE TELL ME COULD THIS BE CROHNS, COLITIS, because camera and biopsys clear.
thanks

 

[Niks]

Hi!

It sounds like you've gone through a tough time with your daughter. It can be unbearable and take such a long time, while trying to get a diagnosis.

I really hope you get some answers soon.

Good luck!!

:ghug: :goodluck:

 

[Devynnsmom]

I'm sorry your daughter is having so many problems. My daughter is 11 and has had problems since she was about 18 mos old. She had severe constipation as a baby and young child, fevers, joint pain (usually hips, knees and ankles), mouth ulcers, rashes, skin peeling, stomache pains etc. She was unoficially diagnosed with Crohns after upper and lower scopes with biopsies in 2009, and then the diagnosis was changed to ulcerative colitis in Mar 2012 after more upper and lower scopes. I know how incredibly frustrating it is. Keep being her advocate! Good luck, I hope you get answers soon.

 

[kathleens]

Thank you everyone. Just got letter today to say Chloe MRI test is normal

 

[Farmwife]

Hi and welcome to the forum.
I'm so sorry to hear about your girl. Such a hard age to have this going on.
I read and reread your post. It's like reading about my Grace even down to the pustules on the hands and feet. Grace's is on her upper legs and upper arms though.
Grace had normal labs. It was her biopsies looked visibly normal. We went home totally distraught. The next day the GI called and said at the microscopic levels she has a whole host of problems. I still am pushing for an MRE to see the middle part.
The MRE, even though it showed nothing, it can't take biopsies, so their could be microscopic disease that will come out in time but doesn't help you for the time being. Sorry.

Hugs, hang in there!

 

[kathleens]

thats all for the replys.
also farmwife sorry to hear about your daughter Grace. We go back to see rheumatologist 18th Feb so will see what doctor says then.

FARMWIFE has Grace had fecal caliproctine test and if so do you know the level?

 

[Farmwife]

Yes her level was only in the 60's. She however never shows much in her labs.
You do have ground to stand on with her FC being raised. All though I believe that most GI think any thing over 400 is high. GI are so different.

The best advice I can give is if you believe their is a problem then fight for answers.
Your not crazy and kids shouldn't go through this.
You MAKE the doctors tell you why this is happening. Test don't matter if the results do not match what's in front of you.

I had to fight for most her life. It was a loooooong haul for both of us.

BTW, have you looked into microscopic IBD's?

 

[xmdmom]

Is she on any medications? Some medications (proton pump inhibitors, NSAIDs) can increase calprotectin, as can GE reflux, untreated celiac and food allergy.

 

[my little penguin]

Fecal cal above 150 is high for kids under 9
Over 9 anything above 50 is high.
Keep fighting
DS had a level last year at age 8 of 86 when his terminal ileum was inflamed as was his rectum/ sigmoid colon- scope confirmed this .
So .....

 

[Farmwife]

WHAT MLP?? I was told her level wasn't much.
Sorry for the wrong info kathleens. See even I'm learning.

 

[my little penguin]

60 is norm for Grace's age regardless of Ibd.
Above 200 is high but not really high for someone with Ibd ( there's tends to be in the high side almost always - really high is in the thousands like 2000. )
So if your screening for Ibd high is different than if they know you have Ibd - make sense ??

 

[Henrietta78]

My son's FC was 800 something over the summer, and 500 something in November (he is 4). Doing labs again in a few weeks. His GI doc said the exact number isn't as important as the trend. Hoping it will be lower this time, but still thinking we are heading towards more medication and another colonoscopy this year.

What's so frustrating is that other than that, on the surface he is doing so well. Blood labwork always looks great, iron levels are great, decent energy and growth all commensurate with a normal 4 year old.

This post jogged my memory about something though...around 1.5 years he had a virus which was diagnosed as hand foot and mouth The only symptom was itchy fluid filled blisters on his palms and the bottom of his feet. Even at the time i doubted the diagnosis of HF&M because it was never in his mouth, and never painful, just itchy. Shortly thereafter the loose BM's started, which led to mucous and blood in his stools. Hmmm...

