Fats -- a long ramble, trying to sort my thoughts
This is me continuing to natter on generally because of stuff I wrote yesterday. I have not had enough sleep because my kids got me up for us to do snacks and drinks (if it isn't a hot meal, it is "snacks and drinks" not, like, "breakfast"). And I have no clue how much sleep I had, but it was NOT ENOUGH.
Also: This is (already) long and rambling (and I am not done writing) and I will almost certainly make an ass of myself and sound stupid. I'm writing to try to sort something out in my mind and this will reveal the limits of my knowledge, the things I don't understand and yadda. People already like to act like I'm a loon because I'm a former homemaker and not a doctor or a "scientist" (up yours -- my life is my lab, excuse the hell out of me for not wearing a white lab coat while doing the science that has been saving my life, you world full of shitty people).
Anyway: Fats.
So, the whole salt wasting thing is likely infuenced by the fact that people with CF misprocess fats. I say that because I THINK getting enough fats is kind of like how you can create a canteen by oiling a leather bag, basically. Oil keeps out water -- or in the case of an old fashioned leather canteen, it keeps in water. And I think the lack of adequate fat is a major part of why people with CF are "spongey" and leaky and our skin does such a shit job of doing what skin is supposed to do and I have provided some info below on that.
I'm rereading what I had already written and realizing I didn't actually make my point here and that is that I think improving my nutritional status on fats has helped reduce the salt wasting tendency of my body which is that people with CF sweat out salt at very high rates -- which is why a sweat chloride test is the standard test for CF and I sometimes wonder if getting healthier like I have might have changed my sweat chloride numbers. But I don't have money for testing to check that idea.
Misprocessing fats is a major, major issue and it's not in my "roots of the problem" thing at the bottom of this page. That's old and it's not up to date and it should probably be updated at some point. (But why bother? No one takes me seriously.)
This post will be a mix of what I know and what I THINK. I don't know how to prove the parts that I THINK make sense or support them or fact check them.
I'm writing this to try to figure out how to get there from here and that's where I'm going to end up sounding stupid and like "How in the hell is this idiot supposedly getting well when she doesn't even know the established science for X???" Well, I'm getting well because the established science for CF is WRONG. That's how. So I don't always know or care what the established science says about certain things.
So I'm not entirely sure how solid this is, but this is my current THINKING on the topic of fats and CF and there are some missing puzzle pieces in my mind, so I tend to not say too much about this because some of this is sort of speculative. And the world at large has some big issue with me speculating or thinking out loud about my own medical condition for reasons I cannot fathom.
Anyway, it is known that people with CF misprocess fats and it is common to recommend MCT oil -- medium chain triglycerides -- as a beneficial supplement for people with CF (often abbreviated "pwcf" in online discussions). The other thing is there used to be a vitamin product called, I think, ADEKs because it was all your fat soluble vitamins -- A, D, E and K -- and it was often prescribed for people with CF because we tend to be seriously deficient in them. But I think ADEKs no longer exists as a product. The company went out of business or discontinued that product or something.
Probably we are so deficient in the fat soluble vitamins at least in part because we misprocess fats, but also people with CF generally suffer from malabsorbtion and about 85 percent of pwcf are prescribed digestive enzymes and we generally tend to be deficient in pretty much everything important. Aggressive nutrition is a cornerstone of the process by which me and my sons have been getting healthier.
Coconut oil is high in MCTs and is another thing that gets recommended. I once tripped across a fairly serious medical reference on this -- but I don't know how to find it again and I have looked a few times -- and MCTs or coconut oil has historically been medically recommended for all kinds of medical issues with serious gut issues, such as stomach cancer.
MCTs can be directly absorbed without actually digesting them -- ie breaking them down by the body -- and used "as is."
So in CF communities, I used to see people talk about how MCT oil was beneficial because people with CF have a high caloric need and none of those calories are "wasted" by the process of digestion. Which, you know, sounds batshit insane and crazy stupid to me, but what the hell do I know? So I never said anything to people spouting what sounds like patent nonsense to me.
The detail that MCTs can be directly absorbed means that if you have CF and you are too sick to eat, you can actually supplement this by using coconut oil topically. And, relatedly, people with CF are prone to severe aquagenic wrinkling -- aka "getting pruney in the bath" -- and I think this is a significant way in which our immune function is compromised (and I have just updated that page with a couple of supporting links, something I've been meaning to do ever since I wrote it).
