CF and Nutrition
We are suffering from a perfect storm of health problems
1. Metabolic syndrome - Long term blood sugars, not controlled properly in the body, taxes the system to where most Cf's adults get clinical CFRD. This can be avoided, irrespective of what clinical outlines say. If we don't tax our systems we can do better. Learn about blood sugar and how we are so affected by it.
2. Nutrient Mal-absorbtion - We cant absorb the right amount of nutrients especially fats. This is such a catch 22 that it is so imperitive to get our stomachs straightend out so we get nutrients we need to live. For me it was finding out that I have a gluten intolerance once I was gluten free my health did a 120, notice it was not a 180 - the other 60 degrees is the right carbs and healthy foods. Still work in progress for the rest
3. Inflammation of cells and lungs - We cant help it our immune systems just don't shut off, it causes long term damage. I remember once asking what CRP is on my labs. I was quickly answered that in CF it is always high no need to worry about it. I accepted and moved on. Well what it is besides just an indicator of heart disease but an indicator of unbridled inflammation in our bodies namely our lungs. Its like we have a non stop splinter and our lungs are always inflamed. I bet if we got this under control we would have a 25% bump in PFT's if we got rid of the pseudomonas we would get another 25% bump.
4. Congestion caused by defect in respiratory transport channels - Ah yes the underlying disease mechanism that causes this all. Isnt it interesting that we are here at all. So something must be working to get this far. Isnt it true that babies with Cf lungs are clear and not affected for a few years. Is there something we are missing what really makes us sick and how can we address this. If we are wrong from the beginning what hope so us 41 year olds have.
We have to outline our objectives. Do we want to just gain weight or gain health.
We have to look at everything we know and reverse it, the answer is not as it seems. In the inventors world we call it "reverse assumption", question everything from the opposite angle.
Ie: It is prescribed that eat lots of calories, fat sugar and what not, irrespective of where nutritionally they come from. The goal is to gain weight, so we hit a number to make our CF clinic look good, not control disease process. Traditional medicine just looks at the symptom not the body's healing processes. Lets look at this what would be better an almond butter smoothie sweetened with honey or a milky way and pizza? Hard boiled eggs, olive oil squash or a tv dinner. NO question right.
I saw a commercial for KFC the other day. One time I might of thought what they were showing might be appetizing but now that fried chicken, fries and a roll looks revolting, all this processed dead food that is actually anti nutrient value your body has to work harder to digest and process this junk. It might be 1500 calories but is just horrible for those that want better health. Nutrients are just a transfer of energy the more intact they are the easier it is to get utilized by the body. So what your saying is become a low calorie vegetarian far from it. We need a hunter gatherer diet, gluten free, inflammation controlled diet, raw and some vegetarian but meats and protein too. Fruits and veggies no sugar or processed crap.
Look at the example of Steve Jobs, whose recent death just highlights the extreme, of it doesn't matter how much money you have or who you know you cant out run poor nutrition which leads to cancer. Cancer is just the body's last ditch effort to save itself, so is celiac. In both cases it is a nutritional chaos and the body is practicing self protection. Dr Mercola - Steve Jobs
http://articles.mercola.com/sites/a...z-on-steve-jobs.aspx?e_cid=20111009_SNL_Art_1
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Look at this article
www.greenmedinfo.com "The Dark Side of Wheat"
With CF there is no short cut to health, we have to take a hard look at what we have in stock what is working and where we can optimize our health. We have to work harder and smarter. We have to do what our CF docs say and we have to do what the most aggressive Natural Doc and nutritionists do and say. We don't have the celebrities or big wigs with CF, CF keeps most of us harranged and just fighting most of the time it is tough to make it in a non CF world, the CFF does nothing in this area so we are on our owns. Question if it can be better we have to do something different something more.
Recently I just did a tune up and I made an unofficial tally of who is doing what in terms of what needs to be done in terms of good health.
1. Patients in the hospital order Coke, pizza, jello in large quantities, bad
2. Nurses run on Diet cokes and Starbucks
3. Doctors are often times overweight and just as unhealthy as anyone else.
Recently an associate of mine who works in a cancer hospital just went to a funeral service for a cancer doctor who just died of cancer. Really, when are we going to give nutrition a go as the first stop for long term health. It's just crazy.
We gain weight with a g-tube but the problem is that low value calories and sugar are just stored in adipose fat (usually around the middle) so we gain weight but most of it is in our bellies. I switched from high glycemic carbs to those from squash or sweet potatos and initially lost a little weight but what I did not realize is that I gained it in muscle without even trying. My diabelly tire slimmed down, interesting. Now each day I have new awareness of what to eat and what I can bolus in my g-tube. Yesterday I had such an inspiration/ concoction that I burned out my blender. Today I am off to buy a commercial blender to really get at it. I also use a slow juicer that slowly juices the fruits and veggies to extract more nutrients without destroying them.
www.hurom.com
Too much sugar taxes the body and over long term is detrimental to our health and ability to stay well. I often wonder if I know what I know now and did not have CF what could I accomplish. Would I be as motivated and determined. Don't know many healthy people are not, they are lazy or tired or don't care about their health because they don't have to do anything for it they just take it for granted. Well baby walk a breathless mile in my shoes and you will gain some perspective! >>
Sugar fuels our cells but also pseudomonas cells. An excess of sugar allows these pathogens to grow uninhibited.
Sugar is too easy to get and not necessary for mass consumption.
It is ridiculously hard to avoid Dr. Pepper and sugar in my tea. But I look at it as not what I am giving up but what I am gaining. I am gaining better health. Now I am 41 I just wish I put this together at 21 or 12!
If you subscribe to the belief that as man evolved he had to hunt and gather his food, only when he started to farm did his diet get worse. In the case of sugar it was a rare commodity and not readily available. Lets say you eat an apple and it has 1or 2 tsp of sugar, natural fructose with all the companion nutrients, fiber etc that slow the digestion of the sugar versus high fructose corn sugar that is basically a chemical that is rapidly absorbed your body has difficulty utilizing it so it creates a cascade of negative events. One it is stored as adipose fat, two causes inflammation three it fuels pathogens. You'd have to eat 10-15 apples to get the sugar equivalent of 1 soda. Sugar in sodas is too easy thus we have so many problems in regular people we have an overweight epidemic and diabetes > IN Cf we just get the diabetes and inflammation and congestion. It's a lose lose for us.
I can tell a CF'er a mile away, besides the cough, our sound of voice and thin arms and hunched back what is especially clear, self included, when I look in the mirror there is a fallow palor in our faces, a lackI just saw a picture of a young guy with CF who's parent are of some decent financial means and pull with the CF community but his color is off I want to email him and say that even though you are tall and growing your getting too much sugar! . One thing I do notice is that as a group Cf's tend to look younger than most of the same age, is this due to lack of growth or something else. There is a big movement that practices caloric restriction they say it is beneficial and reduces metabolic stress. Well I don't think CF's should restrict our calories but we might be practicing this by default. Not sure just a thought. It is the same look one can attribute to a long term smoker, their bodies are so deplete of nutrients it shows in their faces and hair, voice etc.
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Bottom line we need to be uber healthy with CF a larger tougher order to fill in what is an overwhelming disease. But working smarter and different will make you feel better leading to be able to do more.
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Rob 37 yo/male w/cf, married 1 dog!
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Cystic Fibrosis » Nutrition » We are suffering from a perfect storm of health problems
