Cheryl Marks Young is a New Jersey food allergy awareness advocate and the creator and chief curator for The Allergy Ninja. Read more about her at the end of this article.
We all know that family with the “allergy kid.” You know, the ones that always bring their own food to parties and create a safe space between their kids and the party food. We are that family, and we have two food allergy kids with a combined total of over 30 severe food allergies and asthma.
In the overall scheme of living, most people have a fairly easy time of it. The average family can just pick up and go to a park or a ball game or a restaurant, or travel on a whim to anywhere, as long as they can afford the cost of the trip. For an allergy family though, the cost can be life threatening or deadly.
On the surface, we have a fairly normal life. Our kids go to public school, attend after school activities and we take family Taekwando class together. If you look a little closer, you will find that we hardly ever eat out in restaurants and we always carry a backpack with extra meals, snacks and fully stocked medical kits for each of our children. The medical kits contain what we hope is a lifeline in an emergency, and we have had to use them. In each medical kit is two EpiPens, Benadryl, asthma rescue inhaler, hand wipes and a copy of the allergy and asthma action plans.
The list of allergies includes everyday ingredients, such as wheat, dairy, eggs, sunflower, beef, lamb, sesame, peanuts, cashews, tree nuts, fish, shellfish, melon, maple syrup and soy.
Our family has figured out how to survive and thrive through all the ups and downs of daily living. Sure, as a parent I still have my heart in my hand every morning as I fear the call that periodically comes from the school nurse, but overall with teaching kids to advocate for themselves and creating safer ways to navigate the world, we have figured out how to help ourselves and others as well.
We have learned a lot along the way and every new day brings new opportunities to learn and grow and share our experience. I am grateful for those that understand our lives and those that try their best to be supportive in keeping our children safe. I also know how hard it is to fully comprehend what living with severe food allergies really means and that not everyone “gets” it even though they truly want to help.
I must admit, before I was the mom of food allergy kids, even I did not fully understand this way of life. It’s hard to know sometimes what it feels like, how to act and how to help. This article is for those kind souls who want to understand who we are, want to include us in their events, want to show us they love us, by creating safe foods and safe environments for our food allergy lifestyle.
While I could go on for hours about all of the information I want to share, here are my top 11 things I wish everyone knew about severe food allergies and some cool recipe ideas you might want to try for yourself:
1. We are not being hypochondriacs or dramatic; it only takes a tiny amount of an allergen to cause a serious or even deadly reaction. Just a little can hurt and cause deadly results. I once kissed by daughter’s cheek, not realizing that my lipstick contained dairy and her face immediately broke out in hives. My son kissed my cheek a few years ago when I didn’t realize my face powder contained sesame, and within minutes was vomiting because he was having an allergic reaction.
Product labels have gotten better over the years, but even the most experienced among us sometimes misses an allergen in the midst of all the scientific, natural and organic terms used to describe the different ingredients. Clearly, kissing my child’s cheek while wearing makeup or lipstick or even lip balm that contains sesame oil, nut oils, dairy or wheat can cause hives or even anaphylactic shock. Other examples that create an unsafe environment include but are not limited to the following:
- Silverware accidentally contaminated when food is passed around the table and crumbs fall. Our son had an anaphylactic incident while we were on vacation because we didn’t notice the cereal box passed over his head to another person, had leaked some tiny bits of cereal that had dropped onto his food.
- When my son was little, he loved to help clean up. We were grocery shopping and he noticed some boxes had fallen off the shelf and he proudly picked up the boxes and placed them neatly on the shelf. He came running over to me in delight that he had helped clean up and walked me back to where he had picked up the boxes. I panicked when I saw that his hands and shirt were covered in wheat flour from the boxes. Fortunately, we had our medical kit and I was able to wipe off his hands, remove his shirt, and give him Benadryl. We were very lucky that he only had a few hives and had not touched his face or put his hands in his mouth or we would certainly have had to use the EpiPen and run to the hospital.
- A recent example is when my son was signing school yearbooks for his friends on the last day of school. He had signed about a dozen books and absentmindedly touching his lips, as kids often do. Within minutes he was vomiting from an allergic reaction and I got that call I fear from the school nurse. When we walked through what had happened, it was clear that because so many kids had been handling the books during lunch, there was food particles on the books that contained my son’s allergens.
2. Please don’t be offended but I may always seem a little nervous and even over-protective of my children during playdates and events outside our home. We may often seem a bit pushy to have playdates at our house and invite you to our home for family and friend gatherings. We truly value you and understand it can in some ways deprive you of feeling that we are fully receiving your gift of hospitality and sharing your favorite recipes with us.
