Originally posted on dsimpsonbooks.com
This is the first in a 2018 series of monthly blog posts relating to the very real struggles those who follow medically required special diets face. This is not a pity party. This is not about the, “woe is me” factor. I feel very blessed to have finally found health, even if it means this strict gluten-free diet. Nope, this is not a pity party at all, just the very real side of things.
Be sure to share the video presentation at the bottom of this page
to help family and friends understand
The Emotional Side of Dietary Differences.
An answer! ~ I have an Answer!
I spent a lifetime seeking answers to various health issues. Welllll….not my entire life, of course; what eight-year-old calls the doctor? I just eventually took over where my mom left off. She was always looking for ways to help me gain weight, to relieve my issues with constipation, and to prevent and diminish my chronic and serious asthma attacks. But a lifetime of health issues it was. For the couple years before I turned 40, it got pretty scary for me. I was seriously concerned about my future.
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.”
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; I had an answer to something I had most likely been living with most of my life. But I was told not to change anything about my diet just yet, not until after the intestinal biopsy.
Gluten Free – Here I Come
Later that month, the biopsy showed clear damage even before the pathology report. I was sent home a couple hours after I woke up, a list of ingredients to avoid and an appointment slip with a dietitian in hand. My (then) husband and I stopped at Olive Garden for my last ever (or so I thought at that time) pasta meal, before I jumped, both feet forward, into my new hope for health.
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
I left the dietitian’s office with a view of my food world being even smaller and more cumbersome than I initially thought it would be. I initially thought it would be doable; now I wasn't so sure. Before this visit I thought I could eat that chicken noodle soup, but just avoid the noodles. I thought I could still eat a cheeseburger, but just pull off the bun. Until then I had no idea that wheat could have so many other names and sneak its way into so many other ingredients. And I realized that this was oh-so-much more than “just” avoiding bread, cookies, pasta, and crackers.
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 just 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
If you wish labels were clearer now, it is nothing like it was back then. Perspective, I guess. Modified food starch, flavorings, vinegar—it all required a call to the manufacturer, and sometimes even they asked, “What’s gluten?” Back then we were told to avoid vinegar (as it may be derived from a gluten grain). We have since learned that the distillation process removes gluten, but just imagine. Look at all your condiments and salad dressings. This is just a small example of the lack of clarity and the even shorter list I faced when wondering, “What CAN I eat?” *(Special Note: Malt vinegar is still NOT gluten free. Malt=barley=gluten.)
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
I had absolutely NO idea back then that there were replacement flours that made it possible to make products I thought I’d have to live forever without. And it was this “live forever without” that slowly and gradually crept in to my core.
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
I wasn’t as familiar with the computer then like I am now, but I turned to it for support---and wow! There were support groups out there in the cyber world. There was information and research, and even better, there were ways to make those foods I was missing greatly.
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. (Although I later wished I learned to start with healthier blends, but that's OK; we are in constant states of learning.)
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!
You are worth being the best you can be.
Ellen, mom of a preschooler shared,
"We love that book! My daughter asked to read it almost nightly when she was diagnosed. We've passed it to her preschool teachers too to read."
Be sure to grab your FREE Kindle version when you purchase a paperback edition on Amazon.