Spin Cycle: You Are What You Eat

July 22, 2011 2:44 pm

I’m rejoining the Spin Cycle this week after almost a year long hiatus. Sorry Jen. It’s not you, it’s me. Really. Food has been a major culprit in my absence so this week’s topic of “food” seemed pretty dead on.

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When we last talked about food over at HAGAY, I was spewing a dye-free lifestyle on the world. Which I totally stand behind but we’ve since added a few (hundred million it seems) other no no’s to the list. We are currently gluten, casein, soy, artificial dye and preservative free PLUS we are on a low phenol/salicylate/amine diet. When I say we, I mean Graham and Elliot since I am a coward and do not practice what I preach. I have my own health concerns and should really be following the same restrictive diet but I have yet to do so. Shame shame, I know your name. It’s Casey.

In addition to their limited diet, my kids also suffer from chemical sensitivities. That means cleaning products, paint fumes, gas fumes, new carpeting/construction smells, perfumes, perfumed soaps, shampoos, sunscreens, CHLORINE, the list goes on. It manifests itself a little differently in each kid but there is no denying the symptoms that come on when they are exposed to such toxins. Which sucks because hello, people dump perfume on by the gallon before leaving the house. And preschools try to be proactive and Lysol the shit out of their classrooms. All things that a normal child would be fine with but my poor kids are far from normal.

When people ask about the kid’s allergies, I see it as an opportunity to inform them of the unhealthy food supply we feed our kids by the pound-full. By the time I get to talking chemical intolerance, my mouth is talking a mile a minute. As I talk, I can see their eyes grow big and their mind start to say “cuckoo cuckoo, that bitch is CRAZY”. And I am crazy, but I have seen firsthand what the effects of toxic (and some not so toxic) foods and chemicals can do to a child. I have spent countless hours reading and rereading the medical research on on the subject. I have earned a PhD from the College of Google.

My kids have what’s called a Phenol Intolerance. Just a brief exposure to any of the above mentioned toxins and we’re in for a few days of hell. In addition to the chemical phenolic compounds (food dyes, perfumes, chlorine, fumes), phenols are in most foods too, foods otherwise considered healthy. The biggest offenders are tomatoes, grapes, apples, berries, cucumbers, citrus, bananas. Vinegar, vanilla, lemon juices, cinnamon and most spices used in cooking. Pretty much anything with flavor is off limits for them. Symptoms from eating offending foods (for my kids) are: difficulty going to bed and staying asleep (read: UP ALL EFFING NIGHT), hyperactivity, aggression (fighting each other violently), dark circles under the eyes. Graham gets really mean and defiant and he can’t sit still. He walks around with his fists bunched up all day and will hit us if we come in his path. Elliot turns into Linda Blair and gets headaches. She gets a swollen, itchy rash if any perfumed soaps or fabrics touch her skin. She is still recovering from wearing a hand me down dress over a week ago because the dress was washed in scented detergent. I get the urge to get in my car and drive. But I don’t, because I know their behaviors are the chemicals talking. I try to calmly buckle down and wait it out, but it’s hard. I have the same allergies and get restless leg syndrome and insomnia if I eat tomato sauce or dairy for dinner. It is seriously crazy shit.

I’m not exactly sure why my kids are so sensitive to all of these things but I have some theories. They both had prolonged antibiotic use (from both having ongoing ear infections early on) which weakened their immune systems and they haven’t fully recovered. Graham is more sensitive to things but they definitely both react. They are genetically predisposed to the food sensitivities because everyone in my family seems to have them.

There are only a few things we can do to limit their symptoms. I send their own hand soap and cleaning supplies to camp when they go. We have a salt water pool at home which doesn’t seem to affect them but other pools do. We usually avoid highly chlorinated pools but I let Graham go in the splash park at Busch Gardens this week.  He is still reeling from the effects of the chlorine and his behavior has been horrible. We give the kids nightly Epsom salt baths to help their bodies release the toxins. We recently started using a product called No-Phenol to help them process the phenols but I’m not sure how well it’s working. We put GABA-magnesium cream on them daily to help and give them amino acid supplements that naturally help their bodies process toxins. The rituals are crazy but necessary. Because he has the same gastrointestinal and behavioral symptoms as kids on the autism spectrum, Graham sees a DAN doctor for guidance with his supplements.

