Ever since I was little, I had a “nervous belly.” I would be stuck eating broth and crackers for days after having yet another stomach bug. We’d go to the doctor, and he’d take x-rays and say, it must just be another virus. For 18 years I had viruses. It seemed constant!
As I got into high school, things seemed to be better as long as I avoided dairy, my arch-nemesis. But in my senior year, my boyfriend (now husband!) shipped off to boot camp, my dad was diagnosed with cancer, and I spoke at my graduation (a huge fear of mine). All of those stressors combined to make my belly a wreck.
I lost 10 pounds off of my already thin frame, and I found myself only eating a couple bowls of white rice a day. This time we knew it wasn’t a virus. My dad had been struggling with symptoms and had been diagnosed with Celiac disease a couple years earlier, so we knew to check. Shortly after my first GI visit, I was diagnosed as well.
Since then, it has been a long and confusing road. Things got better, then really bad, and then a bit better again. I’m feeling a bit more in control now, but I still struggle with symptoms from my celiac and complications from it every day. Though there is more awareness now about the condition, there are several things I wish were more widely known.
Here are five things I wish everyone knew about Celiac Disease.
1. Gluten free as a trend harms celiacs.
Though the trend diet may have brought more dining options to us, the level of care that must be taken for Celiacs is not the same as being gluten free by preference. Celiacs, myself included, can become seriously ill from something as small as stirring a pot of gluten free noodles with a spoon used to stir a pot of gluten noodles. Or a small puff of flour from making pizza dough. Or even grabbing a handful of chips with the same gloves used to handle tortillas. Because so many people eat gluten free for preference now, that same level of care is not taken.
2. Sometimes, being gluten free isn’t enough.
Many other foods can cause the body to react just like eating gluten, and it is different for everyone. For example, I have a celiac friend who can just avoid gluten, but everything else is fine for her. On the other hand, I have to avoid all grains, nightshades, and dairy before I am even close to symptom free.
3. It’s not just stomach problems.
Celiac disease is an autoimmune disease, which means that all of the typical autoimmune symptoms can occur from eating gluten. Along with all of the belly issues, I also get swollen, painful joints, mouth sores, brain fog, migraines, fatigue, depression, and many other symptoms. I wish it were as simple as a trip to the bathroom, but it is not.
4. Our food is not “gross.”
It may be different than what you are used to, but our food is actually very delicious! I don’t think I would have learned to cook had I not been diagnosed, and in general, I think I have a much healthier diet because of it. Most of our diet is made up of fresh, whole foods, which is better for everyone anyway!
5. We still like to be included in plans.
We may not be able to eat the same things or have to bring our own food, but it is worth it to be included and have fun with our friends and family. Please continue to invite and include us, and just let us do our own thing when it comes to food.
Though Celiac Disease is hard to manage and can be frustrating at times, I have made so many good friends through the struggle. On this National Celiac Awareness Day, I just hope that you learned something new, and if you have the energy, please send your fellow Celiac friends a nice note. Let them know you see them and care!
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