Living With Celiac Disease

Living With Celiac Disease

Lisa Patrick

The Ashland Beacon

Celiac disease is an autoimmune disease triggered by eating gluten. It is considered by most to be a rare disease, but it actually affects 1 in 100 people. Most don’t even know that they have celiac disease because it has over 200 symptoms, which are not all gut-related. Some people have no symptoms at all, or, like me, they think they don’t. May is Celiac Disease Awareness Month, so let’s shed some light on this disease that affects almost every aspect of a person’s life.

Celiac disease is one of the only autoimmune diseases that has a definite, identifiable trigger—gluten. Left untreated, celiac disease can cause malnutrition, osteopenia/osteoporosis, severe iron-deficiency anemia, infertility, and an increased risk of specific types of cancer.

The most common symptoms of celiac disease are chronic digestive issues like bloating, diarrhea or constipation, and abdominal pain. I didn’t have any of these symptoms. On October 21, 2024, I went in for a routine endoscopy and colonoscopy. I simply wanted to start getting routine endoscopies because both my father and grandfather passed away from esophageal cancer. When the doctor came back and said that she had seen signs of celiac disease and wanted to do a blood test to confirm it, I was floored.

The diagnosis was so unexpected that I immediately thought it had to be a mistake. I spent the next week shoveling in all the gluten I could in denial. I did go get the blood test. It confirmed celiac disease, and so did the biopsy of my small intestine. It was all true, and I was going to have to figure out how to completely change my life. Luckily, I knew some people who also had celiac disease, and I was able to ask them questions. I did not have to start out alone.

I was diagnosed with what was known as “silent celiac” because I had no symptoms. However, as I learned more, I realized that wasn’t quite true. I had several of the more unusual symptoms—migraines, depression, anxiety, breast soreness, and tremors. The depression, anxiety, and tremors will be with me for the rest of my life, and I will always have to take medication for them.

Switching to a totally gluten-free diet is not as easy as it sounds. I thought, okay, so I have to give up regular bread and regular pasta. It was more than that. I had to stop eating anything that contained wheat, barley, spelt, rye, farro, kamut, or semolina. I also had to become an “expert” at reading labels because gluten likes to hide behind other names, like modified food starch, natural flavors, malt, and artificial flavors. I almost melted down over soy sauce but managed to hold it together.

I also thought I would have to completely give up my baking hobby. Then I found a gluten-free flour that works with my recipes, and my family doesn’t even notice the difference. I still cook separately and carefully watch what I do. I have to use one pan and utensil for their food and completely separate ones for mine. If I touch their food, I have to wash my hands before touching mine again. I also have separate containers for things like butter, peanut butter, and jelly, plus my own toaster so crumbs from regular toast don’t get on my gluten-free bread.

Cross-contamination is such a pitfall that eating out became an adventure. No more fast food, with the exception of Chick-fil-A. Eating at a sit-down restaurant is a little easier, but I still have to ask questions. Is there a dedicated fryer for fries, or is everything cooked together in the same one? Is the gluten-free pasta cooked in separate water from the regular pasta? I also have to ask the cooks to change their gloves before preparing my food because cross-contamination can occur from something as simple as touching a regular bun and then touching my meal. Mostly, I cook at home because it’s safer.

I consider myself lucky to have been diagnosed now instead of 40 years ago. There are so many gluten-free items available today that taste just like, or at least very similar to, their regular counterparts. There are also two completely gluten-free bakeries within driving distance of my home—one here in Ashland on Route 5 and one in Portsmouth that delivers baked goods to a local cafeteria.

Although I don’t have “traditional” symptoms from accidentally ingesting gluten, I still experience damage to my small intestine, which can lead to other illnesses. There is no cure for celiac disease. The only treatment right now is a very strict gluten-free diet that I will follow for the rest of my life.