Monday, July 6, 2009

crying over rice tortillas (vs. spilled milk)

so yes, it's true, tonite i did cry over the rice tortillas. it wasn't really about the tortillas (though the were hard and crumbly, and really not quite like a real tortilla at all). it was about will and his gluten free, dairy free diet.
let me back up to say that will had some rough months early on. he spit up a ton, had some reflux, was colicky (not that i wanted to admit this at the time), and slept awfully. he'd wake up writhing. we'd try burping him, gripe water, tylenol, rocking him. some of it worked, but he'd still wake up again, seemingly uncomfortable. some people may say maybe we just needed to sleep train him and he'd figure it out. maybe he was just manipulating us so that he could be held, rocked, or get sugar water (aka gripe water) from a syringe. but our gut feeling just kept telling us it was something more. not to mention he would have a nite or two that he'd sleep great, followed by a night where he'd be up every hour or two. this pattern lasted until he was almost 15 mos. i stopped talking about it. i tried 'embracing' the moments i had with him all nite long, i tried to enjoy co-sleeping (though he'd kick me in the head or ribs or neck). i started drinking coffee. and more coffee. i tried to pretend he was sleeping just fine. none of which really worked. so i started a food diary. trying to track every ingredient of whatever he was eating. i started reading and researching food allergies/ sensitivities, and we started noticing some patterns (particularly with dairy and wheat...and then gluten (wheat, barley, rye and some oats). all the while, it was harder and harder to come up with what to feed him, with the constant stress of not knowing if he'd be up all nite or be fine. ...whether he was getting enough protein and calcium and iron...
i scheduled an allergist appt, but then found out that before 2 yrs old there are many false negatives and positives, and the skin pricks are sucky for anyone. so then we heard about entero labs and some of the gluten/ casein testing they do (using stool samples vs. blood samples for increased sensitivity, and doing genetic tests). it's a little controversial in the medical community (as no one really understands gluten sensitivity/ celiacs disease, until symptoms are full blown (and by that time the gluten has attacked your system to the point of damaging villi in the gi tract and all kinds of other not so great diseases/symptoms (cancer, infertility, gout, diabetes, ulcerative colitis, etc.). anyway...i read and researched, and decided it was a good option. then the results came back positive. he had genetic predisposition for celiac's disease and gluten sensitivity (meaning he got it from chad or I or possibly both of us) and sensitivity with cassein (a protein in milk). his stool showed an active autoimmune response to both the gluten and cassein as well (meaning his body is trying to 'fight' the gluten/ cassein). they recommended a life long gluten/ cassein free diet. the kicker is that once you go gluten free, your body's immune system becomes even more sensitive to small amts of gluten and tries to fight it off more vigorously. thus, no cheating. sorry will, no pizza, birthday cake, cookies (not to mention all of the foods that have hidden wheat/ rye/ oats/ barley). the neurotic parent is me says---am i robbing my child of his childhood?! not to mention...someday, beer (and everything else in between).

on one hand there are some strong theories/evidence out that that over time an autoimmune response from gluten can break down your system on many levels---from a GI standpoint (with ruined villi leading to decreased food absorption, discomfort, extreme gas, IBS, diverticuli, etc), from a blood sugar standpoint (diabetes), from a neurological standpoint (trouble concentrating, seizures, MS), and so on. the list of symptoms/diseases related to celiac's and gluten sensitivity is LONG. many people have 'silent' symptoms for years, and then it isn't until something triggers (hormone change, surgery, trauma, etc.) that they recognize the symptoms. at that point they have already had years of autoimmune damage. why would i want to set my son up for this? (let alone is he now mostly 'sleeping like a baby' on his new diet. :)
and if i have the same makeup, why would i continue with a gluten diet. (not that it's as big of a deal for me...i've had plenty of pizza, cake, etc, and feel only slightly deprived---unless we are at a local brewery and i have to order wine)
on the other hand.... well food is a really big deal. food is social, it's part of who we are, it's a way we connect with others. it's a part of development and exploration. it's also a necessity, and the more limited we are with what we can eat, the more singled out we can be. i decided to go gluten free (given the fact that I gave will my genes and my family history with many 'gluten sensitive' symptoms ranging from gout, diabetes, cancer, IBS, GI issues, bloating, etc. etc.).
so finally a few months later, i'm figuring it all out. it's becoming less of a big deal....
and then i drop will off at a babysitters last week (for the first full day). there are 5 kids there having a great time. he's overwhelmed, taking it all in, and very shy...and then one of the dad's walks out with a pizza fresh out of the over. all the kids flock toward him. will looks at me and starts to make his sign for food...and then his sign for please....and then pointing to the kids...and the pizza. my heart breaks a little. this will be the first of many...i pull it together, until tonite. i'm already thinking about wed, when i'll drop him off again. so i start making rice tortilla pizzas with goat cheese...and they fall apart and are hard. and chad finds me crying over the rice tortillas. he says it's cute...and a little silly. and it is...but at the same time, am i doing the right thing? i guess this is just the first of many for me too...questions/ decisions in parenting.


Melissa said...

That just made me cry too. Of course you're doing the right thing. Don't question yourself. He obviously feels better, and you do too. And pizza is seriously overrated, right?

LambFam said...

Oh Juli - Will is so lucky to have you as his mamma. Not only are you willing to do all the work to figure out what was going wrong, but you are putting yourself on the same diet and you are so empathetic as to have your heart break over these rice tortillas. (BTW - Namaste pizza crust rocks!)
As you said, you made the right choice as to what suffering he will do (rice tortillas vs disease and discomfort) You are amazing!

JMCarotenuto said...

I 'third' your friends' comments. You ARE doing the right thing, just as you did before when it wasn't yet clear. You are an incredibly sensitive, caring and giving person Juli. Chad and Will are both very lucky to have you in their life.

ALL families have battles, decisions that need to be made and some 'structure' to adhere to. Kids have hard times with some/any/all of it. It's just that your issues will surround the food/health subject. Others will struggle and work around other obstacles. The nice thing is that gluten and cassein free products are so much more readily available these days. Giving thanks for small things!

xo from Kenya