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Living with Celiac Disease

There’s so much more to it than eating gluten-free.

Here on Long Island, bagels are the first choice for a Saturday morning breakfast. New York pizza is the famous staple of Friday nights and family gatherings. For people like me who have Celiac Disease, these are common rituals that we must abstain from because over time, they can literally kill us.

In America, we do not test infants for Celiac Disease the way that they do in other countries. I didn’t know that my body was intolerant to gluten until I was 15. My favorite thing to eat after a long day of school and cross country practice was a great big peanut butter and honey sandwich on wheat bread, but I noticed that I began feeling horrible pain and discomfort in my stomach every time I ate.

What was worse than the discomfort was the incredible sluggishness that I felt. I was always tired, even on the weekends when I was given the chance to sleep in. Before I knew it, eating was the bane of my existence, and I complained about my sour stomach enough to make my parents finally take me to the doctor.

After a series of tests that included an upper endoscopy and a test for lactose intolerance, I was deemed as having Celiac Disease. As someone who already had the dietary restrictions of a strict vegan, I couldn’t think of anything worse. It turned out that there was gluten in so many common American foods, and even in health foods. Most of the meat substitute products that I’d been eating as a vegan were filled with “wheat protein” as one of the first ingredients.

If you don’t really know what Celiac Disease is, that’s okay. Most of us afflicted had to be educated about it later in life. In short, it’s when a person is unable to digest the proteins in wheat, barley, rye, and possibly oats. These foods are highly destructive and damage the lining of the small intestine.

Why is Celiac Disease so serious? It comes with a laundry list of complications from depression to infertility to anemia. It’s an autoimmune disease that can trigger other autoimmune diseases within the body. It’s genetic, too. The only way to treat it is through a gluten-free diet, and there are no other known cures.

Thankfully, the world is becoming more educated and anyone can go on Amazon and find a cookbook that meets their needs. Celiacs can find a way to manage other needs, like vegan or Keto diets, while still staying strictly gluten-free. However, when eating out at restaurants, individuals with this disease need to have an abundance of caution: foods prepared on a surface that so much as touched gluten products, like using the same skillet or toaster, are contaminated and unsafe.

By time I was diagnosed and treated properly, I had also met with a nutritionist because I was iron deficient. I learned not only to eat better, but that not sticking to my diet was associated with certain kinds of cancers and could make my lofty psychological ailments even worse. At home, I had my own cutting board, a separate toaster, and my own shelf in the cupboard to avoid contamination. I only ate at restaurants that not only had a gluten-free option, but promised to change gloves and sanitize surfaces when preparing food.

Over time, I’ve made some changes to my diet and have incorporated eggs and dairy products into the mix of foods that I eat, remaining vegetarian since 2009 but no longer vegan. For a while, I was regularly “cheating” and eating foods that I knew were toxic for me, but a recent visit to my doctor proved that that was a bad idea. Going back to eating gluten because I loved plump, doughy bagels was a bad call that had made me gain weight and had made going to the bathroom a daily nightmare.

The best (and only) thing to do to treat Celiac Disease is to eat gluten-free and to let other people know about our needs when socially gathering to eat. There’s nothing embarrassing about this ailment, and there are tons of resources available to gain control of the common symptoms associated with it. As time goes by, people are becoming more educated and it’s becoming easier than ever to eat gluten-free everywhere.

I write about various topics and occasionally share wisdom I’ve earned through suffering.

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