'Eating just made me sicker': Why celiac disease is such a frustrating diagnosis

While receiving a celiac disease diagnosis is a relief to many, living a gluten-free life remains challenging.
by Meghan Holohan / / Source: TODAY
No bread, thanks: gluten-free concept
The only treatment for celiac disease is a gluten-free diet.Getty Images stock

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After giving birth to her son in April 2017, Rachel Carlson was confused — she was still nauseated. The queasy feeling she had during her pregnancy wasn't going away.

“I thought it had to do with post-birth healing. It was painful and upsetting,” Carlson, 36, of Pittsburgh, told TODAY.

Months later, Carlson still felt sick. Her obstetrician tested her liver and gall bladder function. They looked healthy, but a blood test revealed she was anemic. Carlson started taking iron, yet her symptoms still didn’t subside and her appetite waned.

“I was eating one meal a day and I was starving,” she said. “Eating just made me sicker.”

She dropped 50 pounds and was constantly anxious. Finally, her primary care doctor tested Carlson for celiac disease. The blood test was positive — she would have to be gluten free for the rest of her life.

When Rachel Carlson discovered she had celiac disease she felt devastated. She loves eating and she even has to eat for her job.
When Rachel Carlson discovered she had celiac disease, she was devastated. She loves eating and tries new foods and restaurants for her job. Courtesy Rachel Carlson

“This just rocked my world. I am the Yelp community manager; I eat for my job,” Carlson said.

Carlson is one of the estimated 3 million people in the U.S. living with celiac disease. It's difficult to identify— some people go years before getting a diagnosis — and it doesn't always cause symptoms. The only treatment is a gluten-free diet. But because gluten is so difficult to avoid, nearly half of diagnosed celiac patients continue to suffer symptoms, according to recent research.

The disease is defined as “an inability to tolerate the protein that comes from wheat, barley and rye,” said Dr. Ivor Hill, director of the Celiac Disease Center at Nationwide Children’s Hospital in Columbus, Ohio.

While Carlson doesn’t recall many symptoms before 2017, she remembered that in 2003 she experienced serious “brain fog,” a common symptom of celiac disease.

“I thought I had a brain tumor. I didn’t realize it was celiac,” she said.

Mary Lynn Mack also lived with undiagnosed celiac disease for years. She experienced frequent migraines and diarrhea and only received a diagnosis after she took a bone density test at a health fair. The woman administering the test thought there was a mistake: Mack’s bone density was that of an elderly woman’s.

“I know now I was sick for years and there were a lot of symptoms missed,” Mack, 40, of Pittsburgh, told TODAY.

Confusing symptoms lead to missed diagnosis

While there are some symptoms more closely associated with celiac disease, people report having a wide variety of ailments.

“Something about gluten triggers at the lining of the gastrointestinal track … And it sets off this inflammatory cascade,” Dr. David Levinthal, director of the University of Pittsburgh Medical Center's Neurogastroenterology and Motility Center, told TODAY.

According to Hill and Levinthal, classic symptoms include:

  • Bloating
  • Cramping
  • Diarrhea
  • Constipation

But people also experience a myriad of other symptoms, which include:

  • Weight loss
  • Anemia
  • B12 deficiency
  • Brain fog, the inability to think clearly or remember
  • Neuropathy, numbness of hands and feet
  • Arthritis
  • Osteoporosis
  • Infertility or frequent miscarriages
  • Dermatitis herpetiformis, a persistent itchy, blistered rash

“It can literally present with anything you can think of. That is probably why it is under-diagnosed,” explained Hill.

That’s what happened to Mack. Her doctors treated her for irritable bowel syndrome and migraines. After she cut out gluten, the headaches and diarrhea disappeared.

“I had no idea how sick I was until I changed my diet,” she said. “It was disrupting my life and causing me to miss out on things."

Experts are unsure why people develop celiac disease. They know it is a genetic autoimmune disease and gluten exposure triggers it. And there is some speculation that a certain virus or trauma might cause its onset. But researchers are trying to better understand it.

“Why is celiac disease so variable,” Hill said. “There may be some additional factor that causes the onset.”

To determine if someone has celiac disease, doctors run a blood test. If it comes back positive for antibodies associated with the disease, they perform an endoscopy with a biopsy to confirm it.

The struggle to be gluten free

“I hate to tell people they have celiac disease because there is no endpoint,” said Levinthal. “You can never have gluten again.”

Even with the abundance of gluten-free products, living without it remains challenging.

“There is gluten hidden everywhere,” said Hill. “It is in liquids and solids … You can even get it in some drugs.”

After Carlson received her diagnosis she visited a dietitian who specialized in celiac disease. And, what she told Carlson terrified her: She suggested that if Carlson wanted to be healthy she should skip everything that could cause her to accidentally consume gluten — no more eating at restaurants or enjoying beer, whiskey or gin. She couldn’t even use lipstick because cosmetics contain gluten.

“I thought ‘I am never going to have a normal life,’” she said. “Everything that is fun, I can never do again.”

But, there is some hope for new treatments. A drug is being developed to help people tolerate gluten — much like pills for people with lactose intolerance — as well as a medication that can work on the cells of the gastrointestinal tract. Researchers are also trying to create a vaccine to prevent a certain type of celiac disease.

But these might take years before people can benefit from them.

“There’s nothing at this stage that can take the place of the gluten-free diet,” said Hill. "Whatever researchers come up with, it has to be as safe and effective as the gluten-free diet."

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