{WNIMKW} My Canary In a Coal Mine

Editor’s Note: What’s New in My Kitchen Wednesdays, is a semi-weekly series where we weave a personal story with a review of a beloved or new item in our kitchen, in our glass or on our plate. This week, a personal story about the new items NOT in my kitchen any longer. -Christina

You’ve heard someone say or read a comment on a blog or website: “When I was growing up I didn’t know anyone with food allergies”.

As my bio states, all of my recipes are dairy, soy, tree nut and peanut due to Miles’ multiple life-threatening food allergies. He was food allergic since birth with welt-like hives all over his body and scalp by 8 weeks old. I won’t retell his first year but it was bumpy with multiple doctor & specialist visits, antibiotic ointment prescriptions and lots of crying. Nothing worked. The words “food allergy” wasn’t uttered until I gave Miles 1 teaspoon of plain organic yogurt on his 11th month birthday. I will never forget his all-over-body swelling and redness nor his repetitive yawning and lethargy. In December 2009 there was a referral to an allergist and we quickly boarded the Food Allergy Epi-Pen and Benedryl-soaked rollercoaster and there wasn’t a height requirement. The ride has never stopped and it keeps getting scarier.

At 12 months he graduated to adult food; he ate what we ate in mashed up form. We swept the house of cheese, yogurt, and all nuts and we adapted his diet. Then it began happening. From the months 12-16, Miles went backwards developmentally and physically. He had 4 words at 12 months and went backward to zero. He was almost walking at 12 months and quickly stayed at crawling. Of course I’m retelling this story in hindsight, so when I was in the midst of it I didn’t see the free-fall until later. At 17 months, I immediately had him evaluated for NYS Early Intervention Program and he qualified in Speech & Physical Therapy. I remember at the time being completely shocked by the speech recommendation and the three specialists assertion that there was something “off” with Miles.

At his 18 month check up we were all shocked to see that he hadn’t gained any weight and barely any inches in 6 months. His pediatrician and I immediately began putting pieces of the puzzle together, to make sense of it all. He ate a ton of food all the time. He loved all food; he was not (and still isn’t) a picky eater. Due to his presentation, i.e. his food allergies, eczema and asthma, his Pediatrician recommended we see a GI for a possible wheat/gluten issue. We were hopeful that was the answer, because if it wasn’t we could be getting genetic testing. At the time there was only two Pediatric GI’s in a 150 mile radius (now there are three) it took us eight weeks to get in. I made the appointment but stopped Miles’ gluten & wheat intake immediately. I scoured the internet, found blogs and books. The problem with gluten-free is that its just that; gluten-free. It took me months & months to build my confidence with gluten-free recipes where I would also have to substitute nut flours or dairy protein products like butter. I’m NO master baker and I’m learning everyday.

Within 3 weeks of his new GF diet he had gained three pounds and was walking. Within 1 month he had a dozen words. By 8 weeks he was officially discharged from Speech Therapy. His speech therapist wrote in her final evaluation that she didn’t help Miles (she of course did- we loved her- she taught me a ton) but that his diet change made all the difference. By the time we saw the GI, successes and steps forward had been made that we continued the GF diet. By December 2010, Miles was on a twice a month schedule for PT which has since been discharged.

We thought everything was nicely wrapped up. We’re all set; we’ve figured out all of Miles’ issues. Let’s move on with our life! (Not that true food allergies are ever easy- a stranger fed Miles one “baby” style goldfish cracker at an “open gym” event just last month. I turned my back for a minute and poof, down the hatch! Luckily only one ear and one cheek swelled and after a good dose of Benedryl he was fine, happy and ready for his lunch date at Chipotle.)

We soon entered a new stage. During the wheat/gluten/developmental hiccup we also were starting to see Miles struggle at mealtime. He would cough, gag and choke at various times on his meals. This was an unusual presentation; his face usually swelled with hives and his ears would become twice their normal size if he ate a trigger food. It didn’t start to get really bad until this past September when it became unbearable. Every meal became a nails-on-a-chalkboard type situation with him barely being able to get through a meal. Once he stopped eating the coughing would subside. With the help of our Pediatrician we tried a thousand different behavior and environmental changes. Nothing worked. Two barium swallows were scheduled and cancelled. (I was terrified of the high dose of radioactivity.) I became scared hours before I had to feed him. He coughed with EVERY meal. Was he becoming allergic to ALL food?! I rebelled from the kitchen and from his ongoing food journal. You see as a mom of a food allergic kiddo, you become accustom to writing EVERYTHING your little one eats in case there is a potential food allergy waiting in the wings. Which there was. Many of them. I knew it in my gut but I protested in my head. I was overwhelmed and sad and scared.

