Glutened at the ER: A Cautionary Tale

Last Friday turned out to be a bit of a traumatic day in our household.  Youngest developed a killer headache mid-day and before the night was over, proceeded to throw-up twice and spike a 102.5F fever.  Our insurance's very helpful nurse help line advised us his symptoms warranted immediate medical attention and being as it was 8 p.m. on a Friday night this meant a trip to the ER.  This child takes us to the emergency room on a semi-regular basis, be it for swallowing coins as a toddler or for allowing his brother to smash his fingers with a 2x4 in some misguided experiment - all that to say, they have a file on him at our local hospital and are well aware of his gluten intolerance.  Even though his file says he has a gluten issue, I always make sure to over-emphasize this with the triage nurse when we're checking in and usually find I have to do a little educating on what this means for youngest.  After testing him for possible flu (negative) it was decided he might possibly be suffering from sinusitis, and we had some antibiotics, pain relievers and anti-nausea meds thrown at us.  This was our first mistake - personally, I am anti-antibiotic use unless they are truly warranted, but in our concern for our child we did not take a proactive enough stance and ask enough questions about whether he really needed them or not (we don't think he probably did).  Anyway, he was given antibiotics.  Here was our second mistake:  we assumed because his file clearly stated his gluten issues that any medications issued to us would be gluten-free.  Rookie-mistake, we really do know better. 

Over the weekend, youngest wasn't feeling his best and spent most of his time on the couch.  But by Monday he felt more like himself ... except for uncharacteristic tanturming, shrieking, crying and raging.  When the rages continued on Tuesday, we knew we were dealing with something other than just a sick kid (especially since he wasn't acting sick anymore) and started investigating possible causes.  The one variable consistent over the last several days was the antibiotic, so we looked at possible gluten-containing inactive ingredients.  Sure enough, pediatric azithromycin tablets contain pregelatinized starch, an additive that if not explicitly stated as being gluten-free is usually derived from gluten containing sources (see the list of ingredients here).  In addition to the gluten, these particular tablets are full of all kinds of lovely coloring agents such as red dye #40 lake, yellow dye #6 lake, and carmine (a reddish dye derived from insects using alum), dyes which may contribute to behavior issues in some children.  Upon further investigation, it's become scarily apparent to us how many prescription drugs are not gluten-free and additionally full of dyes, artificial sweeteners and long lists of chemical additives.

So the short of it is, we dropped the ball in monitoring youngest's gluten-free status and as a result, he reaped the consequences.  He's still working the gluten through his body, but we're hopeful that by the weekend he'll be back to his cheery self.  Poor kid.  This experience re-emphasized to us the need to advocate for yourself and your children in medical situations.  I don't blame the ER staff AT ALL for this - they have a lot going on at any one moment and to be that well versed in the various ingredients of any one medication is asking too much.  But as a consumer, it is my responsibility to ask questions and continue to ask until I'm satisfied with the answers. 

Next time, we would:

• question the need for any antibiotic or medication
• if medicine is required, ask if it's gluten-free
• ask again if it's gluten-free and ask to personally check the ingredient list before administering
• ask a third time if it's gluten-free and require someone to call the manufacturer to double-check before administering

The more we in the gluten-free community speak out and advocate for ourselves and our loved ones the more the word will get out to the medical and pharmaceutical communities that this issue needs addressing.