Monday, June 16, 2014
The Stages of GFCF Denial (in our house!)
Yet last night, as I listened to her bounce and laugh loudly and sprint around the room for five solid hours after bedtime (despite a full dose of melatonin... something she hasn't needed in a long time...) I sat at my sewing machine and sewed and thought about the stages that I seem to go through every single time she's exposed to either gluten or casein. Because while I know that she can't have them, the delay that occurs between her having a teeny tiny bit of either and the seemingly inevitable distress that follows nearly always give me time to go through denial and hope and questioning all over again about whether maybe, just maybe the GFCF diet isn't really necessary. It's one way that Mae's reaction to gluten and casein differ from her sister's allergy to wheat and her brother's allergy to milk (because there isn't a delay to wonder with those two).
Nights like last night, however, remind me why the diet is necessary. It had been five months since she'd been exposed to gluten, and far longer than that since she'd had something with casein (dairy is, in my experience, so much easier to avoid), and the results of last nights little "test" reminded me why we do what we do around here in the kitchen... and why apparently even my upper cabinets now need locks.
Here are the stages that we tend to go through every single time there's a gluten or casein disaster around here:
1) Horror- It's discovered that our quick, quiet, climbing girl has gotten into something she's not supposed to be having. Maybe it's because she scaled two play gates (that were about five feet tall) and climbed up on a counter before her Dad could get to her to stuff as many dairy chocolate chips in her mouth as she possibly could or maybe there was a mistake in a restaurant and something wasn't really "gluten free" after all, but upon discovery the reaction is always the same. A dread of what could be two weeks of being on a roller coaster or long nights, pain, screaming and complete and utter chaos steam rolling through our usually orderly days.
2) Denial- Inevitably, when everything seems normal right off the bat, I start to wonder if it's really going to happen this time. Maybe we were wrong those last four times when the reactions were so severe and maybe it was something else, even though the only difference I could possible find was gluten. Maybe she's grown out of it. Maybe we'll be able to order pizza on Fridays and cuddle on the couch and watch movies and eat ice cream and she'll be perfectly fine! Maybe we've been doing this careful, sometimes stressful diet, often expensive diet, for nothing. In this stage I start picturing Maggie happily eating an ice cream cone and start kicking myself for not realizing sooner that she doesn't actually have a GFCF sensitivity and that everything is actually normal.
3) The Realization- The bouncing starts. I usually hear it from my bedroom and know that it's starting. Mae is a champion sleeper. We've even cut back on her melatonin (she wasn't taking it at all for a while, while she was sick...). She usually needs a solid 12 hours or she's really sleepy the next day. So when I hear the bouncing, or like the last night, sprinting from one side of the room to the other in the dark, I know something is up. Then there's giggling. I go in and put her in her bed. She giggles and kisses me. I say, "It's time to lay down and go to sleep." She says "up!" She kisses her stuffed cat and jumps out of bed and zooms around the room like a race car. I try to tuck her back in bed and go back to my room. Four hours later the pitter patter of little feet stops. Five hours after it began, the giggle finally turns into steady breathing. But I've been reminded what we're likely in for... and am finally snapped out of my denial.
4) Dread- It's midnight at this point. Four hours until the next stage will mostly likely start. Crying. Screaming. Pain. The high of how her body processes gluten and casein initially wears off and the extreme stomach and intestinal pain will begin. I'll hold her until morning wondering how I ever could have forgotten just what this was like last time.
This time we discovered that in the case of casein the pain seems to be less than with gluten, but there was still screaming that was loud enough to set off the home security system alarm this morning. We also discovered that with casein it seems to take slightly longer for the low to hit, closer to eight hours instead of the four it usually takes with gluten.
5) Re-Dedication to the Diet- I'll reorganize the kitchen. I'll hope to find locking food containers on clearance. I'll march around the house trying to find new ways to keep anything she can't have out of reach (is on top of the refrigerator safe?). I'll try to make sure that this never ever happens again.
6) The Wait- It takes approximately (okay, for the last four gluten exposures more like "exactly") 14 days for the effects of gluten to wear off completely. Those 14 days can feel like a long haul of discomfort and tears. I'm hoping and praying that casein maybe, just maybe, it isn't as horrible. After all... it was just a few chocolate chips... (in case you were wondering denial can pop up at any point).
7) Life goes back to normal- After two weeks life goes back to normal. The crying at night stops. Sleep schedules resume. Words increase. Everything is as it should be! And I remind myself of what it's like with just a single slip up and continue . It may not involve carrying an epi-pen and allergy melts like I do for my allergy kids, but in some ways it's just as frightening since she's the only one who's absolutely in love with the things she shouldn't be having and is so solidly determined to have them, unlike her brother and sister who both have aversions to the foods their allergic to.
Now on with our day! The casein reaction, well definitely still something to avoid, at the very least doesn't seem as severe as the gluten reaction. I'm still hearing words and she physically doesn't seem to be in pain like she has during the gluten slip ups of the past (she was even signing "cracker" this morning to tell me she was hungry)... and I can't help but find myself hoping that the dairy reaction stays comparatively mild!
So that's what a dairy or gluten slip up looks like around here! I can't help but wonder if there are any other allergy or GFCF parents out here who can relate to beginning to wonder if all this is necessary only to have it so glaringly reinforced whenever there's a slip up!