Calprotectin question, 162.9 vs 50 scale

[Bareket]

Hi All- New here with a Calprotectin test question. There are different Calprotectin tests, some have a 50 ug/g cutoff, one a 162.9 ug/g cutoff. My daughter has a level of 380 on the 162.9 ug/g cutoff test. Is that the same as 116 on the 50 ug/g scale? (380/(162.9/50)). Sorry if this is super mathematical.

I think our peds GI is reading her test incorrectly and thinks that her value of 380 on this test is the same as 380 on the 50 ug/g cutoff test. I have researched ad nauseum on the internet, and even tried to call the testing lab but they wouldn't answer me because I am not a doctor. I don't see how the values could be equally as there seems to be a different scale.

Very interested to hear if anyone has data on this.

 

[Clash]

My son uses the 50 scale and I've had one using the 162.9 scale. The way it was explained to me by the GI and some members here was something akin to each lab using the average of their common range of scores. If the units of measurement aren't different then the it isn't a mathematical comparison scenario if the units of measurement are different then the mathematical calculations would apply.

I'm going to tag Jmrogers4, my little penguin and mehita they may be some of the ones that gave me insight. I do remember the less than 50 range was labcorp and the other was quest labs.

 

[Bareket]

Hi Clash- You are exactly right, the 162.9 is Quest labs. Thanks for your explanation and solicitation for others' experienced opinions. To be honest I was surprised that my peds GI didn't understand this test, and am therefore switching to a Crohn's specialist in NYC. I figure her lack of understanding this was a sign that she might not be the expert I need. You know more than she does . Maybe you should be a peds GI.

 

[Clash]

I do believe the ped GI is correct in that the value is the same with both tests it's just a difference of normal ranges from different labs. Meaning 350 ug/g is 350 whether you are using the 50 scale or the other.

In the 50 score the pool of patients they pull scores from is averaged to show that 50 and below has proven normal where as with the 162.9 the average of the pool of patients pulled from equaled out to 162.9. At least that is the way it was explained to me, I think, it has been awhile.

I'm going to tag Dusty as she also may have some insight.

 

[Mehita]

Is the 50 scale for kids and the 162.9 for adults maybe? Our GI uses the 50 scale but is happy with anything less than 300 in an IBD kid.

 

[my little penguin]

It is based on the lab reference range and age of the patient .
Kids younger than 9 have a much higher normal fecal cal.
Also it doesn't really matter too much which scale is used - most Gi of kids with confirmed Ibd like to see a FC less than 300 .
But a true flare will be in the thousands so in the GI eyes it would matter either way once you get to the thousands .

FC can rise very quickly but can take months to decrease so a 380 could have from the beginning or end of a flare .

Also keeping mind FC data is just a point nothing more .
Two points only make a line and three points may give you a clue on the way things trend.

I know it can be very confusing at first .
Docs only have a short amount of time to spend with each patient so its helpful to read the pediatric research section here and ask a lot of questions.

The top three pediatric. Gi hospitals are chop
Bch and cchmc .
It is normal to get a second opinion when first dx .


Good luck

 

[my little penguin]

http://www.crohnsforum.com/showthread.php?t=43002

Link to parents pediatric section

 

[Clash]

Mehita the FC norm scale for kids is usually higher rather than lower at least to a certain age, like 5 or 9, I was going to post the link but can't find it now. This difference in range is just a difference in labs used and their normal reference range.

I agree with MLP it is more important to find the trend, also FC is a much better indicator once dx'ed with IBD. Before dx it can be a good indicator of whether further testing is warranted.

Either way, Bareket, it is important that you are confident in and comfortable with the GI so a second opinion can possibly give you another point of view or better understanding of the situation. Hope you find some answers soon.

