May is the launch of Seriously, Celiac Disease, a campaign that stresses the importance of getting tested for celiac disease and having conversations with family members about this hereditary condition. We talked with Jillian Lagasse, Celiac Disease Awareness Hero and daughter of celebrity chef Emeril Lagasse, about her experience and why getting educated about celiac is so important.
Lagasse was ill for most of her life. But no one could figure out what was wrong. There was only misdiagnosis after misdiagnosis. One doctor even advised that she could be allergic to bananas and carrots.
After moving to London, the first doctor she saw suspected celiac disease within her first meeting with him. Blood tests confirmed the diagnosis, and it all clicked. “I never thought what I was eating was what was essentially kind of killing me,” Lagasse says. "When you have digestive issues, a lot of times what you reach for is a piece of toast or saltines. My whole life, that’s what I was doing, and I was just hurting my body more and more."
Within the two weeks following, her energy was back, the digestive issues went away, her rashes disappeared and her hair grew back. “It was, for me, a game changer,” she says. “It really saved my health and my life.”
She looked to the National Foundation for Celiac Awareness as a fountain of information to answer questions like What exactly is celiac? How do I handle it? What can I eat?
It's a resource that encouraged Lagasse to talk with her family. Alice Bast, founder of the NFCA, explained that celiac disease is a serious genetic autoimmune disease, meaning it's hereditary and comes from someone in the family.
Lagasse's goal this year is to have conversations with the NFCA's Talk, Tell, Test approach with each of her family members—moreso on her mom’s side because Emeril has already been tested. “He was like, it’s probably not me,” she laughs. “That would have been a real problem for him.”
All the women on her mom’s side have had digestive issues and various symptoms. But the conversation would mean a drastic change. “My mom’s family is Portuguese,” she says. “[In their family,] you only go to the doctor if you’re bleeding from your limbs or like that Monty Python skit where your blood is just shooting out.”
Lagasse wants to change the mind-set around health.
There’s a stubbornness of “Well, I don’t think I have it. I just think I have stomachaches every now and then.” But with this NFCA approach, she feels empowered to talk with others about their overall health and future.
Lagasse talks about how much easier it is to eat with celiac disease now, mentioning that even frozen pizza comes in a gluten-free variety. With the influx of conversations around gluten these days, she's glad that people know what gluten even is, but it’s also difficult, when you can turn on the television and hear jokes about eating gluten-free.
“I do think it has that stigma that it’s just a diet,” she says. “But the reality is that it is the only cure for a very serious illness." There’s still a lot of work that Lagasse feels needs to be done to define the lines between what people know as living gluten-free by choice and having celiac disease.
Find out more here, and join the discussion.