My Love of Food Has Caused Me Heartache — and Heartburn

Amy Gietzen avatar

by Amy Gietzen |

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Eating is a sacred ritual in my life. I live for the aroma of freshly baked rosemary bread or the first bite of homemade chocolate chip cookies. Between the salty dough and the semisweet chocolate, the flavors are almost indescribable.

I am also passionate about trying new foods.

But eating can also come with challenges, and sometimes the prize just isn’t worth the pain for me.

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Foodie at heart

I used to be able to shove whichever food I wanted into my mouth. Nothing was off-limits — until I was diagnosed with gastroesophageal reflux disease (GERD).

It all started with an open-faced steak supreme sub.

Two years after I was diagnosed with scleroderma, I visited family in Philadelphia. Anyone who’s familiar with Philly knows that a trip must include cheesesteaks and soft pretzels with mustard, which are more important to me than even historical monuments. I headed directly to the nearest restaurant and made my rounds.

I savored every minute of that salty soft pretzel with the zing of spicy mustard, and that juicy steak hoagie with hot peppers and mozzarella. Heaven must have these items on the menu 24/7. But just after finishing the best meal of my life, I quickly realized I would regret it.

Reality check

I was hit with a burning and very unsettling feeling, like a hot steel beam pressing into my chest. Still, I wasn’t about to let it ruin my day or my craving for homemade Italian ice.

It didn’t take long for the pressure and the burning sensation to return, along with an acidic taste in my mouth and nose. My throat felt like I had swallowed a lump of hot coal! What was happening to my body? I knew I needed to have the issue looked at soon.

After my trip, I made an appointment with an ear, nose, and throat specialist, who examined me and immediately diagnosed with me severe GERD, a painful condition often associated with scleroderma. He told me that if I didn’t start taking medication and weeding out acidic foods from my diet, including those with caffeine, I could inflict serious damage to my esophagus, such as perforating its lining.

Holes in my esophagus sounded like a party I didn’t want to attend. I left the doctor’s office with a sinking feeling in my gut.

To eat or not to eat

This wasn’t the first time scleroderma had forced me to change my habits. My body tends to act on its own. Making decisions about my body and my lifestyle is important to me, but my disease takes away many of those choices.

At the time, I needed more health issues like I needed a hole in my esophagus, but I couldn’t fathom giving up my passion for food. I craved the ability to eat whatever I wanted, and my new limitations left me feeling frustrated and out of control. I needed to find a path forward with GERD.

Finding a way to enjoy food

Initially, I wasn’t ready to commit 100% to giving up the foods I need to, so I paced myself at a rate that worked for me. Others may prefer to make such a change all at once.

I navigated dietary changes with trial and error. I experimented with different foods and discovered what I needed to give up, what I could eat without any issues, and what I could only eat on special occasions.

In the end, I regained control by learning which foods and eating habits work best for my body. During the process, I realized that my desire to have a choice in what I eat outweighs my desire to eat a variety of foods. I take my medication religiously and haven’t had any new digestive issues.

Even with GERD, I’m still passionate about eating. Like a delicious wine, my willpower has improved with time. I am in control of my choices, and it feels and tastes great!


Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to scleroderma.

Comments

Ross Aiuto AIUTO avatar

Ross Aiuto AIUTO

My daughter was diagnosed with the same at the age of 18 with sclerderma....and has progressed quickly ever since,,, she is now 26...God bless you and all you do...Ross Aiuto

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Amy Gietzen avatar

Amy Gietzen

Awe thank you!

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Deborah Williams avatar

Deborah Williams

I was diagnosed 7 years ago at 65. Nothing really changed until 3 yrs ago. Barretts esophagus, precancerous polyps in colon, and lesions in my stomach. November 2020 my skin became rashes, lesions, sores, then dried up, itched and is multi-colored. June 2021 ended up having 'watermelon stomach' and had been bleeding for some time. Overnight my diet changed to almost nothing. No red meat, pork, no spices, no chips. On prescription stomach pills 2x a day. I ended doing the same with my diet. Experimented and found what I could safely eat. Once a month I have steak but only a small amount. Decaf coffee limited to 2 cups. I did make chili, but was careful with the spice. . . I admire you for all that you do. It really is one day at a time. . . Debbie W.

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Amy Gietzen avatar

Amy Gietzen

Thank you so much, Deborah! I am sorry you have had such a rough go of it too. Thank you for all of you kind words and for sharing a piece of your journey with me!

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Ilene Wax avatar

Ilene Wax

Love this Amy!
Today while it is snowing heavily, I needed a chocolate fix. I am making brownies with gf flour, applesauce instead of eggs, grApeseed oil instead of butter and of course cocoa powder!

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Amy Gietzen avatar

Amy Gietzen

Ilene, you are making me want to eat chocolate! Thank you for always being a soothing ear to chat with and for listening to all of my sclero- drama! I love you!

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