Do FC levels change when in remission?

[trinity1913]

Are they completely normal, or just not as badly elevated?

Will inflammation in the esophagus have elevated FC?

And a side note, why is it a "bowel" disease when it can cause inflammation all the way to the mouth?

Can FC be a false negative?

The reason I'm asking all this is that last year we did a "complete" workup, and I don't for the life of me remember if it included FC, but it was a GI with a good reputation in an urban children's hospital. Surely it would have been included, and if it was, it was "normal". I'm going to request the records from there for the new GI, but I was wondering if that was normal last year, is something going to be different? (Last year she was asymptomatic when we did the stool sample, this year we're 2 weeks into our "issues".

 

[Farmwife]

Your whole digestive track is considered "your bowels".
You then can divide it from small bowel (small intestine, which I guess includes your mouth, esophagus, stomach) and large bowel (colon).
Than you can break it down even further but don't have the time.

OK, onto the FC test.
Grace was and still is normal. This test is not a good indicator for her!

 

[Catherine]

This is our experience with faecal calprotection results.

Sarah dx with small bowel Crohn's dx, highest reading 620. This is when was purposely in clinical remission. One 24 hours period of severe pain which resulted in a trip to ER are them starting her on pred. Low reading 82.

My self, FC 19 dx IBS with 30 year history. Clear scopes except for stomach inflammation.

Youngest daughter Kerry FC 19, low iron, haemoglobin and vitamin D. No clear bowel symptoms. No further testing.

My sister's son, full testing done, FC 500's. Symptoms cleared up FC returned to normal. Still clear approximately 18 months later.

Unlikely to give a false positive. But would be best to get sample when symptoms present. High FC can result from conditions other than IBD but it a specific test for inflammation of the bowel.

 

[Farmwife]

OK I'm back!

I forgot to mention that we still do the fc stool test and now check for "trends".
Most will have a fc number above a 1000's in a full flare.
For Grace she's never been about 60's in a full flare
but yet have scopes to prove she was in a flaring.
Now her numbers are below 20 and scopes did she mostly remission for her.
So right now we watch the "trend" for Grace.
BTW, Grace's GI doesn't like using this test for any of her kids.

 

[DanceMom]

My daughter has had a FC of 460 with no symptoms and a FC of 20 when she was sick as a dog. So I'm not sure what I think about this test (although I'm currently angry at my insurance for denying coverage....). I'd say that a high reading means that something is definitely going on, but a low reading does not necessarily mean everything is fine. Clear as mud, right?

 

[trinity1913]

So what I am getting from this is that

A, it is entirely possible that since she was asymptomatic last year, it doesn't mean that she was OK per se, just that the levels were low right then...

B, it is not 100% anyway (am I right that I saw it is less accurate for small bowel than large?)

C, if it comes back negative now (we have symptoms now), if I feel like there is still something wrong, I should push for scope?

The doctor said in an email I sent that labs were more important in diagnosis than symptoms (ok, I get that, they want black and white), and that she doesn't scope unless it is urgent and if FC was negative, she would not consider it urgent. She said if I pushed her, she probably would, but that she would strongly discourage as she feels like FC will be positive if there is any IBD. So it sounds like she thinks it is 100%.

I'm worrying about something that hasn't happened yet.

 

[DanceMom]

GI symptoms does not always equate to IBD. If you think something is wrong with your daughter then keep pushing for answers. If one doctor can't or won't figure it out - find one that will. You know her better than anyone and will always be her best advocate.

My daughter's test results have been mixed. 1 elevated FC....the rest were very low. An MRE with possible thickening and inflammation. A clear CT. 2 pill cams that showed ulcers...the others normal. 5 scopes and 2 showed acute inflammation. Labs never show inflammation. But she DOES have something wrong and I'm committed to figuring out exactly what that is. This is a great place for advice and support, even if your daughter does not have IBD. This journey is not an easy one.

 

[trinity1913]

I guess the reason I tend to think in terms of IBD is because of the family history. It is strong. Half Sister (my older daughter) has Crohns, and mom and my sister both have UC. And she is presenting textbook symptoms, if that makes sense, except for the fact that esophagus inflammation is a little more rare, and she keeps saying that her throat and chest hurt a lot. I know it could be something else, and I don't WANT IBD. I'd much rather it be some lovely parasite that could be killed off and never come back. But the fact that we've been fighting back and forth with this for a while now makes me believe it won't have the "easy" diagnosis from labs, if that makes sense. We've done a decent amount of those already with no results.

 

[Catherine]

I understanding is the FC results tend to be lower for small bowel disease.

Do have copies of blood tests for a period of time? Can you see any trend in the results.

Example look at the haemoglobin level. Is trending up or down? Is staying about the stay?

 

[trinity1913]

I switched gi practices so I have to go get records. And honestly am still getting to the point where I want to see the numbers myself instead of just trusting what the doctor says. But after they are gathered, I will look for what trends I can find. Thanks!

 

[Jmrogers4]

Yes, I always want numbers and have a spread sheet I plunk all numbers from labs into to look for trends. My son will have symptoms but nothing shows up on labs, we joke about doing labs as they are always in the normal range. We look for trends to coincide with symptoms so normal ESR range is (0-15) at our lab, massive inflammation shown throughout small intestine shown on MRE, ESR is at a 9 so being able to go back and look at my spreadsheet we know that a reading of 8-10 for Jack = inflammation. FC at these times in was 295 and couple of months later 385 but base taken at a time of remission (ESR 6) was 90 so while a lot of GI's would not consider those FC readings high even if they are above normal range (normal for our lab was <169).
My son is fairly asymptomatic as well so it makes it difficult to judge what is going on we know there was issues because he was not growing nor gaining weight which is interesting in itself as his GI says that is a systemic symptom but his labs never show as systemic (make sense?)
So I don't think it is black and white with labs my son is a prime example and I know he is not the only one. His GI even now refers to my spreadsheet if he has a question. We pulled FC last week when he was in for his infusion because he has lost weight and GI asked me what the numbers where when he was having inflammation because he knew that it was not a number he would have normally jumped on but wanted to be prepared for when he got the new number back if he needed to figure out what next.

 

[kimmidwife]

I agree with keeping track of the numbers and trends. I also have to agree that we have to keep track of this and stay on top of the doctors.