elimination diet ~prelude to menu plan

i will never forget the day we found out what was wrong with our baby. all we knew was he was born allergic to dairy, he became allergic to eggs at 7 months and by 12 months he was a miserable wreck of a baby. he never slept more than an hr or 2 through the night.

he nursed constantly. he was losing weight. he was covered in eczema and itchy hives on and off. his eyes were so red-ringed and swollen, they looked misshapen. his lymph nodes swelled up and wouldn't go down. all he did was scratch, cry and nurse.

the skin scratch tests were negative for any further food allergies. our pediatrician sent us straight to the hospital after some blood tests in her office came back abnormal (turned out he'd just had a mild virus at the time) and we began a long winter of spending our evenings in the hospital, undergoing tests for every scary thing under the sun: celiac disease, lymphoma, leukemia, metabolic disorders, genetic disorders, kidney disorders, growth/hormone imbalances, you name it. everything kept coming back fine and the allergist finally said, "since you're taking all that blood for other things anyway, let's do the RAST for food allergies just to see if it disagrees w/ the normal skin test".

it did. it said that he wasn't actually allergic to dairy (but it makes him stool 100% blood when he gets it through my milk, so even if it's just called a severe intolerance, i'm treating it like an allergy and cutting it out 100% - all the semantics mean is he might be more likely to outgrow this someday than a true allergy), he is very allergic to eggs (which we already knew b/c he broke out in hives after nursing on a day i'd eaten eggs the day before) and he was additionally allergic to : wheat, soy, corn and peanuts. (now that he's 2, he's also become allergic to almonds, cats, dogs and something in every commercially prepared laundry detergent - but back then, we started w/ those 6 food allergies).

i remember i felt absolutely overwhelmed. i was angry, i was disbelieving. how on earth could i feed a baby and avoid all of that? the allergist told me i could try just cutting out the worst ones and still give him the things he wasn't quite as allergic to (soy & wheat) and we'd put him on some antihistamines to help manage any continuing reactions from that.

being an 'all or nothing' kind of person, i asked him why i'd want my baby to get something that only hurts him a little less? shouldn't i try to cut out anything that hurts him at all? i asked if he had a list of things that didn't contain all these allergens. i asked him if he had a list of menu ideas for ppl that have to eliminate all of this. no and no. not even a website he could recommend tho he did say he was sure i'd find parent support groups online if i looked. so i walked out of there, literally not knowing how to feed my baby - it was a scary and frustrating feeling and i sat in my van and had a good cry before i drove home.

let me just cut to the chase because if you're reading all this, you are probably at some point down the same road i traveled and going to be dealing w/ the same tests and dead ends and frustrations and don't need to hear it all again in detail. i went through all the bargaining, all the trying to get away w/ this or that, all the thinking, 'one little piece wouldn't hurt'... and even though i'd cut out most of the big bad stuff he was allergic to, my baby wasn't getting any better.

he kept losing weight. he looked terrible. the ped started sending me to other specialists, that wanted to do biopsies and scope him and look for something wrong in his GI tract even tho he had absolutely no GI symptoms. we kept suspecting celiac disease even though all the blood tests were negative for it and he had none of the symptoms or stool irregularities. (often w/ celiac disease you see slimy, mucousy and foul-smelling stools w/ stomach pain and cramps).

i finally realized my half-assed commitment to my child's allergy elimination was making him sicker and resolved to just bite the bullet and do this thing right. i decided i had to feed the whole family this way to avoid cross-contamination and prevent me having to cook different things for different people, a precedent you definitely don't want to set in a family w/ 5 kids and a husband who was not open to 'health food' !

i soon realized the hardest part of this was the corn allergy. for some reason, corn is not considered one of the top 8 allergens. i guess b/c it's not a common thing become allergic to corn. i have my own opinions on how long *that's* going to be the case, though!

corn is in absolutely everything. it's a sweetener, it's an oil, it's an emulsifier, it's a filler, it's a protectant, it's an acid, it's an alcohol, it's an oil, it's a powder, it's a starch, it's an anti-caking agent, it's everything to every product and it's in all of them. if you buy frozen fruit and it says 'citric acid', that's corn. if you buy a bottle of vitamin c or see vitamin c as an additive in anything, that's corn. when you buy table salt, the reason it doesn't stick together is powdered corn is in there, too. vinegar is made from it and it's in vanilla. powdered sugar is cut with it and so is baking powder. it's in every canned thing, every jarred thing, it's everywhere .

