*This will be sporadic and repetitious of previous posts. I'm sorry for that. Life is so busy right now. I keep waiting to say, "Absolutely do this, and here's how," but the bottom line... you have to figure it out. What you figure out won't be exactly the same, but probably close.
Here's what I figured out:
September 2011, I was running a half marathon with a good friend. Somewhere around mile two, she began telling me about her mysterious asthma symptoms, which is why she'd been running with an inhaler. Then she said she'd asked several doctors what might be the issue, with no success, and finally ended up discussing her symptoms with an integrative medicine specialist, who theorized it could be exposure to mold and was subjecting her to various tests to find out.
By the end of the half marathon, I resolved to have Jack be tested by the integrative medicine specialist. This went against everything I formerly believed. Had he not been suffering so much from what I keep calling "OCD symptoms" I would have carried on, clutching the MERLD diagnosis and trusting in the power of development. Something else was wrong. I had accepted something else was wrong.
But not something else. THE something. That which also explained the MERLD if you believe that MERLD is caused by malnutrition. Ludicrous? Not after you spend two years of your life studying the American diet.
First frightening result: Food sensitivities. I know this all sounded like bunk two years ago. What I understand of it now is that an elevated level of IgG means the body is producing antibodies against the proteins of various foods because - in Jack's case - all evidence suggested he had a leaking gut. First his digestive system wasn't properly breaking down the food, then it was slipping through his mucuosal lining, and then his body was developing IgG to deal with the undigested particles, and who knows how long that's been going on, but:
Jack's Intestinal Barrier Assessment/IBA score = 709. Anything over 650 is considered a high number. Under 250 is insignificant. His number was very high.
HIGH IgG foods for Jack = Buttermilk, casein, cottage cheese, cow's milk, goat's milk, mozzarella cheese, parmesan cheese, swiss cheese, wheat, yogurt.
We also did the GI tract repair system by NEI Nutrition. It was a lot of capsules, but Jack was fine. The company states that children who struggle taking the capsules can have it opened and put into their food. We did this while Jack and I were also eating GFCF.
By this point in our story, I was not concerned about Jack's late talking any more. I'd given up worrying that his communication skills would "normalize" around third grade. He had just begun fifth grade by September 2011, and I was worried about him again for new symptoms which coincidentally (I don't believe coincidentally) occurred at the same time puberty hormones kicked in (around age 10.5).
The year of 2010-11 had escalated new symptoms that seemed pretty unfair. I've mentioned them in other posts. The incident I had shared with my friend during this run was when he could not exit the car from the driver's side because it frightened him so much, he truly believed he'd be sucked off into some sort of evil portal. I wrestled him out of the car, got his feet onto the ground, smiled at him and said, "See? Everything's fine!" and then he jumped back through the back seat, over an elderly woman, and out the other side. He was barely sleeping, easily awakened, thought the heater sounded like hell, had developed a hand tic, a spin move (turned around in circles mid-stride wherever we went because his mind was imagining things and he was struggling with separating reality time with fantasy), had to follow a specific pathway through the house or risk getting sucked into another portal, was afraid of one toilet in the house because of how loudly it flushed and so would run from that toilet while slamming doors to buy himself more time, couldn't sit in half the chairs in our house because they were portals, could not use red towels because they reminded him of blood... the list went on and on and kept getting longer. Then he started seeming drugged after certain meals. Not like he went to the couch after and fell asleep, but he sat in the chair with his hand twitching, his thoughts so far gone, he might as well have been cranked up with happy gas at the dentist's office.
So I was terrified. Again. And people said things like, "I did stuff like that. It's fine." And yet he'd get worse, so it didn't seem fine. "I know lots of people with tics. It just happens. It's a thing." But he never had tics before. His irrational fears had actually been rational before -- doctor, dentist, haircuts, bees... This fear of portals and being sucked off to hell, or not being able to sleep because of the night terrors - a reoccurring character who plagued us every night for a year who was ALWAYS trying to kill him. I spent many nights threatening this imaginary foe, hoping that would be enough to trick Jack's dream state into dreaming about something positive for a change. Four hours later, he'd be in my room, asking if he could sleep anywhere else in the house except his bedroom. For months this went on.