So, their diet is seriously limited. Pears and thickly peeled Golden Delicious apples are the only two fruits they can have. I make their own “ketchup” out of pears, brown sugar and citric acid. I scour the internet for safe recipes to make that won’t make them crazy (BTW, here is an awesome meatball recipe where you can hide vegetables in and they won’t even know! I know!). We make batches of pancakes and waffles to freeze in advance. We supplement the shit out of them to make sure they’re getting enough nutrition and I buy every cookbook containing ideas to sneak nutrition into them with their limited diet. I join the Facebook groups and newsgroups on the subjects and benefit from other people’s wisdom. We are still working out the kinks in their diet and it seems like we have more bad days than good but we are getting there slowly but surely. In the meantime, I maintain that I’m not crazy. You believe me, right?

Some GREAT resources for limited diets (all three have cookbooks available to purchase):

The Feingold Diet

The Failsafe Diet

Nourishing Hope

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20 Comments

  1. Michele
    on
    1

    Darlin’ you have got to do what works for the kids. We went a long time without sugar in our house because of an intolerant child. I got really good at making jam out of berries and home-pressed apple cider. Once, we got things under control (about 5 years) we started easing up just a bit. So the kids bodies could slowly acclimate to a more normal diet. It took years and they still have to watch what they eat. Corn is out forever for the oldest.

    Reply to this Comment

  2. MamaBadger
    on
    2

    Next time I whine about my kids restricted diet, slap me. I will say, though, having any kid of restrictions that makes you read the labels is an eye opening experience. I’m glad for you that you’re able to perserviere with the diet thing to help the kids. I’ve been following along, and I think at some point, other moms would have given in to the “just drug them” idea and lived with their little zombies. You’ve gone way above and beyond.

    Reply to this Comment

  3. Sprite's Keeper
    on
    3

    I have tried your ketchup and it’s better than the other stuff! In fact, since my kid is such a ketchup afficianado, I would love your exact recipe so I may make it as well since we’re getting rid of preservatives in our home.
    And we’ll always have Red Robin’s gluten free meals to get together over. :-)
    You’re linked and I’m glad you updated us!

    Reply to this Comment

  4. SuziCate
    on
    4

    I’ve told you before, and I’m going to tell you again…damn girl, I admire you! You are the hero of moms. Crazy or not, you ROCK!

    Reply to this Comment

  5. Stacy Uncorked
    on
    5

    You are my hero. I so admire your perseverance to make sure your kids get what they need. You ROCK! :) There might be a possibility I’ll be knocking on your door for some advice when there is an addition to the household in the next month or so. Wait, that means I’d be getting in my car to go for a (extra long) drive…heh! ;) You seriously have enough info (and experience) to write a book – seriously! And thanks for the link for the meatballs – Princess Nagger loves meatballs…what a perfect way to get her to eat veggies, since she’ll avoid them at any cost. I’m running out of ideas on how to sneak them in! ;)

    Reply to this Comment

  6. Keely
    on
    6

    Oh, lady. You’re not crazy. The planet is crazy with toxins and your poor kids and family are on the forefront of what I’m thinking is going to be an epidemic of sensitivities. I hope, hope, that as they get older their sensitivities will get better. You need a break!

    Reply to this Comment

  7. lin
    on
    7

    So, if I eat Lucky Charms, I’m Magically delicious??? Cool. I’ve got that going for me.

    What the hell is with your kids?? Criminy. They are kinda like that John Travolta movie–Boy in the Bubble or something like that.

    So, what CAN they eat?? Sawdust? I would have to get rid of those kids. That is too much work.

    Reply to this Comment

  8. Pseudo
    on
    8

    I think if the planet and industrialized food continue to go toxic, more and more children will have similar problems. And if more people demand better food, eventually it won’t get so hard for you (and us) to feed the kids the right way.

    You are amazing BTW.

    Reply to this Comment

  9. Erin
    on
    9

    I’m a very sensitive persons, environmental and food allergies. Everything that touches my skin has to be preservative free.
    So awesome of you to do all this research – it only makes sense that our children are responding to the poisons in this world.
    Super super spin. xo

    Reply to this Comment

  10. Captain Dumbass
    on
    10

    Your kids so owe you when they’re older.