it's in all medications that are liquid to help sweeten them. it's in all pills and tablets to help bind them. it's in the sucrose you get in IV fluids in the hospital, it's used to make the plastic tubes the sucrose runs though. it's the base for most alcohols - rubbing and drinking. it's in lotions, shampoos, conditioners and makeup and soaps. it's acetic acid, ascorbic acid and the ascorbates. it's tocopherols, celluloses, calcium lactate. (you thought that would be dairy, right?) it's hidden in the term, 'natural flavorings'. it's in the plastic tupperware you store your food in and the plastic bags you carry your groceries home in. if you use disposable diapers, it's all over your baby's tenderest areas.

with this much overexposure to corn, i think more and more people in our country are and don't realize, or are going to become allergic to it. i can't understand why it has to be in everything -now that i've figured out how to live w/out it, things taste better w/out it.

i've bought frozen peaches w/ citric acid and organic frozen peaches w/ nothing but peaches in the ingredient list and couldn't tell you the slightest bit of difference. it's supposed to help preserve color on frozen fruits, but they look the same to me, who needs it ? and now that it's come to light that high fructose corn syrup contains mercury, which has been linked to autism, even if i didn't have an allergic child, i'd be working to eliminate it as much as possible anyway!

for a complete list of the names corn hides under, go to www.cornallergens.com. if you suspect corn allergy and need to eliminate it from your diet, you need to get the printable version of this list and print several copies. keep one with you in your diaper bag or vehicle at all times. it's currently 4 pages long.

you will need to bring it along when you do the shopping or go out to eat (ha, that's my sense of humor rearing its ugly head there, b/c you *can't* go eat to eat anymore w/ corn allergy!), you will need to bring it in with you to any dr. visits, pharmacy pickups or hospital visits. you'll need it for your kids' teachers and caregivers.

nobody can understand the scope of corn contamination even when you show them. to make matters worse, you feel completely invalidated and shunned because there are no labeling laws to protect you like there are for peanuts and gluten. corn can hide under any of a million names and doesn't have to be identified. you have to do the detective work yourself.

i don't think corn is evil b/c my baby is allergic to it. we love corn. i used to say it was like eating little bits of sunshine. i miss corn. creamed corn, corn on the cob, niblets... i couldn't get enough. when my baby weans, i will go back to eating whole, organic corn. i hope to do the same with peanuts someday - they are a great source of protein and good fat.

but when corn is so adulterated and polluted and denatured and chemically processed and then flooded into every food we eat, it does become something evil. i don't think the human system was meant to digest all these different perversions of the same thing in massive doses in every single thing we eat. i can't imagine how much corn by-product we were actually getting in one day before i knew my baby was allergic!

and then all the dr. told me to do to eliminate it was to stop eating anything w/ the word 'corn' in the label. not only was it in just about every single thing we still ate, but then it was in the breastmilk i gave him to soothe him when he screamed all night and when that didn't work, it was in the medications i gave him to stop the insane itching and swelling. corn on top of corn on top of corn and i didn't even realize i was overdosing him *still*, when i thought i'd cut it out!!

it took joining a food allergy group and finding the food allergens list to realize we were still getting corn in everything. when i questioned the dr., he said most of the time when corn has been so altered from its original state, even allergic people don't react anymore. "it's not really corn anymore" is what he insisted.

he believed this so much, that he convinced me we needed to put my baby on neocate, a powder for babies in comas or with severe GI devastation who can't digest or process foods. it's a complete elemental substance, it's just proteins so broken down it's pure calories . if you could blend up & predigest twinkies and steak and not have anything allergenic in them, that's what it would be like, it's just to get weight on and keep babies alive.

