First, as I mentioned in my earlier post, the very strict diet Jamie is on was designed specifically for him by the biochemist/registered dietician we are consulting with. He has a very complicated mix of problems: ME/CFS, severe methylation problems, Lyme disease, plus two other tick-borne infections (bartonella and babesia), and long-term yeast overgrowth (plus other problems) from years of constant antibiotic use. So, I am definitely not recommending this diet for anyone else - it's pretty drastic and focused on his individual needs right now. Here are some of the reasons behind the restrictions (anything in quotation marks comes directly from our biochemist/consultant):
- No sugar and no grains because they feed yeast, plus the biochemist/dietician says "they are also mitochondrial and brain poisons."
- No dairy, gluten, or oats because casein (protein in dairy), gluten, and gliadin (protein in oats) block one of the methylation pathways. "Dairy also inhibits the uptake of cysteine by neurons which impairs the neuronal production of glutathione. Considering the brain and its neurons is the most aerobic organ and glutathione the most important antioxidant, the brain becomes subject to severe oxidative stress. Casein also blocks the reduced folate receptor and the transport of reduced folate into neurons." (I told you she was knows a lot!)
- Only pears for fruit because "Pears do not contribute to a yeast overgrowth. Neither do they ferment."
- Legumes, tree nuts, whole grains, and certain vegetables are also on the No list because they contain oxalates. I don't fully understand yet why oxalates are bad for Jamie (and possibly me), but she said "oxalates and yeast are partners in crime." This has been a tough one here at home because we normally eat a LOT of beans (and they are also not allowed on Paleo - see below).
Generally, he has been eating scrambled eggs with some sort of breakfast meat for breakfast and meat and vegetables for lunch and dinner (unfortunately, he is ordering green beans at every single meal since it's his favorite!). The dietician encouraged him to eat between meal snacks - something he doesn't normally do. She said it's important to give the mitochondria a steady stream of fuel and not "starve" them for long periods between meals. For snacks, he has been eating natural jerky (with no nitrates or sugar), seeds, his one pear a day, and whey protein shakes (flavored plain whey protein powder mixed with water, with only stevia as a sweetener). When he comes home on Sundays, we have those coconut flour pancakes for breakfast and usually steak (his favorite), green beans, and pureed cauliflower for dinner.
Meanwhile, here at home, my husband decided to try the Paleo Diet, in part for moral support and in part because he's wanted to try it for years for weight loss. The Paleo Diet is basically eating the way prehistoric man ate, lots of fruits and veggies, lean meat, nuts, and seeds, with no grains or processed foods and only natural sugars. So, I have been cooking Paleo for dinners here at home and eating mostly Paleo myself while still sticking to mostly no sugar (I still eat a few whole grains, like oatmeal for breakfast 2 or 3 times a week because I feel better when I do). Here's a Weekend Cooking post I wrote on my book blog last week about our Paleo dinners, including a few tasty, easy recipes.
In addition, much of my time has been taken up with experimenting with various chocolately treats for my son (and my husband and I, too). I have tried two different grain-free, dairy-free brownie recipes. These coconut flour brownies were pretty good, though a bit dry (coconut flour is very dry and absorbs liquids like a sponge!) - they are more cake-like than brownie-like. I didn't follow the recipe exactly because it calls for 3/4 cup honey or maple syrup - WAY too much sugar for us. The only sweeteners he is allowed to have are a small amount of coconut sugar or maple syrup and a small amount of stevia (though stevia is actually good for Lyme disease, our biochemist says it is bad for mitochondria). So, I substituted 1/4 cup maple syrup and then made up the liquid with an extra 1/4 cup coconut oil, melted, plus 1/4 cup coconut milk. I also added about 2 oz. unsweetened baking chocolate, melted, for additional chocolate flavor and liquid.
