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FCP results based on disease location

Someone posted recently that FCP results and norms can be different for small vs large bowel Crohn’s, or something similar. I can’t find it. Do any of you have info?
 

my little penguin

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Abstract
Fecal calprotectin (FC) is a highly sensitive disease activity biomarker in inflammatory bowel disease. However, there are conflicting reports on whether the diagnostic accuracy in Crohn’s disease is influenced by disease location. The aim of this study was to undertake a systematic review of the published literature. Relevant databases were searched from inception to November 8, 2016 for cohort and case control studies which had data on FC in patients with isolated small bowel (SB) and large bowel (LB) Crohn’s disease. Reference standards for disease activity were endoscopy, magnetic resonance imaging, computed tomography or a combination of these. The QUADAS-2 research tool was used to assess the risk of bias. There were 5,619 records identified at initial search. The 2,098 duplicates were removed and 3,521 records screened. Sixty-one full text articles were assessed for eligibility and 16 studies were included in the final review with sensitivities and specificities per disease location available from 8 studies. Sensitivities of FC at SB and LB locations ranged from 42.9% to 100% and 66.7% to 100% respectively while corresponding specificities were 50% to 100% and 28.6% to 100% respectively. The sensitivities and specificities of FC to accurately measure disease activity in Crohn’s disease at different disease locations are diverse and no firm conclusion can be made. Better studies need to be undertaken to categorically answer the effect of disease location on the diagnostic accuracy of FC.
From

 

my little penguin

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Which I find hilarious since if you ask gi
Fecal cal is definitive for disease market regardless of location
Apparently they didn’t see this
 
There can also be large FC differences between different labs, some labs use ELISA, some QPOCT, and between kits there are a lot of differences too. You can send the exact same stool sample to two different labs and get vastly different results. The absolute value means less than the trend FC is moving in imo.
 
Our GI definitely says there is a difference between small and large bowel but he stands behind FCP being useful in 98% of cases. He also is less hung up with the absolute value as much as trends and just "high" and "low".

Optimistic, you are scaring me asking this question. Things o.k. with your son?
 

my little penguin

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Did he have a cold or any other minor illness wothin 6 weeks of the fecal cal ?
We were told not to even bother of Ds had any type of illness no matter how small within 6 weeks of when we were suppose to get a fecal cal

Oddly enough new Gi at one of the top us ibd kids had us stop formula
Said not necessary unless they are inflamed or allergic
They want them on unprocessed Whole Foods (Mediterranean diet ) as much as possible
Who knows
 
THIS is why I support hiding birth certificates and letting them "turn" 18 when we say they are ready to!

Hopefully, this is just a blip or can be explained away by a new lab (he just went away to school right?).

Glad you are on it!
 
Interesting MLP! The docs and dietitians I follow are commenting a lot lately about all the "bad" stuff in formula and saying that while they still love it for improving nutritional status, inducing remission etc that they feel the "bad" stuff long term is too risky. Looks like your center is at the forefront.

A lot of money to be made for the person who develops a good formula....lots of our kids are going to college now...anyone?
 

Tesscorm

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S's GI isn't a fan of FC for small bowel. When I asked at some past appointment, he said he didn't feel the result would be helpful as S's inflammation had been in small bowel. FWIW, at the time (may have changed??), he said the test wouldn't be covered under our provincial health (perhaps we didn't meet specific criteria) and the cost would be approx. $200 and, in our case, he didn't think it would be worth the cost.

Optimistic - S has stopped drinking his shakes. I suppose while he was away at school, he'd gotten into a routine with them and there was 'convenience' as he didn't spend his time or money with breakfast, snacks (he'd just have the shakes, which I bought! LOL). Once he moved back, the routine just gradually died away... it hasn't seemed to have hurt him. I don't recall how old your son is or how long he was drinking the shakes as a supplement but, for reference, S ingested the elemental formula, 1500 cal/day (thru ng tube) for almost two years and then drank ~2 boost shakes (I think most days) for another 4 years.

What diet does your son follow? As picky as S always was, now that he's older and more mature(?), he has made an effort to eat a healthier diet...
 
Oh we’ve been in lots of dr discussions about how bad formulas are and how packed with not only bad ingredients but things these patients should avoid. They are exact opposite of his clean, organic, preservative free etc SCD. But the combo worked so well for him no one dared to tinker.

He decided he was done with it all 3 months ago, after perfect labs. Drs agreed he could try. And now this. He has earned himself an unplanned scope. Grrrr.

