Saturday, January 18, 2014

The Day Gluten Got Him

So...yesterday.  Craig called me when I was in the car on my way to get Carter.  He'd already gotten Jacob and they were at Wegmans picking up snacks and a movie.  As an afterthought, he said to me, "Hey, Jacob ate gluten today."  What the...?  We're still not sure what happened.  He ate pretzel goldfish.  That we know.  He says that someone at afterschool told him they were okay, but that person denied saying that.  The afterschool folks are well aware of his issue, though I'm not sure how fully they understand Celiac disease in general.  Still, I don't really think they'd tell him they're okay.  At the same time, Jacob has always been almost more conscientious than us.  What he lacks in literacy and general education, he makes up for in watching what he can.  For example, a couple times he's told me that he's thrown things out at lunch because the lunch lady opened it for him and her gloves touched things with gluten.  Whether or not that's really the case or whether it would have made a difference, I'm not sure.  But he's always looked out for stuff like that, and he usually knows better than to eat things that people offer him, so I'm confused. 

One theory I have is that he did it on purpose.  That sounds ridiculous, but he's been a little disgruntled lately about his diet.  He won't usually complain about it outright, but I can tell he's sad when he asks if things have gluten and I say yes.  What he does do is tell us he doesn't like certain foods that he should like.  Granted, a lot of our food has changed a bit in recent months.  We still haven't found a homemade pizza crust we like, and a lot of other foods have been tweaked slightly.  But he's now complaining about things that he ate fine for the first couple months, or things that there's no reason he should complain about (like our spaghetti, which is almost identical right down to the sauce).  He's complained about the bread, rolls, pizza, spaghetti, pretzels, cookies, crackers, cereal, cheese, and everything else possible, even though some of them are the same things he's always eaten and liked.  My theory is that he's complaining about everything in hopes that we'll give in and let him eat food with gluten.  He's practically admitted to it without using those words.  Obviously that's not happening, but Jacob isn't exactly a kid who accepts reality. 

So, part of me wonders if he did it because he convinced himself he could eat gluten and he wanted to rebel against us.  It's hard to say, and we will certainly be chatting with the afterschool folks on Tuesday, but it doesn't really matter at this point.  He ate it.  And I can bet he won't willingly do it again.  It's been bad.  Not as bad as it could have been, but bad.

He seemed off when he got home last night.  He was tired.  Awake enough to play video games, but very unwilling to move unnecessarily.  In the meantime, I was having a hard time figuring out dinner.  There are many places that we could go to dinner menu-wise, but we're always hesitant to do so because the risk of cross-contamination is pretty high.  Fast food is an issue, and because we thought that Jacob's behavior seemed tied to possible cross-contamination issues, we were always hesitant to bring that on ourselves.  Well...knowing he had already had gluten, it seemed like cross-contamination wouldn't be the difference between sanity (which, honestly, we haven't had in a few weeks) and craziness, so I figured we could try one of the borderline places.  I don't want to sound blasé, because I know any gluten isn't good, but exposure wasn't a sure-thing anyway.  I just figured it wasn't going to make much of a difference considering what he'd eaten earlier so we might as well take advantage.  So, I went to McDonald's to pick up our food.  They were very confused by my order, but they seem to have a pretty good handle on allergies so I think we may try again when we need something quick on the go. 

He ate his cheeseburger (no bun), a couple fries, and his apples, but by then it was apparent that he was feeling the effects.  He was exhausted and didn't want to move.  He fell asleep during a movie and Craig put him in bed, but he woke up  a little while later sad and uncomfortable.  He thought he was going to be sick so we set up the "puke zone" in his room (comforter on the floor for him to sleep on, bucket nearby) and Craig stayed in there for part of the night.  He called for Craig again in the middle of the night, but no puking, thankfully.  He and Craig snoozed on and off until 10am, and then Jacob spent the entire day on the couch.  He got up a couple times to go to the bathroom, but that was about it.  He could barely lift his head up.  His belly hurt, he had a low-grade fever, and he was congested.  We figure it may be a combination of the gluten and a cold coming on.  Either way, he was so sad and so pathetic.  He barely ate, even things he loves.  He didn't play at all.  My parents were here for the day and he barely responded.  We had to miss both Jacob's lacrosse game and the Knighthawks game tonight.  He perked up a little bit when he got to watch the game online, talking a little more and sitting up, but he conked out just as quickly.  Poor kid.

He's lucky because his symptoms weren't that bad.  They'll probably get worse the longer he's off gluten, but this time was bad enough and he didn't even have to battle the constant bathroom visits that a lot of people do when this happens.  The odd thing is that I can't help but wonder about the times that we thought he might have been exposed to gluten.  There have been times where he's had some small exposures or we thought he might have been exposed.  Those times it seems like his behavior just went a little haywire.  The difference this time is so huge that I wonder if he really did get exposed most recently.  In that case, the difference between the levels is surprising.  Or...maybe his most recent spike in bad behavior has nothing to do with gluten.  It definitely leaves us with questions, but one thing is not in question--that gluten no longer agrees with him.  If he did this on purpose, I can tell you that I don't envision him doing it again.  Now, he might convince himself that something else won't do the same thing, but hopefully we can make it very clear that gluten food will do this to him every time, if not worse.   Hopefully he'll be better in the next day or so, but he could be off for a week.  It's quite the price to pay for one bad decision made by a five year old boy. 

Gluten stinks.  Again.

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