Sadly, I will always be on edge and not fully present in conversations unless all the food and other household products present are safe for my children. We have had to replace all of the food and products in our home with only those that will be safe for our children’s allergies, and even we make mistakes sometimes. Our children have had reactions in many places because of cross contamination on a plate passed over their heads at a table or a misleading ingredient label.
3. Please excuse me for doing a super-human leap across the kitchen and please don’t judge me poorly for digging through the garbage bin to double-check the ingredients label on a package, because the truth is labeling can be misleading. Many years ago, we had served our son what we thought was a safe treat and, in all honesty, he had been eating this brand of sausage for years without an issue. Then one day, he started to develop hives that were quickly spreading across his entire body. I literally flew across the kitchen and started rifling in the trash bin until I found the wrapper, only to discover we still had no clue what was causing the hives.
We brought the wrapper to the hospital with us and at that point figured out the new ingredient was melon and after further testing found he was anaphylactic allergic to melon and that we were very lucky that we had been able to retrieve the ingredients label and acted very quickly.
4. This one was surprising for us to discover, and it is important to note that hand sanitizer does not wipe away food proteins; it only wipes away germs. The only way to clean hands of food proteins is proper hand washing with allergy safe soap and water or allergy safe baby wipes.
Believe it or not, we discovered the hard way how important this concept can be in preventing anaphylactic reactions. Once we learned about the need to use proper handwashing and/or wipes to clean hands before and after eating, we began to track our son’s allergic reactions and in 8 out of 10 incidents he had not been allowed to use soap and water to wash his hands and had been given hand sanitizer at a party or at school.
In defense of the adults present at those times, they truly thought hand sanitizer was the same thing as using soap and water. Our kids are exposed to their allergens in almost everything they touch on a daily basis, so handwashing for them is critical in preventing reactions. Through sharing our experience and partnering with the teachers and other adults at these events, we have significantly reduced the number of anaphylactic incidents for ours and many other children over the last few years.
5. My children are not really “missing out” on the food others can eat. I understand that sometimes you want to spoil my children and we are a culture and society that often shows love through food. The truth is we don’t have any other option but to use the ingredients they can safely eat.
That said, we can help you make any recipe allergy safe with a little extra effort so you can shower them with that love through food safely. Please visit our blog at www.theallergyninja.com for recipe ideas for seven layer cake, ratatouille, homemade chocolates, king’s cakes, holiday dishes, recipe makeovers and more. If you are in need of an easy and fun summer dessert, click here for our recipe for Chocolate Pudding Fruit Tart on NJ Flavor.
6. Another important tip on understanding how sometimes labels can be a little misleading is that “gluten free” does not mean “wheat free,” and it may not be truly “gluten free” either. The Food and Drug Administration allows up to 20 parts per million (ppm) of wheat in a product and still allows it to be called gluten free. Our son reacts to wheat included in products if it is above 10 parts per million. You can sometimes find a label that reads “certified gluten free” and if it has a number with it that includes the parts per million or ppm count, that means they have tested that product and know it contains, on average, that amount of gluten or wheat in the ingredients.
Did you know that some powdered sugars and spices contain wheat starch or corn starch to keep the powdered sugar or spice from clumping in the container? We found this out the hard way when we used cinnamon that was labeled 100% cinnamon. We were visiting someone, and they gave my son the cinnamon for his toast. It was just sprinkled lightly on top of his safe toast that we had provided and within minutes he was vomiting all over the floor. A quick check on all the product labels revealed the 100% cinnamon actually included wheat starch in such a small quantity they were allowed to call the product “gluten free.”
When we called the manufacturer, they were within the 20 parts per million allowed by the FDA, but the level was enough to cause an anaphylactic reaction for our son.
7. Did you know that non-food items can be just as dangerous as food? School supplies like Play-Doh, nontoxic clay, paint and glues can contain wheat, eggs, dairy and fish. Dishwashing detergent, shampoos, toothpaste, soap and makeup can also contain wheat, eggs, dairy, nuts, sesame, sunflower, fish, soy and other allergen ingredients.
The Allergy Ninja skincare line was started because many years ago we realized our son had a split lip that was not healing. We tried all kinds of name-brand lip balms. His lip was so bad, the doctor told us he would need stitches. He said we should come back in three months after using a well-known brand and see if our son still needed the stitches. The doctor was afraid to put them in too soon, but we had a serious, deep split to worry about. Our daughter was also having dry skin issues and dry lips, but we did not make the right connection and kept using the well-known brand lip balms to no avail.
Another week went by and I started to do some research on hidden ingredients. I discovered, to my dismay, the product included almond oil, dairy and wheat that were not yet required to be on the label. I'd had enough, because all of those items were destroying my son’s lips and no wonder they couldn’t heal properly. He was anaphylactic allergic to all of those items. The well-known lip balm that was meant to heal his lips was eating away at them.
