Update on GI appt regarding elevated fecal calprotectin level

[Ihurt]

So I had an apt with my GI doctor about my fecal calprotectin level ( mine was 348.5) normal was supposed to be anything under 162. I asked him about it and he did not seem to concerned. He said it means there is some inflammation( WBC's). He said many things can make this go up ( bacteria, virus, etc..). He said IBS can even cause low levels of inflammation in some people! I really do not know what to think.

He also said because my colonoscopy I had two years ago was normal and so were the biopsies than were taken that he highly doubts I have UC or Crohns. He did not feel it was necessary to do any further testing. I had a very hard time with the colonoscopy when I had it a couple years back. I have IC of the bladder as well and everything seems to upset my bladder and cause extreme pain. He said he did not feel it would show anything.

I guess I just do not understand. I mean how can a colonoscopy that I had two years ago have anything to do with how I am feeling now?? I mean things can change over time I would think. He said my calprotectin level was not that high at all in his opinion.

So that is where I am at. I still feel like complete crap, my intestines are painful and crampy and my bladder is in soooo much pain! He told me I could take levsin for the pain and cramping. I just am at a loss . I have these very painful conditions( especially the IC bladder) and also my intestines are in pain, this is just hell. I am beginning to think most doctors really do not know much about these chronic types of illnesses. I have not had any luck with western medicine. They just do not seem knowledgeable about chronic illness in general.

 

[my little penguin]

This just came out

Are We Exposing Patients With a Mildly Elevated Faecal Calprotectin to Unnecessary Investigations?
J P Seenan; F Thomson; K Rankin; K Smith; D R Gaya | Disclosures
Frontline Gastroenterol. 2015;6(3):156-160.

ABSTRACT AND INTRODUCTION
Abstract

Objective Faecal calprotectin (FC) is a non-invasive marker used to differentiate irritable bowel syndrome from inflammatory bowel disease (IBD). However, false positives are common. We sought to determine the diagnostic yield of investigation in patients presenting with new lower gastrointestinal (GI) symptoms and a mildly elevated FC (100–200 μg/g).

Design Retrospective study of electronic patient records.

Patients Patients aged 16–50 years with new lower GI symptoms and an FC 100–200 μg/g were identified from our biochemistry laboratory database between September 2009 and 2011. Patients were excluded if they had a previous FC >200 μg/g, were taking non-steroidal anti-inflammatory drugs (NSAIDs), had IBD, positive stool cultures or 'alarm' symptoms.

Setting Secondary care gastroenterology clinics.

Results 161 patients (103 female patients) were identified. Mean age was 37.3 years with a mean FC of 147 μg/g. 398 endoscopic, radiological and histological investigations were undertaken in 141 patients (an average of 2.8 investigations per patient). 131 colonoscopies were performed with abnormalities in only 24 (18.3%). In patients with a macroscopically normal upper GI endoscopy and colonoscopy, the diagnostic yield of any further investigation was only 7.3%. The negative predictive value (NPV) of an FC 100–200 μg/g was 86.7% for any pathology and 97.5% for significant luminal pathology (IBD, advanced adenoma or colorectal carcinoma). After a mean follow-up of 172.4 weeks, IBD was the final diagnosis in only 4 (2.5%) of patients.

Conclusions In adult patients under 50 years old presenting with new lower GI symptoms, the NPV of an FC between 100 and 200 μg/g in excluding significant organic GI disease is high.

From
http://www.medscape.com/viewarticle/846574?src=wnl_edit_tpal&uac=185734DZ

 

[Ian_H]

So I had an apt with my GI doctor about my fecal calprotectin level ( mine was 348.5) normal was supposed to be anything under 162. I asked him about it and he did not seem to concerned. He said it means there is some inflammation( WBC's). He said many things can make this go up ( bacteria, virus, etc..). He said IBS can even cause low levels of inflammation in some people! I really do not know what to think.

He also said because my colonoscopy I had two years ago was normal and so were the biopsies than were taken that he highly doubts I have UC or Crohns. He did not feel it was necessary to do any further testing. I had a very hard time with the colonoscopy when I had it a couple years back. I have IC of the bladder as well and everything seems to upset my bladder and cause extreme pain. He said he did not feel it would show anything.

