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.