Was he sick MLP? I don’t know but I’m going to think about that now. Thank you all for the good info. So one small illness could matter, if within six weeks?

Tessmom - we were typing at same time. He stopped his shakes and SCD diet after five years. He moved to an organic sort of clean diet but that was a big change from the former militant devotion to monitoring every bite he put in his mouth. Now at school who knows. We now pay for FCP out of pocket. It was approved and now it is experimental according to insurance. Not sure how that can be but whatever.

I think I may go to hospital and send him pics of ER and ICU as a reminder.
 
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OMG! Optimistic you are killing me! Pics of ER and ICU! Can you send them to O also?

Yep! That is exactly what all the docs I follow say also. The bad stuff is bad for Crohn's but then why does it work so well? No one knows. BUT it is fie to use to induce remission AND fine as supplemental (can't be worse than a lot of other stuff in the SAD diet) But not as sole nutrition on a long term basis. It will be interesting to follow where they go with this.

Also, Tesscorm and correct me if I am wrong Optimistic, her son was on SCD and EN as his primary treatment. He was the ONLY kid who has every done that and succeeded around here.

I say you tell him he has about 100 other mommy's who are mad at him because we hold him up as the shining example of managing disease through diet!

Have you even let yourself have discussion with him about what if inflammation is found at scopes? Will he have those when he comes home for Thanksgiving or at the end of the term?
 
The plan is Remicade as next step. We did a tour of infusion center years ago. Scoping may be aggressive and we are waiting to schedule. The concern is he went from years of minor flares (undisgnosed) to one big sudden meltdown at diagnosis. May get a second from Boston but he has had scope and MRE every 12-18 months in past. I don’t know what he loses by doing it (other than prep and my co-pay). Plus he is so unusual there is a lot of interest. I think there are half dozen in practice with 5 plus years on SCD still doing well (even though his own dr poo poos it, ha).
 

my little penguin

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Honestly I have no idea how much impact a minor illness causes on fcp
But new Gi team at new top ibd place flat out told Ds
Don’t bother turning it in
(They track fcp every 6 months as long as things are good )
 
Location
San Diego
We now pay for FCP out of pocket. It was approved and now it is experimental according to insurance. Not sure how that can be but whatever.
Probably because FCP is FDA approved for diagnosis of IBD but not for monitoring the disease. Thus, if you are already diagnosed but are still doing FCP testing to check how you are doing, then you are monitoring - which is "experimental" from an FDA point of view. And of course an insurance company will seize on any excuse it can find to deny coverage, and in the case the FDA provides a perfectly good excuse that insurance companies are more than happy to embrace.
 
^THAT!

Our GI gets around it by coding the test for "diarrhea" (which is not a lie) and "Crohn's small bowel". When he says, "Crohn's large intestine" they don't cover it. Also don't cover it when he says, "Crohn's large and small bowel". So weird.
 

Maya142

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Honestly I have no idea how much impact a minor illness causes on fcp
But new Gi team at new top ibd place flat out told Ds
Don’t bother turning it in
(They track fcp every 6 months as long as things are good )
This is so odd because we were at that hospital for 7 years and we have never ever been told not to turn in FCP if my daughter had a cold or something. Maybe it's new research? But I thought it's gut specific? Does anyone know why it would change?? I know ESR and CRP can go up if the kiddo is sick but I always thought FCP was gut specific so that did not apply.

Our pediatric and adult GIs both looked at the trend for my daughter. When she is doing well and her IBD is in remission, her FCP goes as low at 20. So a 200 would probably earn her imaging. I actually think we scoped when her FCP came back at 200 - she was on Imuran for her IBD, not a biologic. But she was also on Prednisone (for her arthritis - low dose about 12.5 or 10 mg) and her FCP was still 200. Our scope date was 6 weeks later, so she was put on Entocort since she wanted to get off Prednisone ASAP. The scope still showed inflammation and ulcers in her terminal ileum and cecum. So while there may be a lot of "rules" -- i.e. scoping on steroids isn't useful or FCP is lower for small bowel disease, for us following the trend has always worked. After that scope, we switched her to Cimzia and her IBD responded beautifully.

FWIW, her IBD has been worst in her terminal ileum, although she had inflammation from her rectum all through her colon and in her TI at diagnosis. And her FCP tends to be between 200-450 ish when she is flaring.

Optimistic, sorry to hear your son isn't doing as well...young adults are great, aren't they ;)? It's amazing how they are all independent and can make their own decisions and then when something goes wrong, I get frantic texts saying "Mom, what do I do about xxxx?"