I guess I just do not understand. I mean how can a colonoscopy that I had two years ago have anything to do with how I am feeling now?? I mean things can change over time I would think. He said my calprotectin level was not that high at all in his opinion.

So that is where I am at. I still feel like complete crap, my intestines are painful and crampy and my bladder is in soooo much pain! He told me I could take levsin for the pain and cramping. I just am at a loss . I have these very painful conditions( especially the IC bladder) and also my intestines are in pain, this is just hell. I am beginning to think most doctors really do not know much about these chronic types of illnesses. I have not had any luck with western medicine. They just do not seem knowledgeable about chronic illness in general.

Yea the calprrotectin test is a very generalized test. I am always for the most part at 350-500 and during flares well over 1500. With a normal range being 50-100. But I have even after being diagnosed and having problems been in the normal range. But I agree, 2 years since your last colonoscopy is enough time for things to change. I think most importantly having the right doctor is key. If you are unhappy with yours don't be afraid of a 2nd opinion. It took 4 GIs before I found my doc today. Best of luck!

Ian

 

[Ihurt]

Thanks for the replies.

My little penguin: Thanks for the info. Very interesting.

Ian-H: Thanks for the reply. My GI doc is super nice and has a lot of years behind him( he is head of the GI department there). I just kind of feel like any new issue I have he immediately blames it on IBS. He did not seem to overly concerned about the calprotectin level. He said the test in not very reliable in terms of telling a person what is going on. He said it just means there is some level of inflammation, but he said it can be from anything. I agree with you though, lots of things can change in 2 years. I think he just wants to save me having to go through any procedures due to the complications I can get from them only for him not to see anything. I did not think calprotectin levels could raise with IBS though and he said they are learning that there can be low levels of inflammation with IBS. I am just confused by it all.

 

[Lady Organic]

I'd seek a second opinion.

 

[2thFairy]

Have you tried taking the Levsin? It does help some people with their pain.

 

[Ihurt]

Thanks everyone for the replies.

2thfairy: I do have hyoscyamine which I believe is levsin. I have taken it before in the past. I have some and may try it again. They are little tablets that dissolve in the mouth. I am just in so much agony. This cannot be IBS. I have never known anyone with this much pain from IBS. My husband had a bout with IBS a few years ago and he said his was definitely correlated to what he was eating and drinking. For me, I can be eating the blandest diet( which I am and have been for years) and I still am in pain and having issues. This is why I doubt IBS. I am probably going to have to seek about a second opinion at some point. This is so frustrating .

 

[my little penguin]

I an say ihurt I made the same statements for Ds
That he has avoided xyz no improvement
Until we tried the crohns exclusive diet
Which oddly makes a huge difference
Granted he is also dx with Ibd and on strong meds
But when we had to hold meds ( infection) his gi tract was ok while on the diet
But his joints were not .
Still think a second opinion might be good
Ds also btdt on all antispasmodics etc for belly pain since his scopes and labs looked good
They didn't help but worth a try

 

[2thFairy]

Yes, hyoscyamine is Levsin. I have used it before myself and it helped take the edge off.

 

[Ian_H]

Thanks for the replies.

My little penguin: Thanks for the info. Very interesting.

Ian-H: Thanks for the reply. My GI doc is super nice and has a lot of years behind him( he is head of the GI department there). I just kind of feel like any new issue I have he immediately blames it on IBS. He did not seem to overly concerned about the calprotectin level. He said the test in not very reliable in terms of telling a person what is going on. He said it just means there is some level of inflammation, but he said it can be from anything. I agree with you though, lots of things can change in 2 years. I think he just wants to save me having to go through any procedures due to the complications I can get from them only for him not to see anything. I did not think calprotectin levels could raise with IBS though and he said they are learning that there can be low levels of inflammation with IBS. I am just confused by it all.

Good glad you are happy with your GI. But I feel like most GIs, including my own, blame everything on our IBD that is going on with our bodies! haha. If you have any questions don't hesitate to ask!