Last weekend, I tried these Avocado Brownies (not telling my son they contained avocado, of course!). We all liked these better - the avocado keeps them more moist. Again, I had to sub out some of the sugar. I used only 1/4 cup of maple syrup, plus 1/4 cup of unsweetened coconut milk, and a couple of teaspoons of stevia to make up the sweetness. Like I said, there's been a lot of experimentation! My kitchen has been a chocolate laboratory the past few weeks.
One experiment that didn't go so well was cooking with raw cacao nibs. The dietician told me they melt. I can say with great authority that they do not melt! We tried everything - microwaving, stovetop, and oven, following her instructions carefully. What came out of the oven every time was a burned, smoking mess...and still individual, hard nibs. I finally gave up on those, and sent my husband to the grocery store for unsweetened baking chocolate. It contains nothing but chocolate, so the dietician gave it the OK.
With that more familiar ingredient, I have been able to make my son all kinds of chocolate treats (fortunately, our whole family loves very dark chocolate). I melt a package of baking chocolate (4 oz), add in a tablespoon or two of coconut sugar, plus a teaspoon of stevia, stir well and melt more (the coconut sugar remains a bit gritty) and then use the chocolate mixture in a variety of ways. I have made plain dark chocolate bark (pour it out onto wax paper and let it harden then break it up), chocolate bark with sunflower seeds and pumpkin seeds mixed in - that's become my son's favorite treat! - again poured out onto wax paper then broken up when it hardens, and my proudest achievement, sunflower butter cups. My son loves peanut butter, and his favorite treat is peanut butter cups, but peanuts (legumes) are off the menu.
These took some further experimentation. I bought some disposable aluminum tiny muffin tins at the grocery store. First, I drop balls of sunflower butter onto bits of plastic wrap covered with cooking spray, using a melon baller. I wrap each one up, pop then into the muffin tray, and freeze them (this process is the only way I found to keep the sunbutter from spreading out). Once they are solid, I melt the chocolate and add sweetener as I described above, pour a bit into each muffin spot, unwrap the sunbutter balls and put them in the liquid chocolate, then add more melted chocolate on top. Finally, pop them back into the freezer to get solid. Then, they go into plastic baggies, and Jamie keeps them in his mini fridge at school. They are delicious! And now, my son will eat sunflower butter which he wouldn't touch before.
Step 1: Drop balls of sunflower butter onto pieces of plastic wrap covered in cooking spray |
Step 2: Wrap up balls of sunflower butter and put into holes of a tiny muffin tin to freeze. |
Step 3: Cover balls of sunflower butter in melted chocolate...the finished Sunflower Butter Cups! |
Oh, I forgot to tell you the bottom line. Besides the diet, Jamie also quit all antibiotics (including herbals) for several weeks, as described in my earlier post, to give his body a chance to heal. The biochemist says that antibiotics cause damage to our mitochondrial DNA. We increased his Diflucan (anti-fungal for yeast) from 1 a day to 2 a day (200 mg total). Last week, we just began adding antibiotics back in, as his Lyme symptoms began to increase, starting with oregano. The plan is to slowly, gradually add stuff back in.
With all that...he's been feeling pretty good! His energy is better, brain fog is clearing up, and he's managing his 3 classes (including 2 labs) every week at school. He finished his Calc 3 final which was hanging over him from last semester, he's felt well enough to hang out with his friends again (I almost cried with joy when we brought medication to him on campus last week and he said he wasn't in his dorm room, he was in the student center playing ping pong!), and he's even done a little bit of exercise, though he recognizes he needs to take that slow. All good news so far...which is why he's been willing to stick with such a strict diet. The biochemist/dietician wants him to stick with it for another few weeks, to make sure this isn't just a honeymoon phase and the improvement is here to stay, then she will add a few of the lesser bad guys back in.
Oh, and me? Well, I've had a good few weeks, too. I'm not sure if it is due to the partial Paleo Diet (I wasn't eating much sugar or white flour anyway and haven't had dairy for years) or simply that I got my own yeast overgrowth under control (through double Diflucan plus dietary changes) last month. It is very possible that I've been living with behind-the-scenes yeast overgrowth for years without realizing it.
