Sunday, February 10, 2013

Food Allergy: Denial to Paranoia and Everything In Between

Raw.  That's the best emotion to describe the events of this past week.  I'm generally the type of person to sort stuff out in my head first, rationalize, come up with a plan, seize control, and move on.  Needless to say, with the events of the past week, I'm still in the "sorting stuff out in my head" phase.  The following post is either catharsis or some kind of message haphazardly stuffed into a bottle and tossed out to a virtual sea with a "hope for the best."  Maybe someone out there has been here before, shares the same emotions, or can relate in some way, shape, or form.  Sometimes this food allergy journey can feel so lonely.

It was one year ago that our family welcomed Luke to the family. Birthdays always bring a sense of nostalgia.  It seems like yesterday, we were celebrating JR's first birthday, and he is soon to be 5!  Pouring over old family movies the past few days, it's been so much fun to see the milestones reached by the two boys right around the same time.  To note that a 10 month old Luke pulls the same books off our shelves just as his brother JR did 4 years prior brings a smile to my face.  So much joy, yet there, off in the distance are dark clouds looming on the horizon.  As a kid growing up in the midwest, I clearly remember the feel of the charged air before a storm, wondering if mother nature would unleash her fury overhead or if the storm would sail benignly around in the distance. The food allergy storm has been brewing in the distance with its palpable electricity as we have been watching and waiting to see where the food allergy storm will go for Luke.  If your first child experiences life-threatening food allergies, it's difficult not to imagine that a storm is lurking on the horizon for your second child, whether real or just a figment of your imagination.  Paranoia.

JR's first birthday - Spring 2009
Luke's first birthday - Winter 2013.  Look!  They even have the same hat on!

The first time around, we were in food allergy denial.  When JR's daycare kept saying there were issues with peas, vomiting, a rash, etc., we passed it off as him not liking the texture of peas and mild acidity causing redness on his sensitive skin.  So many rashy bottoms.  So many random, red splotchy faces.  We chalked it up to normal diaper rash and sensitive skin - not uncommon in babies, right?  In our movie-viewing nostalgia, for all of JR's happy milestones (which there are many!), we couldn't help but notice in some of those movies, the reminders of an allergy storm brewing – lots of random red, blotchy skin.  Looking back with hindsight in some kind of Mommy self-inflicted wound of regret, food allergies seem painfully obvious.  Perhaps deep down we had a sense that all was not quite right, yet at the time, both myself and my husband did not think food allergies could strike our child.  We were doing everything right (breastfeeding, organic foods, vitamins, etc, etc)... right?  Denial.

Our first bout of food allergy paranoia with Luke commenced less than a month into his life's journey.  Bright red bloody diarrhea, inconsolable nighttime screaming - all of this frightening, sleep-deprived symptomology led to a diagnosis of a cow milk protein intolerance.  No, we were not feeding Luke cow’s milk, but rather the dairy that I was eating, was getting into my breast milk, and wreaking havoc on our little guy's gut.  After cutting out dairy from my diet, Luke's symptoms gradually disappeared and our inconsolable child slept in delightful six hour stretches and became quite the chipper, jovial infant.  We asked many questions, and given that this type of "allergy" is mechanistically different than JR's food allergies (cell-mediated vs. IgE-antibody-mediated), we were told that this had no bearing on whether Luke would develop true, IgE antibody-mediated food allergies like JR.  In fact, most young infants with a cow milk protein allergy like Luke will resolve around the first year (review article on allergic proctocolitis in breastfeeding infants).  Whew.  Crisis averted.  Paranoia at bay.

Fast forward several months - time to introduce solid foods.  With JR, I distinctly remember the joy and excitement of introducing solid foods. It was a whole new world!  With Luke, solid foods were introduced with trepidation.  As the months ticked by and new foods were added, we noticed nothing but a baby ready and willing to eat any morsel of food shoveled into his mouth.  Not fast enough?  Luke wailed for more.  By 10 months, JR had already had a lot of random red, blotchy skin and issues with peas.  At 10 months, Luke had no problem and clear skin to boot.  Paranoia easing even further into the distance. 

Then about a week ago, things changed.  I do not know if it is possible, but it's like the atopic switch turned on.  Blotchy skin.  Random hives.  Rashy bottom.  No, No, NO!  How can this be?!  Just a fluke, right?  That raised bump on Luke's face and wrists, those are not hives.  Two days later, same thing.  Then back to back for the next two days.  Panic.  Write EVERYTHING down.  All ingredients, anything he could have come into contact with, anything.  Again, today, random hives, and not even associated with eating food.  What is possibly on our floor in the kitchen?  Did our dog bring something in (the darn squirrels are leaving peanut shells all over the back yard again)?  Maybe it's milk or wheat (which JR is not allergic to)?  There must be flour residue all over our kitchen from all the cooking and baking I do.  Panic.

I am a rationale analytical person by nature, but when it's my child and I've been fighting for a year to keep the food allergy paranoia at bay, emotion takes over and reason flies out the window.  This week we will see the allergist armed with as much information as we can possibly write down about foods consumed and when, symptoms, or lack thereof.  Calm reason is returning.  A plan is being formulated and with the help of our allergist, we will do what needs to be done.  Yet, my heart is absolutely smashed and bleeding on the floor right now.

