The month of May is National Celiac Awareness month.
And while I could rattle off the numbers of people who have Celiac or some form of wheat intolerance or allergy, I’m going to share some of our family’s story instead. Why? For me, it’s personal; it hits deeply and closely to home. I have celiac, and so does my sister, so it doesn’t get more personal than this.
My youngest sister was diagnosed with Celiac disease at a time when virtually no one knew what Celiac was; she had been quite ill, anemic even after several blood transfusions. When her doctor admitted her to the hospital, a biopsy confirmed the Celiac diagnosis. Our other sister, a nurse, began researching to help the rest of us wrap our heads around the disease and what it meant – and what it meant initially was no wheat. But none of us really understood the long-term ramifications of Celiac and how it affects the body. Common sense said to avoid wheat, and we assumed everything would be fine. Except that is wasn’t. And it isn’t.
Even though she has been gluten-free for several years now, she’s had enough blood transfusions to blow out the veins in both of her arms. When doctors realized they could no longer place an IV, a permanent port was placed in the upper part of her chest so that she could continue to be transfused regularly.
Over the years, the effects of Celiac has continued to not-so-silently eat away at her body. Last October she began to experience severe, intermittent abdominal pain – a few days here, a few days there. She couldn’t eat; she couldn’t keep anything down. She knew something was wrong and discussed it with her doctor, and that began the journey we now find ourselves on today. Blood work, ultrasounds, CAT scans, PET scans, upper and lower GI scopes, enlarged lymph, elevated levels of something I cannot even pronounce, tumors in the gut, emergency trips to the hospital, severe and unrelenting pain. And still, she hasn’t been able to eat since last October. She has lived on coconut water, bone broth, and kombucha — maybe a bite of mashed potato here and there, but nothing stays down.
The doctor who performed the upper and lower GI scopes told her she didn’t have Celiac and that she should start eating gluten – yet he hadn’t bothered to look at her chart. When she pushed him about the weight loss (which at that point was about 50 pounds), his response was that ‘she could stand to lose a few pounds.’ And here’s where I swear so feel free to skip ahead to the next paragraph. Asshole. He’s an asshole and shouldn’t be practicing medicine. It’s now the end of May. She’s in constant, severe pain, and nearly bedridden, she’s lost more than 100 pounds. This week includes a consult with a surgeon to schedule exploratory surgery and hopefully get enough tissue to biopsy the tumors in her gut. I’m scared.
Why am I telling you this?
Because it’s National Celiac Awareness Month, and ever since my sister was diagnosed, it’s been a fight for her survival.
Look, I understand that we all make our own choices to eat what we want, but consider this: if you’re eating gluten-free as a way to diet, I want you to reflect on my words and look at the photos of my sister. If you’re following a gluten-free diet because it’s the latest fad, please reflect on my words and look at the photos of my sister. If you have been told to eliminate wheat from your diet and you ‘cheat just a little, cheat every now and then, cheat only when you are out in public’ or think ‘yes, I can’t eat wheat – but tonight I’m going to eat whatever I want,’ then please, read my words again and look at the photos of my sister.
And if you’re eating gluten-free, then understand what that means. Get tested. Do your homework. If you don’t need to be gluten-free but choose to because it makes you feel better – you have a right to make that choice. But keep in mind that when you announce at a restaurant that you’re gluten-free but then order a piece of chocolate cake or a doughnut or a plateful of gluten for dessert, the waitstaff in some restaurants won’t take people like my sister and me seriously. And if you’re cavalier about being gluten-free around friends and family who aren’t educated about gluten or Celiac, the same holds true – it sends the message that Celiac is a whim, a fad, not real.
I’m praying you remember this post, you remember these photos, you remember the face of my sister. Instead of giggling at the ignorance of a handful of people on a late-night comedian’s video-clip who know nothing about gluten or Celiac, keep in mind just how serious this is.
Because I’m afraid. I’m afraid she won’t be here next year. I’m afraid her children will lose their mother. I’m afraid I’m going to lose my beautiful, funny, vivacious sister.
I’m not laughing, I’m crying.
It’s personal. And by sharing my sister’s story, our story, I’m hoping it becomes personal for you too.
I’m grateful for companies like Toufayan who provide high-quality gluten-free foods for people like my sister and me; Toufayan is a client and when I asked my sister if I could share her story as part of National Celiac Awareness Month – she didn’t hesitate and said ‘yes’ immediately. Wraps are quick, easy and simple; filling them with eggs, a few spring vegetables and a bit of cheese, then folded over and grilled, makes a really lovely breakfast quesadilla.
GLUTEN-FREE ASPARAGUS BREAKFAST QUESADILLA
Makes 1 Quesadilla
- 1 Tablespoon butter
- 3 eggs
- 2 Tablespoons milk
- ½ teaspoon kosher salt
- ¼ teaspoon white pepper
- ½ cup fresh asparagus, steamed or grilled al dente and chopped
- 2 Tablespoons fresh chevre (goat cheese)
- 1 Tablespoon fresh herbs such as chives or thyme (optional)
- 1 Gluten-free Toufayan Spinach Wrap (or whatever flavor you prefer)
- Melt the Tablespoon of butter in a medium-sized non-stick skillet
- Whisk eggs, milk, salt and pepper together and pour into a medium hot non-stick skillet; with a rubber spatula begin stirring the egg mixture
- Continue moving the eggs around the skillet until the eggs are nearly set but somewhat soft; remove from heat and stir in the chevre cheese; transfer to a plate and set aside
- Heat a large non-stick skillet (no oil) and place the Toufayan wrap directly into the pan and spread the egg mixture on half of the wrap starting at the center and working toward the edge
- Sprinkle with fresh chives (if using), then the asparagus and fold the empty side of the wrap back over the top of the egg/asparagus and press gently
- Continue to cook over medium heat until the wrap is lightly browned (skillet side); flip and repeat until both sides are golden brown
- Remove from heat and cool for 3-5 minutes; cut in half (or thirds) and serve immediately