Celiac Disease Awareness | Allergy and Asthma Awareness | Lifestyle | Change
For many of us, Awareness Months are both necessary but also a reminder that when the month is over, there’s a lifetime of work to do. It all begins with change. When change occurs, we remove obstacles out of our way that allow us to move on to things we’ve always wanted to do. Photo by Imei Hsu 2018.
We’re almost near the end of month of May, and it is Celiac Disease as well as Asthma and Allergy Awareness Months. Am I late to the party?
Silly question, I know. If you have Food Allergies, Chronic Illness, or Autoimmune Disease, this is no party, there are no balloons, and the cake usually has something you can’t eat.
I’ve been watching the action out there, and rooting on the efforts of so many to try to bring awareness to these three medical issues. Much of what is being shared falls squarely on awareness; what is it, what it isn’t, and who is affected.
What I’m about to share isn’t a bunch of statistics about Celiac Disease, or a discussion about the available theories as to why Celiac Disease has had a boost in popularity, whether from awareness about the disease itself, or from instances reported about bullying those who must be gluten free to live.
This also isn’t about the millions of Americans, both children and adults, who live with serious food allergies and asthma, baked milk challenges, or the peanut desensitization programs using the Israeli peanut butter snack food, Bamba.
Instead, this is a personal message about life with a diagnosis of Celiac Disease, Food Allergies, and Asthma, a trifecta of life-altering medical conditions that could have stopped me from living anything close to a normal life, yet motivated me to get busy creating a pathway to healing and strengthening that anyone who wants to make a change can replicate, but there is a cost.
This isn’t a motivational speech. If anything, it’s about my message, “Making food fun again, ” because as much as I sometimes tire of repeating those four words, I also know that they are life changing the minute these diagnoses land on your doorstep and invade your life.
My Not So Normal, Normal ‘Day In The Life’ Still Sucks
Last year, I wrote an article and posted it to Medium.com about how having an autoimmune disease changed my life for the better. If you read it all the way to the end, you’ll see that I make it very clear that I would never, ever wish my diseases, food allergies, and asthma on anyone. There is no circumventing the gritty and grim reality of having to shift just about everything in your life around a world of eating, drinking, and environmental change. Nothing but nothing is convenient. Very few things are truly easy; they just become a little more manageable with practice and acceptance, or at least initially, some resignation and diligence. But rarely easy.
My mission is still the same: Make Food Fun Again, for people with Autoimmune Disease, Food Allergies, and Chronic Illnesses. If anything, I’m even MORE passionate about my mission, if that is even possible! My present issue is that part of the lifestyle is still relatively new to me (only five years in for Celiac Disease), and I haven’t completely jumped on the “Awareness Month” bandwagon with all the excitement that I think an advocate should. Why? Because normal life with these medical conditions still contains a large quantity of “suck” in it, and there is no effortless path through them.
What do you say to someone recently diagnosed with Celiac Disease, NCGS (Non Celiac Gluten Sensitivity), Food Allergies or Intolerances, or a medical condition warranting a dramatic change in eating and lifestyle (think: gout, Type II Diabetes, cancer, heart disease, etc), after that person just sat down to eat in a restaurant, and her favorite foods have just been taken off the table as viable options?
In that moment, you don’t say to that person, “It’s OK! You can have this side of carrots with this other protein, hold the dairy, and you can have this starch if they don’t have X, Y, or Z in it, and you’ll be fine!” That is a prescriptive moment, meant to direct an action using a rule or a method, and in the appropriate time, we all have to act prescriptively towards ourselves.
No, in that moment, empathy is the only humane act we have to offer. “That sucks,” is the declaration of the moment.
That sucks, because you can’t enjoy something that once was a part of your experience of eating, socializing, and experiencing the oral and visceral pleasure of being satiated and satisfied. That sucks, because your options just got blown to tiny bits. That sucks, because you’re hungry and what’s left on the menu isn’t going to do it for you. That sucks, because you may feel like you are suddenly outside the circle of friends who could eat and drink anything for kicks and giggles, and they don’t call you anymore.
What seemed so easy and carefree is now complicated and exhausting. What was once exciting is now sometimes boring. And if you have asthma as well, that’s just one more thing that can suddenly creep up on you and prevent you from escaping into nature and the beautiful and wondrous outdoors. A fun car ride with the air conditioner on, and you might have an attack. A run through an area with BBQ’s lit for outdoor cooking can leave you wheezing. You may wonder which one of your attacks might be your last. All of this is a big ol’ ball of suck, and I would be a horrible person if I ever left anyone who suffers from any or all of these conditions an impression that they are easy to live with. They certainly are not.
My “normal life” looks to many like a series of unfortunate conditions, and I don’t try to trivialize them, nor create clichés and platitudes to cheer anyone up about them.
But when I say I more passionate with my mission, “Making Food Fun Again,” I believe there is a way of living with these conditions without diminishing the truth of its cost to each person (and each loved one who supports them, as well).
So, life can still suck with Food Allergies, Autoimmune Disease, and Chronic Illnesses. And, we can each still find moments of strength, wonder, excitement — and might I add in there, FUN! — when you discover you can do more, be more, feel more, with pockets of good health, a moment of respite from the ravages of disease, the spark of connection between us when we understand one another’s afflictions, and share the emotional burdens, together. I am amazed by you, and you in turn are inspired by me!
The Same Old, Same Old, But With New Toys!
