In Allergy Diagnosis Pt. 1, you learned about our journey to a corn diagnosis.  I thought the diagnosis was the destination.  I thought that once we had that confirmation, things would be easier.  Little did I know, the diagnosis was just the first mile of a cross country road trip. 

We knew we needed to avoid corn and corn derivatives.  We knew we needed to read ingredient labels.  We knew we needed to make more things from scratch.  We knew we were on a long, arduous journey of relearning our cooking skills.  So that’s what we did.  We bought more fresh produce from the grocery store, we learned how to make bread, we shopped from the “allergy friendly” aisle, and health food stores.  We had some success.  Josiah was feeling better most days, but his reactions were still happening frequently.  The blessing, however, was that we were able to distinguish his reactions very clearly now that we had removed so much corn from his diet.  

We started sifting through the things that were still causing reactions.  We had to remove all boxed cereal because the fortified vitamins added to most (all?) cereals are usually contaminated with corn.  We noticed that he was reacting to enriched all purpose flour.  Yup, the “enriching” process is corny.  Then he started having issues with the big brand cane sugar we had been using.  That brand processes confectioner’s sugar on the same lines/same plant as their cane sugar.  Guess what keeps confectioner’s sugar from clumping…you’ve got it! Cornstarch. Then the whole wheat, not enriched, flour caused problems too.  We realized that many places that package flour also package cornmeal and cornstarch. Eventually we discovered that store-bought produce, meat, and dairy were unsafe for Josiah. Produce is an issue because of the preservatives, waxes, and sprays used to keep the food fresh and pretty during transport. Meats are usually packaged with soaker pads and/or in styrofoam, both of which have corn in their production processes, not to mention the washes used in butchering are usually a corn-derived wash.  The vitamin D added to most commercial dairy is usually carried in an oil…more than likely a corn oil. We quickly understood that this allergy was much more than just ingredient lists.  We were dealing with a sensitivity to miniscule, trace amounts of corn present in items by cross contamination or processing.  

So we sourced a specialty, ancient wheat, flour that has less cross contamination risk.  We tried different brands of cane sugar until we found one that worked for him. We bought locally grown produce.  We stumbled upon a local dairy that bottles their own milk yards away from the pastures their cows live in AND they deliver to our front door!  All the while, I continued referencing the corn allergy facebook group and the Corn Allergy Girl blog for ideas on brands or foods that others had been able to tolerate.  We were FINALLY getting a handle on this new diet.  We were, finally, in a place where Josiah was having more days in a row without a reaction.  We can do this! We’ve got this!

Wait…where did that rash come from? He hasn’t eaten in hours.  Why did he have trouble breathing in Walgreens while, ironically, waiting for an epi pen prescription? It became apparent that this allergy was more than just foods and diet.  The environmental exposure to corn products was something we hadn’t considered and were a bit blindsided by. We narrowed the random, mysterious rashes to polyester.  After laying on a polyester-filled pillow for 45 minutes, Josiah had a rash that covered his face and neck. After removing that pillow from his bed and stuffing a cotton pillowcase with cotton towels, the rash disappeared within 20 minutes.  His gymnastics uniform gave him a rash during gymnastics competitions.  So, we replaced all polyester in his closet and bed.  We purchased a down mattress for each of the boys, purged all of their clothes to keep just cotton (or majority cotton) items, and started pulling up all the carpet in our house. (Yes, carpeting and the padding are frequently corn products).  

We also turned our attention to the airborne aspect of his allergy. (The picture in front of the corn pit was prior to realizing the airborne reactions!) We learned that many cleaning products contain disinfectants that are produced with corn.  Hand sanitizers contain ethyl alcohol that is distilled in corn.  (We realized this when his gymnastics coach used hand sanitizer right before spotting him and his face and eyes swelled up.) Fragrances of candles, scented waxes, air fresheners, are, basically always, carried in a corn oil. Personal care products like lotion, toothpaste, body washes, etc all have corn derived ingredients. We switched our laundry detergent, dishwasher detergent, hand soaps, toothpaste, shampoos, and cleaning products. I got rid of my beloved scented wax collection. Then we also got Josiah an n95 mask to wear when he goes into public places that may have any of those items listed above.  He didn’t (and doesn’t) always need to wear it, but there’s never a way to predict when he’d be exposed, so his mask got put in his go-bag with his epi-pen and goes everywhere he goes.

