AyshaThe Voices of Celiac Disease

“I was exhausted and had to be rushed to the ER due to dehydration and an inability to eat or drink anything.”

Pita and a bowl of hummus on a table.

Describe your life prior to diagnosis:

I had a normal life; I spent time eating out with friends and family without fear or anxiety, doing fun activities without restrictions, going to gatherings and trying different dishes.

How did you come to know (or suspect) that you have celiac disease?

It was the surgery that started it all—December 20th, 2020 was the day everything started going downhill.

I had surgery to remove an infected tooth and clean a pus-filled ulcer. It was successful, and I followed their post-op instructions and took the antibiotics I was prescribed. However, one day, I woke up to really severe nausea and I didn’t know what triggered it. I contacted my doctor and he prescribed another antibiotic thinking it was the root of my nausea. That was not the case; even after taking the new medication the symptoms still persisted.

At this point, I was exhausted and had to be rushed to the ER due to dehydration and an inability to eat or drink anything.

I tried visiting different doctors for different opinions, but none of the tests indicated the reason for my nausea. After an agonizing three month journey full of nausea, fatigue, weight loss and brain fog, I finally found the reason; my doctor said, “it’s celiac!” after getting my antibody results in February of 2021.

At that point I did not know what was in store for me. I didn’t know what “celiac” was. All I remember was looking at my mother’s dejected face and asking her, “Mom, what’s wrong?” She knew what I would have to go through, but still thanked God that we discovered the cause early on.

How long did it take for you to get diagnosed since your first symptoms and what (if any) challenges did you face along the way?

I had ongoing persistent symptoms for 2–3 months before diagnosis. The challenge was that my symptoms made it hard for me to do tasks throughout the day—nausea was the main symptom that stopped me from living in comfort.

Do you believe anything could have sped up your diagnosis? If so, please explain:

No.

Describe your experience with living with celiac disease:

Celiac disease has led to a drastic change in my lifestyle, from eating out to going to gatherings. Living with celiac disease has been dreadful the last year and a half and still is. I haven’t been able to have a healthy diet, my symptoms persist, and the feeling of being restricted by this diet is always a problem.

I do my best to try different dishes and to stop eliminating foods every time I have a reaction. However, it’s hard. It’s still the beginning of my journey and I still have a lot going on, which is why I will try my hardest to lead a healthy life with celiac disease and my body.