So I think people with untreated CF generally absorb stuff through the skin worse than normal (though it can be improved if you do the kinds of things I have done) and this is a problem, but it's also a thing you can consciously use to your advantage to treat the condition. I went through a period of time where I was using coconut oil topically on a regular basis to treat my then chronic vaginal yeast infections and was mindful of the fact that this meant I was de facto supplementing MCT oil.
MCT oil appears to move metals and I sitll have a mouthful of metal dental work. I had to STOP oral supplementation of coconut oil when I was using it topically to treat my vaginal yeast infections.
A former registered nurse who let her registered status lapse and went on to study a variety of alternative medicine approaches to keep her sickly kids alive told me vaginal yeast infections really begin in the gut. It is a general overgrowth of yeast in the system.
I have found this fits with my experiences and with healing my gut and yadda, I no longer get vaginal yeast infections. This used to be a serious issue for me.
Well, no, it's a little more complicated than that. Sigh.
At the time in question that I was using coconut oil to treat my vaginal yeast infections, I was having them because yeast feeds on detritus, so it's a normal, routine side effect of killing infection. Anytime you kill infection, you tend to see a spike in yeast in the system and when you get enough of that, you get vaginal yeast infections if you have girl parts down there.
So I was routinely using coconut oil on my girl parts because I was making progress on my health status generally and this meant I had a lot of die off and yeast overgrowth is a side effect of bad die off. So dealing with yeast is an inevitable part of the healing process if you have been sick all your life.
My maiden name is Irish in origin. I have read that Irish families are the ones most likely to have two or more people with CF in the family and this is true for me: I and my oldest son both have CF.
The Irish are well-known for being especially pasty white, even for White people and I saw a discussion on a CF list once where a mom talked about how people with CF typically are very pale and have blonde, puffy hair, like one of those flowers you blow.
At some point in my long, strange healing journey, this stopped being true. I can now tan.
I don't actually know why. And this is where this post gets messy and makes me sound and feel stupid.
I don't actually know how melanin is produced in the body and I don't know how to look that up and figure it out and yadda and it hasn't been super high on my To Do list to try to figure out how in the heck the body tans. I've run it past my son and I spent some time today listening to him and I looked up a few things online and what I'm getting is that melanin is produced from proteins, not fats, but vitamin D is fatty and...
So, I began being able to tan and with that my ability to produce my own vitamin D was seemingly kick-started. And I don't know the relationship there, but I think maybe getting enough dietary fats somehow helped, but I don't know how to sort that out.
My former nurse friend once told me -- when I was asking her how a particular drug actually worked in the body at the cellular level -- "You are asking questions they don't have answers for. That's not how they study drugs." She explained they do drug trials to see how it impacts specific health outcomes, but they often have no idea what it really does in the body.
So after that I quit wasting so much time googling things that aren't likely to be findable. My oldest son is my research assistant and I sometimes run things past him. I've just asked him to look up tanning for me. He says he thinks we did look it up once and he doesn't remember the explanation.
I pulled him out of school to homeschool him when he was eleven years old and in sixth grade. We initially homeschooled through a charter school and they gave him placement tests to try to find appropriate curriculum for him and he tested at the senior in college level for science.
I later learned the test only went up to "senior in college" level. So he ceilinged the test. They never did find adequate science curriculum for him and I struggled to keep up with his hunger for "science snacks" when we were homeschooling.
I have had a college class in how to do internet research. That was a required class when I was pursuing my never completed online Bachelor of Science. I don't have half the talent he has for finding stuff.
So I go "I am having x problem. I remember y thing and z thing. Please find out if those are connected and, if so, let me know what we can do about it." An hour later I have an email full of supporting links and a conclusion like "We can feed you Reese's Cups to address this." And I eat a few Reeses's Cups and my agonizing pain comes down to bearable levels and I can function again.
So he's basically a genius and in my fantasies where, someday, I get recognition and win the Nobel Prize, he deserves equal credit. He is the other half of this team.
So I have asked him to look into how tanning works and we shall see if he gets me anything useful. I have just explained to him that I am specifically trying to understand how our fat processing issues relate to this.
And with asking him that, as noted above, I've spent some time today looking at this and batting things about with him and I'm not getting anywhere yet on sorting this out.
One of the things that happened is that while we were homeless one day a bought a smaller t-shirt than normal and more of my upper arms were on display than usual. My upper arms were white and my lower arms were brown and now my upper arms were on display.
And I began throwing up. I concluded it had to be due to increased vitamin D production and we bought me a cheap hoody for like a dollar from some sale rack. With having long sleeves again, I stopped throwing up.
