Woman Discovers She Was Poisoning Herself After ‘Misdiagnosis’ Decade Ago - Newsweek

A woman has discovered she has been "poisoning" herself for the past ten years after being incorrectly told she did not have celiac disease.

Celiac disease is an autoimmune condition triggered by the consumption of gluten, a protein found in wheat, barley, and rye. This causes the body's immune system to mistakenly attack the small intestine.

Over time, this immune reaction damages the lining of the small intestine, making it harder for the body to absorb nutrients from food. Symptoms can include diarrhea, bloating, stomach pain, fatigue, headaches, anemia, and weight loss.

According to the U.S. National Institute of Diabetes and Digestive and Kidney Diseases, about 2 million Americans have celiac disease, while roughly 1 percent of the global population is affected.

In a post shared to Reddit under the handle u/rebelnori, a woman explained that she was originally diagnosed with celiac disease when she was 12-years-old, but everything changed after a blood test ordered by her doctor indicated she was slightly above the normal range.

She adopted a strict gluten-free diet for the next 10 years but experienced no meaningful relief from her symptoms. That was when she consulted a gastroenterologist, who ordered a series of tests, including multiple blood tests, fecal testing, and an upper endoscopy with biopsies.

The results appeared to show no evidence of celiac disease. She was overjoyed.

"Awesome! I was just misdiagnosed all those years ago!" she recalled thinking. "I can eat gluten again!"

Seeking reassurance, she contacted her gastroenterologist's office and said a nurse confirmed there were no signs of celiac disease and that she could resume eating gluten.

Relieved, she returned to a normal diet.

But 10 years later, after continuing to struggle with gastrointestinal issues and developing new symptoms, she returned to the same specialist for further investigation.

This time, blood tests, an upper endoscopy, and a colonoscopy produced a very different outcome.

According to the Redditor, the results were "strongly supportive" of celiac disease.

Confused, she questioned how the condition could have apparently disappeared only to reappear years later. Her gastroenterologist then explained that the earlier testing had been performed while she was already following a strict gluten-free diet.

Because her intestines had healed and she was no longer consuming gluten, the tests did not show signs of active celiac disease. The absence of evidence, she was told, did not mean she had never had the condition.

"So... I've been poisoning myself for a decade," she wrote.

The woman said she remains upset that she was not given clearer guidance at the time, particularly after being told she could safely eat gluten again.

"Why wasn't I told this 10 years ago?" she asked. "Why did that nurse tell me I could eat gluten?"

While she is relieved to finally have an explanation for how she has been feeling, she admitted that returning to a gluten-free lifestyle feels far more daunting than it did when she was a child.

"At least I know how to be gluten-free and what my favorite foods used to be," she wrote.

Reflecting on the experience, she said she finally understands why she has felt unwell for so long, even if the realization has come with a great deal of frustration.

Now a baker, she acknowledged she is "going to need to change my recipes again."

Those commenting on the Reddit post offered messages of support.

One user wrote: "You can't lose celiac disease. You have it for life. And yeah, every test except the genetic test is just testing damage. They're not actually testing for celiac directly, they're testing whether you have damage or immune markers indicative of an immune reaction from gluten."

Another said: "The antigen blood test you are referencing is meant as a screening measure, not as a diagnostic tool. A definitive celiac diagnosis can only be made via an upper endoscopy, a type of intestinal biopsy."

They added: "You never should have made a significant, long-term lifestyle change without a formal diagnosis. I'm unsure how your doctors could've failed you so badly."

A third commented: "I'm so sorry you're going through this, but thank you for sharing your story. I was diagnosed as an adult, and this seems like common sense to me. But if your doctor didn't explain it, how could anyone expect a 12-year-old to understand? I'm going to make it a point to talk about it with my son."

Newsweek has contacted u/rebelnori for comment.

Contact Newsweek editors on this story: Marc Vargas and Paul Donnelley.