Saturday, October 24, 2015

Two Years and Counting...

Two years ago today, we started Jacob's gluten-free diet.  He'd had his intestinal biopsy that day, and even though we didn't have the final results, it was pretty clear at that point that we'd be doing some sort of gluten-free life regardless of what the results showed.  It was, in the immortal words of the Muppets, time to get things started.

I know I felt very lost in those first few months.  I had been in such a routine with my dinners, and even then I had some nights where I had no idea what to make.  It was pretty difficult to realize that some of my standbys would never be an option again, and I'd have to spend a lot of time, research, and money figuring out how to revamp my menu.  I felt like I was starting from scratch, and with one picky five-year-old and a presumably picky second kid just starting solids, I knew it would be a challenge to find things everyone would like.  Oh, and at that point it appeared Carter was intolerant to rice (whether or not he was is hard to know for sure, but he sure did puke up that one cereal repeatedly), so that complicated matters further because I usually couldn't feed him what we were eating.  I felt lost and helpless in the kitchen, and even more so when we were on the road.  Not being able to confidently eat out was so hard.  Some days, it still is.

Two years later, it is easier.  We have our go-to restaurants, and if we don't know one off-hand, there's an app for that.  You don't always know if you can trust them, or if they'll have something Jacob will eat, but it's a start.  Dinners at home are easier, but sometimes I do have a hard time thinking of something to cook that we haven't already eaten recently.  We abuse pizza, chicken, gluten-free pasta, potatoes, and the only two veggies everyone will eat, corn and broccoli.  We love tacos with corn shells, rotisserie chicken from the store, and breakfast for dinner.  We have a three week rotation of Italian food, with gnocchi with sausage one week, spaghetti with meatballs the next, and family-favorite macaroni and tomato soup (often with good bread) after that.  We eat a lot of breakfast for dinner, especially in Craig's absence.  We rotate through my pancakes and waffles, Wegmans frozen waffles, and Aldi's pancakes, and most recently, French toast and sausages, while adding in scrambled eggs and egg and cheese sandwiches on gluten-free bagels.  I've been able to convert a bunch of my recipes to a gluten-free version, and even found a few convenience foods that are similar enough to what we used to eat.  Wegmans is a great source, as is Aldi, and we're lucky to have both around.  I try to maintain a list of foods I can make, so I can reference it when I get a mental block on what we haven't had in a while.  Just the other night we had sloppy joes, which had somehow fallen off my radar for a while.  I need to utilize Pinterest more to give me new ideas, and I need to plan better.  But there's no doubt we're in a way better place than we were two years ago.

Jacob has handled things pretty well.  Once in a while he gets annoyed by something--something non-gluten-free that one of us is eating, or something he desperately wants but can't have.  Parties and picnics are still hard, but luckily Jacob is happy filling up on a lot of normal snack foods like chips and cheese puffs.  Not healthy, I know, but sometimes it's just not that easy to bring food with you.  Sometimes when I do make the effort he won't eat the good stuff anyway, so I try to carefully consider where I make my effort.  I do my best to be prepared and have a backup (even if it is McDonald's).  I would love for him to choose fruit and salads more often, but I can only fight that battle so often.  Ultimately he will one day be an adult and hopefully he will be a little more concerned with his own health and learn to make better choices.  Forcing it now would probably only do him a disservice.

I think my biggest challenge as his mom is that I can't tell what's actually going on in his body.  Jacob's former teacher, who also has Celiac disease, seems very aware of when an illness is caused by gluten vs. something else.  I don't think Jacob has quite figured it out yet, maybe because he hasn't been exposed that often.  We've only had one horrible reaction, early on when he ate pretzels he shouldn't have at the afterschool program, and beyond that we've only had a handful of possible exposures.  But it's hard to tell if it was just a random stomach bug, or if it was the gluten.  He complains of stomach aches and nausea more often than most kids, but it rarely becomes anything.  Sometimes he recovers a little too quickly for me to think it was a legit complaint, so it's always hard to tell what's going on.  It's not that I don't believe him, but sometimes I think he convinces himself of things--either on purpose or accidentally--and it's a self-fulfilling prophecy.  Like if he wants to stay home from school, or if there's something he's nervous about, he may come down with a stomach ache.  I think he often lets his imagination get carried away, and he truly thinks something is up.  He may have pains, or just feel off, but it's hard to gauge how severe or serious it might be.  So, ultimately, it's very hard to tell if he's getting mild exposures here and there, or if there's something else bugging him.

Most recently this Cheerios debacle has been a tough one to navigate.  Initially he seemed fine--no stomach issues, no signs of problems.  Or maybe he just didn't notice.  But then he did notice.  And shortly thereafter I noticed him falling back into old meltdown tendencies.  He also had his first toilet-clogging BM in a while (which used to happen all the time, even after he went on the diet for a while), which seemed like a bit of a coincidence given everything else.  So while I don't have any proof because his reactions aren't like most people's, I can't in good conscience let him eat them again.  If he can't tell exactly what's going on either, I can't risk that he's getting damage from them.  He's stayed away from them on his own very well, but it stinks.  It was like a whole new world opened up...and then closed again.  Trial and error is really tough in a situation like this, but I guess we're lucky he doesn't get as sick as some people. 

It's been a long road, but aside from a large-ish handful of panicky moments, I think we're doing okay.  We figure it out, somehow.  I can't say that we're old pros yet, but we're getting there.  There might always be times where his dinner is a bag of chips and a slushie, but as long as most of the time it's not, we're not doing too badly.  Sometimes when I navigate in the car in places I'm not entirely familiar with, I say that I will get us there, just maybe not in the most efficient way possible.  And I think that holds true with this.  He will get fed, he will be fine, but we might have to be a little lost and confused before we succeed.  Jacob was dealt a crappy hand, no doubt, but I hope that someday medical advances and food companies will make his life easier.  This problem isn't going away, for him or for society as a whole, so I can only hope someone will make it a priority.  But until then, I'll keep bumbling through my gluten-free cooking adventures until at least I get it right.

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