I Am a Celiac Newbie

I was diagnosed with celiac disease at age thirty-eight, last year in October.

I shouldn’t have been surprised. I mean, my mom has the disease. My brother too. I have a couple of cousins who have it as well. It runs in the family.

Yet, there I was, hearing the doctor tell me over the phone that October day in 2020, that the blood test came back positive. Positive. And I felt shock and disappointment, and a tiny bit of resentment.

It wasn’t supposed to happen to me. I had been told that this disease skipped generations. False! It’s a genetic disease and it can be passed from parent to child. It doesn’t automatically skip generations.

I didn’t have the normal symptoms. Hello! That didn’t matter. Celiac disease doesn’t need to have the “normal” symptoms: stomach cramps, diarrhea, nausea. It can still be celiac disease. I often felt constipated and bloated. I didn’t know that these were also symptoms and that my body was trying to tell me something was wrong.

For years I had been telling myself that I was gluten-sensitive, that because of genetics my body didn’t really handle breads and pastas that well, but that it was still okay to indulge every now and again. It was okay to feel bloated. It was okay to feel constipated. It was okay to feel gassy and gross after eating gluten-filled meals because that was my “normal.” I didn’t want to be labeled as having celiac disease because it felt too restrictive. I like cake. I like cookies. I like bread. And breadsticks. I like eating foods with gluten. They are delicious. I didn’t want to face the fact that gluten was harming my body.

But it was. The biopsy showed that.

I did the biopsy to confirm the results. I guess my doctor wanted to make sure the lab work didn’t make any errors. My results were high and if by chance they had made an error, it would be a pretty awful mistake.

Fortunately for the lab, the results were correct.

The surgeon who did the endoscopy looked me in the eye and said, “You have celiac disease.” My small intestine was not normal. It looked smooth when it should have looked wavy or bumpy. Where were the villi? They appeared not to be there. It was clear my body was having problems.

Mentally, I struggled (I still struggle sometimes). If my symptoms had been “normal,” I could have taken care of this problem years ago, and by taken care of, I mean adjusted to a gluten-free lifestyle. I wouldn’t feel like I’m giving up a lot of things—foods I like to eat, restaurants I like to go to, even some drinks. I wouldn’t feel judged by people. From “How could you not know?” to “How strict are you going to be?”—people making assumptions about me from the food that I’m eating hits a sore point with me. I’ve struggled with my weight for most of my life, and now this disease has opened up a sore spot that I thought I had a handle on. It’s frustrating. It’s scary. It’s maddening. I want to blame someone. Anyone. But that’s not the kind of person I want to be.

I am a celiac newbie. Even though this disease has been in my family for years, for me personally, it is new. I am experiencing it for myself right now. Previously I have watched it from afar. I watched my mom and how she has reacted living with it. I watched my brother and how he lived with it. Now it is my time to cope with it. I hope for the best experience. The world has changed since my mom’s diagnosis over forty years ago. Likewise with my brother with his diagnosis about fifteen years ago.

At least now, they have gluten-free Oreos. And that is something I can be grateful for.