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Do those with CF have difficulty digesting protein?
- Thread starter Enzo2311
- Start date
What type of protein? DS has issues with nuts and is limited to the amount he can have. Despite enzymes if he has too many or if that's his main source of protein for the day, he ends up have issues (obstruction). No issues with meat -- chicken, fish, beef....
imported_Momto2
New member
I never had problems with straight protein, but if its fatty, gives me severe pain. Now as an adult, I puke it up within the hour if there's too much fat. And Enzo, there is no "one" type of CF. Everyone has a slightly different presentation and quirks. Need to figure what works for YOU and your body. For instance, pulmozyme and zithromax never did anything for me. Hypertonic saline works great though. I used to need huge amounts of enzymes, now I dont. Listen to your body and what it likes and doesnt, dont just go by the status quo. Typical CF diet says push the fat, but a fat-free diet works best for me. Stuff like that. Experiment intelligently and keep your doc in the loop.
imported_MaggieB
New member
According to my doctors, we have trouble with both protein and fat. Good luck!
Each person has different degrees of pancreatic insufficiency. Some people have issues with digesting certain foods. DS is on enzymes and doesn't have issues with dairy, meats, popcorn -- some people do, others don't. One of the things that drove me nuts early on about enzymes and pancreatic insufficiency was being able to tell how much was needed. When DS was a newborn we were always told to base # of enzymes on input and what came out (output). The brief time he was on pregistimil formula his output was the likes I'd never seen before, yet the nurse in the NICU assured me that bright green and well formed was normal.
Helenlight
New member
Hi Enzo, typically if you are pancreatic insufficient, then you will have trouble digesting fat and protein. This is because the pancreas is responsible for producing enzymes that break down both fat and protein. Do you know what your pancreatic status is? Do you take enzymes? The basic guideline we have been given for our daughter's mutation (DDF508) is to use one Creon 10,000 per 6 grams fat or protein, and to try to use the same amount of capsules per day for each kg of body weight (she's 14 kg, so we use 14-15 capsules per day). That guideline works well for us and for others with DDF508 that we know. What does your team suggest?
Wats DS?
Also, my Drs want me taking 3 24KU with meals and 2 with snacks. That's what it says but I'm constantly seeing how my body reacts. Like I have a mass gainer shake I drink daily. So I'll take 3 pills with a 800 calorie milk based shake (powder then milk) and I can also eat a full 20 G protein clif bar and I only take 3 enzymes and I feel great afterwards. Here's the thing though, the shake comes with the pancreatic enzymes that Creon has, so it has lipase, protease and amalyse enzymes.
its so difficult cause I still can't get it right !
i have two forms of Delta f508. So what's the enzyme guideline for that?
Also, my Drs want me taking 3 24KU with meals and 2 with snacks. That's what it says but I'm constantly seeing how my body reacts. Like I have a mass gainer shake I drink daily. So I'll take 3 pills with a 800 calorie milk based shake (powder then milk) and I can also eat a full 20 G protein clif bar and I only take 3 enzymes and I feel great afterwards. Here's the thing though, the shake comes with the pancreatic enzymes that Creon has, so it has lipase, protease and amalyse enzymes.
its so difficult cause I still can't get it right !
i have two forms of Delta f508. So what's the enzyme guideline for that?
Stomach acid dissolves/destroys enzymes so the Px enzymes (like Creon) are enteric coated to survive the stomach. Then when they reach the intestines the acids are neutralized by a basic solution your body secretes. This same basic solution dissolves the enteric coating of the Px enzymes and makes the enzymes available to digest your food. So unless your shake's enzymes are enteric coated (not likely) then you'll still need to take Px enzymes when drinking the shake. Work out the exact amount during a clinic visit, taking note or keeping a journal of your bowel movements and what you eat for a couple weeks prior to meeting with your CF clinic's dietician.
DS = Dear Son
DS = Dear Son
Mike Brown
New member
Everyone is different, but meats can definitely be hard to digest. If you eat a meat you want to stick to lean meats and chew them up really well. I have a hard time with pretty much any meats except sometimes I can have turkey sandwiches. I really want a burger and fried chicken lol -__-
If you're having a flare up, stick to carbs as theyre pretty simple to digest.
If you're having a flare up, stick to carbs as theyre pretty simple to digest.
LittleLab4CF
Super Moderator
Enzo, you’re not alone in struggling to get enzymes and food just right, or even close in some cases. Being bloated, having unpleasant bowel movements, pain and nausea are the price of a CF gut. My experience with GI doctors and enzyme adjustment has been less than stellar. It's been my nature to study the science behind the foods, enzymes and bile and how our body digests food. Especially when I fear my doctor and I aren't communicating. There are things to know and do that will lower the cost of having CF, from a quality of life stance.
