So. I have had this whole CKD thing on my mind night and day lately. After I got my last lab results back, I spent several hours just sitting in the dark of my room, crying and frustrated, and mad. Praying helps. Thinking of all that I have to be grateful for helps. But I'm still just so irritated.
I'm irritated with myself, irritated with this damn sarcoidosis, irritated with the lack of public information about health issues, and just irritated with it all.
The sarcoidosis started this ball rolling but the blame for it picking up speed lies first with me. I let my weight balloon. I wasn't being careful about reading nutrition labels. I didn't take the time to realize that "eating healthy" in general doesn't mean "healthy for everyone". I didn't pay enough attention to my own health. I was so focused on my sarcoidosis in general that I didn't think enough about the specifics.
The biggest frustration is that I waited until now to educate myself about CKD. The next irritation is that in the US we don't have enough public information about nutrition and diet. We have a lot of noise about it but not enough useful information.
Nutrition labels are focused on the basis but they are not always on the up and up. The clearest information on a nutrition label is for anyone trying to lose weight. That even gets a little tricky when there is hidden or unclear labeling of ingredients.
Labels can disguise sugars and salts and other minerals by playing funky games with the names of those things. The average person trying to lower their sodium or sugar intake might not know to look for the different ways those things are named.
I found one article online that points out the different ways to "find sodium". Find sodium - because it might be hidden. Some ways sodium appears on labels?
- Monosodium glutamate, or MSG (often added to Chinese food)
- Sodium citrate
- Sodium sulfite
- Sodium caseinate
- Sodium benzoate
- Sodium hydroxide
- Disodium phosphate
At least, in this case of this list, "sodium" is part of the name. The other part of this though is when we are drawn to a particular product because of how it's described on the front label. This same article points out how the touted "low sodium", "unsalted", "sodium-free", "very low sodium", "light" and "reduced" sodium mean. For me with CKD, I'd need to really be careful about buying items labeled as "light" and "reduced" sodium. And I will be careful - now that I know.
Let's look at sugar.
As with the sodium identifiers above, there are some sugars that are fairly obvious. But then again, there are so many
types of sugar that unless you are involved with food on a more-than-average level, you might miss a lot of them. Here are just some from
this page where they note that
"Ingredients are listed by weight on packaged foods, with the main ingredients listed first. The more of one item, the higher up on the list it appears.
Food manufacturers often take advantage of this. To make their products appear healthier, some use smaller amounts of three or four types of sugar in a single product."
And some of the names of these sweeteners?
- Barley malt
- Beet sugar
- Brown sugar
- Buttered sugar
- Cane juice crystals
- Cane sugar
- Caster sugar
- Coconut sugar
- Corn sweetener
- Crystalline fructose
- Date sugar
- Dextran, malt powder
- Ethyl maltol
- Fruit juice concentrate
- Golden sugar
- Invert sugar
- Maltodextrin
- Maltose
- Muscovado sugar
- Panela
- Palm sugar
- Organic raw sugar
- Rapadura sugar
- Evaporated cane juice
- Confectioner’s (powdered) sugar
Of that list of 25 items, I'd say that 11 are harder to spot as being "sugar" or a sweetener - unless you pay close attention. And I think that brands count on us not paying attention.
Another thing I recently realized is that some things are not even evident on food labels. For example, phosphorus is something I have to watch in my diet. Wanna try identifying that on labels? I didn't even know it was a thing to watch for before now...
What frustrates me about this is that brands are allowed to manipulate the information on labels at all. If cigarettes come with warning labels - and only x amount of people smoke them - shouldn't food labels be held to a higher standard? I mean, everyone eats. From the moment of conception, we are in some way affected by nutrition.
Remember when we found out that "diet" sodas weren't as healthy as would be assumed by the use of the word "diet"?
So I am frustrated as much by the food industry as and the guidelines they are allowed to play with as I am by myself.
I didn't just now start to pay attention to my health. If you've read my blog at all, you've known about all the times I was tweaking my diet to add what I thought of as healthy foods. For the past couple of years, I've been eating lots and lots of greens and healthy fats. I've barely eaten any fast food at all in over 4 years. The only real thing I knew that I was playing fast and loose with was red meat. Even then I would go for the lean stuff. And I damn near went into debt the past year by switching over to fish and seafood. I stopped using cow dairy (except for my coffee creamers) and went full soy. I started eating tofu.
Had I better educated myself I would have known that all green stuff isn't good for CKD. I should NOT have been eating bunches and bunches of collard greens with "low sodium" seasonings. I'd have known to watch for some of the "good fats" like my beloved avocados. I'd have known that switching from chips and cookies to seeds and nuts wasn't the smartest thing. I'd have known not to add chia seeds to my diet.
I right now have (or have given away) a king's ransom of "healthy" foods I can no longer freely indulge in:
- A jug of chia seeds that I was adding to daily smoothies of spinach and fruits.
- 3 different bags of brown rice and 1 bag of wild rice
- whole-grain pasta noodles
- veggies noodles
- whole-grain bread mix to make in my bread machine
- canned and frozen mixed vegetables
- bags and bags of pinto beans
- frozen spinach
- tomato paste and sauce and stewed tomatoes (2 of the cans were reduced sodium)
- pasta sauce
- refried beans
- whole-grain tortillas
And on and on.
I was proud of how I was eating. I gave up orange juice last year when I was warned about it and started buying pineapple juice - for my spinach and banana smoothies!
So, basically, I was probably being kinder to my kidneys when I was eating a lot of pasta and rice and yellow cake with cream cheese frosting...
The thing that has made me maddest is that, if there were more specific food and nutrition education, there would be fewer people dealing with CKD, high blood pressure, diabetes, etc.
What I knew before now was to avoid pork, processed foods, orange juice, and anything with a lot of seasoning. What I didn't know was to avoid foods that are often seen as "healthy". Those foods are healthy for some or even most people but not for me. Not for anyone else with CKD..
Don't just tell people that too much salt and sugar is bad for them. Tell them where to find salt and sugar in common foods. And try to be clearer about the yays and nays of daily nutrition. Especially when they are dealing with CKD or weight issues or heart issues.
Anyway.
I will be seeing a new nephrologist soon. The first thing I am going to ask for is to see a dietician. I think I mentioned that before. I don't know. Can't remember because I'm too hungry and stressed out. I believe I mentioned that I'm down to popcorn, toast, and coffee with rice milk at this point.
Peace
--Free
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