Edie's Story
Edie Helmich's story isn’t unlike the stories of many patients who come to BIDMC’s Celiac Center. Edie, who lives in San Antonio, TX, was in and out of the hospital for months with seemingly bizarre symptoms and many different diagnoses. Finally, her doctors told her she had celiac disease.
“I had dozens of tests—you can’t even imagine,” said Edie. “My whole life— including my social life—was destroyed.”
Edie followed her doctor’s orders, sticking to a strict gluten-free diet and taking her prescribed medications. She threw out all of her cookware, and her husband even went gluten-free to prevent cross-contamination. But her symptoms didn’t go away. Edie went from a healthy 130 pounds down to 89 pounds, and eventually, her doctors put her on TPN (intravenous feeding).
“My health was so fragile; I had to do something or I was going to die,” said Edie. She talked with her doctor about her fears, and he said he was worried, too. Although her medical team in San Antonio was doing everything they knew how to do, it wasn’t working. So Edie got a list of the top celiac centers in the U.S., talked with her doctors, and chose BIDMC.
Since starting her treatment at BIDMC’s Celiac Center, Edie’s health has improved dramatically. Her doctor, Ciaran Kelly, M.D., prescribed a drug called Pentasa for Edie, which she takes in addition to following a gluten-free diet. She has gained back 20 pounds and now has none of the typical symptoms of the disease, like vomiting or diarrhea, that she suffered from for so long.
“I am so grateful I took the time to come to Beth Israel Deaconess’s Celiac Center. The long trip was a small price to pay for getting my life back,” said Edie. “I think I would have died if someone hadn’t found some way to help me, and now I’m going to be fine.”
The Celiac Center’s multidisciplinary approach to care was very effective for Edie, and her consultation with BIDMC’s dietitians was particularly helpful. Edie believes the physicians’ willingness to stay in touch and consult with her physicians at home in Texas has been the most outstanding aspect of her care.
“It’s one thing to go across the country to get the diagnosis and treatment plan, but you need to have that continued interaction,” Edie said. “I have wonderful doctors at home who just don’t have the experience with refractory celiac disease that Dr. Kelly and his team have. The doctors at BIDMC are more knowledgeable about unusual forms of the disease, and they’re willing to work cooperatively with my doctors at home. That has made all the difference in my health."
Edie said the doctors at BIDMC's Celiac Center provided answers and relief when there appeared to be none available.
“This disease affected not only my physical health but also my family and the quality of my life—everything,” said Edie. “The relief was: I’m not going to die—I’m going to live. My health has been transformed since my consultation at the Celiac Center at BIDMC.”