Eating with Food Allergies – The Allergy Way

Leggo Those Eggos

I thought it was almost over. I thought our days of mystery symptoms and elimination diets were a thing of the past. I thought in a few years we’d give our son some oats, he’d pass with flying colors, bada bing bada boom, happily ever after, blah blah blah. I even wrote a final Allergy Way post that basically said “we’re done with food allergies, it’s been real, see ya later alligator”.

We. Were. So. Close. Until this happened…

This rash on my 2-year-old son Winston’s face that appeared out of thin air.

It all started at the beginning of May, just about the time the snow melted here in Northern Michigan (yes, I meant May) and we needed to bust out the sunscreen. Certainly this red, flaky, super irritated rash on Winn’s adorable little cheeks was just from that. As I too have a sensitivity to sunscreen, I switched to the kind I have to use and hoped for the best.

Not only did the rash not get any better, it just flat out got worse. This was followed by a bout of diarrhea. When I say bout, I actually mean 7 weeks worth of diarrhea. A few times he even said “my belly hurts” aloud after eating. Our little guy is so tough, he will have blood gushing out of his foot, smile at you and say, “look, I got owie!” So if he says his belly hurts, you better believe it.

We initially tried to treat the rash with a steroid lotion. It would get slightly better, then come right back. I just knew in my heart that it was something he was eating. So here we were again, tracking daily foods in a little notebook, counting diarrhea episodes and looking for any consistences whatsoever. I found nothing. We even removed dairy for a week, just to see. Again, nothing.

If you recall from my previous posts, as an infant Winn tested positive for allergies to oats, bananas, soy and cocoa bean. He was then retested in August of 2019 for oats, bananas and soy at the University of Michigan Food Allergy Clinic and all were miraculously negative. As of May, we had not given him any oats (waiting until age 5), so I knew that wasn’t the culprit. Because of our other son Carter’s EoE allergy to soy, we are basically a soy-free home, so I knew that wasn’t the culprit. And Winn just really doesn’t eat bananas, so that couldn’t be it either. We did, however, start potty-training using ridiculous amounts of chocolate out of desperation. Perhaps he hadn’t outgrown this allergy yet after all.

Off to the allergist we go… again. This time in the middle of a pandemic though, so our experience was just a little different than normal. We masked up and packed a bag of clorox wipes, hand sanitizer and hands-free snacks like applesauce squeezes and suckers. Then I spent about an hour in a small room shouting “don’t touch that” and “let’s do your hands again” at my child over and over… I digress.

I walked through everything with our allergist; pretty straight-forward this time.

“Well he got this rash on his cheeks 7 weeks ago and has had diarrhea pretty much every day since. I’m assuming because of the rash that it’s allergy so I wanted to start with you. But celiac and lactose intolerance also run in my family, so those are my plan B.”

“Can you tell me what he typically eats every day?”

“Every morning he usually has either an Eggo waffle, toast or cereal with milk. Snacks are usually crackers or chips of some kind. He’s kind of obsessed with Eggo waffles so sometimes he’ll eat them frozen right out of the freezer in the middle of the day. I know, it’s weird. Then for lunch he has PBJ, chicken nuggets or pizza. Usually lots of fruit for lunch… apples, grapes, strawberries, pears. Then for dinner it’s more meats and vegetables, pastas and rice. Oh and lots of chocolate; we’ve been potty training with MMs and Hershey bars.”

“And when does he typically have the diarrhea?”

“Well come to think of it, he often has it after breakfast. Today he had a waffle and didn’t even finish it before he ran out of the room to go. Sometimes it’s later in the day though, when he hasn’t eaten anything immediately before. I haven’t been able to identify an exact food really, but my gut is telling me dairy or maybe wheat. That’s what he eats the most of.”

“Let’s definitely do a skin test for dairy, wheat and cocoa bean. I’m also suspicious of corn and eggs. Those would be in the waffles, cereal, even crackers and chicken nuggets. I don’t think anything else is necessary for now. If it’s all negative, then I’ll order up a celiac test. Sometimes people get a rash with celiac disease as well.”

Twenty minutes later and we had an answer.

That, my friends, is a positive reaction to eggs (#5).

What in the world??? Eggs???

Yep. Eggs. Quite possibly the only allergen this family has never had to eliminate before in the last 7 years. I guess we were due.

But why now?

Because of the 4 As… ANYONE can become ALLERGIC to ANYTHING at ANY TIME.

