Knowledge about food allergies and its dangers is lacking, according to a new study by Children’s Memorial Hospital in Chicago. Based on a survey, 65 percent of respondents answered knowledge based questions accurately. In addition, 46 percent thought there is a cure for food allergies. Dr. Rachel Story, attending physician, Allergy & Immunology at Children’s Memorial Hospital spoke at the Illinois MOCHA (Mothers of Children Having Allergies) meeting and shared the recent findings with attendees. She shared some fascinating information about new research methods, and the results look promising in the long term. But for now, I am still astounded by the lack of awareness about the real dangers of food allergy by the public.
Another key point Dr. Story discussed was that 2/3 of respondents thought that daily medication taken by the food allergic individual prevented life threatening reactions. In addition, 2/3 of parents surveyed thought it would be unfair for their non food allergic child to bring a peanut butter sandwich or other peanut product to school. Of course, like many of you, I have heard this “unfair” situation firsthand, along with that other taboo subject; celebrating birthday parties at school with food.
These findings indicate what we, as parents of food allergic children have known all along. The public reaction to food allergies is largely due to a general lack of awareness and understanding of how life threatening food allergic reactions can be. I’ve heard from parents who are are unfamiliar with food allergies compare my son’s dairy allergy to a lactose intolerance, and asked if I could just have John take something like Lactaid. I’ve heard from parents who think people can only suffer anaphylactic reaction from peanuts. I’ve also heard from parents asking if John could have cheese pizza, even thought they knew he had a milk allergy (apparently thinking he was only allergic to milk, and not all dairy products). Finally, I’ve heard from parents who still had the look of shock and awe in their faces when I told them it would only take minutes for my son to die if he didn’t have the right rescue medication on him at all times. Even then, a food allergic person can continue to suffer anaphylactic shock after being given a dose of epinephrine (hence the reason to always carry two on you at all times, and immediately call 911 after administering medication).
You’ve all heard it too, I am sure. This is why we need to step up our efforts and raise awareness in our own communities wherever, and whenever possible. Attend a local FAAN walk with your family and friends, donate money to the various food allergy organizations listed on my homepage, have frequent dialogues with your school’s principal and nurse about policies and procedures, use play dates and parties as a opportunity to educate about food allergy issues and write letters to your local papers, magazine and news shows asking them to do more stories on food allergies. As a former producer, I can tell you first hand, the people in the news business DO listen to their readers and viewers, and are always looking for interesting story ideas.
Finally, if you live in the Chicago area and want to participate in the groundbreaking food allergy study at Children’s Memorial Hospital, please contact me for more information or go to the MOCHA website. The study still needs a few hundred case families, and the time commitment is only two hours, once a year. It’s a small chunk of time but could prove enormously helpful in finding a cure for food allergies. Also, tickets are now available for the very cool FAI Chicago benefit, to be held October 24th at the River East Art Center in Chicago. This will be THE food allergy event to attend as it attracts the Who’s Who of Chicago donors. FAI Chicago will also hail the accomplishments of Chef Charlie Trotter for dedicating excellence in health and well being of his restaurant’s patrons. If you wish to receive an invite, please email me. If you live out of state, please consider donating the cost of a $300 ticket.
We CAN make a difference, and I believe we will.
The public definitely doesn’t understand food allergies. I read a similar study and wasn’t surprised, unfortunately! Do you know if the studies at Children’s involve ingestion of allergenic foods–we’re off limits for that type of study due to the severity of my daughter’s nut allergy.
I do think people’s perceptions are changing, though very slowly. I just picked up the latest issue of Chicago Parent magazine, for example, and they had 2 big food allergy stories this month. One was about allergy-free foods and another was from one of their regular columnists. She offered tips for enjoying Halloween with food allergies. I don’t remember the last time I saw a parenting magazine devote that much time to food allergies so I was thrilled.
Thanks for the interesting post!
I think I read here that one of your readers is a dietitian and she didn’t know that much about allergies until her child was diagnosed. If the health care industry isn’t that informed how much can we expect from some of the moms/dads/caregivers that are just doing the best they can? (I sort of mean this in jest, but sadly it’s more true than not, I realize).
As to the cheese on pizza thing, it made me chuckle because once (ok way more than once) I said we didn’t eat wheat and the waiter told me it would be ok since they use regular flour, not wheat flour. Last I checked, regular ‘all purpose flour’ is made with wheat, just not whole wheat.
That reminds me of a funny story I read on Dooce once, where they ordered steak tacos somewhere and the cashier said they didn’t have steak. They only had chicken, beef and shrimp! LMAO, no steak.
Some people just don’t get it and sadly never will. Thank goodness for pioneers like yourself, making a difference 1 person at a time.
Jenny, we’re in the same boat as you with the peanut allergy. This study uses parent questionnaire, skin test and blood draw. And the team will share the findings with your allergist so you won’t have to do additional testing at your annual visit. You also get reimbursed for gas, as well as other goodies (we got a Target gift card). I have taken all four of my kids the past two years, and the process was smooth and not time consuming. This is such an important study and I highly encourage you to look into it!
Colette, I totally chuckled reading your wheat comment. I couldn’t agree with you more too about the health care industry not even being as educated as they should be. I wrote a few posts about this when my pediatrician gave the wrong advice when John had his first allergic reaction. Thanks for the comments!
I’ve been blown away by how little non-FA people know about what they are eating. It’s astonishing that number of conversations I’ve had needing to explain why she can’t have butter or cheese or cream.
me: “‘It’s made from milk, so she’s allergic to butter as well.”
