Describe your life prior to diagnosis.
I thought I had acid reflux because of my gastrointestinal symptoms.
How long did it take for you to get diagnosed since your first symptoms? Is there anything that could have led to you being diagnosed sooner?
When I described my symptoms to my mom, she recommended that I see a GI specialist. After running tests, I discovered I had giardia as well as celiac disease (stage 3b). I’m asymptomatic, but I guess my gut was so damaged that my inability to clear the giardia is what led to me seeking appropriate medical care.
Even after I was diagnosed, my doctor didn’t take the time to educate me on what foods contain gluten. When I told my mom this, she referred me to a different clinic that gave me nutrition counseling. The standard of care for a celiac diagnosis is generally low unless the healthcare system specializes in that condition.
I tried to get referred to a GI specialist by my primary care physician a few months prior, but there was an issue with my insurance at the time where I was getting billed $200 for what would otherwise be $30 and the healthcare entity (Mount Sinai) was too understaffed during the COVID-19 lockdown to address this issue, so I just became disengaged from care.
Describe your experience living with celiac disease.
I’m asymptomatic, so I don’t experience much when I ingest gluten, but I know it’s causing me damage, so I still take precautions.
What would a cure mean for you?
A cure would help me feel safer about my health and survival. Undiagnosed celiac disease can be fatal in the long term.
There needs to be more awareness of celiac disease within the Chinese community. So many of our cultural foods become inaccessible to us due to soy sauce having wheat.