Going Gluten-FreeJuly 12, 2011

Ten Things: What Every Kid with Food Allergies Wishes You Knew

My son Joseph looked up from "Ten Things" (Living Without, Aug/Sept issue), an essay by allergymoms.com founder and life coach Gina Clowes, with tears in his eyes. He took a deep breath and told me, "I feel like I'm the only one sometimes." That item from Clowe's list resonated with him. He noted that none of his closest friends or members of our immediate family have food allergies, and sometimes that makes him feel left out.

We always point out when anyone successful or famous has food allergies, Joseph reads books that feature characters or real people with food allergies and he loves listening to Kyle Dine's music about food allergies. Our local support group, NC FACES, is also a wonderful way for Joseph to spend time with other kids who must avoid allergens. But it's true. That isn't the same as having a really close buddy dealing with the same issues and emotions that come with food allergies.

One of those feelings is sadness. Joseph nodded right along, agreeing with another item on Clowes' list--feeling sad and left out at birthday celebrations while everyone else is digging into the birthday cake. He knows staying alive is more important than trying even a tiny bite of cake, and he truly enjoys helping to make and decorate the cake or cupcake he brings to special occasions. But that doesn't erase the feelings of isolation that crop up.

Another common emotion that Clowes addresses is fear—both the child's and the parents' fears about dying from an allergic reaction. Joseph's tears started flowing again when he talked about how scared he gets when he thinks about having a life-threatening reaction. He doesn't remember much about his anaphylactic response to a sip of milk when he was 2½. But I certainly remember my own fear as I watched my little boy go from moving his tongue funny, to crying, vomiting and struggling for air within a couple minutes. I will never forget jabbing the EpiPen into his thigh and rushing to the hospital, where he needed more epinephrine, oxygen, steroids and other medication during an overnight stay to combat the anaphylaxis.

These fears are valid. The reality is that food allergies have tragically ended too many lives.

I think it's important for Joseph to talk about his fears--but we also don't dwell on them. We focus on what he can enjoy and do everything we can to keep him safe. It's those efforts to help him avoid peanuts, tree nuts, wheat, milk, egg and soy that sometimes bring misunderstandings, insensitive comments, judgmental stares and isolation from others.

Joseph and I wipe our tears and have a good hug. My hope is that Clowes' essay and her ebook will help people understand how food-allergic children feel and what steps are necessary to maintain their safety. The more people who understand, the fewer tears children like my son will have to shed.

“Ten Things” (Living Without August/September 2011) was excerpted with permission from Ten Things Children with Food Allergies Want You to Know, an ebook by Gina Clowes, available at allergymoms.com. Wendy Mondello also blogs at tasteofallergyfreeliving.blogspot.com.

Comments (3)

As a mother with two children with multiple food allergies (milk, soy, eggs, nuts, shell fish, and other allergies, including wheat for my son), I want to say that I understand the frustration of trying to find food that children can enjoy and not feel left out. Our daughter also carries an epi-pen but thankfully she has not needed to use it. Let your son know that as he gets older, he will find others who also have severe allergies and he will not feel so alone. He, like my kids, will be able to tell with one bite or just smell if there is something he is allergic to in the food. We have found that experimenting with recipes and substituting OK ingredients for ones they are allergic to has turn into new favorites (after some experimenting to get the right measurements) I highly recommend using Quinoa and oat flour in your recipes, and Ener-g egg replacer for baking cookies, cakes, pancakes works very well. So does using coconut milk instead of soy and regular milk. I wish you the best.

Posted by: Unknown | July 20, 2011 12:30 PM    Report this comment

Gluten-free cookies and coconut milk ice cream make great ice cream sandwiches. (or check Living Without's ice dream recipes and bagel recipes) Also check the internet for a gluten free candy list. Cecilia's Market Place has Matison & Matison's Gluten/Casein/Soy Free Grocery Shopping Guide with 4 pages of candy that might work. Good luck and what a lovely sense of humor! Your patience is as important as his!

Posted by: Elgie | July 14, 2011 1:57 PM    Report this comment

My son has done pretty well with his milk and egg allergy diagnosed at 9 months he doesn't know what he's missing. He is almost 8 and was just diagnosed w Celiac. This has been an adjustment! He misses his bread, bagels, Twizzlers, soy ice cream sandwiches. When trying a gluten free bread I started to say this would be good with...he interrupted and said WHEAT! I love his sense of humor and his patience to try new things!

Posted by: Unknown | July 14, 2011 9:28 AM    Report this comment

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