Then one night, the boys were all lying on each other’s beds watching TV.  Josiah decided to lay on Jedi’s bed.  Jedi, being 4, still had a waterproof protector on his mattress (that is 100% polyester and since it wasn’t on Josiah’s bed, I made the mistake of thinking it would be ok).  About 30 minutes after watching TV, Josiah came downstairs with a full body rash and abdominal cramps.  We gave him compounded benadryl and kept an eye on him.  His rash got better, but the cramps got worse.  It got to the point where he couldn’t stand up straight.  I knew that anaphylaxis could be more than just airway issues, so I was starting to worry and text my sister in law about whether or not we should epi.  Then he rushed to the bathroom to vomit.  I knew it was time for the Epi-pen, but still second guessed myself.  A few seconds later, he said he felt like he was breathing through a straw, all that doubt went out the window.  We used the Epi-pen and in less than 10 seconds, Josiah got color back in his face, he could stand up straight without the cramps, and felt like his breathing was easier.  We bundled up and headed into the ER (less than a 5 minute drive from our house) with our second Epi-pen ready. 

Once we arrived at the ER, they took us back immediately.  The doctor and nurses were amazingly helpful.  They weren’t overly aware of all that a corn allergy entails, but they were very open to working with us to find the correct combination of steroids and antihistamines that Josiah can have.  I think the poor doctor and nurse called the pharmacy no less than a dozen times checking on ingredients for different medications.  Finally, they found a combination that worked and I confirmed that other corn allergic people had used them during their ER visits as well.  Thank the Lord, Josiah did not have a rebound reaction and after staying for observation for a few hours, we were able to go home safely. 

That night changed our outlook on this allergy.  Until that night, we were dealing with a very uncomfortable, but seemingly non-life-threatening, allergy.  However, knowing that your child’s life was saved by just a fraction of a milligram of liquid, somehow changes the way you look at things. We always knew we had to advocate for him.  We always knew we wanted him to live in comfort and not constant distress.  We always knew changing his diet was for his well-being. But, knowing that avoiding corn isn’t just about comfort, it’s about life and death…it weighs on you, as a parent.  We know that we serve a mighty God and that His plan for Josiah is one of prosperity, not harm.  We know that we can rest on His promises of protection.  Those things give us comfort and peace, but I cannot lie to you, the anxiety produced by this allergy is something beyond what I thought I could handle. Since Josiah’s diagnosis, we’ve discovered that Jason and Jedi are also reactive to corn.  One week, in the near future, I’ll blog about how we figured that out.  But, until then the last thing I’ll leave you with is this: It is by God’s grace alone that we navigate this allergy with (albeit tentative) confidence.

To really know the Edwards family and our lives, we have to dive head first into our allergy experience. Food allergy parents understand that one little diagnosis changes your way of living.  We are fortunate to not have multiple food allergies, but we have an allergy to what I would consider, one of the most insidious foods in the American diet and lifestyle: Corn.

Our journey with food allergies is a long one.  So, let’s start at the very beginning.  After all, as they say, it’s a very good place to start. (Disclaimer: None of this is meant to be used as medical advice.  It is merely the story of our trek through discovering food allergies)

We first started this allergy journey when we moved back to the US from Germany.  We noticed a HUGE change in our, already, spirited then-4-year-old, Josiah.  He has always been an intense child.  He has never done anything halfway.  He has been 0 to 60 his entire life. Whether that was in his tantrums and meltdowns or in his big bear hugs and squeezes.  He lives life BIG.  When we moved to the States from Germany (where he was born) he became even more intense.  He was now going 0 to 100 in .2 seconds flat.  His emotions were literally out of his control. He had even less impulse control than the small amount he had before.  He acted as if he was in a constant state of pain.  You know that pain your toddler has but can’t express to you so they just hit and scream and cry all the time? That’s how we lived for months.  It’s hard to put it into words, but we literally could not recognize the ball of emotions and anger our 4 year old had become.  We assumed it was the stress of moving from the only home he had ever known…and not just a small move, a transatlantic move. 

Then, we spent a weekend at a family friends’ house.  They avoid artificial dyes in their foods.  Magically, Josiah had an amazing weekend.  His emotions were more regulated. He wasn’t hitting his siblings, cousins, or friends.  He played and smiled and had fun.  My brother-in-law, Michael, pointed out the difference in our friends’ diet.  It hadn’t even dawned on me that the diet change from Germany to the US could have an effect on us beyond the obvious of less beer and Schnitzel.  So, desperate to try anything, we decided to cut artificial food dyes and see what happened.  Slowly, we started to see our Josiah resurface.  We still had super intense moments.  We still had meltdowns that could rival any nuclear reactor.  But, we saw glimpses of the child we knew peek through the fog.  We had slivers of hope and could finally see a small light at the end of the tunnel.