Of course, the first thing I did when we got home was raid the pantry to read 100 labels because I knew, of course, the first thing Winn would say when he walked in the door would be “can I have a snaaaack?” But to my surprise, most of the foods he eats regularly are naturally egg-free. We were in luck! Only a few baked goods, some canned soup, muffins, pancake mix and those dang Eggo waffles would need to be removed. Even his chicken nuggets were good to go.

So what am I doing right now while I write this? I’m drinking a glass of wine at 10:30 at night, making my son a batch of egg-free waffles in the barely functioning waffle iron we were gifted 10 years ago at our wedding. Why? Because I’m (still) an allergy mom and this is the allergy way we do things.

Stay tuned as we embrace this new egg-free adventure! Fingers crossed!

Click here to read more of Winston’s food allergy journey.

If At First You Don’t Succeed

As mothers we are biologically programmed for one thing: to protect our young. We stare at our sleeping newborns like weirdos to make sure they are breathing and put gloves on their hands so they don’t scratch themselves. We plug the outlets, gate the stairs, bumper the sharp corners and lock up the cabinets. We cut food into teeny tiny bites. We strap helmets on heads and lather on sunscreen for outside play. We hold hands in parking lots and use five-point harness seats in the car.

As allergy moms, we go a step further. We read labels, read them again, and then read them one more time just to be sure. We make special meals and creative birthday treats. We drive hours to see the best doctors. We make charts to track symptoms. We carry around Epi-Pens, Benadryl, steroids and even Zofran. We work diligently to keep our children protected from their allergens.

So when the time comes for our children to trial a food that they definitely have been or may still be allergic to, it goes against all that we know. It’s like someone telling you to go ahead and give your baby a whole grape… just to see what happens. Or it’s fine to let your toddler cross a busy street by himself. Seems crazy, right?

At our latest University of Michigan appointment where we met with a pediatric allergy specialist, all three of my boys passed their allergen skin prick tests to foods we have been avoiding for years… which just blows my mind every time I say that out loud. We were given the go-ahead to begin trialing these allergens at home. We were also informed that soy lecithin (an emulsifier used in MANY foods) was actually safe for most soy-allergic people. A whole world of foods was opened up for us.

But as I walked through the grocery store, reading labels upon labels and throwing new foods into the cart, I couldn’t help but be overwhelmed with emotion. I was excited and terrified at the same time, to the point that I couldn’t control myself. Yep. I was that weird woman you see walking down the aisle, sobbing into a package of cookies. Then I picked up the carton of soy milk, the food that caused my son horrific pain for almost two years… the food that caused my family unbearable amounts of stress and sleep deprivation. I could hardly set it in the cart. I felt nauseous.

Nope. Can’t do it. This is a horrible idea. How could I possibly give Carter soy milk?

Because… I must. As much as I want to protect my children from any suffering, I also want them to have an easier life, to be able to eat anything they want without worry. And I also want answers. I need to eliminate the what-ifs and the maybes. What exactly are they allergic to and what type of allergic reaction (i.e. EoE, FPIES or IgE) are we dealing with?

But before any serious trialing began, we wanted to test out soy lecithin to see if our family could finally eat all of the processed foods we had been missing out on for so many years! I kid of course (kind of).

And so we started with the most amazing processed food of all time… OREOS! Because who doesn’t want to eat Oreos!? Carter, apparently. It seems his years of not being able to eat “milk’s favorite cookie” (or milk for that matter) ruined his tastes. He said they were just “OK”. Eh well, more for me!

Let The Trials Begin!

MASON

First up was Mason and his IgE-mediated strawberry allergy. We were told to give him 1/4 of a strawberry and wait for a reaction, then give him another 1/4 of a strawberry 2 hours later. If no reaction occurred, we would give him a whole strawberry the next day. So we did, with Benadryl and an Epi-Pen on standby. And my friends… nothing happened! For the first time in 6 years, we had one child without any food allergies!

CARTER

Next up was Carter, our Eosinophilic Esophagitis (EoE) kid. The only food he was still avoiding was soy and we were to reintroduce soy milk gradually over 10 days, increasing the amount daily. If after the 10 days he had no symptoms (i.e. gagging, vomiting, belly aches, throat pain, night waking, etc.) he was able to continue eating soy in all forms.

After 10 days of me repeatedly (and annoyingly) asking Carter how he was feeling and if his throat felt funny, it seemed he had passed the test, which we were definitely excited about. Unfortunately with EoE, however, symptoms are not a reliable way to determine an EoE trigger (as we learned a few months ago… see my post It Ain’t Over Til’ It’s Over). Some people do not complain about or are not aware of any symptoms at all. The only way to know for sure is to scope and biopsy to count the number of eosinophils present in the esophagus. If the allergen is not a trigger, this number should be 0. (Carter’s one and only scope 3 years ago showed a count of 6, not high enough to diagnose active EoE, but proof that he did have it before we removed his allergens, since there was no evidence of reflux or any other condition at the time).

