Family Flees Ukraine to Get Medical Care for Celiac Son

celiac disease ukraine igIt’s the emergency that celiacs worry about. In times of crisis, will we be able to access the gluten-free food we need?

  • Jessica Brown, WCVB, Boston News Leader 1

Gluten-Free Emergency Preparedness Options by Total Prepare

The mother of a young child in war-torn Ukraine reaches out for help with a diagnosis for his stomach pain.  He is now improving after getting life-changing medical treatment in Boston. Kateryna Kozin can finally relax. It’s a big change from just a few months ago.

When Russian troops attacked Ukraine last spring, the young family was living in an apartment building near the capital Kiev.

  • “In one moment, our world was destroyed around us,” Kozin said.

Some days, she would have to take cover with Daniel in the basement. It was cold and dark — no place for a young child. Kozin also worried that her son was getting sick.

  • “This period was very difficult because we have a war and we have a problem with his health,” she said. Daniel seemed to be in pain whenever he ate. “He was very slim with a very big stomach,” Kozin said. “And he cried all the time.”

Daniel’s symptoms pointed to celiac disease, a serious genetic condition with a simple treatment that requires patients to avoid eating gluten. The protein is found in any product containing wheat, barley and rye. But in the war zone, Kozin found few gluten-free options available.

  • “In our stores and supermarkets, it’s very difficult,” she said. “He was eating a simple food like potatoes because potatoes are without gluten.”

Kozin also struggled to find a pediatrician who could examine Daniel.

  • “In this situation, it’s very difficult to speak face-to-face,” she said. “It’s only, maybe, by phone.”

Kozin reached out online, looking for help. She said she never expected to find it in the United States.

  • “It’s amazing because you’re speaking with people who’ve never seen you before,” she said. “It’s another part of the world — between oceans! It’s amazing.”

The National Celiac Association in Needham offered to coordinate care for Daniel at the Center for Celiac Research and Treatment at Mass General for Children. Dr. Alessio Fasano is the director.

  • “I think this was the best-case scenario,” said Dr. Alessio Fasano, the center’s director. “And the community came together.”

Celiac disease is common. The National Institutes of Health estimates it affects about 1 percent of the population worldwide. Until researchers identified gluten as the cause, Fasano said celiac disease had a mortality rate of 30 to 35 percent. But now that Kozin can change Daniel’s diet, his digestive problems are improving and he’s starting to gain weight.

  • “He’s going to do all right,” Fasano said.

Instead of worrying, Kozin and Daniel are now playing — and feeling better. Their host in a Boston suburb has already seen a change.

  • “Things that we would consider very basic here just weren’t available there,” said Courtenay Cabot Venton. “That she can get him the help he needs to be healthy is just huge.”

The National Celiac Association is raising money to support Daniel and his family. To donate, click here.