When would our family be like normal families?

One day I woke up from the haze and began to write things down. I began noticing hints of what was to come. First I noticed sesame was an issue. Sesame is a common ingredient in non-dairy, non-soy cheese like Wayfare. It gives the “nutty” flavor. Then I realized that the small amount of “corn” (“small” relative to the general American public) I was giving him either in the form of homemade popcorn or a store-bought allergy-free & gluten-free products was making him cough, or vomit. The sad part is that most everything store-bought that is allergy & gluten-free has corn in it. Not all products but A LOT. Then I found the smoking gun. Pea Protein. Pea protein is in “everything” that is non-dairy and non-soy…like sesame. Such as the Earth Balance buttery spread that was in ALL of my baked products and in our Daiya “cheese” for pizzas. Ah ha!

Let me back up, Miles loves him some petite peas. We had bags of frozen peas for him to snack on. He would eat them every which way; all alone, in a risotto, on a salad, on some pasta, ect. One day while visiting my parents I noticed he had a major episode with steamed peas. My father & I looked at each other and I knew. On the drive home I gave him the baggie of peas to munch on in the car and his reaction was so severe I had to pull over and give him albuterol and a dose of Benedryl. We waited at the side of the dark Northway for what seemed like hours as I waited to see if I should administer an Epi Pen. He recovered within minutes. Not playing Food Challenge Russian Roulette again.

Over the course of one year he had developed, not grown out of, three new allergies. Corn. Sesame. Pea. He is developing new food allergies, not growing out of them. Not only that, Miles is following a legume-heavy track: soybean, peanuts and now peas. My allergist has warned me that lentils and beans could possibility be next. Peas and corn are gonna be tough this summer, especially when Miles sees it everywhere at the farmers market. He still requests peas everyday. I make an attempt to explain to this 2-year-old that it will make him sick if he eats it. He looks at me in confusion than throws himself on the floor for a blow-out tantrum. I would too. This sucks.

We just had our yearly round of skin & blood testing and the gory details are confirmed. Skin tests were unbelievable; he was tested with 1/100th strength of peanuts, tree nuts, milk, peas and sesame and his back blew up. Ugh. Blood test results were given to me over the phone yesterday during one of my worst migraines in recent history. Perfect timing.

What the “F” is going on with my son!?!?!??!?!

What the “F” is going on with the increasing number of children with food allergies?!?!?!?!?!?

What the “F” is going on with the increasing number of adult-onset food allergies?!?!?!?!?

What the F!!!!!!

This is not a food allergy blog but it is a place where we discuss how food interacts with our life. Mostly good. Some not so good. I do have exciting “new” products to share but needed this post to move beyond what I’ve been feeling in the past weeks and months. I’m also sharing our story because I believe that Miles is our modern Canary in a Coal Mine. What is going on in our country, our food system, that we now have an increasing number of immune systems that recognize certain food proteins as an invader, a virus. Is it GMO’s? Is it the toxins in our environment? Is it all of it combined? What’s interesting about Miles’ allergies, and the top food allergies in general, is that his trigger foods are ingredients in many highly processed foods: dairy, soy, pea protein, gluten. You don’t notice soy protein or whey in your potato chips or sandwich bread until you are looking for it. Its been a real wake up call where these ingredients show up.

I see Miles as a wake-up call for a just, clean food system and society in general. All the super-processing and super-science GMO’s can’t be good for our bodies in the long run…right?! Or do I read too many food policy, environmental and health stories? Of course I have nothing to back up my statements. I won’t have a well-researched link-love to any studies or books written on the subject. This is just a personal rant. A plea for someone to tell me why this is happening to my son.

What’s New in My Kitchen? An ever-growing list of strict avoidance foods. Dairy, soy, all tree nuts, peanuts, gluten/wheat, corn, sesame, and peas.


22 Comments Add yours

  1. Christina – thank you for the ping to my blog – I responded to your blog post on my blog this morning – hang in there! It does get better.

    1. Christina says:

      Thank you for your support Heidi. What a wonderful piece, you always remind me that it truly will “get better”.

  2. Celia says:

    Thank you for the post, Christina. We’re so lucky to have dodged the true allergy bullet, but even with major intolerances I see evidence of a screwed up food system.

