MuskanThe Voices of Celiac Disease

“I can’t even remember when I started feeling sick because I was just always sick from the time I can remember.”

A headshot of Muskan

Describe your life prior to diagnosis:

I was always sick and used to take medicine every day. I didn’t know what it was like to be healthy or fit. Sometimes it was pain or weakness and sometimes it was other problems like allergies. That life was a horrible mess that I never wanted to continue living.

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

Once I got sick, like really very sick. I wasn’t able to eat or drink anything for days and months. I was bedridden and unable to get up by myself. Then we saw many doctors and one of them had me do a blood test. When the results came back, he told me to go gluten-free.

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 was told that it was probably more than 10–15 years. I don’t even remember when I started feeling sick because I was just always sick from the time I can remember.

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

More awareness of celiac disease, proper knowledge about the condition, and better availability of the tests.

Describe your experience with living with celiac disease:

It’s been a mixture of good and bad. The place where I live is almost fully dependent on wheat—it’s a must-have here, so it’s hard because there isn’t any gluten-free food available. The needs for people with celiac disease are practically unknown; even my family sometimes breaks my heart.

I am still underweight and can’t eat properly. It’s scary, but the good thing is that I am getting a bit better than before. Maybe I will get better slowly.

Is there anything else you’d like to add to your story?

It’s a horrific experience for someone to get a diagnosis and not know what is right or wrong. There hasn’t been much awareness and information available around me. All I did and all I can do is use Google to find out what I should do. It’s really bad, but slowly people are beginning to understand. I hope I can help this cause.