JocelynThe Voices of Celiac Disease

“I had asked about doing a test for celiac disease however was told, “It isn’t prevalent in people of color.” I decided to find a doctor with the cultural competency to understand that race does not define your health.”

What was life like prior to your diagnosis of celiac disease?

Prior to my diagnosis, I was feeling constant bloat, headaches, general GI discomfort after each meal I struggled with severe constipation and diarrhea. The constipation and pain were so severe it impacted my quality of life.

How did you come to suspect that you have celiac disease or non-celiac gluten sensitivity?

I began testing a gluten-free and Low Fodmap diet on my own. I wanted to see if maybe my diet could help resolve the discomfort.

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

It took five LONG years. I had seen many GI doctors who brushed my symptoms off as poor diet, although I am a strict vegetarian and do not really eat much dairy. I was told by several doctors to take fiber and drink more water. One doctor even told me to take Colace daily, until the symptoms resolved themselves. Another told me that the stress of having three kids and a job where I traveled often was leading to my constipation. I had asked about doing a test for celiac disease however was told, “It isn’t prevalent in people of color.”

I decided to find a doctor with the cultural competency to understand that race does not define your health. I found a female Hispanic doctor and had a very open conversation where I explained that I wanted her to test for celiac disease and Crohn’s disease. It was the first set of tests she did.

Do you believe anything could have sped up your diagnosis? 

Culturally competent doctors who listened to me would have sped up the diagnosis. I was ignored for so long. The four doctors I saw prior to my current GI doctor never even ran blood tests, I was ignored and suffered for no reason.

Describe your experience with living with celiac disease:

My diagnosis is still fairly new and I am starting to feel more confident in my journey. I am a Wife and Mom of 3 teenagers, so the first few weeks were difficult as we figured out how to coexists in a gluten and gluten-free household. However, they are wonderful and supportive. They help me read labels and use apps to check ingredients. The support helps tremendously. I have learned the importance of meal planning ahead of time, packing snacks and have gotten past the stigma I felt at the beginning.

It had made me more confident and resourceful when creating meals the whole family can enjoy.