Calprotectin Levels...anyone had them done

Relax, MamaDove, I've been running the fecal calprotectin test for some five years or so now. WHERE did you get the idea that elevated fecal calprotectin levels indicated a high risk for cancer!!! Nah, nah. Uh uh.

I shared a LOT of correspondence w/Magne Fagerhol, one of the developers of the fecal calprotectin test thru the years until he retired.

I've never had a calprotectin result under 50. In fact, my lowest was about 150. My highest was 1500 something (Jan 08). I've been in symptomatic remission since 1999 or so. OCCASIONALLY some MILD symptoms, and I do mean MILD. But since I had a 20 year total remission after a resection I KNOW what total remission feels like. Symptomatic remission doesn't mean diddley-squat. What the calprotectin levels were telling us was that is WAS JUST symptomatic remission; despite no symptoms there was some mild disease activity going on.

When I do encounter mild symptoms I insist on a calprotectin test. When I see the numbers going down again I know we are on the right track and might insist on one more just to be sure. The WORST symptoms I've encountered since the Crohn's returned in 1998 were mild enough that my gastro, used to crohnies w/more severe Crohn's than mine, wasn't particularly concerned. But I was. Altho she doesn't have much faith in the fecal calprotectin test she humors me because she knows I will find someone else who will order it for me. (In fact, I did when she was out of town and her PA wouldn't order it). They became believers that my symptoms WERE important when the calprotectin test I insisted on came back above 1500! (Jan 2008)

Rather than worry about calprotectin numbers under 750-1000, watch the direction your levels are moving. If they are moving up, try some medication adjustment, watch your diet more closely, get adequate rest, reduce stress as much as possible, etc. When the levels start going down you know you are on the right track. Keep it up. (I resumed taking Pentasa which I'd quit taking in late 2007 and by March 2008 my calprotectin level was back down to 200+)

The "weak spot" of the fecal calprotectin test is that it is ONLY an indication of inflammation, it can't indicate where or why. And yes, cancer can raise the levels, the test can't differentiate between inflammation due to cancer or inflammation due to Crohn's, etc. All it can do is indicate there is some inflammation going on in the intestines.

But for someone like me, who has mild Crohn's, w/doctors considering me IN REMISSION w/no need for medication adjustment due to mild symptoms, this fecal calprotectin test is the cat's PJs and a real blessing. "They" might be satisfied w/"symptomatic remission" but "I" am NOT. With symptomatic remission there is still mild disease activity going on and we KNOW what even mild disease activity leads to over time - SCARRING, narrowing, partial obstruction and obstruction. Been there, done that, got the T-shirt, "ain't" going there again one dibblety-darn second before I have to!!!!

Question here. Why wouldn't a sed rate, c reactive protein and white blood count be just as good indicator of where we are going with our inflammation. What are you arguments of using the calprotectin levels instead. Also, which is more cost effective? Thanks in advance for your input.

I wonder if it would be worth it for me to get this test?

All my other markers, such as ESR, CRP, etc. come back as normal.

Are all gastroenterologists knowledgable or do I have to look to find one who thinks it's good?

Yes Illy it might be worth asking for this test if you are interested in it , but I don't know what it would cost, and on the website it says the test has only been approved by the FDA for research purposes (would this cause insurance issues?).

If you have concerns and the other tests are coming back normal this one might give another view. My GI mentioned that some people just don't return high CRP results even if things aren't going well. And like CrohnieToo said, the direction of the movement in results might be more important than the actual level returned.

I'll add: I have a high grade partial obstruction at my anastomosis from the 1978 resection. My Crohn's first occured in the mid-ileum, not at the TI/ICV are that is so common for it to first strike. I had a resection of 18" of the mid-ileum at Mayo Clinic in MN. I then enjoyed a 20 year remission. Symptoms began again in 1998. In late 1999 I returned to Mayo and SBFT confirmed inflammation and the high grade obstruction at the anastomosis AND in a new area near the ICV. The locals couldn't find the inflammation until 2003.

I have pushed for an insisted upon the nuclear White Blood Cell scan. They were using the Ceretec WBC scan, now I more often see it referred to as the Indium WBC scan. Whatever, I was the FIRST one in this area to have the Ceretec WBC scan for Crohn's disease in the small intestine. This test, like the fecal calprotectin test, can NOT indicate WHAT is CAUSING the inflammation BUT it does pin point WHERE in the small intestine the inflammation is located. There was a Dr Martin Charron who was having good success using the Ceretec WBC scan for screening pediatrics patients for IBD to avoid unnecessary colonoscopies. This was in Pittsburgh, PA, I think at a children's hospital if the dim recesses of my mind are kicking out the right info.

It is a nice EASY on the patient test. Unless things have changed some, they draw 50 ccs of blood via an IV butterfly type set, send the blood to the lab, the lab separates the WBC, adds a "marker", mixes well and returns the "marked" WBC cells back to radiology where they are injected back into the patient via that butterfly set. They then take films at various time sequences. You have to keep emptying your bladder before each film. The WBC cells flow to the areas of inflammation and clump there and thus the inflamed area(s) light up like a Christmas Tree on the films.

