Tuesday, November 1, 2011

Explaining Evelyn: Part 2 - Defining Gluten, Celiac, and What It Means For Our Family

 If you're saying, "Hey, wait a second.  Part 2 of what?"  Then start here.

I was going to go right into what Evelyn's diagnosis means for our family, but much of my explanation of that makes no sense unless you have a full understanding of what gluten and Celiac disease really are.  So bear with me while I put on my nerdy former teacher hat and geek out on you here.  I love teaching.  So it makes me all giddy inside to get to do this part.

What is gluten?

Gluten is the protein portion of wheat.  Wheat is a seed and as such, has several parts.  Remembering back to elementary school here?  At one point in your life you were able to cut out these words and paste them onto a diagram.  Just sayin.

So when you go to the store and buy whole wheat flour, you are buying the endosperm and bran layer ground up (so really, it's not whole wheat, fyi).  If you are buying all-purpose flour, they took out some of the bran to make it make your baked goods come out fluffier.  If you are buying white flour, they took out all the bran and left the sugar of the seed (endosperm) and bagged that up.  The gluten is found in the endosperm, but even the wheat germ and the bran are going to contain traces of gluten because they were in contact with it. 

Almost everything you eat has some quantity of protein in it.  It's just that in some foods we have given the protein a separate name such as gluten in wheat and casein in dairy.  All of these proteins are treated as protein in your body, but they have different markers on them that say what food source they come from.  It is these markers that cause problems in your have an allergy, sensitivity, or auto-immune reaction to a protein.

What is Celiac Disease?

Celiac Disease is an auto-immune disorder.  It is not an allergy.

A person who has an allergy consumes something they are allergic to and their body treats it like a foreign invader and attacks it.  Just like when your body attacks a germ, it can result in uncomfortable and/or dangerous symptoms ranging from a runny nose to your throat swelling.  These reactions are generally immediate.

With Celiac though, if you consume gluten, your body reacts not by attacking the gluten as an invader, but rather the gluten triggers your body to attack itself.  This starts in the digestive tract and can have far reaching consequences throughout your body ranging from indigestion and rashes to failure to thrive and cancer.  These are not immediate reactions.  They usually start within 24 hours and can last for weeks.  The long term damage of your body attacking itself is what leads to things like slow weight gain, infertility, and cancer in Celiac patients.  These reactions can be a result of the consumption of mere molecules of gluten.

How Does It Affect Your Family?

Picture yourself making homemade bread, slicing it up, making a sandwich, and sitting down on your couch to watch TV and eat it.  Let me describe to you everywhere in your home that is not contaminated with gluten or "glutened" and we call it.  You have to think of gluten as you would tar.  It sticks to EVERYTHING it touches and can't just be brushed off. 

The bag of flour and anything it touched including other food items in your pantry have been glutened.  Your mixer is glutened because flour does get up into the motor and comes out in future uses.  The baking pan is glutened because it is most likely impossible to get every molecule washed out of the corners in particular.  You oven mitt is glutened because you probably touched part of the bread when you pulled it out of the oven.  Your cutting board is glutened.  Your counters are glutened.  Your dishrag that you washed them down with is glutened.  The stick of butter, jar of peanut butter, and jelly are glutened because you probably double dipped your knife into them after touching your bread.  The glass you are drinking out of is glutened as is the water in it because there are particles of gluten on your mouth after taking a bite.  Your couch is glutened from crumbs.  Your remote is glutened because you touched it after touching your bread.  If you answered the phone during this time it's glutened.  If you checked your email, your whole keyboard is glutened.

Starting to get the idea?

Now enter your child who cannot consume even molecules of gluten.  She can't touch hardly anything in your house because she's a toddler and often puts her fingers in her mouth after touching things.

This is why our whole house is gluten-free.  We can't make her whole world gluten-free, but we have to keep where she is 95% of the time safe for her.

Restaurants are almost completely off limits.  Even those that claim to have gluten-free options most often do not keep things separate enough in their kitchens.  The pizza place uses the same vat of sauce for all their pizzas so it's cross contaminated.  The same pans and ovens are used.  The same knives are used, or the same frying oil is used.  If it's nearly impossible to avoid cross-contamination at home where I am super careful and am personally vested in the result, I can't trust most restaurants to be even more careful.

So if you want to know how it would start to affect your family, think of how many times your family runs through a drive-through, goes out to dinner, or picks up a frozen pizza for a night off from cooking.  Now take that away.  Now add to that how many times you go over to a friend's house to eat and have a night off from preparing food and take that away too.  Add on birthday parties, people bringing you food after you've had a baby or surgery, days at amusement parks or the zoo, visits to family, and family vacations and take away those times off from cooking as well.  I can't even put her in the church nursery without preparing, packing, and bringing along a snack for the entire class.  Forget preschool, those rooms are swimming in gluten.

So you pretty much never get a break from cooking and/or packing and preparing food and can't really leave your child in the care of anyone else because it's usually too hard to get others to understand and accommodate.

Add on the feeling of a tightness in your chest during a trip to the park when someone pulls out a box of goldfish or animal crackers.  Or you walk into the library to let the kids play and you see visible crumbs all over the floor and can only assume that they are gluten.

So that's a bit stressful, no?

Then add on to that the reality that she does sometimes consume gluten despite our best efforts.  Unless we lock her in the house, it's bound to happen.

Reactions generally last a little less than a week.  It starts with a rash.  It progresses into knock down drag out tantrums.  For there it becomes sleepless nights.  And finishes off with loose bowels and potty accidents.

I promise I don't write all this for you to pity us.  I don't need pitied.  I don't mind compassion toward our situation though as does any parent of a child with some sort of special need.  I say these things so that you understand why I don't want you to bring snacks with you over to our house, or ask you to have your child wash their hands if they've been eating gluten before playing with Evelyn, or don't come out for play dates as often but rather invite people over instead. 

That's our world.

Part 3 - My favorite resources for going gluten-free and answers to cooking/recipe questions I'm often asked.


  1. These are wonderful posts! They are very informative! My sister also has issues with gluten- and I think your post may help many others. mel


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