 

[Bareket]

Hi All- I am still struggling with the variability of the Calprotectin cutoffs. I have read pamphlets of ImmunoCap, Buhlmann, Fisher Scientific and other calprotectin test equipment companies. There are so many variables; dilution, different extraction mechanisms, etc. This document distributed in Oct 2013 is good: http://www.phadia.com/Global/A Docu...on Material/ID Journal/ID-Journal-No 7-AI.pdf

This document indicates these cutoff values:
Cut-off for > 18 years old: 50 μg/g; for 1-18 years old: 275
μg/g; and for < 1 year old: 350 μg/g

Which is different than the usual cutoff I have seen (from Wiki)
Reference ranges for calprotectin
Patient age Upper limit
2–9 years 166[2]
10–59 years 51[2]
≥ 60 years 112[2]

In any case, I am seeing a top peds GI at Mt. Sinai in NYC soon. My daughter only has elevated calprotectin (380 on the 162.9 cutoff) as a potential marker. Her blood tests are all completely normal. Her colonoscopy was clean. Her endoscopy showed inflammation of the duodenum (duodenitis), but the biopsies were negative and duodenitis is usually non-Crohn's. We are getting an MRI of her small intestine in 1.5 weeks. She has few symptoms. I think there is a decent chance she has Crohn's, but being the completely neurotic, impatient and ridiculous person that I am, I am up all hours day and night becoming an expert on how to operate calprotectin testing equipment. A smart person would just wait and speak to the GI.

Thank you all for your help and patience. Maybe I am being thick, but I don't understand how the usual tests say that anything over 50 is suspect, and this quest test says 162.9 is suspect. What if your calprotectin is 100? Is that normal or not?

 

[Bareket]

PS- I think this sums it up: From page 3 of http://www.phadia.com/Global/A Doc...-No 7-AI.pdf

Conclusion:
• There is no good correlation between the various methods measuring fecal calprotectin.
• This can be explained by sampling variation and different
antibodies used in the methods.

 

[Clash]

I think there a few parents who have kids with CD located in the duodenum and several members in the regular forum. I'm not familiar with experience of inflammation(CD or otherwise) in that area as my son's CD is located in the terminal ileum.

For the small bowel we have used the MRI in an emergent situation before dx but once we were dx'ed and switched to a ped GI at a children's hospital we have used MRE(magnetic resonance enterography).

I hope the upcoming tests give you some answers. And you'll fit right in here most of us are neurotic and spend days on end translating medical articles and studies. HUGS!

 

[Bareket]

Hi Clash- Thanks for the clarification, my daughter is getting an MR enterography, I guess that is an MRE. Is that the test that most people use for suspected small bowel crohn's? And thanks for the reassurance that I am not the only neurotic nut of a mom cum medical researcher.

 

[Clash]

Yes, an MRE is supposed to better imaging and no radiation as opposed to a CT which is commonly used as well.

There are a lot of kids here who have had MREs. It is not my son's favorite type of testing. They have to drink the barium shake drink in an allotted amount of time(my son chose to use an ng tube instead of drinking) then there is an IV, they place them in the machine in a particular position and must remain still while there is about 45 min of imaging, then they give glucagon then another 15-20 mins of testing.

My son says the postion is uncomfortable for that amount of time and he doesn't care for the glucagon which makes him I'll for a few mins.

Yeah, we have a constant game of out guess the GI and out guess the CD around here. Alex, I'll take fecal calprotectin stool testing for 200 dollars. Haha.

 

[Jmrogers4]

Thanks for tag Clash I have been out all evening. Ours are run through Quest labs and we have had 3 since Feb. 2013. All all using <162.9 as reference range of normal. The first was 90 and he was in remission as confirmed by scopes, tests, growth and weight gain. After flare symptoms he had another as blood tests were all in normal range but we knew something was going on, it was 295 so for him indicating inflammation present along side the symptoms he was having and lack of appetite. He did a 5 day burst of prednisone followed by 8 weeks of EEN and another FC was done and level was raised to 390 again blood results were all in normal range. Based on this information and knowing what his baseline is the GI scheduled an MRE and he had massive inflammation throughout his small intestine. We knew from original scopes at diagnosis that his crohn's was located at terminal ileum, duodenum, and large colon. We came to suspect small intestine involvement due to his lack of growth and weight gain and since at the time it would have not changed treatment we did not explore further.
I think it is a fairly uncommon test although becoming more common and from my understanding is that is quite accurate showing numbers in 1000's for large bowel inflammation the number are not as high the farther up the inflammation, just my own personal observation but it has become our go to test as blood tests for my son are always in the normal range so even numbers in 200-300 range even though some GI's would consider those "normal" for an IBD kid raise a flag and require further investigation

