The article linked here focuses on neuroinflammation, not systemic inflammation, and SOD subtypes, which amount to ~1% of all ALS, (~20% of familial cases).
Gluten does not increase inflammation unless you are sensitive. Most of those on gluten-free diets are not. Gluten, esp. whole grain forms, has a lot of important nutrients, so it's unwise to start cutting them them out unless you have enough to replace them with.
Heavily-processed foods are much easier to indict as regards systemic inflammation and take more energy from the body compared to what they contribute. So there is a big difference between consuming gluten as a butter cookie vs. whole wheat bread.
Thanks for the reply @lgelb, she did say she had a test which showed I was gluten sensitive but I also read there are no fda approved genetic tests for sensitivity so it’s probably just more hooplah. If I’m being honest I’m partially doing it to calm her as well.
Diet is something I’ve been bouncing all over the place the last month. Some people say eat whatever you want to keep weight up but then others say avoid sugar because of inflammation. I was enjoying a fair amount of ice cream but after gaining from 144-156 I am slowing down now and looking to balance things a bit more.
ALS is in part a metabolic disease so not downing a box of cookies or quart of ice cream in one setting is just common sense to keep your pancreas in trim, as it would be for anyone but more so, whereas a couple of cookies per se are seldom the villains.
It is a good time to read labels, though, and look for the "good" ice creams (e.g. Breyers has a couple) that don't have extra ingredients, and if in time it seems that dairy affects your breathing or mucus as it can, switch to non-dairy ice cream (I am fond of Brave Robot and Oatly).
Research suggests the PALS sweet spot for BMI, which you can calculate on line, is 31-ish/30-35. What you eat to hold on to that, can also be guided by how you feel after you eat.
Aaron, Mayo recommended gluten free for me due to stomach issues. It has helped a great deal. I later gave up all grains. It didn't plunge my weight but did make my stomach less distended. I didn't have allergies to grains I do better without them. Replaced them with plenty of nuts, fruit and veggies. Also, good fat and protein are essential for many functions. I always have more energy after eating a grass fed and finished, organic steak.....plus it tastes good.
Regarding swallowing issues, if you have a Vitamix you can puree anything and still enjoy the taste.
I also found that Kate Farms, famous for healthy peg feedings, has regular shakes with 330 calories each.
Just a note that Kate Farms has more sugar proportionally than other tube formulae I would look at: Whole Story, Real Food Blends, and Liquid Hope. Sugar is not a villain, but it's not the hero either.
Totally agree that good fat/protein are key building blocks to preserving muscle/all-day energy as much as possible. But when you don't have a tube yet, the same principle applies -- real food, good food, enough food but not too much. And blend smooth when you need to -- even pureed meat.
The first things to go when swallowing becomes more difficult are kernels, seeds, nuts (but not nut butters blended into a smoothie), skins, stringy produce and such.
@KimT and @lgelb Thank you so much for the replies. I will admit I always feel better going gluten free in terms of joint pain but who knows if it’s just a placebo affect. I told my mom at least when I get the feeding tube gluten free would be a lot easier since it seems most of the tube feeds already are.
I did buy Kate Farms Peptide 1.5 and it seems to cause some intestinal cramps so I ordered the regular 1.4 to see if that helps. Trying to get down what works for my body best before I can’t experiment as much or am relegated to tube feeding.
I did love eating a pint of ice cream in a sitting but I am more about doing what helps the most, so I’ll try to consume a more healthy amount of sugar at time, thanks again for the advice on nutrition, it does seem very important!
Has anyone heard about the LRA test, It is a blood test that tests against over 500 different items, and it shows what can cause inflammation in your body, so you can eliminate those items, allowing your body to heal itself. Does anyone have any experience or knowledge about this?
The LRA test has been around for years. I learned about it during my doctorate in naturopathic medicine. They take a blood sample and challenge various things against your lymphocytes in hope of provoking a reaction. I've always used an elimination diet to figure out things that bother me.
I have no idea how many functional medicine doctors use this method.
Kate Farms uses pea protein. If your belly is upset, Aaron, it's most likely from the protein. That's why I bought some of their regular shakes. I wanted to test my response before it becomes necessary to choose. I know to stay away from dairy when I'm no longer mobil since I already have stomach issues......and other issues that dairy aggravates. I still do eat whole fat Greek Yogurt. I rotate on and off it. I don't have a dairy allergy but it does cause constipation if I eat too much.