Ethan508 answers what happens to the enzymes in protein drinks/powder, or any uncoated pancrealipase enzymes, quite accurately. The reason for the enzymes in the products is interesting. The product promises delivery of specific amino acids that need the enzymes to reduce the protein like whey or soy to nice, freshly made amino acids. It is also extra insurance that the food is completely digested and you get every valuable calorie. I am trying an older formulation of enzymes called Viokase that is immediately released in the stomach, in combination with Creon or Zenpep. It typically isn't prescribed for CF pancreatic insufficiency because enteric coatings protect the enzymes and a significant amount of Viokase’s enzymes are destroyed by the stomach, just like you protein drink. I am doing this to reduce pancreatic pain. The detection of enzymes in the stomach and the high end of the duodenum stops the body from attempting to stimulate my pancreas.
You have read all the literature on Creon I am sure. The short of it for 4 year olds onto adults is 500 Units of Lipase up to 2500 units of Lipase per kg or 2.2 pounds of body weight per meal. So if you weigh 160 pounds, divided by 2.2 gives about 73kg in metric units. 73 X 500 = 36,500 and 73 X 2500 = 182,500 so the range per meal is somewhere between 36,500 and 182,500 lipase Units. There is an assumption that you are consuming 100 grams of fat at least, in a day. Look at all of your food labels and insure you are consuming that 100g or about 4 oz. of fat.
After too many years of not taking enough enzymes, I am realizing that everyone doesn’t have to live with huge volumes of soft, gooey feces that the term stinky is faint praise. Beginning with that 100 grams of fat, we have good and possibly reactive fats that might become a problem. True nuts, avocados and vegetable fats in general causes the production of bile and activation of the gallbladder. With CF we commonly have Small Duct Disease, making our extra thick and sticky bile hard to move. If we still have a gallbladder it probably won't deliver the bile on time. Bile breaks heavy fats down for further digestion by the Creon or such. Undigested fats begin to putrefy in the gut and that's why buzzards are always circling. By comparison, fats are critical for CFers and only by keeping an accurate accounting of what, how much and when you consume food with fats and the stools/ quality of bowel movements that are produced from that meal. I realize this is not fun but find an app that you can input foods you eat and be told how much fat is in it. Creon does have enzymes to digest fats, bile just improves the process, making it more efficient. The reason Lipase units are used to calculate how much Creon to take with a meal is Lipase digests lipids or fats as we call the food type.
Something you wondered a few years ago was if other CFers were poop watchers. If you want to optimize your digestion, the best way you have available is to strive for the perfect bowel movement, with dense, dark brown and formed turds. My stools used to exactly the wrong, the worst possible quality. It was like poop taffy, full of air, too light to really stimulate the peristalsis.
In the recent months I have been steadily increasing my enzyme intake. I had been on 4-5 Creon 16’s for meals and now I am on 4-5 Creon 36’s plus the Viokase. This is taking into account, I am a light eater. At 65, my metabolism is such that I only consume 1200 Calories on an average day.
Each increase in my Creon netted a gain in my weight. I normally am steady at 145 pounds and now I am sporting 160 pounds and some of my bloated gut has dissipated. The CF gut that you hate, will shrink with the proper amount of enzymes. As strange as it seems, well digested meals form perfect stools. But, when you are producing far less volume in heavier, dense turds, you need to increase your daily water intake. Good turds means you have absorbed the most and best possible nutrients to gain and maintain quality weight.
I realize that digesting protein started your question. Creon completely digests nearly 100% of all proteins that we consume as food including your supplements and such. Protein is a snap to digest. You want to discover with your logbook exactly what foods are well tolerated and digested as well as those you want to avoid. Everyone is a little different so you need to keep an accurate log for a month or two. Get your doctor on board to help you optimize the maximum safe amount of enzymes and your gut will love you and most likely you’ll get that muscular bulk you have been working toward.
One last consideration, and it’s new to me as well. Have your dietitian help you find a list of low and high FODMAP foods. A low FODMAP diet will reduce your bloating some and possibly quite a bit. Fermentable Oligo-Di-Mono-Di-saccharides And Polyols (FODMAP) is a mouthful but the concept is very simple. High FODMAP foods contain certain sugars or saccharides that we don’t have the enzymes to digest. Fructose is an example as well as all artificial sweeteners, or low calorie sugars. We don’t have the enzyme fructase so it is fermented by the bacteria in our gut.
A gassy gut is not a happy gut. More to the point, cutting out large portions of FODMAP foods will reduce the chronic inflammation in out bellies and maybe even make us feel better. A major FODMAP is wheat. It is pretty hard to totally avoid but the whole idea is to go for a low FOFMAP diet.
The goal of full digestion is worthy. A life of maldigestion is possibly what is happening.