“Wow. I never would have connected that. Who would have thought that being allergic to milk would mean that she couldn’t have butter. Interesting.” ???????????????? And we get the lactose intolerance thing a lot, as well as a disbelief that anyone could be allergic to sesame or mustard.
On a unrelated but much happier note, I’ve raved over your recipes many times, but just wanted to thank you again. Some people (especially older family members) seem to pity my daughter & go on about how rough it is for her & how deprived she has that she can’t have “anything good” to eat. They raise skeptical eyebrows at my claims that we eat very delicious food, and that with a little effort a dairy & egg free cookie can be as good as a “regular” cookie. It is so nice to have a party and make things like cake, zucchini bread, cookies, etc. from your site & have them in disbelief that something that good could have been made safe for my daughter. Thank you! Although it is pretty crappy that she has so many severe allergies, I don’t like the pitying or comments about “weird food.” Your fabulous recipes help change their non so open minds.
Yes, yes, yes. I have heard the suggestions about giving my dairy allergic daughter lactaid. People don’t understand how someone could possibly be allergic to beef. And they always ask “What does she eat?!”
I’m not surprised by the lack of awareness from non allergic people. You have to live with it to really ‘get it’. I am constantly amazed by how much knowledge levels vary from family to family of food allergic kids! Even among medical professionals the knowledge levels are SO varied. Sometimes it makes me feel like allergies are part vodoo science. LOL.
It also makes me realize that if we can not communicate clearly among allergy sufferers in the community, it is not a surprise that so many non allergy people are skeptics.
We have a long way to go. And we’re going to have to work together to do it.
Hi Kelly,
I cannot agree more on the cheese pizza! My son is allergic to eggs and people are always trying to give him things baked with eggs. Just yesterday, my one friend is having a 1st birthday party and when I reminded her of his egg/sesame/peanut allergy, she said, “OH…he still has that? Isn’t that over YET?” I wanted to reach through the phone and say, “Get a clue!” UGH!!!!!!!! I am a part time teacher at an after school program and my first question to my students is “Who is allergic to what…” because it is essential to know health problems/allergies.
Thank you Kelly for making me feel like I am SANE and a normal mom. Sometimes it is very lonely and frustrating to have a child with food allergies.
Are you all going to the FAAN walk this weekend in Chicago? I hope so! September 26 on Cannon Drive! Hope to see you there!!
Kelly, I would absolutely be interested in having my daughter participate in the food allergy study and help out CMH. Can you forward or post the information? Thanks for the great website!
Great post, Kelly. It really amazes me how little people seem to *think* about food allergies when I am thinking about them pretty much all the time! Like EVERY one else here, I’ve had many conversations that go, “No, he can’t eat that either because it contains .” And typically it’s totally obvious — no, he can’t eat ice cream because it’s made from MILK! No, he can’t have French toast because it’s dipped in EGG!
Katie, I’ve got a child with a mustard allergy, too! I’ve yet to meet another!
I was one of those people not too long ago, that did not know much about food allergies or how serious they could be. Everything has changed since my child has been diagnosed with allergies to milk, eggs, peanuts and wheat. Unfortantately, you don’t know what it is like until you are in the sitauation yourself or someone close to you is. Educating others is so important. It is a journey and all I can do right now is embrace it!
We have this problem it is like people think I am crazy and making it all up. Why would anyone want their child to have to carry and Epi-pen and be allergic to anything? Do you have any suggestions to educate people? Especially like my grandparents who can’t figure out why just a little would not hurt. My son David (allergic to dairy and eggs) loves to spend time with them but I have this feeling one day they will just forget and that will be the day he has to use the Epi-pen.
I love this site and its ideas for halloween… http://allergyfreehalloween.org/
*sigh*
I’m just gonna say what I immediately thought when I read this: People are stupid!
I hope you all get to have better experiences with more educated people. “Oh, I thought if it wasn’t just pure milk, that any other dairy would be ok.” “Well, it’s only soaked in egg, so it’s not the same right?”
You all are totally justified in being angry. People are just stupid sometimes.
Much love!
Sandra
Thanks so much for the sweet comments about the recipes Katie! I am so happy your family has enjoyed them! Lynn, go the MOCHA link on my site for and go to the part that gives more information about the Children’s Memorial Hospital Chicago study. THANK YOU so much…by participating in this study…you making a huge difference in all our lives!!
Krista, thanks for the Hallowween link…I’m going to check it out. Halloween is right around the corner, and not an easy holiday for many of us…
Deanna, my plan is to go but I have the flu and being preggo is making it a lot harder. So I will have to play it by ear. If I go, I will be there with my two little guys, as Chloe and John have soccer games. Always juggling their schedules it seems!
Thanks so much to the rest of you for your very funny, and very heartfelt comments. It’s what I love most about this blog…sharing experiences is so important because as one of you pointed out, it can be isolating at times. Thank YOU all….
Kelly~
I am in Springfield, IL, what is the allergy study about? (At Children’s Memorial Hospital) My son is Highly allergic to peanuts. What would he have to do?
Nicole
Thanks for the MOCHA info, I just called and we’re scheduled for Saturday participation in March. After skin testing 2 weeks ago…I’ll need that long to get every pumped up to do it again! Maybe we can do a little American Girl bribery as well!
that is awesome!! thanks so much giving your time to this important study…and i promise you, they are fast, fabulous and work well will all ages of children. besides…who can beat a target gift card!!
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