    1. Christina says:

      I am SOOOOOOO glad that you & your kiddos dodged that bullet- I think the worst part right now is that you never know how bad the next ingestion reaction will be- like death-like symptoms are right outside the door. The fact that Miles is sooo young makes me even more hyper aware because he has no impulse control yet. If he sees a piece of food spilled on the playground he just will pick it up and put it in his mouth- so I’m constantly on mega-watch. Sometimes its just easier to stay in our home, but that’s no fun for MJ. He needs to live.

  3. Christine says:

    Great, brave post. Because I don’t know anyone with severe food allergies, this isn’t something I’ve thought enough about. I hope to become more aware and sensitive to the many challenges that adults and kids with food allergies face. I’m interested to keep hearing about your personal linkages with the greater food system… the effect that additives, chemicals, GMOs and other food-subsidy consequences are having on our own health. Kudos!

    1. Christina says:

      Thanks Christine. Before my son came along I knew not one single person with a possible-anaphylaxic level food allergy. My husband has every environmental allergy under the son but not to food. Food is everywhere in our society and especially with toddlers so anything outside of our home is a challenging situation. That said, Miles & I are out about town every day we just have to watch very carefully and plan ahead- all the time. For instance, we can’t go to a certain public library because the food particles on the kids toys & books are so great that he leaves with his eyes swollen shut and hives all over his body (he has a contact-allergy to the food too!) Children’s playareas and playgrounds are really tricky because everyone is a stranger (i.e. do not know about Miles’ issues) and kids seems to eat ALL THE TIME. So sippy cups of cow’s milk and goldfish crackers seems like they are everywhere. I just have to be super-vigilant all the time. I watch him like a hawk.

      As for the links, on Sundays I write a roundup of the week’s food system news and commentaries- I usually post a few bits every week about food allergies, organics, GMO’s, food dyes, CAFO’s ect…

      Thanks for reading!

  4. Lana says:

    GMOs scare the crap out of me… more than the hygiene theory, or the “you need to breastfeed theory” (I did), or the vaccination theory (allergy symptoms appeared before any vaccinations). The only thing that I can’t prove is me. What is happening to my system that I’ve passed on to my son.

    I never had any allergies growing up, yet I tested positive for several environmental allergies last year. What the F is happening? Despite a healthy upbringing, I can’t help but question the veggies, the meat, the milk. Something is changing in us. When I think about it too much, I go all conspiracy theory.

    1. Christina says:

      It’s interesting you bring up parental history. Does your husband have any issues?! I don’t. My husband has every environmental allergy under the sun and the more we piece together his childhood it looks like he might of had some food issues- but we will never know in concrete terms just what he can piece together with his dad, which is very little. I also think my husband has a gluten issue but he doesn’t so….. who knows.

      What is going on?!

      1. Lana says:

        No allergies whatsoever on my husband’s side. He has a dry patch on his elbow (maybe eczema?). My dad has some environmental allergies, but that’s the only link we know of. Sadly, we just won the allergy lottery.

  5. I’m an allergy girl: about the only thing I’m NOT allergic to is food. I’e done the Benadryl-steroids-every-antiallergy-med dance, the full body hives, the trips to the ER, the whole bit. But never after something I ate, and never had to modify my diet for it: can only imagine how much that sucks. And I’ve never had to be a Mom watching my little one suffer through the allergy symptoms: MUCH easier, IMO, to be going through it yourself.

    What I can tell you is that allergies do change over time: while Miles seems to be picking up new allergies, it could be that a slight allergy was always there, and his reactions ramp up as his intake of these foods increase. And while other foods may indeed come into Miles allergy camp, some foods may leave over time, or, if they don’t leave completely, the allergenicity of things like gluten or milk protein may lessen to a mild intolerance. It’s all a bit of a dance, and can be difficult to interpret as it can have as much to do with total allergen load (including seasonal changes, if he has any dust, mold, pollen allergies) as any single factor, but I can tell you this: while I have had scary allergic reactions in the past, the vast majority of ‘dealing’ with my allergies has just been routine. At worst mildly annoying. So try not to worry too much about how this is impacting Miles’ life: since it is something he’s grown up with all along, my guess is he will hardly rate it. It just is what it is. I have a good friend who is allergic to chocolate: everyone is always so sad, talking about how awful it is, and he just shrugs “can’t miss what you’ve never had.”