We went to the integrative specialist.
*Shortly after receiving these results, I decided Jack and I would go on the GFCF diet. No gluten or dairy for six months. Jack was retested by an allergist for a wheat or dairy allergy via the scratch test and he had no reaction. He was cleared of allergy. His IgG wasn't tested, however, but it would have been low because he hadn't eaten either wheat or dairy for six months. What surprised the allergist, however (after giving me "the trouble with Google moms" speech) was that Jack DID have a reaction to eggs and peanuts. He advised me to remove those from Jack's diet for a time as well (breakfast was always scrambled eggs and lunch was always peanut butter sandwiches). I did this for a week, running out of options for feeding my kid, and then when we returned for follow up with the doctor, I said I hadn't noticed a change in Jack without eggs or peanuts, so he said it should be safe to feed Jack those two foods. I then asked him again if it was evidence of a leaky gut and he told me struggling GI tracts were outside his scope of expertise. He could reassure me that Jack did not have Celiac, however.
So.
The integrative medicine specialist recommended Jack take a digestive enzyme (Digestzyme V), as well as a gluten/dairy enzyme (Pure encapsulations) for eight weeks. We did this. We still have them on hand. If he's had a weekend of recreational eating, I make sure he takes them.
So we avoided the foods he tested sensitive to while he did the GI repair. No dairy. No gluten. We would make oat flour pancakes. He seemed to prefer almond milk over the others, though he did like the chocolate soy. I didn't like the chocolate soy, as it was sweetened, and then there's the ongoing soy debate. Is it or isn't it good for us?? He wasn't crazy about soy after I quit getting the chocolate soy, so we stuck with almond milk or the nut milks. Sometimes coconut milk for cooking. Any substitute milk was fine for smoothies. Nothing was really enjoyed enough to pour a tall glass and glug it down as a beverage on its own, though. Both kids quickly adapted to drinking water.
"So then where did he get his calcium???" Turns out calcium occurs naturally in several other foods that we were not eating. http://www.globalhealingcenter.com/natural-health/foods-high-in-calcium/ Jack began eating leafy green salads, specifically baby spinach salads with nuts and seeds. I sprinkled chia seed over them. He loved slivered almonds with blueberries or strawberries on top.
Probably went over the top with replacing wheat in our pantry with gluten free alternatives, but the most important improvement that I don't feel over-the-top about is that all of our alternatives were organic certified. (Jack's favorite GFCF snacks - peanut butter and jelly on gluten free bread, tortilla chips and salsa, almost all fruits, but especially oranges, apples and bananas, gluten free Indian soups, baked potato chips, gluten free pretzels dipped in peanut butter, apples & almond butter... The variety wasn't as big, but by this point he'd started feeling so much less anxious and tired, feeling better eclipsed any previous pleasure derived from eating.
I also eliminated all processed foods, chemical foods, preservatives, dyes, pesticides, no fast food, and all sugars that were not organic. There hasn't been a high fructose corn syrup in our cart for over a year and a half. Nobody misses them. THIS has made a big difference.
Either the GFCF (dairy) or the elimination of junk foods, or the GI repair, or the reduced amount of sugars, or all of these changes combined fixed his digestive issues. It was well worth doing all of it just for the sake of stopping him from having to run to the bathroom. This was something I misunderstood that had been going on with him for years. I thought he was too engaged in play and that was causing his issues. That he wasn't going in time because he was too lazy or distracted. As soon as we worked on his GI, this stopped. It has been miraculous.
