Crohn's Disease Forum » Your Story » Totaly freaking out

07-05-2014, 09:18 PM   #1
Join Date: Jul 2014
Totaly freaking out

So, here's the sitch:

I'm 29 and have always had a super nervous stomach. Like bad. Like seriously every time anything remotely distressing happens, my stomach goes ape s**t. Just bonkers. And so I was diagnosed with IBS a little while ago (after a bunch of blood work, and endoscopy and sigmoidioscopy (sp?)) And I totally accepted this diagnosis.

However, two weeks ago I started feeling really bad. Like these weird waves of crampy pain accompanied by diahrriah (sorry to be gross but that was what was happening) and my stomach was making awful noises. Like a train or something. Or like water going down a drain.

I assumed that it was some kind of food poisoning, because honestly that's what it felt most like. However, after 48 hours it did not go away so I went to my doctor, who said it was mostly food poisoning, but ran a whole panel of blood work, including crp/esr. Totally normal. But for some reason, I don't really know why, I asked for the calprotectin test. I just asked for it. I guess because I read about it on line.

So, i took the test last Sunday and in the interim week, things have totally gone back to "normal." I've been eating fine. Stomach is back to its normal level of queesyness. I'm typically seriously anxiety ridden though, just generally. So, whatever. Totally forgot about the test.

Anyway, today i get a call from the doctor who says my levels came back high: 230, on the test that is out of 150. So, I have been totally freaking out. The doctor: not concerned at all!!! Says it was probably from whatever food poisoning I had. He says since I've never had a full colonoscopy he can do one on wednesday if I want, but that he expects to find "minor irritation and redness" or "nothing."

So, I guess me questions are::: has anyone had an outlier calprotectin result that has to do with something bacterial? Also, has anyone had a result in the 200s that has turned out to be something horrible? Or conversley, nothing? In talking to the doctor I brought up Crohns and he was basically just kind of like, "its unlikely." But isn't that the point of the test is to suss out ibd? And they make upper limits for a reason, right?

I'm just really sad right now, because I had been feeling so good, and now that I got this news I feel bad again.

If anyone can offer any advice that would totally rule!!
07-05-2014, 09:42 PM   #2
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DJW's Avatar
Join Date: Jul 2013
Location: Ontario

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Hi and welcome.
Is the doctor a GI specialist? Crohns can be tricky to diagnose, even by specialists.

There is an undiagnosed subforum you may find helpful. Unfortunately there are a lot of people in the same situation as you.

Sending you my support.
Crohn's Disease
DX 1978 (12 yrs old)
Ileostomy at 19

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07-05-2014, 09:45 PM   #3
Join Date: Jul 2014
Hey DJW!

The doctor is a GI specialist. Apparently, a fairly reputable one, in NYC. So that's why i'm confused.

Have you had your Calprotien levels checked? If so, what were they?
07-05-2014, 09:56 PM   #4
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DJW's Avatar
Join Date: Jul 2013
Location: Ontario

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I was diagnosed so long ago I don't remember specific results any more.

I also had a severe case and was diagnosed on the first visit to a pediatric GI specialist.

Others will be along who have been diagnosed more recently.
07-06-2014, 07:59 AM   #5
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Clash's Avatar
A fecal calprotectin test doesn't necessarily suss out IBD only that you have inflammation in your GI tract. The inflammation can be from different things, even over use of NSAIDs. I'm assuming the lab used was Quest since the upper normal was 150, with labcorp the upper limit is 50. But, in saying that, there can be outliers and most severe CD flares run in the 1000s.

My son has CD, during a severe flare his result was 1700 which was validated by other testing. Then during a colonoscopy that showed a bit of simmering inflammation his result was around 300.

I don't have CD, but since I was having a bit of GI issue, I had colonoscopy, imaging, endoscopy, lab work and fecal calprotectin. My result was 163(or there abouts) but no test showed anything out of the norm.

I would have the colonoscopy, just because a sigmoidoscopy doesn't show much. I would ask that plenty of biopsies are taken and hopefully the GI will scope all the way into the last part of the small intestine, through the ileocecal valve.

If symptoms still present and colonoscopy is normal I would push for imaging or pill cam to check out the small bowel.

Good luck.
Mom to
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
07-06-2014, 08:06 AM   #6
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Join Date: Dec 2010
Location: United Kingdom

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Calprotectin levels can rise in gut infections. I would go with the colonoscopy, and if clear repeat the calprotectin test in 3 months to make sure it is back to within normal limits. If not they may want to look at your small bowel with different tests.
Diagnosed Crohns small bowel 2010,Gastroduodenal crohn's Jan 2012. Gastroparesis june 2014.
Duodenal perforation/peritonitis nov 2011. Portacath placed Nov 2013. Gastric pacemaker 2015.
Perforated jejenum/peritonitis oct 2015, PEJ for enteral feeding nov 2015

On Humira every 7 days, intermittent iv iron, regular blood transfusions :faint:
On TPN since March 2016.

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