The UofM allergist recommended that we perform a repeat endoscopy only if Carter presented symptoms at any point after his 10-day trial. But as I read more and MORE moms sharing their stories about how their children had no symptoms but still failed their scopes, I just couldn’t let it go. I wrote the allergist a 2-page message with my concerns and questions.

“I am so terrified that [not showing symptoms] will be the case for Carter. That we will be giving him soy (which I know without any question of a doubt made him very sick) but at a smaller amount than what he had as a baby, and that he won’t know how to communicate any symptoms OR won’t even realize that he has any symptoms at all. Or does it not even matter if one has any eosinophils present? Can he walk around with eosinophils for the rest of his life as long as it doesn’t seem to bother him? Or would he run the risk of damaging his esophagus if we left it untreated?

At this point I am really wanting to scope Carter one more time after the soy trial to get some definitive answers. If he scopes clean then we never have to worry about this again and he will no longer have any food restrictions. If he doesn’t, then we will work with you to identify his trigger.”

She very promptly replied, answering my questions.

“EoE should not be left untreated, even if symptoms are not present… There should be 0 eosinophils in the esophagus. My initial recommendation was to perform a scope in case he has any return of symptoms but if you would like, I am agreeable to recommending a scope in a few months to be sure.”

So after some back-and-forth with the UofM pediatric GI department and the Helen Devos GI department, we made a consultation appointment with Helen Devos in mid November, as they had the first availability. We will discuss (rather I will demand) a repeat scope to check for Eosinophils.

But for now, Carter is able to eat ANYTHING he wants, and boy is it amazing. Stay tuned to find out what happens next!

WINSTON

And last but not least… Winston, our (maybe) chronic Food Protein Enterocolitis Syndrome (FPIES) kid. I say maybe because it has been over a year and we never really received a definite diagnosis. But looking back, chronic FPIES to oats (and maybe others) seems to be the only thing to fit his symptoms: worsening vomiting over several months (from infant oatmeal) with a peak after the introduction of Cheerios. And although he never had severe diarrhea, I do recall moments where I questioned his stool consistency (mucous, foul odor, etc.), not realizing at the time it might be related. He also never had confirmed failure to thrive, but as I look back at his baby book weight chart there is an evident decline in his weight percentile over several months… fortunately he was just really fat!

Winn had been avoiding soy, cocoa bean, bananas and oats – all of which he tested positive for on a skin prick test (SPT) in the past. But a positive SPT does not correlate with a positive FPIES trigger; the only way to know is to eat the allergen. We were to reintroduce one food at a time (minus the oats), starting with a 1/4 tsp and then gradually increasing the amount over 10 days. We were looking for any FPIES symptoms (i.e. vomiting and diarrhea). I started with cocoa bean of course. And after 10 days, he passed!

Next we trialed soy, in a similar method as Carter using soy milk. And again after 10 days, he passed! We were on a roll!

We saved bananas for last, because he had eaten so many bananas as an infant I felt they had more potential to be a trigger. The problem was, I couldn’t get Winn to eat a banana. He fought me every single day. I finally just had to squirt banana baby food into his mouth. He was thrilled, but it got the job done. And I will say it again… after 10 days, he passed!

In A Tree-Nutshell

So what does all of this mean to our family? It means that we went from avoiding a bazillion allergens (corn, dairy, soy, wheat, tree nut, coconut, strawberry, fish, blueberry, sweet potato, sesame, vanilla, cocoa bean, banana and oats) at one point or another over the last 6 years, to now avoiding ONE… oats. DO YOU KNOW HOW EASY IT IS TO AVOID OATS? All that we know has been reversed. We are living a whole new life!

Yes, I’m a realist. I know there’s a chance that in the future Carter will be off of soy again (pending scope results) and that Winn will fail his oats trial at age 5. But it doesn’t even matter! Soy and oats are a breeze, especially if everyone could continue to eat soy lecithin. And compared to all that we’ve been through? No big deal!

But for now, right at this moment, I will sit back and watch my children eat the Oreos and the Cinnamon Toast Crunch. I will watch them eat the restaurant chicken strips and their friend’s birthday cake. I will watch all 3 of them hoover their Halloween treats without worry, because for the first time EVER they can eat any candy they want.

I will watch them enjoy food again.

I will thank God for guiding us to where we are today.