Again, this was a test I insisted on when my mild symptoms were scuffed off. But, the WBC scan which I don't bother w/anymore and the fecal calprotectin test are what spur me and are finally able to convince my gastro to adjust my medications accordingly. So far it has saved me from a second resection that Mayo has been suggesting since 1999. According to my recent (April 2008) CT Enterography at Mayo tho my "borrowed time" has finally DRASTICALLY shortened. BUT I've been pretty much symptom free again since late May so I'm just playing it by ear and won't be surprised if I end up at Mayo before the end of this year for the resection. *sigh* Meanwhile the Imuran AND Pentasa (I'm one of the fortunate ones, Pentasa DOES work for) is buying me that time so far and things are pretty quiet again. knock, Knock, KNOCK.

I've got it all worked out w/my family doctor and will inform my gastro when I see her next week. I promised I would NOT wait as long as I did for my first surgery, nor push my luck that far again before heading back to Mayo for the surgery. BUT I will NOT agree to surgery here - SO - IF I misjudge and do run into problems bad enough to send me to ER, he will order me admitted, put on IVs and an NG tube to empty my gut and stablize me and then ship me off to Mayo. He says they can fly me. I say I'm not paying for a medical flight! Its only a 12 hour drive to Mayo from here and there are commercial flights. Empty me out and stabilize me and I can just report to the ER at St Mary's in Rochester and be admitted and have the resection w/in 2 days maximum.

That's my plan and I'm sticking to it. knock, Knock, KNOCK (God looks after fools and he has taken EXCELLENT care of me all my life).

 

Met with my doc yesterday and we went over results...He was quite excited by the 'results' due to the fact I look like a 'model' (his words not mine) yet I am so sick (again his words, not mine, I know I'm sick)

 

He has now ordered more bloodwork, the estrogen levels I have begging for again due to the link between my cycle and rectal bleeding, however, I am now bleeding mostly every day...UUUGGGHHH!!!! He also ordered PTT/INR and all the vitamin levels...He wrote on my diagnosis ~ Ulcerative Colitis (not Crohn's like my GI was pushing), malabsorption (due to the fecal fat level, which I have been lowfat for 18 months), bone pain and easy bruising...

 

He is SURE I have UC, not Crohn's and gave me samples of Lialda, which ticked me off cause I am off all meds and trying LDN, diet and alternative medicine and to throw pharma in the mix again means he is not hearing me...What else is new...

 

But I have accomplished everything I set out to do which was start LDN, get the CDSA and the Sage delayed food allergy testing, now to wait for the estrogen level which my new doc was quite surprised when I mentioned the link in my case and he couldn't grab the lab slip fast evough...He is once again as curious as I...I know I will eventually find out what is CAUSING the inflammation and will likely be able to find the fix for me...But I am positive that meds aint it...The LDN I began after much dwelling on it because it makes sense to me (and many others apparently) Being on this planet 40 years, I have kept detailed timelines of when things began for me and I will get to the bottom of all this, even if it's on my own (well, not completely, I get by with a little help from my friends ON THIS BOARD and another) I have not benefitted AT ALL from seeing specialists EVER...Useless in my case...So I feel I am where I need to be now, getting closer everyday

 

CrohnieToo, your knowledge is empowering to others...I find hope in every new twist and turn these illnesses have guided me through...Without your help and others I would be stcuk listening to the 'white noise' of my GIs blather 'you have Crohns, you will be dead in a year if you don't start Remicade'...Blah, blah, blah...

 

Someday I will fill out my profile on here, it may be too long to be allowed, but I will try to condense it...It really shows that you can come back from anything, as long as you have 'faith' in yourself (not the religious aspect) and 'hope' that the answers will eventually come to you...I have both It has gotten me this far and along with all of you, I am confident I will come out better than I went in...

 

Hope more come along and decide to get these tests offered by Genova, my doc felt they were invaluable in my case and was glad for me that I was so adamant about ordering the seperate one 'calprotectin', he recalls smirking and chuckling when I told him to sign the form and he read all the 'add-ons'...He isn't laughing anymore, in fact today he is calling in for some more test kits to give to certain patients that he needs answers for...What we go through actually benefits others Doing the happy dance...

 

Have a great day everyone, Peace~MamaDove

downunda and CrohnieToo, thanks very much for the info!

I think my crappy insurer will use the "we don't cover it cause the FDA hasn't approved it" excuse.  that's how they got out of the capsule endoscopy. darn *e***!

anyway, I do have Medicare, at least they take it out of my check, but I have to register it or something.  I was considering keeping that $100 or so a month to reduce financial stress, but if they cover more tests than insurer, might be worth it.  my experience with elderly parent is even if they do cover something it' s never 100%, more like 15%, and I'm stuck with the rest, unless the physician accepts assignment, which very few of the top-end physicians seem to do, at least, in my area.  the ones that accept it usually have very little time to spend with patients, also.  think I'll start another thread about this...

Illy, I haven't had the CE altho I would really have liked to. I insisted we do the Agile Patency Capsule first since we know I have a high grade partial obstruction at my old resection site. Good thing I did!

I swallowed the APC on 26 Feb, I have the EOB and Medicare covered the office call but I see no charge for the APC. Medicare did pay their 80% of the xray done on the 27th to determine whether the APC had passed or not. It hadn't!

I thought the PCE had been approved for reimbursement by Medicare. I'm sorry to read that it hasn't been.