So then I thought, if his digestive system isn't yet able to properly break down foods, he should do as much juicing as possible, and also a liquid vitamin, because yes, I do believe one who eats a healthy diet is receiving all of the nutrients they need, but if a GI tract is compromised, working hard to digest and not getting it down, easily absorbed nutrition seemed a good plan to accommodate the GI repair. I started giving Jack Natural Vitality Kid's Natural Calm Vitality (with magnesium). I'd read sleeping was an issue in our society because we weren't getting enough magnesium in our diets. Sure enough, he began sleeping soundly through the night almost right away.
I got a juicer and a recipe book of juices. The kids loved it so long as I didn't try and overdue the healthy vegetables like the beets or the kale. Jack would drink straight beet juice, but I was finding it difficult. The kids loved the smoothies at the local health food store, so I started making those as after school snacks. You buy organic frozen fruit, sneak in some spinach, kale, beet juice, a favorite organic fruit juice like mango, then mix with an alternative milk and the kids are happy. I grew wheatgrass. That was tough to get used to, but Jack was such a good sport about it, I took a shot of wheatgrass juice with him. When I started growing sprouts, I caught him rinsing alfalfa sprouts one afternoon and eating them over the sink.
The integrative specialist also recommended Jack take a spoonful of cod liver oil twice a day.
I got an omega oil that seemed palatable, and the both of us would take a spoonful of that. It helps my skin and hair. For him, he seems to gain some focus after about three to four days. Regardless of how noticeable the improvements, we don't eat enough omegas in our food, so we do it.
We'll also do a shot of apple cider vinegar (with mother). Reasons are all over the web. For him, focus was always intestinal healing. For me, making up for lost time: http://www.globalhealingcenter.com/natural-health/the-benefits-of-apple-cider-vinegar/
The real reason Jack's guts needed to be repaired is because that is where 60% of our immune system begins its job protecting us, and I've long had hints that Jack's immune system has been over reactive. IgG is a sign of this. He had a serious infection that became a golf ball sized cyst inside his neck when he was about 12-16 months old, and I wonder if that's when this started, his body's over reaction. Because of that infection, he was on antibiotics for a long time and we never knew anything about balancing a gut flora after antibiotic treatment. So his digestive system was still developing when his body underwent fighting an infection in his neck and having all of its positive gut flora compromised. We were not eating healthy organic when he was little, so the foods he ate throughout his recovery really didn't do anything for restoring health. I have read all of the Dr. Mark Hyman books on the subject, and am currently working through The Immune System Recovery Plan. I've seen much of the information already, but it's a good guide, and as up to date as I'm aware (as of May 2013).
But anyway, if the GI is not working properly, the immune system is under duress, and if the immune system is under duress, the body is redirecting resources to fight off threats, attacking anything that seems strange, like partially digested casein and gluten - which is abundant in the American diet, and also altered since the introduction of GMOs in 1996, or the hormones & antibiotics given dairy and beef cows for however long. Hormones sneaking throught he mucosal lining along with partially digested proteins, and does this explain a screwed up endocrine system as well? Is there a link to Jack's OCD issues showing up around the same time his body started puberty? If all systems were functioning properly, we'd have dealt with the usual tween issues, but I remain convinced it was his endocrine system out of line with the rest of his systems that finally gave me the kick in the pants I needed to realize my boy was not being properly nourished.
Because also, if the guts are leaking partially digested foods, and the immune system is panicking, along with that, giving a child nutritionless happy meals means he's not getting the leafy greens he needs to help his gut heal itself or his immune system calm itself... and most frightening, the mind is not receiving the nutrition it needs to thrive -- or in some cases, just maintain.
Another test revealed that Jack had eight elevated neurotransmitters out of the 11 tested. Dopamine, serotonin and histamine were the highest. I read a study some time since that scientists are studying links to histamine levels with OCD behaviors.
