Last week, a friend reached out to me about her new celiac diagnosis. She messaged me the news and we scheduled a meet-up for the next day. I had 24 hours to think about what I was going to say, so I wrote this letter. It got me thinking about how truly amazed I am at how my life has turned out, though I never thought that I would eventually be diagnosed with a food-based autoimmune disorder like celiac disease.
If I could go back in time and give advice to my younger self, I would share this with her:
I’m happy I had 24 hours to think this through before we actually talked today. It helped me put together things I wish someone would’ve told me 15 years ago when I was first diagnosed with celiac disease.
I’m grateful and humbled to be able to help you navigate your new diagnosis.
Here’s the good part: you know now. That pesky piano you were carrying on your back while you were simultaneously doing everything else is now gone. And there’s no meds. It’s only up from here!
The first lesson we can share with anyone in our shoes is this: you have to look out for yourself.
The truth is no one really has the fortitude, and want, to help you drive this gluten free road but YOU. It’s not their fault. We forgive. They have their own plates that need spinning. Often times we think, “Hey what about me? Throw me a lifeline, I’m unwell over here!”. But basically, keeping their own shit together is their top priority. Life gets messy sometimes.
It’s often a maintenance and survival issue, so the top 3 on my wisest advice list is:
1. Stand tall.
2. Self care.
3. Love yourself and will yourself well!
The problem with celiac is it’s tricky. It gets mislabeled. It’s hard to pin down. One day it’s this, and the next day it’s that. Doctors are human beings with many sick patients and not a lot of time. I’ve learned that unless you’re in immediate critical condition, your personal quality of life may not be their first focus.
Thankfully, saving lives is their first order of business, and what a job that is! I was a nurse for many years and have a deep reverence for that. The appreciation for this has to be understood, and then you’ll see why your achy joints at 30 years old isn’t on their top list of concerns.
That means wellness and recovery ABSOLUTELY has to be on the tippy top of yours.
Now on to the navigation of your new health situation:
1. First of all, drink a lot of water! Hydration will help you on so many levels. Next, eat only meats, veggies, fruits, eggs, and nuts. All of which are delicious and healthful. It’s a tougher search for things to sustain you if you’re a vegetarian, but you have to persevere in order to feel fabulous—and you will feel fabulous.
2. Ditch the dairy, too. Don’t wait like I did. There is all sorts of recent scientific research that ties lactose intolerance and celiac disease together. Once I got rid of dairy and upped my water intake did I know what true health feels like.
3. Avoid all the over processed gluten free replacements full of sugar and hardcore damaging ingredients. That stuff will take you down. And I know you—you give everything 1000% of your effort. Thinking somehow you will find the perfect cookie or muffin is not the best use of your precious time and energy.
GF replacement foods are garbage and wrecked me.
Hate is a strong word, but I’ve grown to hate GF replacement foods and all they represent. I naively believed somehow that these companies making these alternatives to muffins and breads had some interest in my health and nutrition, and the answer is zippo. It’s a money thing. Yes, there are healthy alternatives to gluten out there, but simplest and most successful way to direct your energy is to buy the purest, freshest and most colorful things you can find to eat!
4. Get strong. This is probably one of the most important things you can do, as your physical health and mental health are fundamentally linked. Walk, lift light weights, dance, swim, sleep, and build your strength doing things that you enjoy and make you feel good.
5. Focus on your recovery and gratitude. Gratitude is imperative now that you know what you need to do.
Don’t weigh yourself down with the why’s or the woulda, shoulda, coulda’s.
Your focus instead is on being the best most healthy version of yourself NOW.
I’m so happy for you because you have a new year and a fresh start to this new life! I promise you that there is no material thing or gift bigger than your health.
I’m here if you need me. Love you.