Our Story

Enjoying the Gluten-Free Good Life

(Excerpted/updated from a post I wrote for the Gluten Free Challenge blog in April 2011)

I’ll be honest: I’m not an inherently optimistic person. Overall I have to work hard at being positive. But one area in my life that it just comes naturally is Celiac disease. It became automatic, when, a day after receiving my own diagnosis in 2007, my G.I. doctor said, “There’s
a good chance one or both of your daughters might also have Celiac.”
The day before, after weeks of intense,
24/7 digestive distress and a battery of tests, my doctor had called to tell me that my endoscopy results had shown that I had level IV Celiac disease. I had never even heard the words “Celiac” or “gluten” before — and all of a sudden I had some sort of “disease.” Without much explanation, my doctor advised me to hang up and research it on the internet, which is when I first dove in to learn all I could about Celiac disease and gluten.
On one hand, I was very relieved to find out that Celiac disease required no medicine and was basically a diet change. But then I started reading the extensive lists of forbidden ingredients and was overwhelmed by what a huge change it would be for me. The day of diagnosis was full of mixed feelings… relief that I had a diagnosis that didn’t include the word “cancer”, but also a sort of shock about all of the changes that were about to ensue, plus feelings of loss and self-pity…
But it didn’t last long…
The next day I was sitting face to face with my doctor in his office, asking him questions about the biopsies and other test results, and of course the Celiac diagnosis. The most valuable thing he said to me was that I should get my twin girls tested because “there’s
a good chance one or both of them might also have it.” Those words had a profound effect on me. All of a sudden I just knew that there could be no more self-pity, no more depressing thoughts or acting overwhelmed, and most definitely not another utterance of negative words having anything to do with the diet or Celiac itself. My husband agreed wholeheartedly.
There was no way in the world we were going to have our (then 4 year old) daughters
see or hear me feeling sorry for myself or saying anything bad about Celiac. We made
the decision that from that moment on all talk about it would only be positive (unless we had complete privacy) and that if anyone else said anything negative, we would be ready with a positive rebuttal. And that is how it went. As we told our extended family about Celiac disease, we explained to them that the girls were going to get tested, and that
we wanted to keep all talk positive around them in case one of them was diagnosed.
And to our family’s credit, they complied. I could see and feel my daughters soaking it
all in and forming their own opinions about Celiac from what they heard and saw in
adult conversations.
Looking back, that was one of the best decisions we ever made. Because sure enough, one of our daughters (Morgan) was diagnosed about 4 months after I was. By that time our girls had heard so much about the gluten-free diet and had already started learning which foods were safe and which were not, that it was no big deal for her to learn she
had Celiac disease. In February of 2008, she just began the GF diet along with me and, thankfully, she has been compliant without complaint for over 7 years now. My other daughter, Lindsey, was finally diagnosed with gluten sensitivity in March of 2011, after suffering from daily bad stomach pains, delayed growth and weight loss. Since day one
on the GF diet, her pains are gone and her growth has been much better.
Back when I was diagnosed (knowing I might need to find the right words for my children)
I began looking for ways to explain Celiac Disease to them. Unfortunately, I couldn’t find any books or web content that were both positive enough and age appropriate, so I decided to come up with something of my own. That’s when my idea for a children’s book began, and a few years later became a reality. I truly hope that the book and this blog will become a huge source of help, encouragement and support to other families like ours.
I believe that the single most important thing you can do for your child is to simply be positive about their gluten-free diet. Make it fun. Try new recipes. Make your child feel lucky to have been diagnosed, but don’t let it remain a mystery. Make sure Celiac disease or gluten sensitivity is explained to kids in a way they can understand so they can gain a sense of ownership and are able to explain it to others in their life. Make sure everyone’s on board as supporters for your child, and then get out there, jump in and start enjoying the gluten-free good life!
Click here to see the original post and additional text.

5 thoughts on “Our Story

  1. I love your ideas about having a positive attitude, and asking your extended family to keep things positive as well!

  2. Pingback: Interview with Katie Chalmers – Kids with Celiac Disease

  3. Love, love, love the positive outlook. I too write a blog. I started positive. However I feel as though I allowed some of my negative feelings to come out lately. Thank you for inspiring me to view things in a different light again. I needed that. 🙂

    • Thanks Elizabeth! Glad you found the inspiration you needed. You’re always welcome here. 🙂 I checked out your wonderful blog and shared it with my sister whose son has multiple food allergies. She’s already a follower! ~Katie

  4. I am so glad you left a comment over on Day 1 of OneCreativeMommy.com’s 12 Days of Christmas, which encouraged me to visit.
    I LOVE your website, and the children’s book excerpts look awesome! I totally LOVE how the family’s diet changes – not just the little girl’s, which is totally how my family started eating better as a result of my daughter’s multiple food allergies diagnosis. We also have some children stories and games in the work, that I really need to try to devote more time to. You’ve inspired me to keep working to make that dream a reality too.
    I hope you enjoy the gluten free, allergen free peppermint candy cane cupcakes if you try them out.
    Have a wonderful week!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s