Side note on histamine/OCD and Jack: Another dear friend suffers from OCD. We've been talking through all of this for a few years now. We realized last spring that her symptoms explode in the springtime. They get so severe, her mind will not give her any relief from the idea that she has cancer. She obsesses over moles on her skin and sees the doctors several times a month. She is an intelligent, rational, wonderful human being, and it's heart wrenching to see her suffer like this annually. This year seems bad again, and this is also a terrible year so far for tree pollen in our region. The solution has always been more anti-anxiety meds for her. She has never had someone actively walk her through the immune system repair process. If we lived closer, I would. The trouble is, when one is already overcome by the chemical imbalance, it is an excruciating fight, overcoming one's own mind in order to prevent/beat back those flooding OCD thoughts.
So then I could not help compare Jack to her struggle and I noticed three weeks ago that he began to get "spacey" on me, but also - he's been stuffy, runny nose, watery eyes, as if his body is handling the pollen level the way it was designed to. Proof his immune system has settled down. His histamine levels would have to be up, and I have noticed that the bees issue has come up again recently, but nowhere near as debilitating for him as it had been four years ago, when he would lock himself inside the house, pleading with the rest of us to come inside and get away from the bees. Another spring, two years of cautious health rebuilding, my son walks outside this time of year and occasionally is seen reacting to a diving bee, but he's much more relaxed, appreciative of the out doors. In fact, he has been asking his father to take him mushroom hunting. He has pushed mowed for me. He is in charge of relocating baby bunnies that keep getting flushed out by the dogs. He is a child who can be outside in springtime again. I just make sure to boost all of our immune bolstering efforts. Especially on the days that my phone sends me the high pollen alerts.
Another test. The organic acids test. A lot of things were out of whack for this that seemed to contradict the neurotransmitter findings. It was the least understood information when we first received it. Information such as, "HVA levels below the mean may indicate lower production of the neurotransmitter dopamine, perhaps due to low dietary intake of the amino acid precursors phenylalanine (wheat, dairy, meat) or tyrosine. Enzyme cofactors magnesium, B6 or biopterin may also be deficient."
Basically, you go down the list of "possible deficiencies," you see a big hole where processed foods have replaced whole foods. Processed foods no longer contain the same proteins, vitamins and minerals, with many of the proteins being altered in corn, wheat, soy, etc., so the body, if lucky enough to have the food digested properly, still doesn't have enough of the raw materials it needs to build and repair, beginning with the prevention of amino acid precursory, and if the amino acids aren't being made, the mind is pretty burdened to feed itself and the body. Over the years, the mind and body having been limping along eating upon the same pleasure inducing nutritionless foods, what's normal is lethargy, irritability, distracted thoughts, volatility, and nobody but nobody is going to say what's wrong is anything other than the universe picking upon that one individual for sport.
I have fought this pessimistic beast. I've been accused of not knowing my ass from a hole in a tree. At first, I was overwhelmed by the negativity that smacked up against me, but when I saw my kid walk out of that environmentally induced coma, grab his life by the horns and start taking off at a gallop, I knew we did the right thing. The fight's no longer an idealism, but the truth to me. We have all been sick and not at our best. The fear and panic of not knowing what to do is gone for me. Health is my wealth. No information is too bizarre or too small. It all matters. Clearing away the old coping mechanisms, resisting temptations... being healthy has alleviated so much for us. And there is nothing more rewarding in my life than watching those I love come back to life, achieving their full potential, thriving and happy, such a stark and reassuring contrast to the animosity still out there.
Tom has lost 25 pounds, runs an average of 15 miles a week, bikes, climbs, takes salad to work - never fast food, but most importantly, cares about his health and has dramatically reduced his stressed related mood swings such that he is *almost* the carefree 19-year-old I first met and admired years ago. His job still gets to him, but one more year maybe, and he'll have recovered who he truly is again. Not to mention, his connection with Jack reminds me of what they shared when Jack was a toddler, before all of this stress fell on top of us. They were a duo, sharing their own father/son language. We are back to Saturday mornings with the two of them laughing at each other, wrestling in the living room, exchanging masculine insults and hushing themselves whenever us girlfolk walk into the room. I've missed that the most. When the two of them were so connected, I was reassured I could hop a plane to anywhere and never have to worry about anybody having their needs met, Michael Landon/Highway to Heaven style. There's a freedom in this rehabilitation. No more panic for me that I have to remain intensely on top of things, or else it will all fall apart.
