Fecal elastase test vs pancreatic stimulation ???

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sanfloraine

Guest
I am the mom of a 4.5 years old child in limbo who may or may not have CF. Briefly: several negative sweat tests, 2 genetic tests that both came back with a variant that's known to be related to pancreatic problems but nothing else.

And 5 fecal elastase tests over the years that came back ranging from 150 to 87 (last one recently), done at least in 2 different labs, collected by either my husband or I. Had been diagnosed as PI. And one pancreatic stimulation test recently that came back all fine, the GI doctor told us: he has no pancreatic problems, give him immodium when he has diarrheas.

He has had diarrheas problems starting at 13 months old (awful smell, undigested food that floated in the toilets). He was on ZenPep for years, we stopped it except when we go to the restaurant. His stools are fairly ok most of the time but he still has loose stools here and there that he cannot control (ex: 3 in a week(BATHROOM)). He also has minor asthma issues and has had 2 sinus infections. He is doing good right now.

I don't want to push CF as a diagnostics for my son, right now I am ready to forget that I ever heard about CF. But I am puzzled as why his fecal elastase tests have been bad - the GI doctor told us: it's not a reliable test. Really?
 

jshet

New member
Hi scanfloraine, probably not much help because my son has only ever had the fecal elastase test. Do not really know much about the pancreatic stimulation test. I was wondering though if your child has been tested for celiac disease? My son also has it along with cf, and he had constant diarrhea with undigested food in it until the disgnoisis.
even if your child tests negative for celiac disease, they could still be gluten sensitive which would cause the symptoms you describe also.
have you kept a food diary? Keeping track of everything he eats, how much, and what time each day along with keeping track of the types of stools he is having daily, you may find a pattern of what they are eating that could explain their symptoms. You should keep track for atleast a month. It seems tideous, but may be able to spare your child the discomfort of experiencing this weekly, and you the terrible feeling of not knowing what is wrong with your child.
good luck, and i'm sure someone with experience with both of these tests will respond soon.
 

Beccamom

New member
My daughter has has both fecal elastase and pancreatic stimulation. My understanding is that if done correctly pancreatic stim is more accurate, but it is rarely done and so often not done correctly. Did your child improve with enzymes?
 
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Gibson75

Guest
Floraine
My 3 old is PI and on creon since 12mths. His GI doc says CF but CF specialist has him in grey area. He had pancreas stimulation test and that was to rule out any other diseases. He also had too much fat in his stool when we did a 5 day gathering and test of his stool. He continues to have neg sweat test. He has 1 copy of DF508 and another mutation with unknown consequence but is linked to pancreas issues. He has daily cough and twice cultured staph A. He gets iron and protein deficient and wrinkles excessively within minutes of being in the water
I would be interested to know your child's mutation???








QUOTE=sanfloraine;1023632]I am the mom of a 4.5 years old child in limbo who may or may not have CF. Briefly: several negative sweat tests, 2 genetic tests that both came back with a variant that's known to be related to pancreatic problems but nothing else.

And 5 fecal elastase tests over the years that came back ranging from 150 to 87 (last one recently), done at least in 2 different labs, collected by either my husband or I. Had been diagnosed as PI. And one pancreatic stimulation test recently that came back all fine, the GI doctor told us: he has no pancreatic problems, give him immodium when he has diarrheas.

He has had diarrheas problems starting at 13 months old (awful smell, undigested food that floated in the toilets). He was on ZenPep for years, we stopped it except when we go to the restaurant. His stools are fairly ok most of the time but he still has loose stools here and there that he cannot control (ex: 3 in a week(BATHROOM)). He also has minor asthma issues and has had 2 sinus infections. He is doing good right now.

I don't want to push CF as a diagnostics for my son, right now I am ready to forget that I ever heard about CF. But I am puzzled as why his fecal elastase tests have been bad - the GI doctor told us: it's not a reliable test. Really?[/QUOTE]
 
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sanfloraine

Guest
Sorry later answer.

Jhset: I have Celiac Disease myself - before being diagnosed a few years ago my symptoms were acute constipation, no diarrhea at all. I insisted our son had 2 blood tests for that when he was younger and then he had an endoscopy: all negative. Plus eating bread seem to help his diarrhea symptoms. He does have a milk allergy but we have always been careful with that.

Beccamome: yes enzymes definitively helped when he started them at 18 months old. Now he has been off them for about 2 months. He has very loose stools here and there, complains about belly pains at times. I still think some fatty food he eats at school give him problems. Not sure what to do really: put him back on a small amount of enzymes at lunch or not?

Gibson75: my son also had way too much fat in his stools when we did the 72 hours test last August. The doctor now says: unreliable test. For this doctor the stimulation test is the gold standard and all the fecal tests are trash. He seems very biased.

We're about to move (again) to another city and I guess we'll try to find a new GI doctor that may be able to shed some light on our son's GI issues. Sorry I don't remember the variant he has.
 
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sanfloraine

Guest
Quick update

Update without update.

My son had a 3rd most complex blood test that ruled out Coeliac disease one more time.

Because his last GI doctor had stopped the Zenpep almost a year ago, he does not take enzymes anymore. I totally changed his diet 6 months ago: he now eats as little fat as possible, very dry diet. Almost everything is cooked in the microwave without oils/sauces... and very little processed food. We don't eat out anymore and I cooks all his meals for school. Not the best taste but the diarrhea are almost gone.

So fats = diarrhea, less fat = less diarrhea - which I knew. Sounds like CF, no?

Right now i have stopped fighting for a diagnosis, my poor son is stuck with eating something close to a Neanderthal diet but that does the trick.
 
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