    Reply to this Comment

  11. Anne
    on
    11

    You know I don’t think you are crazy. Since we suffer from a wheat intolerance and dairy allergy, I can only imagine how you manage everything. Although, it sounds like it makes life more pleasant for everyone. Before I started my daughter’s diet, I couldn’t imagine the lengths you had to go to and now that I am at that point, I can totally empathize. It is a challenge that does get easier. I admire how you have been able to do everything.

    Reply to this Comment

  12. Andrea
    on
    12

    That’s completely insane. What you have to do to keep them safe and healthy, not you. I can’t imagine how hard that all is to keep up with. You must worry all day, every day. It’s amazing that you still can form coherent thoughts (and I mean that in a NICE way).

    But they’re your kids. You’d do it all over again in a heartbeat.

    Reply to this Comment

  13. Ginny Marie
    on
    13

    A salt water pool sounds awesome! We were at a hotel a couple of weeks ago, and the pool was cloudy with chlorine. We didn’t want the girls to swim in it, but we had promised we would go swimming at the hotel. It’s so hard to take back a promise like that! We swam anyway and took really good baths afterwards. I’m very lucky that my girls don’t seem to have any allergies, but sometimes I wonder if certain things affect them more than I think they do.

    Reply to this Comment

  14. K
    on
    14

    My heart goes out to you. I have a hard enough time feeling my kids – with no extra challenges. Good luck!

    Reply to this Comment

  15. bex
    on
    15

    Holy diet, Batman! That is a LOT of restrictions! I can’t blame you for being tempted to get in the car and drive -I would too!

    I remember the dyes portion of your restrictions and the birthday cake you made. Since then, I put my family on a clean diet of fresh meats, veggies, nix the processed foods and fried food. Basically, all the fun kid-foods. We don’t have any sensitivities but your commitment inspired me to change our lifestyle. It used to be junk food in moderation. Now its just simply, no junk food.

    Reply to this Comment

  16. Gone Bananas
    on
    16

    Hey Casey, I know I know it’s been a while, but I wanted to tell you about a Tampa BlogHer Meet up my sis in law is setting up! Hope you can make it http://www.facebook.com/event.php?eid=234040029970196

    Kirsten

    Reply to this Comment

  17. Cyndi at The Adventures of HarryJack
    on
    17

    Yowzers, everyone else has said it better than I can, but I’m exhausted just reading this and feel pretty guilty that I’ve been too lazy to figure out what exactly causes my poor boy to have sores in his mouth. I should cut it out but can’t figure out what it is. I definitely do not win MOTY, but will happily sign petition for you ;-) GL with the behavior, it sounds like you are getting there! Welcome back, btw, I’ve been a slacker but missed you lotsa :hug:

    Reply to this Comment

  18. ck
    on
    18

    Holy sh*t, Casey. I had no idea things got so intense. We just found out that our 6YO has a “high sensitivity” to dairy, and a “low sensitivity” to eggs and beef. We had to strip her diet of those things for a month and for real, I cannot believe how much dairy is in EVERYTHING. But I don’t have to tell you that. I mention it only because I thought you were an incredible person before you had to deal with your children’s allergies, and now that I have the smallest taste of what you’re going through, I think you’re even more amazing. ((hugs))

    Reply to this Comment

  19. babyfoodsteps
    on
    19

    Thanks for finding my blog and commenting on my S is for Salicylates post…
    I totally feel your pain…this is not easy and anyone that thinks it is, should try it for 24 hours… I guarantee they will make at least one slip up…we have been doing it for nearly 2 years now and still slip up…they worst part of a slip up is that our daughter reacts for up to 2 weeks from an infraction….
    I truly believe this is a toxic world and it is up to us moms to keep our little canaries safe!
    look forward to comparing more notes offline!

    Reply to this Comment

  20. Zip n Tizzy
    on
    20

    Honey I hadn’t even read this post when I replied to your last post, but no, you’re not crazy! We just have a handful of allergies, and I know how dramatically my kids react. I know that what you’re saying is true, but I’m thinking you must feel crazy trying to navigate!

    Wow Casey! I remember when you were first becoming aware of all this. I see what an education it has been. You are awesome, and I’m sure exhausted, but you’re kids are so lucky to have you, because there are so many kids out there in the same position that are just growing up thinking they’re “bad” because nobody knows how to help them.

    Reply to this Comment

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