February 9, 2023

Filipino Guardian

Sentinels of Filipino Free Press

For years I lived in agony with undiagnosed celiac disease

As said to Nicole Audrey Spector

I’ve always had bad stomach pains – but this time it was even worse.

I was 16 or 17 and on a trip with my dance team. When we arrived at the hotel after a long bus ride, I collapsed on the bed, completely frozen from the pain in my stomach.

“Oh my god,” I thought. “I’m dying.”

Eventually, the hot, clenching spasms in my stomach got so bad that I decided to go to the emergency room. The doctor in the emergency room took x-rays of my stomach and found that I had a stool blockage. In other words, I was just really supported.

“No need to worry,” he said, sending me home with some strong laxatives.

“Great,” I thought. “I’m here to dance and now I’m going to spend all night in the bathroom.”

And I was right. I spent the whole night in the bathroom and not only on the toilet but also on the cold floor, writhing in pain. This was a burning, stabbing, spasmodic pain. In the worst case, I could hardly get up. I had explained all this to the doctor in the emergency room, but he seemed unconcerned. He just wanted to get me out of there.

But I trusted what this doctor told me, because after all he was a doctor.

I went on with my life and the whole time I suffered from excruciating stomach pains. I told myself I just had to persevere and I did. I’ve learned that you can adapt to anything – even if it kills you.

A few years later I married my amazing husband. My stomach pain was so bad that it weighed on him too. One night the pain was so severe it took me to the emergency room. He had to carry me in his arms because I couldn’t walk.

They took X-rays of my stomach and revealed… nothing. Everything looked really good. The doctor almost brushed me off and said it was probably just IBS. He made me feel like I was taking up his valuable time for no reason.

I was deeply frustrated. I knew something was wrong with me. But there were no explanations, and what was worse, there was no discernible pattern. The pain would just come out of nowhere, with no rhyme or reason.

About a year later, my mother was diagnosed with celiac disease, a condition that triggers an immune response in the small intestine when it comes into contact with gluten. Basically, your body treats gluten like a foreign object and attacks your small intestine. It can cause bloating, diarrhea, constipation, weight loss, abdominal pain, nausea, vomiting, and even anemia.

Celiac disease is a serious disease that can lead to many other conditions – such as hyposplenism, peripheral neuropathy and osteoporosis. And there is no cure. The only treatment is not to eat gluten.

It’s also hereditary. When I found out my mother had it, I immediately made an appointment with my doctor and told him about my mother’s diagnosis. It seemed pretty obvious that I needed to be tested for celiac disease, but my doctor disagreed.

“I promise you, you don’t have celiac disease,” he told me.

I insisted on the test and eventually he committed.

As I suspected, the test for celiac disease was positive.

Finally having an answer as to what was causing my horrific symptoms was such a blessing! But my diagnosis was also scary: How would I live a gluten-free life? That might sound dramatic, but consider that gluten is in so many foods we take for granted — from pasta, bread, and candy to malt vinegar, noodles, and even soy sauce.

But again, at least I had an answer. And better yet, I had the best accomplice: my mother. Together we have made it our goal not only to avoid gluten without exception, but to make everything we can only dream of gluten-free.

Chandice Probst and her mother, Tana Besendorfer, sign their cookbooks at a 2018 gluten-free fair.

Once Mom and I got going, we were unstoppable. Since then, we’ve invented so many delicious gluten-free versions of our favorite foods – including all holiday dishes and desserts. And I took it a step further by championing celiac disease and working to raise awareness about the disease. I even created a website dedicated to gluten free recipes and lifestyle tips.

What can I say? When life handed me lemons, I made gluten-free lemonade.

But living with celiac disease has not been without its challenges. The problems are mostly social in nature. Sometimes when I tell people I can’t eat gluten, they think I’m exaggerating or just riding on a health and wellness trend. In situations like this, I have to do everything I can to explain what celiac disease is and how bad gluten is for my body.

I don’t wish celiac disease on anyone, and I also want people who think they have it to urge their doctors to get tested. And I want others to know that this diagnosis isn’t the end of eating. Still, it’s natural to grieve over the things you can no longer eat. I still mourn the loss of my favorite brand of pizza and toffee sandwich cookies.

But pretty much anything else I could crave, I’ve learned to cook gluten-free. And I’m not the only one who enjoys my recipes – my guests who can eat gluten keep coming back to my gluten-free delicacies.

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