I decided the only way to make this work was if I made my own lip balm so that we would know what was in it. I did some research on safe oils and waxes that might work and made my very first chocolate, honey, peppermint, lavender soothing lip balm. We returned to the doctor three months later and the lip was 80% healed and he wanted to know what magic we used. He thought for sure we would not be able to heal the lip that far in only three months. I shared our recipe with him and others in our local community who were amazed at the results.
Then I started to look at all the other skincare products we were using and found that most of the ingredients were harmful for our children. Remember, this was before the label laws changed. I started to add more lip balms, skin creams and soaps to my homemade list of products. Slowly, as friends and family started receiving these as presents, they began asking for special creations and then the serum products were born. We started with coffee serum and coffee scrubs, and then pumpkin pie scrubs and lotions.
The list of creations has grown to over 16 recipes with many different variations. With a lot of careful research, you can find brand names that may be safe. I found that I love being a kitchen chemist and creating our own recipes, and the kids have fun helping and learning how different ingredients work together.
8. Please know that not all children will outgrow their allergies. With all of the different theories on why allergies seem to be on the rise and many different methods of “cures,” there is really no one size fits all solution, because each food allergy situation is unique. While some doctors prefer to approach food allergies from the scientific position and do lots of testing, others prefer to approach from the perspective of introducing small amounts of the allergens to desensitize the system. Still others believe in non-invasive procedures to focus on avoiding the allergens and improving the quality of life in that way. All of the options are valid and valuable depending on each person’s specific needs and each should be considered with caution and careful research and education.
9. Labeling can be misleading. We appreciate you being thoughtful to bring things for our children to eat. It’s not your fault that the labels do not clearly indicate all of the ingredients or use scientific names for ingredients that seem natural, organic and safe. No two products from the same brand are the same. One candy company I called told me while all their packages have their name and brand on them, only specific UPC codes are safe for our children’s allergies. The packages are not labeled that way. I had to call the manufacturer to obtain this information.
The reason is that some packaging is actually bulk packaged outside of their safe facility and could be cross contaminated. I encourage you to err on the side of caution and allow me to help you choose a product that will be safe to bring for my children to enjoy with you.
10. I love the look on my kids’ faces when they haven’t seen me for a few days or we have a visit from a relative or friend they haven’t seen in a while. You know that moment when they smile and run at you for that bear hug and kiss? That is usually when I enter the house after a business trip and just as they are leaping into my arms, I remember I had a snack on the plane and need to brush my teeth or change my clothes before I can truly hug and kiss them.
Now that my children are a little older, they will ask if I had something to eat that was unsafe for them and even say that I need to make sure I change my clothes before I can hug them. That is self-advocacy in the best way. As I mentioned earlier, when my daughter was really little, I kissed her cheek not realizing my lipstick contained dairy and she immediately broke out in hives. That is how quickly a reaction can happen.
11. While both are important to understand, food allergies are very different than food intolerances. One is deadly and the other makes you feel sick and can break down your immune system over time. It is important to know which one you are dealing with so you can help yourself and those you love in the best way.
If you’d like more food allergy safe tips and recipes for yourself or your friends, please visit our website at www.theallergyninja.com for information, recipes, pantry makeovers, shopping tips and assistance on surviving and thriving with food allergies.
If you would like to receive a free gift basket of five amazing recipes for you and your family, please send an email to firstname.lastname@example.org with “Gift Basket Please” in the subject line and we will send you the link to access the recipes which will include some of our allergy safe favorites:
- Chocolate Chip Cookies
- Anti-Aging Face Serum
- Foaming Hand Wash
- Lip Gloss
- Chocolate Cake
Cheryl Marks Young is a food allergy awareness advocate, business and life coach, management consultant & growth strategist, best-selling author of the award-winning book "Love Your Life: Cultivating Your Vision and Tending Your Dreams," entrepreneur, coffee lover and kitchen chemist.
With over 30 years of experience across many different industries in both the for-profit and not-for-profit sectors, she has a passion for creating solutions to help individuals, entrepreneurs, business owners and business teams survive and thrive in all aspects of their personal and professional journeys.
Cheryl is the Creator and Chief Curator for The Allergy Ninja and the Founder of Creative Blueprints for Leaders. Cheryl also partners with CFO Studios to run the Successful Women in Finance Dinner Series in both New York and New Jersey. Cheryl currently serves as a board member for the New Jersey Mental Health Institute, Declarations, Inc., Fairleigh Dickinson University Center for Excellence and Temple Emanu-El of Westfield. Contact Cheryl directly at email@example.com or 908-345-0382.