Food allergies and allergy testing have recently received a lot of media attention. First there were the articles prematurely citing a peanut allergy cure, referencing recent and ongoing peanut allergy studies. Now several articles have stated that common allergy tests could yield false positive results. This statement has led many to question the prevalence of food allergies–life threatening food allergies in particular.
The allergy community has responded in a frenzy, worried that this negative media spin will undo what many have worked on for years; to educate and inform. I sincerely share that concern. However, as a community, we can not expect others to be willing to learn or listen if we inform with dated information. As a mother of a child with multiple life threatening food allergies AND and a food allergy advocate and writer, I’ll admit–I’m conflicted.
It’s no secret, within the allergy community, that food allergy testing is not 100% accurate and can result in a high rate of false positives. Why are allergists still using these tests on patients who suspect a food allergy but have no proven history of reaction? Why are everyday unknowing parents not informed of this fact?
According the the Center for Disease Control and Prevention, three million children are affected by food allergy. In 1997, 1 in 29 kids were diagnosed with food allergy. Today the number is about 1 in 26. The CDC also reported an 18% increase in food allergy in children from 1997-2007 and a 3.5-fold increase in hospital admissions related to food allergy among children between the period from 1998-2000 to 2004-2006.
Every study has a valid argument on either side. Is this reported food allergy rise due to increased awareness and/or increased testing? Or is there an actual real rise in the number of true allergic individuals? No one can say for certain. Due to the reported increase in food allergy hospital admissions, it is safe to at least assume that severe food allergy reactions do exist. Shouldn’t that be enough? Why does a certain number of our population need to be affected before we decide something is wrong and that we as a society need to do something about it?
The real issue, in my opinion, is that positive allergy testing (without a reaction or history of a reaction to the food being tested) does not always mean an individual is allergic, and in fact can mean that the individual receives a false positive diagnosis.
The kicker of it all is if an individual is “predisposed” to allergies to begin with. Suddenly avoiding a food (long term) that you are NOT allergic to can potentially cause an allergy. This also potentially holds true for siblings and parents, in the home of a food allergic individual, who avoid the allergen due to the allergic family member. We are seeing more and more individuals, who have eaten foods reaction free in the past, suddenly develop food allergies as adults.
This is where I feel that I walk a fine line between being the mother of a food allergic child and a food allergy advocate and writer. My son certainly has life threatening food allergies per his reaction history. For any parent who has witnessed this, you know the fear and anxiety those reactions cause. However, my son is also one of those children with several positive skin prick and blood test results (without a clear history of reaction) to foods we avoid because we were told to do so by an allergist. This was based on testing results alone and an inability to pinpoint the exact foods that caused prior reactions.
Soy and sesame are two of these allergens and are often quite difficult allergies to manage. Soy is in everything and sesame is not a top 8 labeled allergen in the US. In recent years (and starting by accident) my son has consumed soy sauce and soy flour in breads without reaction, while still testing positive to soy on blood and skin tests. We continue to avoid sesame. This means that my son is potentially NOT allergic to soy. (We will be seeking a food challenge shortly.) However, we are still not sure about sesame and due to my sons “predisposition” to allergies; avoiding sesame all these years could have now caused a sesame allergy. What is even more interesting is that when my son was diagnosed with soy (around 2004-2005, age 1.5-2) the allergist told us that it could be because soy is a legume (as is peanut) and that my son tested positive to peanut. He said that my son might not be allergic to soy but that we should still avoid it. If I knew then what I know now, I would have asked for a food challenge. Unfortunately my story is quite common among many families and many allergens.
I’m torn between my sincere drive to push for more food allergy awareness, education and funding; and my drive to push the keepers of these important facts to share them more publicly and put more effort into more accurate diagnostic procedures. In fact, it is my opinion that more accurate diagnostic procedures should come before a cure.
