Can you be pancreatic sufficient if ddf508? Stomache aches if no enzymes?

[Aboveallislove]

For the first time I was unable to get our son to take his enzymes. Going back to the new medicine routine at lunch, but at breakfast he had 1/2 a cup of his high calorie drink. I thought he'd have a nasty stomach ache, but only issue was when he started to swallow air from crying. So, wondering:
1) Is it possible he is pnacreatic sufficient as a ddf508? How do they test?
2) Don't CFers get a nasty tummy ache without enzymes? Or is it just that they don't absorb?

Don't worry, he will have his enzymes before any more food, but just wanted some thoughts. He's associating his enzymes with tummy aches which I'm pretty sure are acid reflux (after him having a ton of greasey food several days in a row--and have cut back on that too).

Thanks,

 

[Ratatosk]

They can have SOME pancreatic function; however, for the most part they tend to be PI. DS has missed enzymes in the past once in awhile with no side effects -- mostly loose stools and no stomach discomfort -- like when he ate about 4 chocolate truffles at Thanksgiving and didn't tell anyone or they once forgot at daycare.

Over TIME though not taking enzymes can lead to weight loss as well as possible bowel obstruction. When DS had his blockage a few years ago it was because his enzymes weren't getting to where they were supposed to due to adhesions/scarring from his original surgery.

 

[TheDude92]

I have noticed that as well with my CF. There have been times I have forgotten my enzymes and I thought I would pay for it later on with a stomach ache. Yet I didn't though makes me wonder if my pancreas picks and chooses its days when it works right. could even be what food I have eaten as well. Not saying to abondon enzymes that is quite foolish but try to get your son in the habit of taking his enzymes. My parents made me learn on my own what happened if I didn't take my enzymes and believe me I learned fast. Give it time and he'll realize the importance of taking them.

 

[Printer]

When I was younger and still had SOME pancreatic function, I could skip a meal without a problem. Now I can't skip a cookie without a pill.

So the answer is YES, he can skip a meal and still be PI. To test, stop his enzymes until he is in pain.

Bill

 

[Printer]

The acid reflux can be very dangerous and should be treated.

Bill

 

[Aboveallislove]

Thanks bill. He is on both zantac and Prilosac. He loves grease and was focusing on weight but too much triggered acid reflux break through. Mostly it is controlled so focusing on foods too limit.

 

[kmhbeauty]

For the first time I was unable to get our son to take his enzymes. Going back to the new medicine routine at lunch, but at breakfast he had 1/2 a cup of his high calorie drink. I thought he'd have a nasty stomach ache, but only issue was when he started to swallow air from crying. So, wondering:
1) Is it possible he is pnacreatic sufficient as a ddf508? How do they test?
2) Don't CFers get a nasty tummy ache without enzymes? Or is it just that they don't absorb?

Don't worry, he will have his enzymes before any more food, but just wanted some thoughts. He's associating his enzymes with tummy aches which I'm pretty sure are acid reflux (after him having a ton of greasey food several days in a row--and have cut back on that too).

Thanks,

Hello, I am dd508 and I have never taken enzymes. I am almost 27 years old and a very good weight. I can not at all have greasy foods. When I have anything greasy, I will be hurting for days. Greasy saturated fat is just bad for you period, and should not be consumed. I would try more monounsaturated fats ( the heathy fats) I have no problem digesting these at all. I can put a ton of olive oil, smart butter, avocado, ect on my food and it is easily digested. Hope this helps! The worst feeling is eating greasy food for days and being on the toilet non stop. With a healthy diet, I no longer get gas or tummy problems!

 

[arcjoshua]

1) Is it possible he is pnacreatic sufficient as a ddf508? How do they test?

I know one way to test for pancreatic sufficiency is the fecal elastase test, which is a lab test done using a stool sample. I don't know exactly how it works, but I believe it checks the levels of enzyme or enzyme biproduct in the stool sample, and low values can indicate poor digestion (which can be a sign of pancreas problems).

My two boys tested in normal range for this so they are considered pancreatic sufficient and don't take enzymes. But, with every really foul-smelling diaper or bout of constipation, I wonder if/when they might loose that sufficiency.

Anyone out there who lost pancreatic function over time care to share how it happened so I know what to look for? Also what other tests do they use to measure how well your pancreas is working?

Thanks!

 

[Printer]

The fecal elastase test measures the amount of fat in the stool. The fat is undigested, therefore determines a lack of pancreatic enzymes. You cal also watch for stool that floats and may have an oily residue.

In my case, I initally lost some pancreatic function as a result of the many attacks of pancreatitis. This loss of function continued, manifesting itself as a dull pain coming on a few hours after eating a meal. An increase in enzymes would correct this problem until more function was lost. Then more enzymes, etc.

As a Mom, look for stomach aches, floating stool and stool that requires two flushes.

I hope that this helps.

Bill

 

[SaraNoH]

I have noticed that as well with my CF. There have been times I have forgotten my enzymes and I thought I would pay for it later on with a stomach ache. Yet I didn't though makes me wonder if my pancreas picks and chooses its days when it works right. could even be what food I have eaten as well. Not saying to abondon enzymes that is quite foolish but try to get your son in the habit of taking his enzymes. My parents made me learn on my own what happened if I didn't take my enzymes and believe me I learned fast. Give it time and he'll realize the importance of taking them.

Ugh, I'm the same way. When I was younger I'd have hell to pay if I missed anything, even if I took 2 less than I should've. But now... I've gone entire weekends without a pill and nothing. It's kind of disconcerting actually. I don't even know what exactly will give me stomachaches nowadays, it's changed so much. Randomly I'll get one and think, "Okaaaay.... what did I do this time?" I think my pancreas is bipolar.... I'm deltaF508 so I don't know if you're the same?

 

[CyrilCrodius]

I was tested as pancreatic insufficient since I was a baby. They test me every time I go to the hospital. I've been taking 4 cotazym ESC 20 since I was 6 years old. It never changed. I, too, can skip a meal, but it really depends on what I'm eating. If it contains a lot of fat, I'll get greasy stools and probably a tummy ache... though I don't really notice them anymore. I guess what happens is that the fat in low fat food doesn't get digested any more than fatty food, it just goes unnoticed because there is much less of it.

I know that Boost (high calorie nutrition drink) gives me tummy ache, but it's a weird one. The ache is almost instantaneous. It's not like when I eat something fatty and forget to take my enzymes, then I'll have a very bad tummy ache a few hours after. It's almost instantaneous and it seems like it hurts the small intestine, while fatty food seems to hurt the large intestine (shallower pain versus deeper pain). The pain is different and not in the same area. I only started having this kind of pain about 8 years ago. Thinking of it, I should probably tell my doctor about it. Hahahaha.

So anyway, I tried taking my enzymes and waiting something like 10 minutes before drinking a bottle of Boost and it didn't change anything. It hurts anyway. So it's probably something else.

 

[TheDude92]

Yeah if I remember right im 508. I would say watch out for fatty foods and greasy foods. Those two will mess with your stomach if you skip the pills. Anymore I rarely skip my pills because I don't know about you all but, I rather spend my day doing something else rather than sidelined on the toilet lol