And then after I've sent them a carefully considered and worded response (to increase the chances of them actually listening to me) my advice is promptly ignored :rolleyes:.
 
Location
San Diego
^THAT!

Our GI gets around it by coding the test for "diarrhea" (which is not a lie) and "Crohn's small bowel". When he says, "Crohn's large intestine" they don't cover it. Also don't cover it when he says, "Crohn's large and small bowel". So weird.
Yup. That's because if the doc says "Crohn's" in the reason for the test the insurance company will not cover it because Crohn's is a diagnosis, and so from their point of view the diagnosis has already been made. But if he puts "diarrhea" that's a symptom and not a diagnosis, so they will cover it for the purpose of arriving at a diagnosis.
 
Can we just say these kids can't be medical adults until we say so... :LOL: Jack was supposed to have FCP done over the summer, he'd lost weight etc. He never did it! From our experiences, it's been the only indication something is going on as labs just don't change for him. He was doing Orgain Shakes while in school but stopped about a month or 2 before he came home for summer and of course the weight he had gained dropped right off him.
Called to schedule his infusion a couple of weeks ago and apparently the infusion center closed down while he was home over the summer, of course, he called the day before he was due so it took him 2 weeks to get everything worked out and get infusion scheduled in his apartment (luckily for me, he didn't tell me any of this until he was having his infusion 2 weeks overdue!).
He'll be switching over to adult GI from the Ped GI practice where he's been since 10yrs old during Christmas break when he is home and I suspect they will want to do scopes or MRE since it will be 3 years next August since last MRE and 4-5 years since scopes.
 
Although I’m sorry to hear all of this I feel slightly better that there are other young adults who don’t do what we think any sane person would do. It truly boggles my mind. I guess they feel bulletproof? Did you ever imagine these scenarios when they were precious, compliant children?

Thank you all.
 
Ok now wait a second! I always say,"if my daughter did half of the shenanigans I did in college I would kick her BLEEP!" We were just as dumb. Ummm. Errrr. Invincible. We just didn't have chronic illnesses but I can assure you I did some pretty ridiculous and insane things that these days would make my "parent of a college kid" head spin! Hopefully she never reads this thread and still thinks I am infallible.
 

Maya142

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Optimistic, don't forget my kiddo, whose shenanigans started WAY before college. While stubbornly refusing an NJ feeding tube, she lost 15 lbs, which doesn't sound so bad until you consider that she was already pretty underweight. She tried one out, and was so malnourished that she developed Refeeding syndrome, developed an arrhythmia and had electrolyte imbalances that lasted months. She was even told specifically by the doctor that Refeeding syndrome was initially discovered in concentration camp victims, to try and make her understand how malnourished she was.
Even then, a few days after leaving the hospital, she pulled it out. She finally agreed to re-try it only after several doctors told her her organs were going to shut down if she did not do something about it...she drove me absolutely insane that year. She was a senior in high school and 18, so we had to just watch her get thinner and thinner and sicker and sicker.

I'm convinced I will have a heart attack one day, from the stress of her college career!!
 
I think the success stories should be about the parents of these young adults and how we have managed/cope with the stresses of their stubborn ways. So kudos to the moms/pops who have stood by their kiddos and had to endure the pain of watching them make mistakes and suffer. :p(y)
 

Maya142

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Well, I strongly stand by my rule - it goes for toddlers, teenagers and young adults: bribery works. We promised her a kitten and she dealt with the NJ tube for 3 months ;). By then she did understand how sick she was though - hearing her organs would shut down was a real shock to her.

I will add that she was justified in her discomfort (and wasn't just whining) and I do think her GI handled the situation very poorly - by making her feel bad that she couldn't tolerate an NJ tube and not listening to her when she tried to explain why - refusing to account for the fact that she was already uncomfortable and not sleeping at all (was literally awake till 5 or 6 am every night) due to severe pain.

Much later we were told that they don't even use NJ tube tubes on adults - it makes me sad that we force kids to tolerate things that adults refuse to do.

Optimistic, any news on your son?
 
It's not covered at all in Ontario Canada for any reason as far as I know--not by the government or extended health insurance plan I am with. It's $180 a pop.
I'm not sure how but I was able to get our PCP (family doctor) to write a requisition for it every 3 months. Maybe you can push it? Our GI does not offer it. Also in Ontario.
 
A difference in calpro over a period of one month led to a scope for H which led to shakes being added to meds. But her colon and TI were pristine. Honestly I am starting to wonder if fcal is a great advisor.
Shakes were due to duodenal disease activity only found on biopsies.
I have the option pf running fcal but I have stopped. I think it leads to too much intervention.
 