Vitamin D isn't actually a vitamin. Technically, vitamins are essential nutrients your body cannot produce and we can produce vitamin D, so it's not actually a vitamin. It's a steroid.
It plays an important role in the immune system and steroids are known to help boost the immune system. This is why they sometimes prescribe them alongside antibiotics when you are very sick, a somehow common practice if you have CF because when people with CF are sick, they are very sick and they need all the help they can get.
So while I was homeless, I made a conscious effort to SLOWLY increase the amount of my pasty white skin that was tanned. Because sun exposure was causing me to have a really strong reaction and buying the hoddy helped convince me my hypothesis was correct -- that the vomiting was, in fact, a side effect of increased vitamin D production.
My initial foray into reading up on this today has brought me to a few important details:
How blocking sunlight from burning you plays into making your own vitamin D -- I don't know. That seems counterintuitive. But that seems to be connected, based on first-hand experience that after I began tanning, I began throwing up from tanning because I was making this powerful steroid that I have had a life-long deficiency in and my body was using that to begin redressing long-standing issues and it was too much all at once.
One of the things I have struggled with is rate of change. Current medical practices for Western medicine is that you give people drugs with a long list of nasty side effects and you trade short term gains for long term costs. The doctors take credit for the short term gains and then blame your underlying condition when the long term costs of these drugs start biting you in the ass at a later date, thereby washing their hands of responsibility for de facto poisoning you.
I have been getting well by trading short term costs for long term gains and this is challenging when you are so sick because you don't have a lot of leeway to absorb short term costs. You improve that ability by being supportive of the body and improving your nutritional status, but that proces itself comes with costs.
It's kind of like renovating a house while living in it. Anytime you renovate, you start with rolling a large dumpster up next to the building and filling it with broken stuff you are throwing out.
So as you start imprving your nutrition, your body starts ripping out the bad stuff and hauling it out, only there's no dumpster rented. Suddenly, your trash cans are overflowing and your through-puts are overwhelmed and you are sweating stuff out and you are throwing up and you are peeing a lot and having intestinal drama of various sorts because these are the pathways by which your body hauls things out.
When you renovate a house, it's always challenging to make sure you still have functioning systems while fixing those systems. It's more challenging to make sure you have functioning systems in your body while fixing them, especially since I had no play book for any of this. I was making it up as I went.
Throwing up is a last resort and your body does it when seriously overwhelmed, when sweating it out and peeing it out and pooping it out is just not sufficient. So I have this love-hate relationship with vomiting. It moves things forward rapidly, but it also can be really hard on the body and can be a signifier that I am moving too fast and need to slow things down.
Before I wind this down, I need to talk a bit about dietary fats.
When I was still seeing a CF specialist, it was standard to have a dietician on the team that treated you and the standard advice at that time was a "high fat, high calorie, high salt" diet and so they basically actively recommended junk food, in part because CF is a huge financial burden to live with and junk food is cheap.
After my son with CF gained some weight -- he gained like 20 pounds the first year he was on digestive enzymes, starting from just 103 pounds, so it was a nearly twenty percent weight gain -- he lost 5 pounds at some point and his medical team of unremitting assholes was making noises like they were going to call a social worker on me because he lost a few pounds and have me charged with child neglect.
So they insisted we put some weight back on him even though he felt better than he had in years and I put a big bowl of snacks on the living room coffee table and they scheduled us a follow-up appointment. And he regained 2.5 pounds and they decided that was good enough and quit being assholes about the whole thing and didn't schedule further follow up.
We got home from that appointment and he walked over to the coffee table and picked up the bowl of junkie snacks and brought it to me and told me "I feel awful. We are NEVER doing this again!"
So I don't follow the standard medical advice of a junk food diet for CF. Food quality and food chemistry have been a big part of the process here and dietary fat is one element of that.
I do try to make sure I get enough MCT oils in my diet and I'm a butter fiend. Butter is a reasonable source of MCTs and I tolerate it well. When I was about four or five years old, I was constantly in trouble for going in the fridge and picking up the stick of butter and just taking a bite out of it and my mother never did go "Dorina, just come to me and let me know and I will GIVE you butter, but don't BITE the butter. It's germy." So I just kept getting in trouble until I stopped craving it so bad and then I stopped.
I limit my consumption of long chain triglycerides. This seems to be what my body misprocesses and peanut oil in particular just wracks me up. So supplementing with MCT oil is not enough. If you have CF, you also need to eliminate the fats you don't tolerate well. This is critical to getting inflammation and other issues under control.
