Sunday, September 11, 2011

Alert and Aware


Celiac Awareness Day is September 13th this year. It coincides with the beginning of the school year. I found the timing interesting, as I have a pressing need at the beginning of the school year to make Lillie's and Rosie's new teachers "aware" of their food sensitivities and needs.

In general, my approach is three pronged to make my daughters' school experience more comfortable. First, I speak to their teachers before school starts. Just getting their numbers can be challenging, and I always try to respect boundaries. However, I feel catching them for five minutes when I drop off the first day is not enough. If I see that leaving a message for them at school doesn't work, I call at home and preface by saying, "I'd like to arrange a time to speakthat is convenient for you." Some teachers are nervous after I tell them about Rosie's Epipen and her hospitalizations, but it is a necessary conversation. Some people have heard of celiac disease and some have not. Either way, we need to discuss an approach that's comfortable for all parties regarding celebrations at school and various situations when the school provides food for events. Ask the teachers the best way to reach the them during the year (e-mail, phone, etc.). Request that they be in touch before parties, and explain how nice it would be if they can offer foods the entire class could eat, e.g. an ice cream party instead of a pizza party.

I also mention the physical effects if Lillie is "glutenned" and make them aware that she is fatigued at times, and may need to use the bathroom frequently. Although it may be a bit uncomfortable to talk about your child's bathroom needs with a stranger, it's necessary especially since many schools have rules about not going except between classes. And, we know when a celiac kid needs to go...they gotta go!

Secondly, I put together a packet with my Memo about my children's needs, as well as a list of problematic ingredients (available on, and a "safe" candy and snack list from the Dallas chapter of Raising Our Celiac Kids (R.O.C.K.). More often than not, I find that the teacher calls me regarding ingredients, instead of checking the list. But at least, I feel I made an effort, and at least she is aware that she needs to be careful with ingredients. Lillie happens to be hyper cautious and will bring home treats she recieves at school for me to o.k. before she will consume them. I admire her restraint greatly given her age. About 1/4 of Rosie's class this year is allergic to nuts, so the teacher is hyper-sensitive about ingredients. That statistic floored me, but I was relieved that the teacher had to understand and deal with this issue, as so many children are affected.

Lastly, I send a big bag of acceptable snacks for my kids, as well as a jar of soy butter (peanut's are banned from the school) and rice cakes in case they forget lunch, to keep on top of their cubbies (or wherever else the teacher deems acceptable). Lillie's teacher gave alot of "treats" last year, so she dipped into the bag quite often. This year her teacher told me she doesn't give food as rewards...I was thrilled, as you might imagine! I also received permission to keep a supply of cupcakes in the freezer of one of the teacher's rooms, as birthday parties aren't always announced in advance. I can recommend Katz's decorated cupcakes , as they come in a plastic container and keep well. For Rosie, I provide Epipen's and other allergy medications for both her classroom and the school nurse (check with your school regarding rules pertaining to medication dispention). I found that a fanny pack (dig it up from your '80's clothing box) works well, as it can be attached to an adult and taken on class trips and in some accute cases I have heard, even just out to the playground on a daily basis. Included in the pack are clear instructions regarding allergies, dosages and parent's phone numbers for quick reference. One year the nurse requested a picture of the child on the corresponding medicine as a failsafe of sorts, and for quicker retrieval. I thought this was a good idea.

If you put all the steps in place to make the teachers and staff who interact with your children at school "aware" of their dietary and health needs, you are on the right track for a great year. Remember this is something that has to be dealt with, even if in general you are non-confrontational and a "go with the flow" type. So be assertive and direct in advocating for your child-- be a "grizzly mama"!

I thought about what I want people, in general, to be aware of in terms of celiac disease and food allergies, and I asked Lillie the same question. Her answer was that she wanted the entire world to eat gluten free, so that she could eat whatever she wants!

I would like people to be aware that:

*Celiac disease is not a food allergy; it will not be outgrown someday.
*You cannot take something "like Lactaid" and eat wheat products (not yet anyway).
* Although my daughter may have an appealing treat at a school party, she'd rather have what everyone else is having.
*My daughter stares at bakeries and pizzerias like they were selling diamonds she could never afford.
*My daughter can not have, "just a little, just this once" of any product with gluten, ever, period! *Even though there are many wonderful products in the supermarkets today labelled, "gluten free", my daughter doesn't necessarily like the way they taste.
* Gluten is in more than just wheat.
* Cross contamination is important. While I appreciate it if someone buys Lillie gluten free cookies, they cannot be put on the same try as the "regular" ones.
* It is not easy having celiac disease when you are a child. It is not easy having anything that makes you "different" when you are a child.
*I am grateful that Lillie has a disease that can be controlled by diet.
*I am grateful that there are many wonderful scientists working on solutions for managing celiac that may be tangible by the time Lillie is an adult.
*I am grateful that big companies now make affordable gluten free products which I can buy in my regular supermarket.
*I am grateful for all the wonderful people in our lives who "get it" and help make things a bit easier for my kids.

I tend to dread packing school lunches. Every morning there is that moment of scrutiny when the kids peer into their lunch boxes. The contents are discussed during carpool and compared. I really try to send in a nutritious balance for my kids, even though they would like to eat nothing more than pasta and pudding for each meal and snack. Below is a recipe for gluten free, allergy free blondies that I think are a nice treat once in awhile. Wrap in foil and write a note to your child on them with a permanent marker as an added surprise at snack time.

from Sophie-Safe Cooking by Emily Hendrix. p. 94

1 cup brown sugar (I like it with a bit less sugar)
1/4 cup vegetable oil
1/3 rice milk
1 1/2 Gluten Free oat flour
1 tsp. baking powder
1/4 tsp. salt
1 teaspoon vanilla extract*
1 cup chocolate chips*
1/2 cup chopped nuts* (optional)

*My additions

Mix all ingredients together in a medium sized bowl until the batter is smooth. Pour and spread into a greased 9x9" pan.

Bake for 25 minutes at 350. Cut into squares when cool. May be frozen in a zip-top plastic bagged, if desired.

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