The number of celiac diseases continues to rise – but due to lack of funding, researchers still don’t know why

A few decades ago, the acronym “GF” on a menu could easily have been confused with “good food”. These days, it’s common knowledge that it stands for “gluten-free” — and now the shorthand adorns restaurant menu items nationwide. This shift in understanding is partly due to the rise in celiac disease, an immune reaction to gluten that causes inflammation and atrophy of the intestines. Coupled with increased awareness and internet access, gluten-free living is no longer just for the health-conscious; rather, celiac disease is an extremely common disease whose number continues to increase every year.

According to Dr. Peter Green, director of the Center for Celiac Disease at Columbia University, celiac disease has increased fivefold over the past 50 years, with the majority of these occurring in the 1990s. analysis published in the American Journal of Gastroenterology in 2020 supports this claim, finding that celiac disease is on the rise in the Western world, with higher incidence rates in women and children.

The reason for this increase in celiac disease continues to vex scientists. Still, there are compelling theories as to what might be causing it.

“We don’t know why it went up,” Green said. “But there’s evidence it’s stabilizing,” he said, citing research in Finland.

Despite a common misconception, celiac disease is not a gastrointestinal disease, but an autoimmune disease. People with celiac disease have developed an immune reaction to gluten, a protein found in wheat, rye, barley and triticale.

Green said it’s not a “typical” allergy, so to speak, because response can be delayed.

“There’s a period of time when an individual tolerates gluten, and then for some reason they develop this immune reaction that causes inflammation, development of antibodies, inflammation of the gut that causes atrophy,” Green said.

Notably, doctors say that many people with celiac disease are misdiagnosed. One problem is that doctors often don’t think about the diagnosis, in part because symptoms can vary. Indeed they include bloating, chronic diarrhea, constipation, gas, lactose intolerance, nausea, vomiting or even abdominal pain. A flare-up can physically manifest as an itchy rash on a person’s skin that may appear as clusters of bumps or blisters.

Green said doctors’ “inability” to think through diagnosis, along with a lack of knowledge about testing and how a diagnosis should be made, are the main cause why people go undiagnosed.

“There is actually less gluten ingested by the public today than 100 years ago.”

“We often hear stories, people say, ‘I’ve been going to the doctor for a long time, then the doctor brought a new person into the practice and a new person diagnosed me’ or ‘I’ve seen doctors and then I had to go to the ER for some reason and the ER doctor diagnosed celiac disease,” Green said. “We often see people who are told they have celiac disease based on very misleading information.”

However, with so many unknowns surrounding celiac disease – such as how many people have it and what is causing it to rise – misinformation ensues. A search on Instagram with the hashtag #glutenfree yields over 41 million posts. Between holistic healers peddling untested remedies and the pseudoscience surrounding the effects of gluten, it can be hard to sift through the noise. Yet, some members of the medical and scientific community have actively researched the possible reasons for this dramatic increase in autoimmune issues related to wheat ingestion.

“One of the most common myths is ‘we have genetically modified wheat,’ but there is no genetically modified wheat in the United States””

An oft-seen and unsubstantiated rumor about the cause of celiac disease concerns the industrial handling of grain.

“One of the most common myths is ‘we have genetically modified wheat,'” Dr. Amy Burkhart, a physician and dietician, told Salon. “But there is no genetically modified wheat in the United States”

Yet some patients insist that American wheat is different. The two doctors said they heard from gluten-sensitive patients who said they had visited another country – say in Europe where food safety standards are stricter – where they ate foods containing gluten without showing symptoms.

“I’ve heard that, and it’s a really interesting kind of phenomenon, but it’s important to say that these are gluten-sensitive people – not celiac disease. People with celiac disease should never go to Europe assuming they can eat gluten-free foods,” Burkhart said.

She noted that people with gluten sensitivity have a spectrum of gluten that they can tolerate.

“People think maybe it’s because the gluten content of wheat in Europe is lower, maybe it’s because the growing conditions are different and the climate where the wheat is grown can affect the amount of gluten in that food.”

Burkhart said there were more additives in foods in America than in Europe, which could be part of the phenomenon. Green said he suspects high-fructose corn syrup may explain why gluten-sensitive people feel better eating abroad.

“I have a lot of patients who go to Europe and say ‘my stomach is fine,’ but we don’t know what’s causing it,” Green said. “The food is different in the United States, but part of that is still high fructose corn syrup that people add to food in the United States, replacing sugar.”

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But Green pointed out that wheat in America is almost certainly not the cause of the rise in celiac disease. He pointed to the fact that celiac disease is also on the rise in countries like Australia and Canada. He said theories that suggest grain has been modified or gluten has changed over the past hundred years are also not true.

Celiac disease “hasn’t received a huge amount of money for research,” Green said. “He was under-investigated.”

“There’s actually less gluten ingested by the public now than there was 100 years ago,” Green said. “Celiac disease has increased, and we don’t know why, but autoimmune diseases and allergies have also increased, and we don’t know why.”

Burkhart said she believes an increase in public awareness of celiac disease has naturally played a role in the increase in celiac disease, in addition to an increase in testing and the rise of the internet. as a medical discussion forum.

“People are talking, information is being shared, and symptoms are being discussed; it’s spreading information quickly, including information about celiac disease,” Burkhart said. “Patients started asking for tests and recommending them to friends; some of these patients, of course, were diagnosed with celiac disease and they might not have thought otherwise of celiac disease or asked for tests if they hadn’t read about someone with the same symptoms.”

Despite the mystery surrounding celiac disease, Green said researchers are struggling with a lack of funding that could help them get answers.

Celiac disease “hasn’t received a huge amount of money for research,” Green said. “It’s been understudied…there are actually only a few individuals, anywhere in the world, who have demonstrated the mechanism of celiac disease.”

Therefore, a few researchers do a lot of legwork, Green said. “We understand how the gluten moiety interacts with the immune system and leads to inflammation in the gut…we now have a very large amount of knowledge, and this has only been developed by a few people.”

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