I thought I did everything right this time around, or did I?  Religious fish oil and vitamin D offerings to the anti-atopic gods during pregnancy and postpartum - check.  Mostly organic foods and grass-fed cows sacrificed at the oral alter- check.  Much more zen and a lot less stress than with JR - check.  Avoided foods containing GMOs, just in case the anti-atopic gods don’t like adulterated food - check.  Absolutely no formula, ever, and exclusive breastfeeding - check.  Or wait, didn't I see a study suggesting breastfeeding may have a slightly higher rate of children who develop food allergies?  Or maybe I should have been eating nuts/peanuts all along instead of avoiding them?  What do the studies say?  Eat the possible allergens or not?  Damn it, they go either way (free peer-reviewed review article summarizing the topic).  What the hell, science?!  You're letting me down!  The thing is, I know in my head from reading a ton of scientific papers over the last couple of years that we really do not have a handle on what is causing this food allergy epidemic, and most of the studies mentioned above only show some kind of weak association, not causation.  We do not know how individuals develop food allergies.  We do not know the best advice and practices to give families to prevent allergies in their children.

Yet, because I've done scientific studies myself, I know that science is a process that works.  It self corrects in the face of new evidence.  Yet, what do we do when our understanding of food allergy and the complexities of the immune system barely scratches the surface?  Science, you are a beautiful process, but I need answers now!   I don't have time to wait. It feels like the atopic freight train is in motion, barreling through wide-open country and I am powerless to do anything to stop it. 

We will see what this week brings.  I hope it’s all a fluke and that I am wrong.  I hope Luke’s allergies are not real, that they are imagined, and I am over-reacting.  Denial – no.  Paranoia – I hope.  Broken – yes.

This is our anecdotal experience with food allergies.  Please do not interpret our anecdotal experience as evidence for/or against the prevention of food allergies.  Current medical advice by the American Academy of Pediatrics on prenatal/postnatal nutrition and the introduction of solid foods reflects extensive reviews of population-based studies by medical/scientific experts.  Unfortunately, we still do not know underlying causes or best practices to prevent food allergies.  My actions (fish oil, vitamin D, etc.) are based on some evidence in population-based studies to suggest benefits where I personally feel there may be benefits with unlikely negative consequences.  Conversely, my other actions such as eating organic foods and avoiding GMOs reflect no perceived benefit nutritionally per se, but rather a potential for negative consequences from increased pesticide of conventionally grown foods and a lack of independent long-term health studies on GMO foods.


  1. yep, been there! It is very difficult to manage and figure out. It is a good thing you are a scientist! My kids have very different allergies and I have since developed a wheat allergy. All opposite allergies! My younger son was the most difficult to figure out--some standard allergies I figured out earlier on, then took a year of meticulous food journal to figure out the last two, canola and pesticides used on fruits, veggies and spices. No allergy tests for these! Before I figured out the last two, he developed a kidney disorder that is triggered by a reaction in the immune system, typically from reacting to colds. But as soon as I took out those last two allergies (immune system was reacting to allergies), his kidney disorder has never come back (3 years now) Good Luck!

    1. Wow - you guys have had quite the experience. I'm so glad everyone is healthy now! Even with having a science background, figuring out allergies is just plain challenging sometimes, especially when dealing with multiple food allergies that are outside the "norm." It has been my fear that the boys will have non-overlapping allergies, but I'm trying not to get too far ahead of myself. Thanks again for your encouraging words. I really appreciate it!

  2. ((HUGS)) You are definitely not alone. I only have one child, but I still go through the same paranoia, denial, etc., when suspecting that a new allergy might be added to my daughter's long list. I, too, used to feel like a reasonable, logical person, able to put things into perspective, but now I feel like that analytical mind is betraying me, by divining every possible risk factor, identifying and cataloging every source of danger, cycling the many articles I've read through my mind's chatter feed in frequent rotation...

    I hope it's a fluke, but if not, hopefully you can take comfort in the fact that you know how to do this, you know how to manage this situation. You won't have to start your way up the learning curve from scratch.

    Also, don't feel bad that your precautions might not have worked out. I really don't think there is much anyone can really do...As you said, nobody has identified the absolutely cause(s). You did your best, but sometimes genetic markers and predispositions overrule our best efforts.

    1. Selena - thanks so much for your sweet response :). I think what makes this journey so challenging for us logical/rationale types is that the rules seem to change on us - food allergies are just plain old unpredictable beasts! As much as I remind myself that all of this is outside of my control, my heart keeps trying to tell me differently - ugh. Can you say a serious case of mother guilt? I really hate issues of the head vs. the heart!

  3. I can relate to this entire post so directly! My daughter (4 now) is allergic to peanuts and tree nuts and my 2 year old son has no know food allergies right now.

    We have had a couple episodes that have induced the food allergy mommy panic with him. Random hives on a completely random occasion that I still can't figure out. And, a skin reaction very clearly related to antibiotics he had been on for an ear infection.

    Since nuts are not in our house I don't yet know if he is allergic. The reaction to the amoxil got us a referral to an allergist (not the same as my daughter's) who is going to be bombarded by far more than the basic new allergy questions!

    My internal dialogue goes back and forth from reassuring myself that I know how to handle this now and we aren't starting from scratch if he is food allergic to the thought that I don't have the stamina to worry about two food allergic kids out there in the world eating at school etc.

    I could go on and on about how alike our thinking is but my kids want to eat - of course!

    1. Thanks for sharing, Stephanie! Random hives are the worst for inducing fear/anxiety. Good luck with the next allergist appointment. I hope you will soon have answers :)