Many individuals currently believe that there is a cure, or near cure, for peanut allergy due to the recent studies and media attention. What most people do not realize is that this “treatment” will likely not be widely available in the US for another 5-10 years at least, that it more than likely will only work for a certain population of peanut allergic individuals and that it might not be a cure at all. Individuals who are able to undergo this treatment, without severe reactions, may need to eat a daily dose of peanut for the rest of their lives to keep up their tolerance level and prevent reactions.
What kind of life would that be to avoid peanuts for years and then have to take a daily dose for the rest of your life? Many would argue the piece of mind that comes with not having to worry about a severe reaction from accidental exposure to peanuts. Having a child with a peanut allergy I sincerely get that. But what if many of us are fearful of these severe reactions unnecessarily due to poor diagnostic/testing procedure/protocols?
As advocates and writers, many of us know about these issues. The every day parents of a food allergic child or the newly diagnosed do not. Avoiding a common food is difficult and fearing a life threatening reaction is in short “life changing”.
I recently learned of a new food allergy test that is widely available in Europe called Component Resolved Diagnostic Test (CRD). It is not currently FDA approved or widely available in the United States. This new blood test goes deeper into allergens isolating specific proteins. For example, the peanut is comprised of multiple proteins. CRD can find which proteins an individual is allergic too. Ara h1, h2 and h3 are peanut proteins most correlated to severe allergic reactions. However, there are other peanut proteins that will give a positive peanut allergy result on standard tests that in fact cause only mild reactions. Some peanut allergic individuals (without a history of severe reactions) may be living in fear unnecessarily.
I asked several allergists about this new test and many admitted to not knowing too much about it. One stated that there is so much new information available that it is difficult to keep up with it all. I personally completely respect and understand that. Having waited in an allergists office multiple times over the years, I can see how busy they are. However, too often we put others on pedestals. We put all of our faith and trust into medical professionals or others that we think know more than us. While many doctors will cringe when a patient states “I read about this on the internet”, we need to remember that we are our own and our child’s best advocates.
The lesson going forward is this:
The allergy world is changing. Educate yourself. Discuss what you know and advocate with your allergist. Consider allergy testing only for foods you know you or your child has reacted to. If you can’t determine the one food due to a reaction to a meal–consider asking your allergist for a food challenge to the foods that come up positive on allergy tests that you’ve eaten reaction free before.
Never, EVER try a food challenge or try to desensitize yourself or your child without proper medical supervision.
To the non food allergic:
Food allergies and life threatening food allergies ARE real. The statistics might be unclear as to how much of our population is affected, but regardless–food allergies are a real concern. They are a concern because they affect everyone in society; from those who are allergic to those who are not. We all need to live on this earth together. More importantly, we do not know the cause of food allergies. They might later affect you, your spouse, your child or your grandchild. Try to have compassion and understanding for those who are affected, even if their requests or behaviors seem irrational or unreasonable. Remember that they are struggling with balancing what they hope will be a normal life, for themselves or their children, with the fear of the unknown and relying on information from allergists and the medical world–that is changing daily.
To my fellow allergy writers and advocates:
Keep doing what you are doing. Keep writing and keep advocating. And in the best interests of our children and our entire community; please consider publicly sharing “all” food allergy information and facts. Whether it be on a product, company, nonprofit, website or study; our readers (and the non food allergic) have the right to know and make decisions for themselves.
Don’t misuse your power as a writer. Don’t get bogged down by what is “politically correct” for or within our community. Don’t praise a company, product or website for the sake of positive networking, favors or monetary reasons. Don’t unnecessarily slant stories/studies in our favor. We all cringe when the media or other writers misuse studies and statistics. Doing so on our end will never help our cause and will only hurt our mission with the general public going forward.
Do form your own opinions. Do be truthful with yourself, your readers and our community–even at the risk of a negative reaction. I personally believe that is the sign of a true advocate. There are so many of you out there! I (and my son) sincerely thank you for your time, energy and efforts. You are the ones who have the power to cause change. We have made great strides in our community and together we will continue to do so.