By: Andrew Sarno
When my daughter was 9 months old we felt it was time to incorporate more solid foods into her diet. As recommended by her pediatrician we slowly introduced her to different foods we thought she would like and were considered safe (low risk of allergic reaction). At first we tried her on things like peas, peaches, carrots and potatoes; all the usual suspects. She was not especially thrilled with solids, but we were happy to see that she did not have any adverse reactions to the food we gave her. One night we were having burgers and I thought there would be no harm in giving her some bread. I broke off a few tiny pieces of a burger bun and put them in her high chair. Not long into the meal we noticed that she began coughing. My son was around 2 at the time and he had never had any issues with food so I did not initially recognize what was causing her coughing and sneezing.
The coughing intensified and we noticed that she was having trouble breathing. She was unable to tell us what was wrong, but her eyes said it all. She had a look of desperation in her eyes which screamed “HELP ME!” I will never forget that feeling of helplessness for as long as I live, and I hope to never be in that type of situation again. My wife identified her condition as a serious allergic reaction and told me to call 911. Firefighters and paramedics showed up at our door and rushed my baby to the hospital. I was left there holding my terrified son in my arms while my wife rode in the back of the ambulance with my daughter.
The hospital treated her with steroids and a powerful antihistamine. After several hours of treatment and observation by hospital staff, she was on her way home later that night. I remember being in complete shock because we had no idea what specifically triggered this reaction. We were told by a nurse at the hospital to go to an allergist as soon as possible to get her tested for food allergies. We assumed it was the burger bun because she had never had bread before, but we were still not 100% sure. The bun had sesame seeds on it and we thought that the seeds could have been the culprit. After this miserable experience, we were terrified to give her any solid food at all, but we eventually came to our senses. She had never had any problems with peas and carrots so we just stuck with those for the time being.
We took her to an allergist and after multiple skin prick tests and blood work; we discovered that our little girl was allergic to wheat, dairy, oats, barley, rye and cows. At that time the allergist also said she had a mild nut allergy too. We were told that the wheat in the mini burger buns was probably what triggered a severe allergic reaction that night. The dairy allergy was no concern for us (I am intolerant), but the wheat allergy completely threw me. I had never heard of someone being this severely allergic to wheat. What made the situation more daunting was learning that we were right to have rushed her to the hospital. The allergic reaction she experienced that night was no joke. It was not a simple itchy skin or diarrhea reaction, it was anaphylactic shock.
Anaphylasix is a “life-threatening reaction that can include such systems as swelling of the throat and mouth, nausea, vomiting, changes in heart rate and loss of consciousness.” – ACAAI
This news was horrifying and I became completely overwhelmed when I started to think about how many products and items in our house were made from wheat. Pancake mix, cookies, cereals, breads, crackers, pretzels, salad dressings, body lotions, some shampoos, chicken tenders, soy sauce, candy, food pouches, cereal bars, most kids snacks, just about any canned or frozen prepared food, just to name a few. Even some dog foods have wheat in them. In thinking about all of these foods, I realized that our entire diet was toxic to our baby girl. As a result of my ignorance, I did not know what the best course of action was. I know some people who have Celiac Disease, but I had never heard of anyone having a fatal reaction to wheat, so I knew there would be a steep learning curve.
Being that my daughter was still so young, and for the most part immobile, we decided to just be extremely careful with food around the house. While experimenting with different gluten-free products we continued to cautiously eat foods with wheat in them. My wife and I were very careful, but keeping the crumbs under control while my toddler ate was hard. As soon as he finished eating we would clean him off (sometimes completely change his clothes) and vacuum and mop the kitchen floor before we let my daughter out of her high-chair. Now thinking back on this, it was nuts. At the time the system we had was working, although it was taking its toll on all of us. It was stressful and exhausting.
A few weeks into our modified meal plan we were having pasta for dinner one night. We made wheat pasta for us and rice for her. While making dinner my wife noticed that my daughter started to appear unwell. Without any hesitation we assumed that she must have gotten her hands on some of the wheat pasta. I found a piece of cooked spaghetti on the floor and we could only assume that she ate some. We still don’t know for a fact if she got her hands on the pasta but at the time it seemed likely and we weren’t taking any chances. We scooped her up, gave her as much Benadryl as she could handle and that was the last time we had anything with wheat in it at the dinner table.
Our house is now exclusively wheat-free and dairy-free simply because it has to be. It is just not worth the risk. For a while we were using two different spoons for two different pots, which was also nuts. The level of attention that was needed to not cross contaminate was tremendous, especially with a toddler running around a hot stove. We thought long and hard and contemplated these important questions. Is a bowl of wheat pasta really worth it? Is it worth taking the chance and accidentally cross contaminating her food? As a family we decided it was not worth it. I can happily say that since we made the change it has been so much easier on all of us and we have not had a single incident since.
As a result of removing wheat from our house, there is a sense peace now and I could not imagine it being any other way. Dinner is still chaotic and my son cannot sit still for more than a minute at a time, but I never have to worry about my daughter facing a life threatening illness as a result of something I am eating. Also, although she may not know it now, we feel that it shows a sense of solidarity. It shows that her illness is our illness and that we will carry this together.
Until we were thrown into this situation, I never could have imagined the major impact food allergies would have on all of our lives, even in the simplest situations. My daughter’s allergies have had such a strong influence on our ability to do basic things like go to restaurants, visit friends and even stay with family. It is very uncomfortable to try to explain to someone you care about that their house could be dangerous if not cleaned properly. I know my daughter all too well and if she finds a goldfish cracker in a toy bin or a pita chip under a sofa cushion, she is going to eat it. In no way shape or form do I want to have to bring my daughter to the ER after having injected her with an EpiPen, so for now we are overly cautious.
I don’t fault people for a second for not fully understanding the severity of her situation. I myself had no idea until I was in it. Also, a very small percentage of people (< 5%) have this type of reaction and it is not common knowledge. I see small children in the toddler section of the playground running around with a bagel in their hand all the time. I think if more people were aware of how dangerous that could be to someone’s child they would think twice about doing it. We cannot fault people for what they do not know and I think it is on the parents of children with allergies to help people understand the dangers of food allergies. I personally am taking responsibility and my first step was writing this post. I also wrote this for emotional support for people who have been thrown into this situation just like my family was. At times it can be scary, emotional, all consuming and at times extremely upsetting, but it is something that can be worked through as long as you are proactive.