I’m collecting my posts from May 2017 to gather into a short eBook for my community regarding 31 Days with Celiac Disease and Food Allergies. As I read through the posts, it became really clear that nothing has really changed. Celiac Disease still has no cure. Food Allergies stll do not have a cure, but there may be a desensitization program that could work for young children (same has been said for awhile). Chronic Illnesses are still on the rise, and America’s most common serious health conditions are the same preventable diseases of the years before, with no end in sight. We have an epidemic of chronic illness on our hands.
The more significant changes that have caught my attention are in the areas of research and technology. As we learn more about the microbiome, we discover that a more diverse one can positively affect the brain, mood, and the body’s immune system. We have new tools being developed to test the gut flora from your own home, test your blood for food sensitivities, and test food for various allergens.
We even have new technology to improve the way people cook at home. In a future post, you’ll hear about my experience cooking with the Hestan Cue, a smart cooking system targeting upscale home entertaining, but with the added benefit of teaching otherwise reluctant home chefs (um, that would be me!) how to cook sumptuous, Instagram-worthy meals that are customizable to your unique nutritional and medical needs.
While much of the world moves away from home cooking, the rest of us are going back to the essentials of cooking real, whole foods with healing ingredients. Culinary Medicine has emerged as a field of study for young clinicians. Your pharmacy can be found in your refrigerator and your pantry.
Get Off the Processed Faux Food Ride
From the very beginning of My Allergy Advocate, I knew that my message would not be a popular one. “Eat Real Food!” and “Cook At Home”, perfect as three-word hashtags and memorable calls to action, don’t stand a chance against a dump truck of sugar, chemicals, and emulsifiers disguised as a gluten-free baked treat. People will eat chocolate for breakfast if it’s poured on top of a food that has the auro of health attached to it. Simply call it gluten-free cereal, and people think it’s good for you.
Yet no matter what condition you live with, all of us are up against a biology that says the same messages over time: diets that are high in sugar, excessive in salt, and overwhelmed in unhealthy fats, do more damage than good. They rob of our health, one bite at a time; worse, they rob some of us faster than others. But no one gets lucky with it, and of those who are the least lucky, it’s the people with digestive disorders like Celiac Disease. They pay a high price, both in the pocket and with their health, when they eat a standard gluten-free diet that leaves that trio of sugar, salt, and bad fats in the hands of food companies trying to meet their business’s bottom lines.
If you haven’t already, it’s time to get off the processed faux food ride, and even more so when that food includes processed gluten free foods. Instead, aim for nutrient dense natural foods, foods that your body knows what to do with. By limiting and restricting preservatives, gums, and unnecessary chemicals, you can focus on nourishing your bodies with foods that give energy, restore micronutrient balances, and don’t leave you chasing the sugar train like an addict.
And if you sniff around my website’s recipes, you’ll see that I eat tasty, satisfying food! I know that if food is boring, we tend not to eat it.
Change Is Hard, And That’s All I’ve Got
For people like you and I, the party didn’t just get started with May as an Awareness Month. Instead, we were invited to a party we didn’t even know existed, and then every year, we’re reminded that this whole lifestyle change is new to some people; we’ve just been here a bit longer.
Maybe you’ve just arrived at that point of accepting your medical condition, and now you’re wondering, “Why is it so darn hard?”
Change is hard. It’s not just hard for you; it’s hard for everyone. What I’ve been calling you and others like you to do is hard. It’s not, “Eat clean 80% of the time”; it’s more like, “Eat clean. Period. Even when you don’t want to. Even when it’s hard. No choice.”
Change can feel like you’re dying, and in a way, that is exactly what is happening. A habit is singing its final swan song, low and mournful, and full of pathos. When I had to give up corn tacos and corn chips, that was one thing. But then walking away from ketchup, grilled cheese sandwiches, Croque Madame, twice-baked almond croissants, certain fruits because of the excess sugars, chia and quinoa, milk chocolate, white potatoes (wah, French Fries!), most Indian food (can’t have alliums, beans, legumes, ghee), most Chinese food, and even gluten free oatmeal… and the list goes on and on… there were so many little deaths.
To call you to that change sounds like anything but fun. So you’ll have to trust me that everything I ever ask you to do is all about making your food — and your life! — fun again.This message is in everything I say and do here on this website. Change is hard, and it’s all I’ve got to offer you. Make the change, and your life will transform with it. Then the real fun begins.
When you have your health and that spring of energy in your step, when you are no longer afraid of how to nourish and care for yourself, you can go on to do the things you’ve always wanted to, or at least, to do the things that are most important to you. For one person, that’s waking up and having enough energy to care for her child; for another, that’s waking up, jumping on a bicycle, and going for a 20-minute ride through her neighborhood; still for another, that’s being able to travel to another city, set up home base, and explore.
As I enter my fifth year officially diagnosed with Celiac Disease, I am embracing the life-long celebration of thriving during Celiac Disease Awareness Month. I’m breathing in and out without an inhaler in the Tucson desert during Allergy and Asthma Awareness Month. And I’m carrying my epinephrine auto injector with me, in case I’m stung by a bee or eat something contaminated with my food allergens. But nothing is stopping me from living life to the fullest, because I have made the changes to my food, movement, rest, and stress levels to give me the best health I could ask for.
If you want to make that change as well, start by acknowledging how hard it is, and don’t give in to thoughts that somehow you are lazy, wrong, or weird. Think about what happens if you DON’T make the change; that is, you’ll be on the same, sick-of-being-sick track, and you know where that goes. Yuck. And think about what’s blocking you from making even one part of the change. My bet is that the obstacle you name isn’t the real problem at all; it’s a symptom of what’s in your mindset that is the real obstacle. And that mindset can be changed.
If you need help with getting started on those changes, take a look at my free resources, or contact me and ask for a complimentary coaching session to see if I can be of help to you.