I am surprised to hear you say that Pilgrim. Isn't the cal pro value the only thing sometimes that tips you off to H's disease activity. If I remember correctly, hasn't she felt fine in the past but returned a high cal pro which led to scopes and finding active disease? Or is my age showing and I am confusing her with someone else?

I agree on the intervention front though. I think there is something to be said about watching and waiting. Look at T for instance. Returning a cal pro of 200's - 500, lost weight and we were all hopping mad. Gave it time and weight came back on and cal pro recently retuned at 65.

I think just like anything else you can't look at cal pro in isolation and have to understand what it means for each specific person. Just like CRP aloe does't mean anything and I dare say symptoms as they could be caused by many other things other than IBD. It is a whole picture thing and if cal pro alone is increased I would say watch and maybe investigate further.
 
CIC, you are probably getting old, lol, but your memory is fine.

Yes, it has been an indicator of active disease for her in the past. But her recent (May/June) calpro came back in the 400's and scope showed pristine colon and TI. Duodenal disease shouldn't show any high calpro (too far up). So, I can't trust it now. It jumps up and down, then you investigate and time has passed so it's another picture. Crohn's changes, heals, and damages in cycles constantly.

For her, it's anemia. If HGB is low then we question. At this point I am aggravated at over- intervention. And yes, T is an amazing example!

It's a shifting disease and an individual disease. Nothing predictable about it.

Back to shakes....MLP can you get us studies from the hospital moving away from shakes and over to Mediterranean diet? WOW!
 
Pilgrim, are you on twitter? A lot of the researchers for IBD are on there and they post diet studies all the time. It is definitely a field that is getting a lot of attention. I remember years ago our old GI told us there will come a day when they are able to identify all the different phenotypes of IBD and tell you exactly which diet should help. But for now the one unifying thread throughout is Whole Foods, moving toward more plant based diet. Organic.

As for cal pro not being indicative of duodenal disease, I know a young woman who only has duodenal disease and her cal pro is definitely an indicator of activity. It just doesn't go up as high as colonic so for her a 200 will catch her GI's attention.
 

my little penguin

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Wait now I am
Confused pilgrim
I thought her scopes looked visually good but still showed chronic inflammation present .
Chronic inflammation typically shouldn’t be there either .
Goal Should be full mucosal healing
With no active OR. chronic inflammation
Regardless of the numbers on crp /fecal cal etc

They didn’t give us studies
They just stated Mediterranean whole food organic minimally processed is what they recommend
🤷‍♀️
 

my little penguin

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@Pilgrim wanted to ask since she was dx so young did they do a genetic study (veo ) to determine if there was a best coarse of treatment ?
In the US nih has a veo ibd study where they are collecting all the genetics of kids dx under the age of 8 to determine patterns ,best treatment and genetic links
Chop veo clinic is part of that study .

Not sure if there is something similar in Canada. ...?
Maybe at Sick Kids in Toronto ?

It took docs 9 years to be ask DS to be apart of it 🙄
 

Maya142

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Pilgrim, chronic inflammation is still inflammation though - I suspect that's why her FCP is high but not as high as when they find acute inflammation - 1000+. I wouldn't call scopes that show chronic inflammation pristine...better, definitely. But pristine (to me) suggests a totally healed bowel and if there's chronic inflammation then, that's not the case.

My daughter had one scope, about 9 months after being diagnosed. She was found to have a "beautiful" colon - all ulcers gone, all biopsies in her colon were completely clean (whereas with her scope at diagnosis literally every single biopsy showed both acute and chronic inflammation, as well as ulcers in her rectum and sigmoid colon). But there was mild inflammation in her TI - only showed up on biopsies, I think visually it looked pretty normal. Because of that mild inflammation, her GI would not call it remission. Even though it was really very mild inflammation.

I know there is a study at Chop where kids were followed after being put on a whole food Mediterranean diet - I believe chicken and fish were allowed in moderation, but like CIC said, it was mostly vegetarian. I'll see if I can track it down. I think it was done on kids with UC though - not Crohn's.
 
CIC I will get my twitter sorted out (login issue) and pm you for info.

MLP they did run genetics on her initially, for research, but I never received info on results.

Maya142 would love to see the study if you find it. Also, always having had visual damage in colon on scopes....I thought chronic inflammation on biopsies just meant she has had inflammation in the past. Thanks for clearing that up for me.

Optimistic - any developments with your son?
 
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