The Aftermath of Being Gluten-ed

On Tuesday, my son was fed a quarter of a slice of bread at the daycare centre he goes to three days a week.  A staff member served it to him accidentally.  Click here to read the post.  Yesterday morning when I posted, he had already had one diarrhea before heading off to daycare, and I posted that I hoped that would be the end of it.  Knowing all along, that of course it wouldn't.

The thing with being gluten-ed, as I like to refer to his ingesting gluten, is that unlike an allergy where the reaction is often almost immediate, the effects of gluten drag out over several days.  With my son, it usually begins with a rash, and progresses from there.  He has been on a prescription anti-allergic for the past few weeks, so the rash was suppressed, but the rest of the effects began strongly yesterday, and have carried into today.

Yesterday at daycare he had diarrhea that was so bad the staff had to change his entire outfit.  His eyes watered and his nose was stuffed, and he began to drool from breathing through his mouth.

Then there is his behaviour.  The gluten exposure changes his behaviour drastically.  He becomes whiny and defiant, unhappy about everything.  He was so whiny last night we finally just put him to bed.

This morning it was more of the same.  He stays home with me on Thursdays, and this morning he refused to participate at all in his mom-and-tot class, lying on the floor and rolling a truck back and forth for over 30 minutes.  The rest of the time he just wanted to be on my lap, watching the other children play.  Normally he sings and does crafts, playing with his friends.

Additionally, his appetite goes off the charts since nutrients aren't being absorbed.  Today, he ate a bowl of gluten free cereal, a gluten free waffle, a banana and two cups of rice milk for breakfast, followed by 1 cup of strawberries, another banana, a sandwich bag full of veggie chips and two packages of fruit gummies for his morning snack.  Then an entire box of fish sticks for lunch, followed by soy yogurt.  He's only two years old.  He gets so hungry he begins to cry and beg for food, something he normally never does.

All by noon.

This of course was interrupted by another bowel movement so horrendous that it was both up his back and down his legs, soiling even his socks, not to mention his shirt, his pants, his arm, my jeans, our couch and the floor.  As soon as I got that cleaned up and a new diaper on, it happened a second time.

All this because of 1/4 of a slice of bread, two days ago.

I'm so angry I could spit.  And heartbroken that my baby is suffering needlessly.  It wasn't a case of incorrect labeling, or a misunderstanding, or accidental cross-contamination in a prepared dish.  It was a result of carelessness on the part of the people I pay to care for my son.  An accident, but a careless, unnecessary one that should have been prevented.

I Answer Calls From the Daycare with Dread

This afternoon I received one of the dreaded daycare phone calls:  My son had ingested something containing gluten.

I know that these things happen, but sometimes the call annoys me more than other times.  Particularly when the contamination was completely avoidable.

Like today.

At the beginning, when they were still feeding him and trying to accommodate his needs, sometimes there was confusion on their part about which foods were safe, particularly when one brand is safe and another isn't.

Sometimes, there was cross-contamination from utensils, toasters, counter tops, etc.

So, in an effort to cut that out, I began providing all of his food in reheat-able containers to avoid the cross-contamination.

Still, the children eat together at tables.  Sometimes my son grabs for something he wants off someone's plate and shoves it in his mouth quickly.  I don't want him sitting at a table alone, but he's only two and so doesn't always understand why he can't eat everything that his friends eat. These things happen.

I know there are crumbs that may go astray, residue from playdoh paints that contain wheat that may somehow end up on his fingers or in his mouth.

But today..... today a staff member served him bread.  And then someone realized what had happened.  After he had shoved the piece in his mouth and eaten it.

So when I saw their number on the phone, I dreaded picking it up.  They only ever call when he's sick or when he's ingested gluten.  When I asked if he had grabbed the bread from someone's plate the response was "No.  Someone served it to him."

I think I said OH.

I like the people who are in charge of my son's particular room, and they are generally quite vigilant, but there have been more than a few incidents of cross contamination.  Most of the time when a "floater" or a replacement cook has somehow cross-contaminated his meal.

But that's not my son's fault.

The daycare has a printout (11 pages) of acceptable and unacceptable foods.

They have instructions on how to avoid cross-contamination.

They have all been briefed on what my son can and cannot eat, and how to avoid cross-contamination.
 
Tonight, there was only one diarrhea before bedtime.  I'm hoping that's the end of it.

Fingers crossed.

Daycare Dilemmas

Explaining Etienne's dietary restrictions to the daycare providers took some time, and so far there have been a few cross-contamination issues that needed to be resolved.   I must say that the staff has been making a strong effort to support my son's dietary restrictions while not making him feel left out.  I still worry every day, and some days my worrying has been justified.  However, since we haven't even made it through one full rotation of the menu since he's been on his new diet, I'm willing to stick it out a little longer while all the kinks get ironed out.  I am aware that I may have to eventually provide all of his food from home, but hopefully it won't come to that.   

So, in case there's anyone else just starting down the same path and wondering how exactly to explain it all to the daycare, here are some tips to get you started.  Good luck!

Tips for Ensuring a Safe Food Environment at Daycare

1- Go straight to the top: Schedule a meeting with the daycare supervisor.  Inform the supervisor in advance that the meeting will take at least an hour.  Ask to include the person(s) in charge of food preparation if possible, and to have a copy of the recipes and an ingredient list for every item in every meal served ready for the meeting.

2- Bring reference material: Print out or photocopy an explanation of celiac, symptoms, and complications.  Include a food list and food preparation instructions.  Make enough copies for everyone who comes in contact with your child and one additional copy for the centre to keep as reference.  Ask to have your child's name and dietary restrictions added to the list that all child care providers keep of children with allergies.
The Canadian Celiac Association has information at www.celiac.ca and the website www.glutenfreediet.ca has a printable foods list.

3- Recipe Reference: Go through the ingredient list one item at a time.  Not just the general menu, but each recipe.  I made the mistake of thinking that the chicken drumsticks would be fine, until I learned that they're breaded first.  This takes time, but its worth it in the long run.  Highlight items that are off limits and ensure that the list is posted in the kitchen.  

4- Substitution Solution: Ask that extra portions of foods that your child can consume be packaged and frozen so that they can be served on days when the centre is serving something your child cannot eat.  Agree on which items you will be substituting, and then bring in portions wrapped in single serving sizes.  Ask about any ingredients (such as nuts) that are not allowed into the centre to avoid having food returned unopened.

5- Don't leave anything to chance: Provide the daycare with separate dishware and utensils for your child's meals.  Also provide a cutting board and any other cookware or utensils to be used in the preparation of your child's food.  Cross-contamination can occur simply by toasting gluten-free bread in the same toaster that is used to toast regular bread.  Crumbs are enough to make someone sick.

6- Keep track:  Request a copy of the menu and ingredient list, and keep track of what is served each day.  At least for the first little while, make a quick note of any reactions your child has and what was on the menu that particular day.  It makes it easy to spot trouble ingredients or potential causes of cross-contamination.