by now my baby was so scrawny i was desperate. when i took the powder home, the 1st ingredient i read was 'made from corn syrup solids' i called the allergist back and he said it's so processed out, he's never had a corn allergy baby react to it in all his years of treating allergy children. i quelled my misgivings and started giving it to my baby in his applesauce that day. that night he was covered in hives and screaming. they seemed better by morning, so i tried it again. again he reacted. i tried it for 3 days and every time, he had a reaction.

i went to a new allergist for a 2nd opinion, he recommended the same product and said my baby must have been reacting to something else by coincidence. i trialed the powder supplement again 2 times for 3 days each, over the next 2 weeks. again, he reacted every time.

that's just a sample of what i've been dealing with over the last 2 years. it's been frustrating beyond belief. and again, there are NO medications i can give him if he gets sick. the antihistamines made his symptoms worse, being made with the corn (syrup) he's allergic to.

i finally found a compounding pharmacy near me that will make him suppositories in a cocoa butter or coconut oil base and suspend acetaminophen in them for pain and fever relief. but it's expensive, i can't carry them in the diaper bag in summer and insurance won't cover it.

so the best plan is to try and keep this guy from getting sick in every way i can. which makes me VERY glad i'm already fine w/ super extended bfing, because w/ all his issues, he's one of those kids that should nurse as long as possible. if he gets sick or injured and has to go to the hospital, i will have to try and get them to use rubber tubing whenever possible instead of plastic. saline instead of sucrose. dealing w/ them feeding him would be a nightmare ordeal. guess what they'd want to put him on w/ all these food allergies? neocate! he'd have to get even the most basic meds in an IV.

this is just a small peek into the world of dealing w/ a kid w/ severe corn allergy, i wouldn't wish it on my worst enemy. but if this is the hand you've been dealt, i hope my experiences can help you. be prepared to advocate for your child. educate yourself and always carry your research with you. i have a dr.'s note on me at all times in addition to the corn allergens list, listing his food allergies and stating that he can only eat foods prepared at home so we can always take his foods wherever we go.

i have a medic alert id bracelet on him at all time - as well as for my daughter w/ her life-threatening peanut allergy. i make sure he knows he can never eat anything w/out checking w/ us 1st. every time he shows interest in any food, i tell him whether he's allergic or not, so he will have the clear idea that he's allergic to most things and not be tempted to try any.

all the other food allergies for my son are a breeze compared to this one. you just check the label -by law, the top 8 allergens have to be listed in plain language no matter what form they've been used in. now, finding products w/out all these combined allergens plus is the impossible part.

all i wanted when my baby 1st got diagnosed was for someone to literally sit down and write me a menu out. breakfast, lunch and dinner - and some snack items- for seven days. just tell me what's safe, tell me where to find it and i swore i'd cook the same things over and over for the rest of my life if it would make my baby healthy and normal.

i saw pediatric allergists, our regular pediatrician, a pediatric gastroenterologist, a pediatric naturopath specializing in celiac disease and multiple food allergies (but not corn so much!), a pediatric dietician... i paid hundreds and hundreds in copays and fees our insurance didn't cover and i asked them all the same thing, "can you please just sit down and help me come up w/ a 7 day menu that eliminates all of our allergens?" but nobody could, or would, or had the time. they all said vaguely, "go organic!" "don't make anything your grandmother wouldn't recognize!" "cook from scratch!" "look up allergy websites and find recipes online."

i couldn't find any sites or people dealing with exactly the same allergies, i couldn't find recipes that sounded like something all my kids would eat... it has taken me 2 yrs to finally get my little scrap of gristle to baseline.

'baseline' is the holy grail in allergy-world, it means 'normal'. he looks normal, he acts normal. he sleeps all night, he isn't itchy, he doesn't get hives, he isn't miserable. (okay, he's 'terrible 2', the youngest of 5 and got very entitled, spoiled & demanding during his scary 1st 2 yrs of life, maybe the 'miserable' is debatable, bwahaha!)

he still isn't growing and gaining like 'normal' kids, but he isn't getting all the hormones that are in dairy or all the many fattening versions of corn sugar that are in every single thing other kids eat, so i think this *is* normal for a kid w/ his set of circumstances.

i started out by picking just a couple meals i could find safe replacement ingredients for and making them in the new allergy friendly way. i tripled and quadrupled the amounts called for and fed the whole family and had leftovers for breakfast and lunch the next day. we ate the same thing for days in a row sometimes w/ a miserable baby and no time to research alternatives.

