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Opinion: Using a life-changing diagnosis to help others [1]

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Date: 2024-05-29  

By Hunter Feinberg

When I was 8, I was diagnosed with celiac disease. Being diagnosed meant I could keep myself healthy, but figuring out what was wrong was not easy. It wasn’t like I immediately got sick anytime I ate a slice of pizza. The main clue was that I wasn’t growing the way I should have been so my parents took me to my doctor who diagnosed me with celiac disease.

Hunter Feinberg

I was only 8 and it was scary to go to the hospital for tests and hear the word “disease.” And celiac disease is serious. Some celiacs are prone to developing other health problems, like heart disease and some cancers.

But I was lucky. My doctors figured out what was going on early so even though I had to stop eating gluten, I was able to take steps to start improving my health.

While most people have probably heard of celiac disease, many don’t actually know what it is. It is an autoimmune disease that causes the body to attack gluten and, in the process, destroy parts of the intestines, making it harder for the body to get the nutrition it needs. (This is why I wasn’t growing!)

Gluten is found in wheat, barley and rye, so I can’t eat most breads, cereals, pastas or doughnuts. But a lot of foods are naturally gluten-free and many companies are making gluten-free versions of foods, including breads, pastas and even Oreos! Still, I’ve learned to read nutrition labels and can’t be afraid to speak up and ask questions, whether I’m at a restaurant or a friend’s house. I also pack my own snacks, so I always have something safe to eat.

It is important to keep up-to-date on research and resources, but many sites reminded me of how scared I was when I was first diagnosed. I wanted people to know they can live a normal life with celiac disease. I eat out, play sports, hang out with my friends, and travel with my family. I also wanted to provide resources that weren’t scary and give hope to people recently diagnosed.

During the pandemic, my family and I started a website called Gluten Revolution . It has gluten-free recipes, travel tips and links to resources by experts.

Our site may help you decide to talk to your doctor. Studies suggest that only 70% of people with celiac actually know they have it. Even people who have common symptoms – like digestive issues – often take years to figure out what’s going on.

If you do not have celiac, I hope my family’s website can help you understand what living with the disease means. I can get very sick if someone who doesn’t understand my disease serves me something that isn’t gluten free.

I’m 14 now, active, and back to a normal height for my age. I thought learning I had celiac disease was the worst thing to happen to me, but now that I can use my experiences to help people, there’s a silver lining.

Hunter Feinberg lives in El Paso.

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[1] Url: https://elpasomatters.org/2024/05/29/opinion-how-to-respond-to-celiac-diagnosis/

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