After a few months, we started seeing less of our Josiah through the emotions and meltdowns, so we went back to ingredient labels and started tracking his foods and behavior.  We narrowed it down to high fructose corn syrup being the culprit.  So, then, we cut that too.  Again, we saw more and more of the child we knew in Germany coming back to us.  We knew we were on the right track.  Every few months, we had to reevaluate his diet and the ingredients he was consuming.  And every time we cut a new ingredient, we saw more of our precious child emerge through the mess.  

The list of ingredients we had cut out of his diet was snowballing and seemed endless.  In 3 years of slowly weeding out ingredients, we had eliminated all artificial food dyes, high fructose corn syrup, corn syrup, dextrose, maltodextrin, fructose, glucose, sucralose, molasses, and xylitol. We were baffled as to how all these ingredients were related.  We just assumed that it was a processed sugar issue and did everything we could to only consume cane sugar in any food items.  It wasn’t until our friend, Shannon, (the same friend who avoids artificial food dyes) mentioned that she saw a post on social media that suggested all those items were corn-related ingredients.  Surely, that can’t be.  Josiah eats corn on the cob and corn tortillas, he can’t be allergic to corn…can he?

I jumped over to good ol’ trusty Google and dove into a rabbit hole of corn derivatives and ingredients.  The amount of information on corn in the American diet was overwhelming and had my head spinning.  All of the ingredients we had proven that Josiah was reactive to were, in fact, somehow related to corn.  Were we overlooking reactions when he ate actual corn? The next time we had chips and salsa, we decided to really pay attention. We only allowed him one small corn chip, just in case.  Within 15 minutes he had a rash on his face.

At this point, Josiah was 7 years old and was much more able to communicate with us what he was feeling in his body.  He was finally able to explain what happened when he had foods that his body couldn’t handle.  He described intense headaches, stomach cramps, feeling flush, and nausea (well, this explains that 4 year old ball of anger…who wouldn’t lash out while suffering from these things constantly?!?).  These were also accompanied by symptoms we could clearly discern: diarrhea, restless sleep, and, now, hives. 

Our pediatricians had always been aware of the foods we avoided and the rationale behind it.  They were always on board, but never had any additional advice or input.  After finally feeling like we had narrowed down the source of the reactions, we went to the pediatrician armed with the corn derivative list and a food journal that explained, in detail, every ingredient he consumed and reactions he had to each.  We walked away with a referral to a pediatric allergy specialist.  I called to set up the appointment…and had to wait 3 months for the next available appointment.  

While we waited, I started researching more and more.  If there’s one thing you should know about me, it’s that I need an abundance of information on any topic.  I am never in the camp of “that’s too much info.”  So, when I started researching, I really mean, I became consumed. I found a facebook group of people allergic to corn who shared their experiences.  I stumbled upon a blog called “The Corn Allergy Girl” that was filled with lots of invaluable information.  Jason and I spent hours pouring over food labels in the grocery store only to realize there was merely a handful of items that didn’t include corn in some way shape or form. I learned how to make homemade bread.  We started cleaning out our cabinets and our fridge.  We started eating more fresh foods and less packaged snacks.  We eliminated all forms of obvious corn and significantly cut down on corn derivatives.  All the while, we saw continuous improvements in Josiah.  He was now able to focus on schoolwork without fifty thousand (this does not even feel like an exaggeration) redirections.  He would get his chores done without a meltdown. He was cooperating with his siblings more often.  He was becoming a brand new child. 

When we finally arrived at the allergist appointment, we were ready.  We had an arsenal of evidence.  We had a food journal and pictures of reactions.  We had heard that a corn allergy was a tough one to diagnose and that many allergists didn’t understand it and some even dismissed it.  So we walked in ready to explain all the information we had gathered and experienced. We were lucky enough to not have to fight to be heard.  The allergist diagnosed Josiah’s corn allergy based on the food journal and a skin test. We left his office with the instructions to avoid corn and follow up in a year.  Little did we know that this was just the tip of the iceberg in our corn allergy journey. See our post-diagnosis journey in next week’s post.