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05-31-2013, 06:50 AM   #1
dodie74
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Calprotectin test.

How often are calprotectin tests done? Im sure Kians last one was when he was diagnosed 3 years ago. We were given a sample bottle by his doctor yesterday because of the esr being raised slightly. x
05-31-2013, 07:47 AM   #2
Clash
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Right now C is having a fecal calprotectin every 3 months but I think it would be pushed out further when the number normalizes.

Here is a recent thread where one of the other Mom's asked about this:

http://www.crohnsforum.com/showthread.php?t=51913
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C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
05-31-2013, 07:58 AM   #3
Brian'sMom
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I've asked several times about this test and our GI dismisses it. HOW COME?? It's frustrating. Her last excuse was...'unless we had a 'base' number to go on then we don't know what to make of the results.' She said, 'If he's feeling good and all other labs look good and then this number comes back high...we don't know what to do with that'. That sounds dumb to me!
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Kathy, Mom of 14 yr old Brian
symptoms 2005, official dx 6/2010

Praying for Remission
Vedolizumab 8-8-14
Ileostomy 3/22/14
Multivitamin,Iron,Vit D

Total EEN 12-10-13 to:TPN 1-29-14 - 4-2-14
Tried:Azathioprine,Pred,Pentasa,Cimzia Bi weekly & MTX 9/2013 to 8/2014, Humira 1/2011-9/2013, w/oral mtx 5 mos in 2013. Remicade: Had allergic reaction Jan 2011 Built up antibodies by 3rd infusion.
Has done round of Flagyl due to abcess 12/10 and 10-21-13 which helped both heal quickly.
05-31-2013, 08:39 AM   #4
Clash
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Yeah, that sounds kinds weird to me too, Brian's Mom. C has never had extremely high results with blood work and inflammatory markers even during his worst points the labs didn't alarm anyone. So it was only when they got a look inside and saw the raging fire going on that the diagnosing GI said, "Hmmm...labs don't reflect severity for him."

At the time of C's first Fecal Calprotectin, we were about 6 months into treatment and he was having no where near the symptoms that he was before being dx'ed. But he had a couple of loose stools I asked for the FC, the GI nurse said well I'll ask the doc but his labwork just came back and it looks pretty good. The fecal calprotectin was 1700, you could've knocked me over with a feather, that high result was not what I was expecting at all looking at the lack of outward symptoms. It is when we added the MTX, his next FC test came back 300 so definitely a downward trend. We wouldn't have known to add the MTX had we relied on labwork or symptom levels alone.
05-31-2013, 11:30 AM   #5
Brian'sMom
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We go on June 4th. I'm going to ask...yet again. I'll get my husband on board. The GI likes him better than me!! If labs look good and he's on mtx and Humira and its maybe then working...seems like a good time to get a 'base' number. (a few months ago when my son's inflammation markers were slowly climbing GI wanted to add mtx. We were ok with that but I asked, is that on blood work alone? My husband insisted that he wouldn't add unless we did scope. GI said, "How long has it been since last one" (!!??!!) We said, 'we switched to you 3 years ago and there hasn't been one since then' . We just need remission so she doesn't have to do much cause its getting mind tiring that we have to think of things that should be protocol I think.
Sorry about the complaining!!!!
05-31-2013, 11:33 AM   #6
my little penguin
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DS has had three so far.
Two slightly normal 80 range even though
He was feeling poorly end of last summer .
Three months apart
Then one in march elevated ( 273) which Gi thought was from a mini flare in Jan.
DS is not doing as well now so Gi ordered another fecal cal.
This past week.

We now have a baseline since we did the fecal cal last year same time as his scope .
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05-31-2013, 12:48 PM   #7
CarolinAlaska
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I think we'll get ours q 3 months or when there seems to be a change. Her blood work doesn't show her inflammation usually - just the FC.
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J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), taking pred only. NG feedings nightly.
Osteoporosis/osteopenia, Scoliosis, EDS, Asthma, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety, postural tachycardia/POTS and multiple food allergies.
06-11-2013, 04:44 AM   #8
dodie74
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Well thats the stool sample sent in to have tested, his docs said 3 weeks for results so fingers X it comes back ok. what is the normal kind of result and what is classed as high?
06-11-2013, 06:49 AM   #9
Hope345
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Our Gi said normal is around 300 for our daughter.

Hope you get good results dodie74.

Our insurance does not cover this test yet, so we are holding off for now since our daughter appears to be in remission. It costs about $190 out of pocket so we will only use it when necessary. However, they will pay for a colonoscopy 100 percent. Even after I sent in all the current info, my own letter explaining how useful it is, and the GI's letter. I believe this test is very useful, I just wish they could get the results back sooner.
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Daughter (age 17) diagnosed with Crohns Colitis/UC 1/2012 Mod/severe changed to U.C.: 11/7/2014 anemia:blood transfusion current: Flare, weaning from Prednisone, still bloating: Meds ,Pentesa: 2000mg twice daily, Vegan diet, mesalamine enemas .Previous: mercaptopurine, Remicade (13 treatments), Imuran, prednisone ), Flagyl, iron infusions, cortifoam,
Continue to be hopeful
Daughter: age 21, undiagnosed: GI issues
06-11-2013, 11:20 AM   #10
Mehita
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Last month, while flaring, DS's number came back at 1332. I've heard that for IBD kids the goal for "normal" is less than 300 or so.
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- Small bowel resection, Jan 2013
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