Living with Celiac Disease

We’ve all heard about people eating a gluten-free diet as a method to lose weight. But there are about 2 million people (or roughly 1% of the population) in the United States who cannot eat gluten due to having Celiac disease. What was once thought to be a rare disease that only affected children, today celiac disease is recognized as a genetic auto-immune disease that mainly impacts adults. So what causes the disease and what are the signs and symptoms?

According to a 2018 article from Atlas Obscura, during the food shortages in WWII, Dr. Willem Karel Dicke was able to prove his theory that gluten was the cause of celiac disease. During the Nazi rule in Western Europe, when food supplies were cut off and bread was no longer available, children who were in the hospital for this disease that causes malnutrition and inflammation in the small intestine were suddenly getting better.

But to Dicke’s surprise, something remarkable happened. “To the [celiac] children, the shortage of food was less severe than the toxic effects of wheat products,” he reported. Karel remembers that while other children were “miserable” for the lack of bread, his father’s celiac patients were thriving. When there was beschuit, or twice-baked bread, the children became sick once more. “There was a clear-cut difference,” Karel says. The mortality rate of children in the Netherlands with celiac fell during the food shortage from 35 percent to nearly zero.

People with celiac can’t tolerate gluten, a protein found in wheat, barley, and rye, according to the National Institutes of Health (NIH). In these people, gluten damages the part of the small intestine that helps absorb nutrients. Signs and symptoms in adults may include pain, diarrhea, fatigue, malnutrition, bloating and gas, nausea and vomiting, anemia, constipation, and osteoporosis. If you have diarrhea or digestive discomfort that lasts for more than two weeks, consult your doctor.

Similar symptoms occur in children, but the inability to absorb nutrients may also result in failure to thrive for infants, damage to tooth enamel, weight loss, irritability, short stature, delayed puberty, neurological symptoms, including attention-deficit/hyperactivity disorder (ADHD), learning disabilities, headaches, lack of muscle coordination, and seizures. If your child is pale, irritable, failing to grow, or has a potbelly and foul-smelling, bulky and pale stools, consult your pediatrician.

Blood tests can help test for celiac disease. Depending on the results your doctor may order an endoscopy to take a small tissue biopsy and/or take photos of your small intestine.

If you have a family member with celiac disease or dermatitis herpetiformis (intensely itchy skin that causes blisters and bumps) you may be at a higher risk of celiac disease. It’s also more common in people with Type 1 diabetes, Down syndrome, Turner syndrome, autoimmune thyroid disease, microscopic colitis, or Addison’s disease.

While there is no cure or treatment for celiac disease other than omitting gluten from your diet, clinical trials are underway looking for ways to make gluten less harmful. One drug contains enzymes that could digest gluten before the body could react to it. The other would bind gluten in the gut so the body could remove it in a bowel movement. They may be years away from becoming available, but they may be a game-changer for the future.

Sources: NIH, Atlas Obscura, WebMD, MayoClinic,, Everyday Health