What does safe mean to you, when it comes to food allergies? The word safe means different things to different people in the food allergy community. For some, safe means no peanut ingredients. For others, it may mean no dairy and made on a line where dairy is never present. Some consider a product safe if there is no voluntary "may contains" statement. For yet others, a food needs to be free of dairy ingredients and manufactured in a facility where no dairy is present at all.
Food allergies are tricky. People have varying degrees of sensitivity, different reactions and one reaction is not an accurate predictor of the severity of future reactions. In addition, people have different comfort levels. Some have never had an allergic reaction. Some have had multiple anaphylactic reactions. Some are traumatized by their experiences and others view past reactions as a fluke or minimize the seriousness of the allergy.
Whenever I see a comment in an online food allergy support or discussion group asking about a product or a brand "Is this safe?" I reply "That depends on what safe means to you." It's almost as though people don't feel comfortable being responsible on their own for managing food allergies. They are looking for someone else to help them make their decision. The reality is, it's up to you to determine what you are comfortable with and what you deem to be safe for the allergies you are managing. Some support groups try--repeatedly--to provide guidance to their members by asking them to indicate the allergies they manage and what their comfort level is when asking such questions--shared lines, dedicated facility, voluntary labeling. People ask "Is this safe?" and others respond with enthusiasm "Yes, DS eats them all the time." "Yes, I called and they're safe." "I've never called, but we have never had any probs." Maybe not everyone is relying on the free food safety advice they obtain in food allergy support groups, but chances are, some are relying on that advice.
As someone who has been managing food allergies for nearly a decade and has been observing and participating in the online food allergy community for almost as long, the apparent lack of independence and confidence in making food purchase decisions is really concerning. Why are these parents in the dark? I often ask parents "What did the allergist tell you to do?" More parents than you would expect, share that they received no specific directions from their allergist; just "avoid" the allergen, and they don't know precisely what that means. I remember when we first visited our allergist; he could not have been more clear. He told me not to feed my son anything containing peanuts or tree nuts, or anything made in a facility where peanuts or tree nuts are present. He said I have to contact every manufacturer, so that is what I do.
As we near the end of 2015, one theme I plan to visit several times in 2016 is the empowerment of parents of children with food allergies. There are so many comments and posts from parents online, expressing grief about their child's allergies and how their children are--in essence--victims. Parents write of how they become emotional and cry about their child's plight. Many express great frustration about those who do not understand food allergies. Some almost sound bitter and angry.
I hope allergists will provide more information and better support to parents when diagnosing children with food allergies. In general, it seems there is a dearth of support to the parents of newly diagnosed children with food allergies (as well as newly diagnosed adults!). I hope more parents of newly diagnosed children will be put in touch with local support groups and online resources. Instead of a never-ending stream of reminders of food allergy deaths and extreme cases, I hope we will see more food allergy education campaigns directed at the adults managing food allergies and reminding us that food allergies are manageable! We, as parents, have the power to manage food allergies. We can arm ourselves and our children with information and knowledge, to live as full a life as possible in spite of food allergies. I think Sloane Miller of Please Don't Pass the Nuts put it so well "Just because you have a restricted diet, doesn't mean you have a restricted life." If you feel like your life is being substantially limited by food allergies, you need to change how you're doing things! Seek help from others--allergists, food allergy support groups, therapists, psychologists--to find out how you can make food allergy safe changes to enjoy the good things in life free of your allergens-to-avoid.
Where Can Parents Start Looking for Food Allergy Information?
There are so many wonderful food allergy resources online, but my favorite for parents of children with food allergies is Kids with Food Allergies. They have so much wonderful information, access to top allergists, and a very supportive online community where parents can exchange tips and experiences. I would strongly recommend beginning your food allergy education there. If you would like some additional suggestions, please take a peek at the resources and blogs on the right side of this page or email me jennifer AT foodallergybuzz DOT com.
Best wishes for a Happy 2016!