I'm very interested to hear your own experiences with dietary changes, whether Paleo or anti-candida or other trials.
Hi Sue
ReplyDeleteThanks for the coconut pancake idea, I have been wondering what I would treat myself to on Shrove Tuesday next week - I'm going to give them a go. I've been on paleo for about three weeks now and just wanted to say how I empathise with your kitchen experimentation and how I know what a full time job it actually is planning your family's meals when you're dealing with diets like these.
Working on the "treats" is so important as it's nice to know there is something you can pick on when you need those sweet treats. I wonder if you've tried Dr Myhills coconut oil chocolate?
This is a very palatable way to eat coconut oil and get a nice chocolate buzz at the same time.
Warm up a pot (460grams) of coconut oil so that it just melts.
Stir in a pot (125 grams) of Green and Black's organic cocoa powder (more or less according to taste).
Sweeten with 10 grams fo D ribose, or fructo-oligosaccharides. It mixes easily.
Pour into a plastic ice cube container to make bite-size cubes, place in deep freeze.
Consume direct from the deep freeze. Done like this it has the consistency of chocolate and is the perfect fuel source for CFS and foggy brain sufferers!!
If you do not tolerate chocolate, then carob powder makes a good substitute.
Thanks for the recipe, Beauts! I have heard of something similar before. Not sure my son would like it - it might taste too coconutty - but it sounds good for me!
DeleteDo you find that that much coconut oil messes up your stomach? When I first bought coconut oil, I tried a spoonful (as I'd read about) and was running to the bathroom shortly after! Now I use it sparingly in recipes.
Thanks!
Sue
Interesting information Sue, especially that peer seems to be the only acceptable fruit. In belgium Meirler focus a lot on fructose (probably not the reason why the biochemist not recommend fruit) and fructose allergy.
ReplyDeleteSometimes I wonder if antibiotics is the best way for your son. If he could strengthen the immunesystem maybe with the herbprotocoll for lyme it could be less severe effects on his body. Maybe thats what you got planned after his antibiotic treatment.
Just wanted to update you that we HAVE decided to move forward with an herbal protocol for my son - he just started Byron White's protocol this week.
DeleteThanks!
I feel i have similar isued as your son. Finding foods that dont create a reaction is difficult its hard pinpointing the problem whether it be oxalates, histamines, fiber, etc..
ReplyDeleteWhat whey protein powder does he use? I bought an undenatured whey with little lactose or casein. Still nervous to try becasue ive been lactose intolerant my whole life and im nervous about the lactose feeding the bad bacteria.
Does your son have issues with sulfur foods? Does he have issues with sulfur reducing bacteria? They mess with methylation. Im taking supplements to help with methylation and glutathione.
Hi, Taylor -
DeleteWe've now been eating Paleo almost a year. It's hard for my son when he's away at college but otherwise we've adjusted well. We've both had mild improvement from the dietary changes, mostly due to getting yeast overgrowth under control.
I am also both lactose and casein intolerant but was happy to find I can tolerate whey powder - and it's so good for us! Here is more info on the whey powder in the links in this post:
http://livewithcfs.blogspot.com/2014/05/paleo-chocolate-sunflower-butter-banana.html
We treat methylation, too - very important!
http://livewithcfs.blogspot.com/2014/04/the-methylation-cycle-central-to-mecfs.html
Sue
Also, i want to try cocoa or cacoa powder as well but Ive read they can have negative effects with cfs because of the stimulant ?
ReplyDeleteI am very sensitive to caffeine - haven't had any to speak of in 20 years - but I've never ever noticed any effects from any form of chocolate, even though it is supposed to contain a small amount of caffeine. I am guessing I never have enough of it at once to bother me. We have cacoa powder in our smoothies every day at lunch and then I take a nap right after - no problem sleeping at all. I also eat 1-2 squares of very dark chocolate (80% or higher so little sugar) every evening with my herbal tea before bed - again, no problem.
Delete