    My point is: while I’m sure it is endlessly frustrating right now, it’ll sort itself out and Miles will likely become a *better* eater than many of his peers because of it (I know I would eat nothing but corn, mashed potatoes and Shake-n-Bake chicken legs for most of my childhood). Hang in there – there are better days ahead.


    1. Christina says:

      Thanks for the support Kaela.

      Part of why I go slightly batty most days is four-fold: 1) that Miles can’t communicate, in a way that I understand, what is happening to his body. So I’m left guessing whether he is having a GI or Allergy or asthma issue; that said, I’ve gotten pretty good at it. Two, from the moment of his diagnosis “they” (food allergy community) drills into you that “potential life threatening anaphylaxis” is on the doorstep just waiting to come inside. That his reactions to his trigger foods could change from hives one day to throat closing the next without warning and 3) there is an undercurrent in the food allergy community that science hasn’t really figured out all there is to know about food allergies and the always “almost never informative” RAST numbers that seem to be magical and have no real meaning at the same time, for food allergy peeps. For example, Miles eats eggs almost everyday yet on this more recent RAST he had moderate numbers. Since he is having no reaction (yet) the Dr. told us to keep on keeping on. Ugh.

      Lastly, food is everywhere. Especially in ToddlerLand so if we leave the house, more than likely I have to never take my eyes off Miles because there is some kiddo somewhere eating goldfish crackers, peanut butter crackers and cow’s milk in a sippy cup that looks like Miles’ and since he’s so small still he has almost no impulse control. He sees the food and wham- he’s on it. He usually looks at me now with a “can I eat this look” and I say no and he doesn’t… So indeed things are getting better one day at a time.

      I know things will get better but people told me that on Miles’ first birthday.. of course they meant well and for 99% of parents, after the first year everything gets easier and more fun. I’m still in shock over the day-to-day “figure it out” social situations/ the constant once-a-week trips to the doctors/ the scrambling to figure out his next medical issues/ the constant medical insurance denials that I haven’t had a chance to take a breath. It’s been a long 27 months. But I am a very positive person by nature so here’s to 2011- we’re hoping turning the corner this year!!!

      (oh and you’re so right about him being a great eater and also not missing what you’ve never had. I see examples of that everyday in Miles.)

    2. Christina says:

      Kaela, I also would love to get your opinion on what you think is going on in this world of ours in relation to the increase in allergies.

  6. Christina,

    I haven’t really done any research on allergies, despite the fact that I deal with them all the time. I mean, I know how the histamine system works and I know the basics, but I’m far from an expert on the subject.

    A lot of people have asked me what I think, in recent years, about the increased incidence of allergies (or asthma, or auto-immune disease): it seems clear, and even doctors agree, that there IS a significant increase. I think you have to be pretty blind to not at least consider a correlation to the overall increased toxin load in our air, drinking water and food supply. But I suspect, like many things, that it is not as simple as that; that there are a number of contributing factors, including the fact that detection & diagnosis of allergies has improved; that, while in general the state of health care in this country is abysmal, there is increased access to specialists, like allergists, that we simply did not have when we were kids; that people are more likely to go to the doctor these days, even for something small, like a hive or mild sneezing, and that all of these diagnoses add up.

    Allergies are complex and you are right when you say that we don’t fully understand them: how they develop, how & why they change over time, or sometimes even how to control them. I do *wonder* about many things, especially in regards to food allergies: the access and exposure to many different types of food proteins (soy, pea protein, etc.) that have not historically been a large part of our diet, the increased toxin load (mercury in fish, herbicides & pesticides in our produce, hormons and antibiotics in our meat) in our diet, even changes in animal proteins based on the way they are raised (caged, etc.) and what the impact of the stress hormones created by the animals themselves is when we eat meat.

    It is enormously complex and every individual is different, which I think is part of what makes it so frustrating, no just for patients and parents but also for doctors. The one positive about the increasing incidence: it is a big problem, and only getting bigger. There is a lot of money in allergy research and it will only increase, and that does translate to new treatments, new understanding of the disease, and new hope for people who deal with it chronically.

  7. Julia says:

    Christina, this just breaks my heart. I really appreciate all of your honesty and bravery in telling your family’s story. I can’t imagine having to tell my son that he can’t have this or that, and as you point out, food is everywhere! To think that you are going/have gone through all of this, and yet you are positive and motivated with all things food is really amazing.

  8. Julia says:

    A friend just posted this on FB this morning: http://www.livescience.com/12989-vitamin-allergies-linked-kids.html
    Thought it might be interesting…

Start a conversation --> We love feedback!

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s