eventually, i got 7 different days planned for. we ate the same thing every week on the same day. it made everything easier: grocery shopping, budgeting, even the actual list: we just print a list of all the same items we need for all the recipes, print it off every week and put a check next to the things we need that particular week.

when the seasons change, we sit down and pick from my pile of tried-and- true recipes and change what our meals are. sometimes we do it more often if everyone agrees we are sick of something, but in general this plan works great for kids, who embrace repetition and routine.

i made sure to figure out a chocolate chip cookie recipe and ice cream replacement and safe chocolate right away, too - to help fight temptation. all my hard work has finally paid off w/ a healthy, recovering multiple food allergy baby. i give him medical grade, allergy friendly probiotics to help repair his ravaged gut from all the things he was eating that were harming him. he's been this way since he was born, so even at 2, he knows to ask before he puts anything he doesn't regularly eat into his mouth.

along my journey, i've run into many other moms facing similar daunting trials. i've tried to help, but it's so overwhelming for them to take in. that's why i'm so glad nancy convinced me to do this blog with her. i want to be able to put it all down in one place, where people can come back at their own pace and read and reread & digest as often as they need to.

my next plan is to post our daily menus and recipes for 7 days. this would have helped me sooooooo much when i was getting started. i would have seriously paid someone big bucks just to sit down and come up w/ one for me. so i will do it, and provide ingredient and brand info. not everyone is going to need to eliminate all the things we do, but the only big allergen we don't have to eliminate is seafood/shellfish, so if you have to eliminate several of the others, my menu should have you covered.

seafood/shellfish is easy to replace w/ chicken in most cases or just to leave out if you are vegetarian and beans won't work as a sub. we are also gluten free by the simple fact that once you've eliminated wheat plus corn plus dairy plus soy, there really aren't any gluten-containing things left we can have, anyway. i do know gluten can be as pervasive and problematic as corn, tho - and is even in lots of medications and products you wouldn't suspect, too - so i recommend checking out www.glutenzap.com to make sure my menu is safe for you if you're very gluten sensitive.

if you don't yet know what your baby is allergic to but have just been advised to eliminate all of the top 8 allergens, this plan will work for you because when you start adding things back in, you just might discover corn was a problem and save yourself months or years of frustration and illness - corn is one of the last things dr.s tell you to try eliminating simply because they know how hard it is and how frustrated you're going to get .

sooooo... if i'm telling you from personal experience (and i *so* am!) the hardest part is figuring out the actual nuts and bolts of what is safe to eat & fairly easy to make & how to make a week's worth of meals and snacks out of those few and far-between items and i'll do that for you.... why not go for it ? you'll only be healthier for it !!

and if you already know corn and the other allergens i eliminate are a prob for you, maybe these can just be extras for your own meal planning. you can thank me in the 'comments' function. ;-) or by sending me some recipes of your own if they eliminate the same things i need to !

so now that i've written this epic prelude, when i get another chance, i will sit down and list the meals and recipes for each day of the week. i'll also list some of the alternative ingredients you can use and where to find them.

i want to caution that i still really consider myself to be a beginner at feeding my family an elimination diet. i've been hunkering down, doing the same tried-and-true, safe things for 2 yrs now. it worked and my baby is finally healthy, but i haven't had much time to get fancy and experiment much. i'm going to be sharing w/ you basics such as choc chip cookies, goulash, spaghetti w/ meat sauce, seafood fettucine alfredo, jambalaya, etc...

if you're just starting out, too and need ideas for things kids & grownups will actually want to eat that are safe, this will be for you! and they will serve as building blocks for more inspired meals once you're familiar w/ the brands and items that are safe. if you want novel and daring allergy safe recipes, check out some of my links, the vegan goddess one is truly inspiring!


AnneMarie said...

I just found your blog and am excited to read everything. I have been dealing with my daughters food allergies/intolerances for three years and seem just as confused now. Sometimes she reacts to things and other times it seems that she doesn't. ACK!! I think there's an accumulation factor for her. Anyway, glad to have found your blog, and can't wait to see your menu!

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