When I was diagnosed, finally, in September of 2000, smack-dab in the middle of my 40th year of life, I was ecstatic to get that answer. I was being seen by a specialist where an osteoporosis-celiac study just happened to be taking place. Celiac?-what's that? Like most others back then, I had never heard of it (or gluten, for that matter). My blood was drawn and I was told it would take a couple weeks for the lab work to be complete. Two (or was it three) days later, I got a call at work (no cell phone for me back then).
I remember standing in the office of the school where I worked, hearing those words from the nurse, “You have celiac.” I was SO happy—beyond happy. “I thought it would take a couple weeks for results,” I asked. “Your numbers were so high that the results were very clear,” she answered. “But you will still need a biopsy to complete the testing.”
I knew what this diagnosis meant (or thought I knew); I’d have to change my diet to gluten free. But that was OK; I had an ANSWER! “This is wonderful!” I said, nearly jumping up and down with joy. I’m sure my emotions were clear even through the phone line—but then I was confused. The nurse responded solemnly (like she was reporting that I had cancer or something similar), “No--you have celiac.”
Celiac is not a death sentence. This diagnosis meant another chance at life—at living! Gluten free? Pffffft… piece of cake! I had an answer---finally! But I was told not to change anything about my diet just yet, not until after the intestinal biopsy.
Gluten Free – Here I Come
I started my gluten-free journey on a high note---that “I have an answer” high that I didn’t think anything could bring me down from. Ooops, was I wrong.
When Joy Turns to Tears
As an early childhood educator I understand the importance of highlighting the “can dos” over the “don’t dos.” Instead of “don’t run,” use “walk please.” Instead of “don’t touch that,” offer “here’s something you can play with.” Children don’t automatically know what they should be doing by being told NOT to do something. And at this point, I was a child. I was in the infancy stage of my gluten-free life and I was only given a lot of “don’t dos.” It was incredibly deflating.
The Grocery Store Experience
A trip to the grocery store that used to take approximately an hour, start to finish, at the most, now took more than twice that. The utter frustration brought me to tears more than once. OK, to be fair, I am an emotional person. I cry when I’m happy. I cry when I’m sad. I cry when I’m frustrated. And OH-BOY was it frustrating having to read every single label of every single item that went into my cart. I quickly learned that this “gluten-free” thing was taking over my life!
Cravings are Real --- Cravings are Powerful
Food is powerful. Who doesn’t crave this, smell and want to eat that, see and want to dive right in to the other. And when your body has been starving for nutrients, literally, those cravings are even more powerful; they can be all consuming. So that, “no more fried chicken,” and “not another single piece of chocolate cake with creamy white frosting,” and “no more pizza loaded with all my favorite toppings,” started to hit me---hard!
Two weeks. It took a whole two weeks for that reality to hit, that reality of “never again, no more, nadda, zilch, OH MY GOD I WANT TO EAT _________,” to hit. And I remember crying (alone). I didn’t want my kids to know my grief. They needed to see that this diet was OK with me (because it was necessary for me in order to be completely present in their lives). It wouldn’t be fair to them to be given reason to feel sorry for their mom. That’s what being a parent is about. But I did cry, and I cried hard. It truly was a mourning phase, the mourning of a death. It feels wrong to compare it to the death of a loved one, but facts are facts---it was comparable (not equal to, just comparable—in that early stage, anyway).
When we hit a wall we have two choices: remain there in a crumbling mess or turn.
A Ray of Light
Steps. The first recipe I found was for some kind of muffins. The flour was just rice flour. They were OK, not fabulous. Of course, I learned later that the secret to gluten-free baking was a blend of flours and starches, but the result of that first attempt, albeit not great, let me know the potential was there for baked goods.
And then I found the recipe that proved to me that this was going to be OK--Carol Fenster’s recipe for chocolate chip cookies. This was huge. This was when I transitioned from infancy to toddler. Toddlers still cry a lot, but I was now that autonomous two-year-old with that, “I can do it myself” ambition. Of course, this did also come with the tantrums of a two-year-old, but those failed attempts drove the need for success.
The mourning phase still took some time to work itself through, and just like the death of someone close, the reality would hit hard from time to time over the months, and maybe even years. But time does heal the pain, and so does hard work, wanting to be better for self and family, and remembering what health was (or lacked) before being gluten free.
Allow yourself the pain. Allow yourself to mourn; it’s part of the healing process. But in between the tears and the tantrums, be sure to put on those boxing gloves and know what you are fighting for----YOU!
Coming up in February:
The Emotional Side of Dietary Differences: Food is a Memory
A Video Presentation
I kicked this series off with this video presentation:
Free of Gluten, Not Free of Feelings: The Emotional Side of Dietary Differences
Encourage your family and friends to take the (just under) fifteen minutes to view it in order to better understand you. At the very least, ask them to please fast forward to slide #8 (approx. 2 minutes 45 seconds in). Our kids deserve their understanding of this portion.