Also: This is (already) long and rambling (and I am not done writing) and I will almost certainly make an ass of myself and sound stupid. I'm writing to try to sort something out in my mind and this will reveal the limits of my knowledge, the things I don't understand and yadda. People already like to act like I'm a loon because I'm a former homemaker and not a doctor or a "scientist" (up yours -- my life is my lab, excuse the hell out of me for not wearing a white lab coat while doing the science that has been saving my life, you world full of shitty people).
Anyway: Fats.
So, the whole salt wasting thing is likely infuenced by the fact that people with CF misprocess fats. I say that because I THINK getting enough fats is kind of like how you can create a canteen by oiling a leather bag, basically. Oil keeps out water -- or in the case of an old fashioned leather canteen, it keeps in water. And I think the lack of adequate fat is a major part of why people with CF are "spongey" and leaky and our skin does such a shit job of doing what skin is supposed to do and I have provided some info below on that.
I'm rereading what I had already written and realizing I didn't actually make my point here and that is that I think improving my nutritional status on fats has helped reduce the salt wasting tendency of my body which is that people with CF sweat out salt at very high rates -- which is why a sweat chloride test is the standard test for CF and I sometimes wonder if getting healthier like I have might have changed my sweat chloride numbers. But I don't have money for testing to check that idea.
Misprocessing fats is a major, major issue and it's not in my "roots of the problem" thing at the bottom of this page. That's old and it's not up to date and it should probably be updated at some point. (But why bother? No one takes me seriously.)
This post will be a mix of what I know and what I THINK. I don't know how to prove the parts that I THINK make sense or support them or fact check them.
I'm writing this to try to figure out how to get there from here and that's where I'm going to end up sounding stupid and like "How in the hell is this idiot supposedly getting well when she doesn't even know the established science for X???" Well, I'm getting well because the established science for CF is WRONG. That's how. So I don't always know or care what the established science says about certain things.
So I'm not entirely sure how solid this is, but this is my current THINKING on the topic of fats and CF and there are some missing puzzle pieces in my mind, so I tend to not say too much about this because some of this is sort of speculative. And the world at large has some big issue with me speculating or thinking out loud about my own medical condition for reasons I cannot fathom.
Anyway, it is known that people with CF misprocess fats and it is common to recommend MCT oil -- medium chain triglycerides -- as a beneficial supplement for people with CF (often abbreviated "pwcf" in online discussions). The other thing is there used to be a vitamin product called, I think, ADEKs because it was all your fat soluble vitamins -- A, D, E and K -- and it was often prescribed for people with CF because we tend to be seriously deficient in them. But I think ADEKs no longer exists as a product. The company went out of business or discontinued that product or something.
Probably we are so deficient in the fat soluble vitamins at least in part because we misprocess fats, but also people with CF generally suffer from malabsorbtion and about 85 percent of pwcf are prescribed digestive enzymes and we generally tend to be deficient in pretty much everything important. Aggressive nutrition is a cornerstone of the process by which me and my sons have been getting healthier.
Coconut oil is high in MCTs and is another thing that gets recommended. I once tripped across a fairly serious medical reference on this -- but I don't know how to find it again and I have looked a few times -- and MCTs or coconut oil has historically been medically recommended for all kinds of medical issues with serious gut issues, such as stomach cancer.
MCTs can be directly absorbed without actually digesting them -- ie breaking them down by the body -- and used "as is."
So in CF communities, I used to see people talk about how MCT oil was beneficial because people with CF have a high caloric need and none of those calories are "wasted" by the process of digestion. Which, you know, sounds batshit insane and crazy stupid to me, but what the hell do I know? So I never said anything to people spouting what sounds like patent nonsense to me.
The detail that MCTs can be directly absorbed means that if you have CF and you are too sick to eat, you can actually supplement this by using coconut oil topically. And, relatedly, people with CF are prone to severe aquagenic wrinkling -- aka "getting pruney in the bath" -- and I think this is a significant way in which our immune function is compromised (and I have just updated that page with a couple of supporting links, something I've been meaning to do ever since I wrote it).
So I think people with untreated CF generally absorb stuff through the skin worse than normal (though it can be improved if you do the kinds of things I have done) and this is a problem, but it's also a thing you can consciously use to your advantage to treat the condition. I went through a period of time where I was using coconut oil topically on a regular basis to treat my then chronic vaginal yeast infections and was mindful of the fact that this meant I was de facto supplementing MCT oil.
