The Diagnosis

 “Gluten allergies are all mental”.

I sat next to a VP of my company  who made this statement during a team meeting one afternoon.  It took every piece of my being not to jump on the conference table and start shouting, throwing my hands around and crying.  Just that week, my 14 month old son had been discharged after 5 days in the hospital.  His diagnosis: celiac disease.  Gluten allergies are mental…..just thinking about him saying that makes me want to scream right now. 

Let me step back for a minute.  Pierce, our 14 month old son, was such a healthy baby.  He, just like his brother before him, loved to eat, play and laugh.  That is, until February of 2015, right after he turned 1.  We started to notice his slow down in weight gain.  Then the vomiting started.  And the diarrhea.  And the crying.  Our first visit to the doctor was a diagnosis of the stomach bug.  Every kid had it, and Pierce was in daycare so it made sense….they pass everything to each other in that petri dish. 

Weeks went by and the “stomach bug” continued.  We were at the doctor almost every week, and almost every week we left with the statement of “just be patient” and “he’ll get over it soon”.  Well, the vomiting continued (and I mean projectile vomit…typically on someone in our home who was nicely dressed), he broke out in a full body rash one week….and still “just be patient”.   So after 7 weeks of this craziness, stress, tears and utter despair watching my son fall apart before my eyes, I did what they tell every mother NOT to do….I googled. Yep, I did it.  And then I, the WebMD doctor, diagnosed Pierce with cancer, HIV, meningitis, and pretty much every other disease known to man.  BUT, in the midst of all that crazy I saw a list of celiac disease symptoms and every single one matched my son.  Every. Single. One.  So, I listened to myself and pulled gluten from his diet.

What we didn’t know at the time was the damage that had already been done by gluten in his system.  At that point, it didn’t matter what we did….he couldn’t recover alone…he was in “celiac crisis”.  So, on the 1,000,000th trip to the doctor, after he lost a pound and a half in one week, blood tests were ordered.  We met with a GI doctor the next afternoon he showed us that the four markers for celiac were all positive.  He then turned to me and said “I’d like to get him admitted to the hospital”.  And I was so relieved.  I knew we couldn’t fix him. 

Pierce spent the next five days on IVs, monitors, and a feeding tube.  I thank God every day that he will never remember that experience.  I, however, will never be able to replace those images….watching the nurse stick Pierce for blood every day, the IV cast he had to wear which left his arm immobile, the nurse walking away with him prior to his scope procedure (and yes, I was “that mom”…who stood in the middle of the hallway crying).  Oddly, I’m thankful for those images now.  They are a constant mental reminder of where he was, and where he is going. 

 

 Prior to the sickness began, Pierce was a silly, happy, chunky guy!

His first day was hectic, and more than anything I hated that IV cast.

Pierce was so exhausted during his first few days as he recovered

The nurses brought this car by, and this was the first smile we saw

Eating his first bite of real food…I promise he was thrilled.

Pierce was so happy when the music therapist stopped by

 

I’ve been scouring the internet for support sites, recipes, and every single thing I have found is wonderful.  Moms packing artful gluten free lunches in bento boxes, baking their own breads after soaking cashews overnight to make flour, and never missing a beat.  But…I’m not that girl.  I might bake my own bread, but it will probably suck.  And I’ll pack lunches every day for my sweet boy, but they probably won’t contain fruit skewers with grapes cut to look like hearts.  I’ll   more than likely be the mom that happily sneaks to Joe Bologna’s in Lexington, KY when my little one is not around and devour a super gluten filled breadstick (this may or may not have already occurred:) ).  But this is our journey.  One I hope will help another mom or dad put in this same situation. 

 

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