We're good.
I want to know more specifics like what milk you use soy, rice, oat etc. butter or margarine, oils organic items, vitamins etc.
To know what you should truly be eating/avoiding, some testing will have to be done. But if you're at the point where you're ready to clean out the kitchen and start putting real meals on the plates again, I recommend getting rid of any food that is artificial. Sugar to a minimum, and make it organic sugar. Force the vegetables. Maybe it seems like that's more trouble than it's worth, but it has to be done. The mind is starving if it's not getting vegetables. Start with the liquid vitamin, but get those kids eating leafy greens every day. That must be the goal.
Don't dump butter or cheese on the veggies. Figure out how they will eat them in rawest form. If it's juices mixed with fruit juice, do it. If they like raw broccoli or cooked carrots, do it. YOU have to eat it, too, or there's no way they're going to. My kids love baby spinach and broccoli. Salads have fruits and nuts on them, and very little dressing if none at all. Over the course of several months, we went from Jif peanut butter to unsweetened/no salt organic peanut butter. I realized the kids either put raw honey on their sandwiches, or organic jam that already had enough sugar. We stopped using Prego, transitioned using Newman's Own, have made it to using Amy's brand spaghetti sauce (we eat a lot less of it in order to compensate for cost), and after the end of this growing season, will hopefully have enough sauce put away that we'll have Amy's quality sauce that's homemade. So, fade outs like that have dramatically reduced the sugar intake, plus both children came back from their last two dental appointments without any cavities.
I only buy organic. I know that sucks, the cost, but you do it as you can because that USDA organic label means the food has no chemicals, hasn't been altered and is at its highest nutritional value possible, so it's like one bite to every ten of the junk. (Just made that number up. It's probably a 1:200 ratio if you consider the work you eliminate from your body of having to get rid of dyes, chemical residue, hormones, antibiotics, added food science brain trickery, etc.) You make financial cuts elsewhere (rarely go to Target and splurge, for instance), and you tell yourself that the efforts you make now will improve health/reduce the cost of future health care issues. It's health savings. People who do not put their health first now will suffer later. This includes children. People who put their health first now will have the advantage over those who do not. The main advantage being a MUCH higher quality of life, no matter what the socioeconomic status. You can glance at a national park documentary from the couch, or you can hike one with your family. If the idea of hiking it makes you glad you're a stationary couch person, there is something really wrong with you.
You have to figure out what your family likes if you go GFCF, and I think everyone should give it a try for a week or so at least, just to force you into reading ingredient labels, which REALLY sheds light on how much we've taken our consumption for granted. But knowing what your family is going to agree to eat on the GFCF diet is a tough one. We preferred almond milk, nut milk, and soy, coconut was tolerated, and Jack ate the gluten free sandwich bread for the six months, but he was so happy to be done with it by the time we stopped, he won't eat it now. We eat organic dairy and organic wheat now, since Jack's GI seems repaired and the allergist gave him the all clear, just not nearly as much. We get our probiotics how we like it best. I drink a (homemade) kombucha daily and live culture cottage cheese. Tom prefers pickles (he loves Bubbies), kimchi, saurkraut, etc. Pick loves her live culture yogurt. Jack takes a supplement. He's still not much of a yogurt fan, or cottage cheese, but he'll drink a kombucha now and again, and eat a pickle to prove to us he'll eat it. The two of us have our shot of apple cider vinegar together, which with a mother also means probiotics and enzymes. But few kids will take a shot of raw apple cider vinegar. I'm lucky. Jack will pretty much eat anything I ask him to.
The kids don't even like mac & cheese any more, unless it's made at a restaurant that makes it with real ingredients. Then it's a treat. No longer the main staple of their diets (along with fast food and delivery pizzas).
© Copyright 2013 Angeline Larimer
