Celiac disease: Underdiagnosed, invisible, deadly

Autoimmune disease affecting 3 million Americans

The end of May brings the end of Celiac Awareness Month, a movement that is shedding light on a disease that hundreds of thousands of people have, yet don't know about. 

It may seem trendy to switch to a gluten-free diet, but for millions across the country, cutting out gluten can literally save their lives.

 
 

 

Jeanna Foy has been teaching English at East Bakersfield High School for 12 years.

 

Jeanna Foy

 

 

She spent many of those years battling vague, debilitating symptoms. Her pain and discomfort was not always obvious. 

 

Overtime, Foy just got used to her constant stomach pain, not thinking what she was experiencing was worth seeing a doctor for. She kept her pain to herself, thinking people wouldn't believe her. 

 

“So I just suffered in silence, which I think, maybe a lot of people do."

- Jeanna Foy

 

Foy also suffered from extreme fatigue, a feeling she describes as her bones being on fire. Finally, she saw a doctor when her hair started falling out. After a decade of pain, she finally got an answer.

 

Foy was diagnosed with celiac disease – an autoimmune disease that causes small intestinal damage when gluten is consumed.

 

Gluten is a protein found in wheat, barley and rye. When it’s ingested, an immune reaction occurs. The small intestine is attacked and damaged which affects the absorption of food.

 

The only treatment for celiac disease: a lifelong gluten-free diet.

 

This means people have to avoid common foods they may have been eating their entire lives. Pasta, pizza, beer, cereal, bread – gone.

 

Doctor Marvin Ament with Valley Children’s Hospital in Bakersfield looks for symptoms of the disease in every patient he sees.

 

Dr. Marvin Ament

 

A pediatric gastroenterologist for more than 40 years, he sees the traditional symptoms like stomach pain and fatigue, but also non traditional ones like migraines and failure to thrive in children. He sees at least 2 or 3 new cases of celiac per month in Bakersfield. 

 

Celiac can present itself at any point in people’s lives. It's also different from other diseases in that food is medicine.

 

Foy who was diagnosed four years ago in her early 50s, can recall having symptoms of celiac even as a child. It wasn’t until she finally started feeling better on a gluten-free diet, when she realized how much she was suffering.

 

Foy’s case isn’t unusual. Of the one percent of Americans who have celiac, around 80 percent of them don’t know they have the disease, or they’re misdiagnosed.

 

“Irritable bowel syndrome, osteoporosis, iron deficiency anemia: They’re three very common conditions of which a certain percentage of those individuals who have them actually have the disease,” Doctor Peter Green, Director of the Celiac Disease Center at Columbia School of Medicine.

 

Dr. Peter Green

 

 

Despite these numbers, Dr. Green says there’s an overall increase in awareness of the disease, due to an increase in those diagnosed with celiac and those eating a gluten-free diet. He says the increase is probably related. 

 

Dr. Green says part of this may be due to the trendiness of the diet with people avoiding gluten to try to lose weight, which he attributes to the medical legitimacy of the diet.

“Because for people with celiac disease, it saves their lives." - Dr. Peter Green

But for people like Foy, the diet is far from trendy, but rather burdensome.

 

“You just can’t be spontaneous at all, and that makes me really sad,” Foy said. “That you always have to be prepared, you always have to have food with you.”

 

Foy says in a way, she’s thankful food is her treatment and that she doesn’t have to take medication for her celiac.

 

But gluten is found in countless food items, and it doesn’t stop there. It’s also found in cosmetics, skin and hair products, and pet food.

 

A small bit of gluten, or even contact with an item containing gluten, called cross-contamination, can cause small intestinal damage in celiac patients. Untreated celiac disease can cause complications including infertility, lymphoma, or even death. 

 

“I wish people would realize how serious it is and that a little bit does hurt, just a teeny bit can hurt." - Jeanna Foy

 

There are more than 300 symptoms of celiac disease, including stomach pain, migraines, fatigue, bloating, constipation, diarrhea, and failure to thrive in children. Because it's genetic, people who have family members that have the disease have about a 10-percent chance of having celiac, too. 

 

Foy says her life hasn’t been the same since her diagnosis, although it’s gotten a lot better. She's thankful she isn’t in constant mysterious pain.

 

 

 

“I don’t focus on food,” Foy said. “As far as enjoying it quite as much as I used to, I look at it more as something I have to do.”

 

The diet has since become a way of life for Foy. She’s able to eat out at her favorite spots like California Pizza Kitchen and Subway, almost always without issue. She now focuses on what she can eat and not what she can’t - which are fruits, vegetables, meat, and seafood.

 

Gluten-free labels make grocery shopping easier. 

 

Researchers at Columbia University are working on improving the quality of life for people with celiac disease, like determining how strict people should be with their diet and potentially developing therapies to help them.

 

"It’s increasingly difficult to be on a gluten-free diet," Dr. Green said.