 

[Bareket]

JM- Thank you. This is a very cogent explanation of how the Quest Calprotectin test works for diagnosing issues for your son. If my daughter has Crohn's, it is in her small intestine. Probably Jejunum and duodenum. Her terminal ileum looked clean when they did the colonoscopy, so if the ileum is involved it would be further in from the end.

We should know by June 2 what the prognosis looks like. I am hopeful that the GI at Mt. Sinai will be helpful in figuring all this out. I sure have a lot of test results to show him.

 

[ezgoindude]

Sup everybody,

I completely relate to your daughter Bareket. I've been undiagnosed nearly 9 months and the best my GI doc wants to do is a food journal. I see my new GI June 17th.

Blood work/CRP/sed rate good, thyroid good, colonoscopy perfect, the duodenum appeared flat which the doc thought celiac, biopsy returned as normal, no pathological worries, etc. all my celiac tests came back negative, but boy does gluten/grain/dairy free help alot.

I'd be very interested to see what they find, as imaging of my small intestine is my next step as well, I stand in front of a computer 8 hours a day at work, I completely agree on being neurotic when all the doc tells me is you could be intolerant to several things, the "wait and see" game.........


oh, spaced, my calprotection was 153 on the 50 test and my symptoms are funny colored d/c/regular stools depending on what i eat, and burning in the top right area near ribs. (trouble gaining weight recently)

 

[Bareket]

Hi EZ- I will let you know about the MRE. I wish I could move up the date from May 30th but there have been no cancellations. I hope you get answers soon.

 

[Mehita]

Good luck tomorrow!

 

[Bareket]

Thank you so much!

 

[Bareket]

Hi All- It seems that the elevated calprotectin for my daughter caused a false alarm. We did a colonoscopy, endoscopy and MRE, all came back clean. My Mt. Sinai doctor who is considered one of the top in NYC said he doesn't place much stock in calprotectin levels at this point. He thinks symptoms and other markers including CRP and sed rate are much more indicative of issues.

At this point we are holding off treatments as it doesn't seem to be Crohn's.

EZgoingdude- I may try the diet suggestions you mention as you seem to have similar issues... some issues but all the tests indicate no IBD.

 

[ezgoindude]

Good to hear Bareket!

Sorry on delay, was finishing a two week trip with the family in south dakota, nooooo internet there. Since our last convo I did receive my DNA lab result back and my genetic markers are positive for Celiac disease. They had to add of course that doesn't mean I have celiac, and it doesn't rule out that I can't have celiac and crohns, but its at least some sort of results, you know? If it wasn't for online forums like this or blogs of others in similar dilemmas I think I would have already lost it.

I'll say from the experience so far your daughter may have severe food intolerances and it will be some time before things at least seem like its heading in the right direction. I've been in this uphill struggle for 9 months and things like rice or dairy I can't dare touch without having old symptoms return.

But at least I'm at a steady weight, right? Keep in touch with any updates

 

[Bareket]

Hi EZ- Wow, ND! That must have been relaxing.

No real updates now. We are working with the Mt. Sinai Peds GI and he wants to see the biopsy slides and her growth charts. Getting all that to him now. When he sees everything he might want to try an elimination diet on my daughter. We need to address the chronic constipation and stomach pains. My daughter is also getting stimulation testing for growth hormone deficiency this Thursday, June 19th. I expect she has a low growth hormone production level.

Will keep you posted!