Monday, June 16, 2014

The Stages of GFCF Denial (in our house!)

We've been through the cycle of Mae eating something that she shouldn't have eaten enough times that you would think that I'd be a pro at it by now.

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!


  1. I don't have any kids with food allergies myself (other than a nursling who get a *little fussy* when I eat green peppers, and that is easy to avoid). But we have a good friend with a 12 year old daughter with gluten and cassien sensitivity who is on the autism spectrum, and she often makes me think of a grown-up Mae when I read your posts. She REALLY wants the stuff she can't have (even as old as she is, and she is very verbal, and good about following most directions, so its not that she doesn't understand its a "no-no", she just really wants it). And finances and other complementary family allergies (other kids are allergic to common substitutes for gluten and dairy) mean that simply purging all allergens from the house is impossible if they are not going to just eat chicken and fruit. So all the allergen-containing cabinets are padlocked, as well as the fridge, and mom has the keys on a waterproof chain around her neck (because a twelve year old can find the keys anywhere else and use them). The little girl also has wandering issues, so they have had to deal with changing the house locks to key-only deadbolts on both sides with the parents again carrying the keys (which is a bit scary with respect to escape in case of a fire, etc., but as the only other alternative would be the parents sleeping in shifts, the risk of the "slim possibility" (fire) has to be balanced against the "would happen" (night wandering). They also had to switch to only driving places when both parents could come - one to operate the van, and the other to sit in the back and prevent escapes when the car stopped for a red light etc., since a twelve year old can easily undo any car seat restraint known to man. She is such a sweet little girl and her family loves her so much, but knowing them has definitely opened my eyes to all the things I take for granted, like my kids staying out of the top cabinets, in their beds (and the house) at night, and just sticking them in the back of the car and expecting them to stay in their car seats / seat belts!

  2. You know, it sounds like these foods make her high, then she crashes and goes through withdrawal. Because of the reward of the high, she craves the foods. This is like any addiction, like alcoholism, who would drink the way an alcoholic does if they were not addicted? Some of us have the same patterns with certain foods. In some ways it is worse than an allergy because of the inner drive to eat what damages. I recently discovered that live lactic acid ferments decrease my urge to eat things I should not. I plan to start my first crock of homemade sauerkraut this week. Meanwhile, I accidentally discovered that my lactos intolerant kid can drink Kefir without stomach cramps.

    I hope this session lasts less time!

  3. I think you're definitely right Ann! We think she's one of the people that processes gluten and casein into something like morphine... and that's partially why she doesn't seem to feel pain when she's had them either. And then the crash comes.

    Today has definitely been easier than it would be with gluten. She's short tempered and cry-y, but at least not in pain.

  4. All of these posts have opened my eyes about a lot of things!

    Only one of my three appears to have an allergy, and it's only affected him in super high doses. I think it has something to do with citrus, because he simply cannot control his behavior when he eats a highly concentrated vitamin C tablet. It's so weird! But it's also so sad for me to see him in such a state, so we avoid the vitamin C tablet for him at all costs.

    I truly cannot imagine dealing with most (if not all!) of the allergy issues in your home, and I commend your patience, diligence, and "far-sighted ness" in caring for and educating your children!


  5. After I read the first comment from Anonymous, I was really stumped, because if at 3 (almost 4) Mae can get into upper cabinets lickety split before Daddy can stop her, then like Anonymous says above, what will happen when she's 12?
    Well, no use worrying about it before it happens. I'm sure you'll figure it out when the time comes. But I'm sure all the chasing around is exhausting, and I pray for you guys all the time, so you will have the strength and grace to do a great job raising these kids.
    God bless. ~ Bonnie


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