As Emmett is a minor, his story is told by his mother, Anna.
Describe your child’s life prior to diagnosis.
Emmett was diagnosed with type 1 diabetes (T1D) at 19 months and celiac disease at 2.5 years old! Emmett has not really known a life without these two autoimmune diseases. As he grows older, he is much more aware of why he has to avoid gluten and how his body is still strong and amazing without it!
How did you find out that your child had celiac disease? Did you suspect it beforehand?
I suspected he had it when I found out he was losing weight, had an upset tummy and a LOT of bloat for a two-year-old! I thought it was his body adjusting to T1D, but I quickly found out that celiac disease is often paired with T1D! Oddly the two autoimmune diseases like to work together!
How long did it take for your child to get diagnosed since their first symptoms and what (if any) challenges did you face along the way?
It took us about six months for our pediatrician to take us seriously. They had already missed the T1D diagnosis ( that’s a whole story in itself), so when I came to them again with another question, they dismissed it as toddler diarrhea and didn’t do any testing. He was dismissed yet again because of his age. I decided to seek a second opinion and the minute the pediatric GI walked in our room, he knew.
Do you believe anything could have sped up the diagnosis? If so, please explain:
Our pediatrician doing more testing and knowing the signs for celiac disease.
Describe your experience living with celiac disease:
Our 5+ years of living with celiac disease has altered our family tremendously. We help our son feel included everywhere we go. As he grows older, that becomes harder as he is more involved and noticing the food he can and can’t have! We do our best to bring a dessert or meal every time and never expect anyone to cater to him, but we sure do love birthdays that are inclusive where he’s made to feel normal!
What would a cure mean for you?
A cure would mean that our eight-year-old could live a life without the worry of monitoring every bite that goes in his mouth. He would have freedom to travel the world and be safe without worry of cross-contact whenever he eats!
Is there anything else you’d like to add to your story?
Celiac disease is an autoimmune disease that people do not choose to have. It is not a lifestyle change, it’s serious and should be taken that way!