The Allergy Way To Vacay

People often make fun of my Type A personality. I’ll be the first to admit that sometimes I can be a little extreme. When I was a child I used to alphabetize my sock drawer by color. Yep. I don’t do that anymore though, now that I have three children of my own… most days I don’t even have time to put my socks away. But I do like to be organized. I like to label closet storage bins and make spreadsheets for just about everything. I even plan vacations a year in advance. Laugh at me all you want, but I have children with food allergies. Planning is a must.

We just took our FIRST ever (just us) family vacation to Myrtle Beach, which may seem strange to people because our oldest son Mason is already 6 1/2. It was our first vacation, not by choice, but because of… food allergies. After Carter was born, we couldn’t go anywhere. His food allergies and Eosinophilic Esophagitis symptoms limited us for about 2 years. I could barely take him to the grocery store. Then Winston came along and the only place he went was the doctor’s office. Last summer he puked so much from his food allergies I had to have our groceries delivered.

I originally had this Myrtle Beach trip planned for 2018 spring break, not knowing that Winn was going to develop food allergies. So we canceled (because of this and other non-allergy family issues) and rebooked for 2019. I was DETERMINED to take our kids on a fun vacation. After what they went through, they deserved it… we all deserved it.

Of course, I made a packing list (in a spreadsheet – ha!) three weeks in advance to make sure we had everything we needed for our road trip.

Clothes ✔️
Toiletries ✔️
iPads and Toys ✔️
Bread and Yogurt ✔️

Bread and yogurt?

Yep. We have to bring our own allergen-free foods like soy-free bread and dairy-free yogurt because there’s no guarantee I’ll be able to find these foods in a new city. I also know that the only thing my allergy kids can eat at the continental hotel breakfast is probably an apple.

We decided to stop part way, knowing full well our 17-month-old wouldn’t last the full 16-hour drive. I chose a hotel in a town outside of Charleston, WV, for no particular reason other than the timing was good. Right next door was a Golden Corral restaurant, a place we had never been before – and probably won’t ever go again… yuck. But we didn’t know, so we ventured in. I was excited because Golden Corral posts their allergen information online, so I was able to pull up every item in that buffet and see who could eat what. I wish someone could have video taped me walking through the line, anxiously scrolling on my phone as I dished up plates of food. I was getting some looks from the local folk. Eh, whatever.

We finally made it to Myrtle Beach and checked into our villa… a 2-bedroom condo with a full kitchen. A full kitchen was a necessity so that we could make some of our own food. It was so stressful trying to find allergy-friendly restaurants for dinner, I can’t imagine trying to eat out for breakfast and lunch too. At the grocery store a couple miles away, I picked up our usuals… and boy was I glad we brought our own bread! There was not one loaf on that shelf without soy in it.

I promised my husband I wouldn’t go crazy with the activity planning and tried to just “wing it”. But this only made me more stressed out. We so wanted to eat at the fun local restaurants with the perfect views of the ocean, and we tried to… once. The children’s menu had chicken strips, hot dogs, spaghetti and some others, one of which I figured MUST be safe for the kids to eat. But when our waiter (who barely spoke English) just didn’t understand what I was asking about the ingredients, it was game over. Winn was starving and we had to leave. I was so bummed; honestly I went in the bathroom and cried for a minute. We don’t have the luxury of picking a random restaurant; it’s too complicated. So we ate at Burger King that night. Then we decided to plan out restaurants for the rest of our trip.

I got on the Allergy Eats app (which I highly recommend for people with food allergies) and started my research. Allergy Eats allows you to enter your location, then select your allergens. It will pull up all the restaurants in your area rated in order by how well each one accommodates those allergens. You can also read other people’s reviews.

The last three nights we ate at Longhorn Steakhouse, LuLu’s and Hard Rock Cafe, all of which have their allergens posted online. My favorite by far was LuLu’s. They actually had separate menus for each food allergen AND a second waitress came out to take our order; she said the cook would make the boys’ food in a different area of the kitchen, change his gloves and use all new equipment. The service was SPECTACULAR, and it makes my heart so happy to watch my kids pick out food from a menu “just for them”.

Overall, I’d say our first family vacation was a success. Our boys had so much fun! We swam in the pool, walked under sharks at the aquarium, saw a movie (when it rained), walked the boardwalk, collected shells on the beach, played at the playground, bounced away at the trampoline park, held baby alligators at Alligator Adventure, won 3,700 tickets at the arcade, golfed a little Jurassic putt putt, and rode go-karts and kiddie rides at the Broadway Grand Prix. We may have been making up for lost time, just a little. So worth it! ❤️