maintaining 16,000 milligrams. a day in the life of a ‘kind of gluten free’ guy.

 What a difference a year makes.  The surreal nature of our new reality still hasn't set in.  I still get anxious when I see him chow down on Sprinkle's cupcakes, homemade chocolate chip cookies or a piece of Italian bread to finish the wheat dose.  Each sneeze still brings me anxiety and I constantly look and listen for signs of a reaction.  There have been reactions.  

Last Saturday we had an experience which adds to the surreal nature of our new reality.  At a relatively new restaurant, Matthew ordered a burger and he specified a gluten free bun. Note: since reaching safety from cross contamination- we do not go thru the normal "allergy drill" anymore at restaurants.  Matthew ordered the burger with GF bun- no second guessing or following up with the manager, chef or owner- those days are over.

The beautiful burger arrived- Matthew tasted the bun and announced to the table, "this isn't a gluten free bun." Did I freak out?  No, I did not.  This little taste would have landed Matthew in the ER before participating in this study.  Since the bun incident, I have followed up with the restaurant owner and managers. The server was horrified- it was her mistake.  She pushed the wrong button, sending in the incorrect order into the kitchen.  Thankfully the server learned a lesson on Matthew and hopefully there will not be a next time. 

The following week while Matthew was at Chipotle with friends for dinner- I received the call.  "Mom? I'm at Chipotle with Jackson.  I ordered corn tortillas and they gave me flour by mistake- I didn't realize until I finished eating almost 1 1/2 flour tortillas, which I thought were corn.  I feel fine though."

Needless to say this call ruined my dinner and gave me a huge migraine.  Since Matthew already ate his entire wheat dose before dinner, at home with us- I was FREAKING OUT.

My husband was calm and so was Matthew. Since he was brought safely up to double his daily dose last spring at Stanford- he is now clearly safe from stupid cross contamination mistakes.  The fear ingrained in me will never go away. 

Later that evening we paid a visit to the same Chipotle- the manager apologized.  The woman taking the order "made a mistake." That all it takes- one person, one mistake- human error. The reality is that before entering into this study Matthew could not have/ would not have eaten at Chipotle with friends. I would not have been so relaxed while he ordered the burger at lunch.  Even at restaurants where a proper allergy protocol is in place, human error happens.

The same day as the bun incident Matthew's first article was published in the Huffington Post.  Oftentimes we hear about food allergy from the parent perspective- Matthew's article is from that of a child. 

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