They call us Mom: Celiac Disease Questions And Answers

by Bethy

As part of my duties here at "They Call Me Mom", my mission, if I chose to accept it, was to address Celiac Disease.

I was diagnosed in late '09. My first Thanksgiving with Celiac, I literally subsisted on mashed potatoes and butter, and coffee, while everyone else had the gravy, the great biscuits and crescents Grandma made. It's been a really long road, already. But, it's also been a huge blessing. Here goes:

What is Celiac Disease?
Celiac is a disease of the digestive system. Basically, when a celiac eats anything with gluten, the body treats it as a virus. It is an auto immune disorder. The "villi", little hairs on the intestines, are flattened. Numerous symptoms can develop, from flu symptoms such as vomiting and diarrhea, to headaches, crankiness, lack of concentration, irritability, and more. It is an equal opportunity offender on the body.

Many celiacs find that they have been accused of "faking", have been misdiagnosed with illnesses like Irritable Bowel Syndrome and go through tests upon tests before being correctly diagnosed. I was lucky... my malabsortion, dark circles under my eyes, and extreme vomitting gave me away. Starting on a gluten-free diet (which I have to remain on the rest of my life) and with an endoscopy, I was found, not to have an allergy to milk, or to be "Just delicate" but to be having issues with foods I was given to make me healthy - like rye and whole wheat!

What is gluten?
Gluten comes from Latin and means, literally "glue". It is that sticky substance in some grains that holds them together, and helps give dough its' characteristic stretch. In some, it is also a poison.

What do you have to avoid with Celiac?
Anything with gluten. This includes wheat, rye, barley and spelt (a "gentle" older cousin of wheat). There are major "Watch Out Zones" involving foods like oats, because even though this is a naturally gluten-free food, it is often contaminated in storage with wheat-containing items. There are companies that I do trust with oats. Not to worry: COMPANIES ARE GETTING IT. Actual mainstream companies market to those of us with celiac and related issues. 2/3 of the Chex varieties, and various other General Mills cereals are now marked as gluten free. And who the heck LIKES wheat Chex, anyway? :)

How does Celiac Disease Affect me as a parent?
I was literally sick and tired. I was undergoing stress. I was exhausted. I was in pain. I was throwing up all the time, headachey, you name it. Stress + Illness = Major Downward Spiral!

But, with better food, I was able to be more grounded. I better at holding my anxieties at bay. My thought process was clear, and I could control my pain, to an extent. And things, while not perfect, (I lost a few things that left me mourning) have gotten so much better!

How does the world perceive Celiac?
My family, at times, has not been supportive. From offering me "no no"s, to asking me, crudely, if I just was attempting to lose weight! My mother, bless her heart, while confused, works and fights for me. She might not understand it fully, but she works with me. She tears up if we're at Starbucks and I'm entertaining myself with a KIND bar with my coffee while everyone else has muffins. Throughout my life, she has gotten used to my diet being limited for numerous reasons. She helps me out, offering support and taste-testing for me. (Last month, she made a loaf of GF bread for me, as a surprise. It was marvelous, and I was delighted!)

Celiac disease is getting diagnosed more and more often, along with gluten intolerance and wheat allergies, and companies are noticing! (Admittedly, I remember crying when Starbucks pulled a really good gluten free orange cake off the shelves- it was different, but GOOD. But apparently easily moldy- some gluten-free food lacks in preservatives- and not that popular. )

Why is it important to eat normally?
First and foremost, survival! When I first began, I lived on brown rice and veggies for a while. Really, quite bland indeed! I tested numerous gluten-free breads available. The brown rice loaf can double as a weapon, it's about five pounds! And it tastes... well, not heavenly! Then I discovered tapioca breads and homemade breads like Bob's Red Mill Gluten Free "Wonderful Bread"- (IT IS!) and "The Gluten Free Kitchen" boxed mixes, I get that fluffy texture I got used to, plus its piping hot - just the way I like it! We are creatures of habit. Trying new things is sometimes difficult. We become used to the same old same old, and changing up routines stinks!

I like to eat healthy, but enjoy it too. Why just survive when I can LIVE? People first taste food... not just digest it. And I like to have food & fun with friends, and to enjoy all. My favorite foods have always been comfort foods--- a chocolate cookie, S'mores at camp fires, graham crackers with my tea or coffee, a good roast beef sandwich (No longer on rye, but still with swiss cheese!)- spaghetti and meat balls, and above all - did I mention chocolate?

We want comfort along with our nutrition. I come from a Slavic/German heritage. FOOD IS BIG. For happiness, for sadness, for comfort, for togetherness, we EAT. (I occasionally pull a stunt only my grandmother could be proud of- "Did you eat yet? Are you hungry? You must be. Eat." It makes my mother start laughing instantly.) Sure, it's a pain in the butt sometimes... but prices ARE actually, slowly going down, and things have gotten SO much better. And sure, I have to make my own on occasion, but it teaches me lessons. And sometimes, no one is the wiser!

The biggest reason? Hey, you may have an incurable disease. So what? You can enjoy food too! It's controlled by diet, and you need not just eat "food substitutes". Taste, texture, fun, comfort, are important to all.

My biggest inspirations have been my sister, G. and her son, who has wheat allergies among other things. We share numerous recipes and tips.

I also thank:

Danna Korn, author of Living Gluten Free for Dummies, (Danna also runs R.O.C.K- Raising Our Celiac Kids)
The fine people at the Food Allergy & Anaphylaxis Network, for tips and education.
Enjoy Life Foods: while not perfect, no company IS, there are some absolutely marvelous stuff, all free of the Big 8 Allergens (dairy, wheat, eggs, gluten, fish, etc)
Rice Dream makes the best chocolate ice cream bars. While I am not allergic to casein from milk like my nephew, C., I find that the rice milk loses no taste.
Ener-G Foods: For premade bread, the tapioca loaf, toasted, is marvelous. Non-Celiac approved, too!
Glutino Crackers- plain and vegetable. Mahvelous.
Tinkyada Pasta: You would NEVER know it's rice.
Need a fast dinner and can't just pull out the Hamburger Helper? Mrs. Leeper's (I called it Mrs. Leper at first.) makes the best gluten free version. Boil noodles. Add meat. Mix in with included sauce. DONE!