 

[my little penguin]

Mommy wisdom says probably flare
Not a doc though
We tend to not believe normal blood work here since DS has always been normal but still had inflammation on scopes

 

[kathleens]

HI Chloe is omprazole for reflux only with fecal caliproctine 227 ANA 1;642

 

[Henrietta78]

MLP, I feel you're right. Also, I would rather be prepared for the worst and pleasantly surprised if proven wrong.

The only other time they tested his FC was admitted to the hospital at time of dx- it was over 1,000 and his bloodwork showed low iron, elevated SED etc. Also anything he ate literally passed through almost whole, or he wouldn't eat at all and was pooping yellow foam. My point being, in order for his blood work to show a problem he was in the midst of a crisis.

 

[kathleens]

HI Chloe is omprazole for reflux only with fecal caliproctine 227 ANA 1;642

 

[xmdmom]

Henrietta- good energy and growth and Fe are really positive.

Kathleens
I got my info from this article http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2904879/
You can look at table 4. There are false positives for any test and calprotectin is no different, so it doesn't absolutely mean ibd.

How is her weight and growth? Are other labs normal (CBC, Crp)? If she is otherwise thriving, her doctors may just want to repeat in a few months and reevaluate if it is going up, or she has an increase/new symptoms.

It's no fun dealing with weird lab results
((Hugs))

 

[Henrietta78]

Thank you, xmdmom. I need to hear that. Good reminder to be grateful for the positive and not focus all my energy on the negative.

 

[kathleens]

Xmdmom

Thanks for the article my daughter has had three fecal caliproctine test first one borderline and two 227 over large periods of time. I have been told Caliproctine test isn't very good for looking for imflammation but FEACAL is more accurate . Do you know anything about them both. Think caliproctine is blood test and what my daughter got was stool sample ?

 

[xmdmom]

I am assuming you mean calprotectin, as I googled and couldn't find a caliproctine.
The fecal test is the one done for IBD. A blood test for calprotectin can be done, but isn't used for IBD as far as I can tell. The blood calprotectin test can be increased in arthritis.

 

[CarolinAlaska]

Hi Kathleens, I know how you feel when your child is sick and you can't figure out what is wrong. How is her growth? Has she shown any pubertal changes? How is her appetite? Does she have any GI symptoms besides pain? Has she changed positions on her growth chart? My daughter had all negative MRE, colonoscopy, upper endoscopy and only one of 17 biopsies was abnormal at all (not diagnostic for Crohn's) but the video endoscopy 9 days later showed extensive inflammation in her small bowel. Her main symptoms at that time were not having an appetite, getting full early and delayed onset puberty with low weight (less than 1% on growth chart). Hugs to you and your dear daughter. I will pray that they can find the answers and get an effective treatment quickly. It sounds like you've been in limbo for a long time.

 

[AZMOM]

Hey - FC is a screening tool. IMO, a level of 200+ WITH other symptoms warrants further investigation. It's not a diagnosis on its own. Same with positive ANA.

Just from our experience, Claire is ANA+ and Rheumatoid Factor positive (learned all this at arthritis diagnosis). We've had fecal calprotectin results come back with readings >2500. At her very best she was around 258. Results today, actually, were 577. During other symptomatic timese we've seen 884, 636, etc.

We'll be thinking about you all!!!

Hugs -
J.

 

[Patricia56]

Hi -

I replied to your post under Test Results so you might want to look at that. You didn't give nearly that much info with the other post though.

There are other possible though unlikely causes of an elevated FC. These include cycstic fibrosis (see article link below), lupus (which would match the elevated ANA), and there is a well-established link between spondyloarthropathies and gut inflammation.

And, while it also seems unlikely in this case, infections can cause elevated FC levels at least temporarily.

I hope the rheumatologist has some answers for you because that seems the most likely direction to pursue given all her symptoms.



Elevated levels of FC in children with Cystic Fibrosis
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3439990/

 

[Sascot]

Hope you get some answers soon, I know how frustrating it is getting tests back normal when you just want answers. On one hand it is good to get the normal results, but doesn't get you any further forward. As for the calprotectin, my son's was around 1600 which went down to 160 after the 8 weeks EN.