MCT oil appears to move metals and I sitll have a mouthful of metal dental work. I had to STOP oral supplementation of coconut oil when I was using it topically to treat my vaginal yeast infections.
A former registered nurse who let her registered status lapse and went on to study a variety of alternative medicine approaches to keep her sickly kids alive told me vaginal yeast infections really begin in the gut. It is a general overgrowth of yeast in the system.
I have found this fits with my experiences and with healing my gut and yadda, I no longer get vaginal yeast infections. This used to be a serious issue for me.
Well, no, it's a little more complicated than that. Sigh.
At the time in question that I was using coconut oil to treat my vaginal yeast infections, I was having them because yeast feeds on detritus, so it's a normal, routine side effect of killing infection. Anytime you kill infection, you tend to see a spike in yeast in the system and when you get enough of that, you get vaginal yeast infections if you have girl parts down there.
So I was routinely using coconut oil on my girl parts because I was making progress on my health status generally and this meant I had a lot of die off and yeast overgrowth is a side effect of bad die off. So dealing with yeast is an inevitable part of the healing process if you have been sick all your life.
My maiden name is Irish in origin. I have read that Irish families are the ones most likely to have two or more people with CF in the family and this is true for me: I and my oldest son both have CF.
The Irish are well-known for being especially pasty white, even for White people and I saw a discussion on a CF list once where a mom talked about how people with CF typically are very pale and have blonde, puffy hair, like one of those flowers you blow.
Those are apparently called dandelions
At some point in my long, strange healing journey, this stopped being true. I can now tan.
I don't actually know why. And this is where this post gets messy and makes me sound and feel stupid.
I don't actually know how melanin is produced in the body and I don't know how to look that up and figure it out and yadda and it hasn't been super high on my To Do list to try to figure out how in the heck the body tans. I've run it past my son and I spent some time today listening to him and I looked up a few things online and what I'm getting is that melanin is produced from proteins, not fats, but vitamin D is fatty and...
So, I began being able to tan and with that my ability to produce my own vitamin D was seemingly kick-started. And I don't know the relationship there, but I think maybe getting enough dietary fats somehow helped, but I don't know how to sort that out.
My former nurse friend once told me -- when I was asking her how a particular drug actually worked in the body at the cellular level -- "You are asking questions they don't have answers for. That's not how they study drugs." She explained they do drug trials to see how it impacts specific health outcomes, but they often have no idea what it really does in the body.
So after that I quit wasting so much time googling things that aren't likely to be findable. My oldest son is my research assistant and I sometimes run things past him. I've just asked him to look up tanning for me. He says he thinks we did look it up once and he doesn't remember the explanation.
I pulled him out of school to homeschool him when he was eleven years old and in sixth grade. We initially homeschooled through a charter school and they gave him placement tests to try to find appropriate curriculum for him and he tested at the senior in college level for science.
I later learned the test only went up to "senior in college" level. So he ceilinged the test. They never did find adequate science curriculum for him and I struggled to keep up with his hunger for "science snacks" when we were homeschooling.
I have had a college class in how to do internet research. That was a required class when I was pursuing my never completed online Bachelor of Science. I don't have half the talent he has for finding stuff.
So I go "I am having x problem. I remember y thing and z thing. Please find out if those are connected and, if so, let me know what we can do about it." An hour later I have an email full of supporting links and a conclusion like "We can feed you Reese's Cups to address this." And I eat a few Reeses's Cups and my agonizing pain comes down to bearable levels and I can function again.
So he's basically a genius and in my fantasies where, someday, I get recognition and win the Nobel Prize, he deserves equal credit. He is the other half of this team.
So I have asked him to look into how tanning works and we shall see if he gets me anything useful. I have just explained to him that I am specifically trying to understand how our fat processing issues relate to this.
And with asking him that, as noted above, I've spent some time today looking at this and batting things about with him and I'm not getting anywhere yet on sorting this out.
One of the things that happened is that while we were homeless one day a bought a smaller t-shirt than normal and more of my upper arms were on display than usual. My upper arms were white and my lower arms were brown and now my upper arms were on display.
And I began throwing up. I concluded it had to be due to increased vitamin D production and we bought me a cheap hoody for like a dollar from some sale rack. With having long sleeves again, I stopped throwing up.
Vitamin D isn't actually a vitamin. Technically, vitamins are essential nutrients your body cannot produce and we can produce vitamin D, so it's not actually a vitamin. It's a steroid.