Best Luck,
LL
Ethan508 answers what happens to the enzymes in protein drinks/powder, or any uncoated pancrealipase enzymes, quite accurately. The reason for the enzymes in the products is interesting. The product promises delivery of specific amino acids that need the enzymes to reduce the protein like whey or soy to nice, freshly made amino acids. It is also extra insurance that the food is completely digested and you get every valuable calorie. I am trying an older formulation of enzymes called Viokase that is immediately released in the stomach, in combination with Creon or Zenpep. It typically isn't prescribed for CF pancreatic insufficiency because enteric coatings protect the enzymes and a significant amount of Viokase’s enzymes are destroyed by the stomach, just like you protein drink. I am doing this to reduce pancreatic pain. The detection of enzymes in the stomach and the high end of the duodenum stops the body from attempting to stimulate my pancreas.
You have read all the literature on Creon I am sure. The short of it for 4 year olds onto adults is 500 Units of Lipase up to 2500 units of Lipase per kg or 2.2 pounds of body weight per meal. So if you weigh 160 pounds, divided by 2.2 gives about 73kg in metric units. 73 X 500 = 36,500 and 73 X 2500 = 182,500 so the range per meal is somewhere between 36,500 and 182,500 lipase Units. There is an assumption that you are consuming 100 grams of fat at least, in a day. Look at all of your food labels and insure you are consuming that 100g or about 4 oz. of fat.
After too many years of not taking enough enzymes, I am realizing that everyone doesn’t have to live with huge volumes of soft, gooey feces that the term stinky is faint praise. Beginning with that 100 grams of fat, we have good and possibly reactive fats that might become a problem. True nuts, avocados and vegetable fats in general causes the production of bile and activation of the gallbladder. With CF we commonly have Small Duct Disease, making our extra thick and sticky bile hard to move. If we still have a gallbladder it probably won't deliver the bile on time. Bile breaks heavy fats down for further digestion by the Creon or such. Undigested fats begin to putrefy in the gut and that's why buzzards are always circling. By comparison, fats are critical for CFers and only by keeping an accurate accounting of what, how much and when you consume food with fats and the stools/ quality of bowel movements that are produced from that meal. I realize this is not fun but find an app that you can input foods you eat and be told how much fat is in it. Creon does have enzymes to digest fats, bile just improves the process, making it more efficient. The reason Lipase units are used to calculate how much Creon to take with a meal is Lipase digests lipids or fats as we call the food type.
Something you wondered a few years ago was if other CFers were poop watchers. If you want to optimize your digestion, the best way you have available is to strive for the perfect bowel movement, with dense, dark brown and formed turds. My stools used to exactly the wrong, the worst possible quality. It was like poop taffy, full of air, too light to really stimulate the peristalsis.
In the recent months I have been steadily increasing my enzyme intake. I had been on 4-5 Creon 16’s for meals and now I am on 4-5 Creon 36’s plus the Viokase. This is taking into account, I am a light eater. At 65, my metabolism is such that I only consume 1200 Calories on an average day.
Each increase in my Creon netted a gain in my weight. I normally am steady at 145 pounds and now I am sporting 160 pounds and some of my bloated gut has dissipated. The CF gut that you hate, will shrink with the proper amount of enzymes. As strange as it seems, well digested meals form perfect stools. But, when you are producing far less volume in heavier, dense turds, you need to increase your daily water intake. Good turds means you have absorbed the most and best possible nutrients to gain and maintain quality weight.
I realize that digesting protein started your question. Creon completely digests nearly 100% of all proteins that we consume as food including your supplements and such. Protein is a snap to digest. You want to discover with your logbook exactly what foods are well tolerated and digested as well as those you want to avoid. Everyone is a little different so you need to keep an accurate log for a month or two. Get your doctor on board to help you optimize the maximum safe amount of enzymes and your gut will love you and most likely you’ll get that muscular bulk you have been working toward.
One last consideration, and it’s new to me as well. Have your dietitian help you find a list of low and high FODMAP foods. A low FODMAP diet will reduce your bloating some and possibly quite a bit. Fermentable Oligo-Di-Mono-Di-saccharides And Polyols (FODMAP) is a mouthful but the concept is very simple. High FODMAP foods contain certain sugars or saccharides that we don’t have the enzymes to digest. Fructose is an example as well as all artificial sweeteners, or low calorie sugars. We don’t have the enzyme fructase so it is fermented by the bacteria in our gut.
A gassy gut is not a happy gut. More to the point, cutting out large portions of FODMAP foods will reduce the chronic inflammation in out bellies and maybe even make us feel better. A major FODMAP is wheat. It is pretty hard to totally avoid but the whole idea is to go for a low FOFMAP diet.
The goal of full digestion is worthy. A life of maldigestion is possibly what is happening.
Best Luck,
LL