#BecauseGluten: Me? Celiac? Impossible!

For this CL editor, the first stage of celiac disease was denial.


Editor's note: #BecauseGluten is a new semi-regular column chronicling CL A&E Editor Cathy Salustri's journey into an involuntary gluten-free lifestyle. She's taking her recent celiac diagnosis kinda hard.

I stared at the phone message, hoping my iPhone had transcribed it wrong:

"This is Kristin from Center for Digestive Care. We have your EGD and lab results back and they are suggestive of celiac disease. Can you call me back?"

Suggestive of celiac.

Suggestive.

I called Kristin back and explained to her that I did not have celiac.

"It's a trendy disease," I told her as I pulled into the Fairway Pizza parking lot.

"That it is," she agreed. "Nevertheless, you actually have it."

"It's incredibly rare," I said. "And I don't get sick when I eat gluten."

"So, there are two tests we have to do for a positive diagnosis of celiac," she continued, "a blood test and a biopsy. We did them both, and both of them suggest you have celiac."

"Suggest? OK, so what else could it be?"

"Celiac."

I made a follow-up appointment, thanked her and hung up the phone. I walked into the pizzeria and ordered eggplant Parm with spaghetti and garlic bread. Screw celiac.

I hate the whole gluten-free fad that's sweeping the nation. People swear off gluten like it's crack, but most of the people I've met who do this don't really understand what gluten is — and, consequently, what gluten-free means. They're avoiding it to lose weight or because it's healthier (which doesn't work when you sub in gluten-free processed foods loaded with sugar and fake things) or because they don't feel well and read about gluten on their friend's Facebook page.

I hate it. All my friends know I do; for years I've joked I was allergic to gluten-free food.

When I took the job with CL last year, I found myself with excellent health insurance and a wonderful doctor. Dr. Ligia Perez took one look at my bloodwork and ordered a bone scan and a hematologist. A few weeks later I learned that at 43, I had anemia so severe she told me to stop working out until we could get it under control.

My hematologist said he'd never seen iron levels so low and ordered iron infusions. He also gave me a shot called Prolia, which would help halt the osteoporosis but could cause my jawbone to become necrotic. He then referred me to a gastroenterologist to figure out where my iron was going — I suspected ulcers — and I found myself staring at the incredibly gorgeous Dr. Patil, who had to be a good 10 years younger than me and said I needed a colonoscopy.

Middle age was looking just ducky.

"Why, exactly?" I asked.

"It's possible you have celiac," Dr. Gorgeous told me. I politely replied that I did not have the "disease of the day."

"It is incredibly rare, but given your symptoms" — anemia and osteoporosis combined with what my family calls "The Salustri Stomach" (when we get stressed, we become physically ill) — "you have a one in five chance of having it."

Although I disagreed, the medical community seemed rather concerned as to why my body had almost no iron and also why my bones had started to disintegrate at a (relatively) young age. I couldn't argue that I could barely get out of bed some days, and I did want to feel better, so I agreed to an endoscopy and a colonoscopy. Once they found the ulcers I had diagnosed myself with, I could get back on track.

I'm not going to go into the horrors of the colonoscopy except to say, there's something not right about looking at an extremely good-looking man and knowing that, in a few minutes, he's going to be more intimate with your bowels than any human being has a right to be.

A few days later, the phone call from Kristin. That night, Barry and I went to PJ's for some oysters and contemplated what celiac meant. I declared I would only tell my family — if you have celiac, your family members may have it as well — and a few close friends. Our favorite waiter, Enoch (we go to PJ's a lot), came over to see how we were doing and noticed I'd ordered Redbridge, a gluten-free beer that tastes like kittens dying.

"Oh, hey, are you gluten-free?" he asked.

"Me? Hell, no. That's such a bullshit thing!" I said. And when our server came over, I ordered a Bud Light Lime. "See? No gluten-free here."

"Yeah, it has gotten crazy. People do it because it's popular," he laughed and went back to his tables.

"See?" I told Barry. "This is what it means. I can't tell people. They'll think I'm an asshole capitalizing on a trend. I know, because I am that person."

I finished the Bud Light Lime — gluten and all. To make my point, I grabbed a packet of crackers off the table and ate them, too.

Karma, man. She's a gluten-y bitch.

Next up: Anger.

About The Author

Cathy Salustri

Cathy's portfolio includes pieces for Visit Florida, USA Today and regional and local press. In 2016, UPF published Backroads of Paradise, her travel narrative about retracing the WPA-era Florida driving tours that was featured in The New York Times. Cathy speaks about Florida history for the Osher Lifelong Learning...
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