I have been enjoying a gluten free lifestyle for a decade. The biggest tool I have developed, after years experience, is TRUST.
This may sound touchy-feely, but this is really what mastering a gluten allergy is all about. It’s easy to talk about gluten and how to avoid it from a scientific perspective inside a book or a doctors office. But the truth, the reality of living with the diagnosis, is that you are scared a lot of the time about making mistakes, or paying the price of others making them unknowingly.
What I am always surprised by is the way the medical profession acts like celiac disease is a prison forever locking you away inside your own kitchen.
I am tired of this explanation, which fits too snugly into the column of “advice doctors give to avoid a possible malpractice lawsuit.” It’s WAY TO EASY for doctors, nutritionists and others to simply tell you “you are probably getting low level gluten exposure every time you eat out.”
People that hand out this advice are not living in 2012 where A LOT of people, especially those in the food industry, are waking up to the possibility of serving gluten free dinners. Now is the time to eat out and let your local chefs know about you.
My own process went from trusting myself, to trusting others I knew well, to trusting chefs and waiters around the world. The last part was hard but today I am confident that every time I eat out the chef and the staff will do their absolute best to serve me a meal that will not make me sick.
My road to a diagnosis was very LONG but this is not uncommon.
I spent years suffering from extreme heartburn that was searing my esophagus and a whole host of other unpleasant issues that left me lethargic and extremely thin. I was always tired and wished I had more energy. As my acid reflux got worse in my 20′s I had to sleep sitting up in a chair at night. I have extensive damage to my teeth because of the acid they swam in every night.
After years of enduring this pain, I happened to mention to my friend, a speech pathologist, about my issues. She told me something no doctor had ever mentioned: that esophageal cancer comes from acid reflux. Her father died from esophageal cancer and she knew a ton about it. Something switched inside me at that moment. I realized that years and years of taking Prilosec to relieve my pain was really damaging my body.
I started to ask around and made my way to a new surgeon that was well known for doing what is called the nissen fundoplication. This is an intense surgery where they adjust the concert of muscles that enable you to swallow and keep the lid of your stomach closed. But before they do it….many, many tests must be performed. Enduring a 24 hour acid test with a tube up my nose and down my throat for 24 hours. Esophagogastroduodenoscopy to see the extent of the damage. Barium MRI’s. It was never ending. It was awful but I didn’t care. I just wanted to feel better.
But I didn’t. The surgery was complete, healing deemed perfect and I still had acid in my stomach. It was stuck in there now. The surgery moved the problem down lower in my body. My acid reflux still prevented me from eating almost everything accept eggs and white rice.
A few weeks later my mother called me to let me know she had tested positive for Celiac Disease on a blood test. The very same day I started researching what Celiac’s Disease is and how it works. I scheduled an appointment with the surgeon who said “yeah, that could be the problem” and I went home and stopped eating gluten. He never informed me about my options for testing at that visit only that I should try the diet.
I stopped eating gluten in 2002 and it took about six weeks for me to start feeling better. And then I started noticing I could eat things again. I had more energy. I was putting on weight. I started to understand how people could exercise and be active instead of dead tired all the time.
I have never cheated and am ruthless about taking care of me. But this has not prevented me from living an extraordinary life – one that is filled with delicious foods from all over the world and a feeling of freedom to eat and not get sick.
It wasn’t always this easy…..it took time. Which is one of the reasons I write this blog – I feel the pain of beginning, the fear of getting sick even in my own mastery.
This blog talks about where I eat gluten free in New York City, where I live. I also write travel guides for gluten free travelers so they can easily arrive in a city knowing that they already have a set of options available.
There are many, many restaurants out there that are eager to serve you their delights. Get ready to be delighted.
You can contact me directly at brandi AT lovingaglutenfreelife.com