It plays an important role in the immune system and steroids are known to help boost the immune system. This is why they sometimes prescribe them alongside antibiotics when you are very sick, a somehow common practice if you have CF because when people with CF are sick, they are very sick and they need all the help they can get.
So while I was homeless, I made a conscious effort to SLOWLY increase the amount of my pasty white skin that was tanned. Because sun exposure was causing me to have a really strong reaction and buying the hoddy helped convince me my hypothesis was correct -- that the vomiting was, in fact, a side effect of increased vitamin D production.
My initial foray into reading up on this today has brought me to a few important details:
- Melanin is made from proteins, not fats
- One form of melanin is important in how the brain functions and also helps remove excess iron -- this is significant because people with CF seem to generally be more prone to metal poisoning than average as well
- Vitamin D is, unsurprisingly, made from fatty components
How blocking sunlight from burning you plays into making your own vitamin D -- I don't know. That seems counterintuitive. But that seems to be connected, based on first-hand experience that after I began tanning, I began throwing up from tanning because I was making this powerful steroid that I have had a life-long deficiency in and my body was using that to begin redressing long-standing issues and it was too much all at once.
One of the things I have struggled with is rate of change. Current medical practices for Western medicine is that you give people drugs with a long list of nasty side effects and you trade short term gains for long term costs. The doctors take credit for the short term gains and then blame your underlying condition when the long term costs of these drugs start biting you in the ass at a later date, thereby washing their hands of responsibility for de facto poisoning you.
I have been getting well by trading short term costs for long term gains and this is challenging when you are so sick because you don't have a lot of leeway to absorb short term costs. You improve that ability by being supportive of the body and improving your nutritional status, but that proces itself comes with costs.
It's kind of like renovating a house while living in it. Anytime you renovate, you start with rolling a large dumpster up next to the building and filling it with broken stuff you are throwing out.
So as you start imprving your nutrition, your body starts ripping out the bad stuff and hauling it out, only there's no dumpster rented. Suddenly, your trash cans are overflowing and your through-puts are overwhelmed and you are sweating stuff out and you are throwing up and you are peeing a lot and having intestinal drama of various sorts because these are the pathways by which your body hauls things out.
When you renovate a house, it's always challenging to make sure you still have functioning systems while fixing those systems. It's more challenging to make sure you have functioning systems in your body while fixing them, especially since I had no play book for any of this. I was making it up as I went.
Throwing up is a last resort and your body does it when seriously overwhelmed, when sweating it out and peeing it out and pooping it out is just not sufficient. So I have this love-hate relationship with vomiting. It moves things forward rapidly, but it also can be really hard on the body and can be a signifier that I am moving too fast and need to slow things down.
Before I wind this down, I need to talk a bit about dietary fats.
When I was still seeing a CF specialist, it was standard to have a dietician on the team that treated you and the standard advice at that time was a "high fat, high calorie, high salt" diet and so they basically actively recommended junk food, in part because CF is a huge financial burden to live with and junk food is cheap.
After my son with CF gained some weight -- he gained like 20 pounds the first year he was on digestive enzymes, starting from just 103 pounds, so it was a nearly twenty percent weight gain -- he lost 5 pounds at some point and his medical team of unremitting assholes was making noises like they were going to call a social worker on me because he lost a few pounds and have me charged with child neglect.
So they insisted we put some weight back on him even though he felt better than he had in years and I put a big bowl of snacks on the living room coffee table and they scheduled us a follow-up appointment. And he regained 2.5 pounds and they decided that was good enough and quit being assholes about the whole thing and didn't schedule further follow up.
We got home from that appointment and he walked over to the coffee table and picked up the bowl of junkie snacks and brought it to me and told me "I feel awful. We are NEVER doing this again!"
So I don't follow the standard medical advice of a junk food diet for CF. Food quality and food chemistry have been a big part of the process here and dietary fat is one element of that.
I do try to make sure I get enough MCT oils in my diet and I'm a butter fiend. Butter is a reasonable source of MCTs and I tolerate it well. When I was about four or five years old, I was constantly in trouble for going in the fridge and picking up the stick of butter and just taking a bite out of it and my mother never did go "Dorina, just come to me and let me know and I will GIVE you butter, but don't BITE the butter. It's germy." So I just kept getting in trouble until I stopped craving it so bad and then I stopped.
I limit my consumption of long chain triglycerides. This seems to be what my body misprocesses and peanut oil in particular just wracks me up. So supplementing with MCT oil is not enough. If you have CF, you also need to eliminate the fats you don't tolerate well. This is critical to getting inflammation and other issues under control.
