About 1 percent of U.S. population suffers from Celiac disease, yet effects don’t receive much recognition outside afflicted community
Synonymous with carbs, weight-gain, faulty metabolisms, and bad skin, gluten is often regarded as something to avoid in a modern, health-conscious society. According to a study from the NPD Group in 2013, 30 percent of American adults are reducing or eliminating gluten from their diet, largely because gluten products are seen as unhealthy. Though the claim is unsubstantiated, the buzz around gluten and its supposed negative effects has overshadowed, or even totally ignored, those with actual gluten-related health problems, namely those with celiac disease and gluten intolerance.
Celiac disease is an autoimmune disorder, similar to type 1 diabetes and lupus, wherein the immune system attacks the cells and organs of its own body. In the case of celiac, the presence of gluten, a storage protein found in wheat, rye, and barley, triggers the immune response. This can not only result in the expected gastrointestinal issues, like vomiting or diarrhea, but a litany of seemingly unrelated problems. According to Justin Siegel, an assistant professor of chemistry, biochemistry and molecular medicine at UC Davis, someone suffering from celiac could expect osteoporosis, anemia, infertility and other disorders resulting from autoimmune reactions.
It is estimated that 3 million people in the United States suffer from celiac disease. However, only about 500,000 of those have been diagnosed. Celiac disease is notoriously difficult to diagnose owing to its wide array of symptoms. Kathryn Russ, an associate professor of economics at UC Davis who was diagnosed with celiac disease, suffered from recurring health problems most of her life and was misdiagnosed by several doctors for years.
“I had chronic respiratory issues, stomach pain and problems [going into college],” Russ said. “When I was in the peace corps [doctors] thought it was a parasite. They couldn’t find one, but I had the symptoms.”
Even when she had a preterm birth caused by HELLP syndrome (Hemolysis Elevated Liver enzymes and Low Platelet count), a pregnancy complication that more frequently happens to those with autoimmune disorders, Russ was still not diagnosed with celiac disease. Meanwhile, her health continued to decline after the birth of her son.
“I had an emergency appendectomy, I had these weird episodes of pneumonia for months in the winter, I was starting to lose my hearing,” Russ said. “In every aspect of my health, everything was going wrong.”
Taking the advice of a physical therapist who suggested she may have celiac disease into consideration, Russ decided to try a gluten-free diet, but waited a year to heed the therapist’s advice.
“At the time, I was approaching tenure, I had a child, I was travelling a lot, I didn’t know what celiac disease was, or that it could kill you,” Russ said. “You hear all these things in the press ‘demonizing gluten’, that it’s a just a fad, a fashion — so I was really skeptical about it, even though my physical therapist […] seemed to know [what she was talking about].”
Finally, she decided to give a gluten-free diet a chance. The change was almost immediate, with the majority of her health problems totally disappearing.
The current gluten-free trend, the one Russ was hesitant of being associated with, has been a double-edged sword for those with celiac disease, according to Talia Machlouf, the director of advocacy and research for the Celiac Disease Foundation. On one hand, it was not long ago when gluten-free options in grocery stores were limited or nonexistent. In addition, the term “gluten-free” as a label was not regulated by the FDA until 2014, when it was defined as a food having 20 parts per million or fewer of gluten. Before 2014, any food could claim it was “gluten-free” and still cause illness in those with celiac. The gluten-free diet has led to greater awareness of gluten labelling.
The increasing popularity of these diets has, on the other hand, contributed to the rising cost of gluten-free foods and a lack of legitimacy given to those with gluten intolerance. Russ’s own preliminary research shows that, as a whole, gluten-free households spend 242 percent more on groceries than gluten-consuming ones, in part due to the increased cost of operating a gluten-free production for food suppliers, but also in part due to price inflation of retailers. Adding to that, restaurant staff will often not take those with gluten-free requests seriously, putting celiac patients at risk.
“They think the gluten option is healthier, but then splurge on something with gluten,” Machlouf said. “[Celiacs get] generalized with the health eaters and their requests don’t get taken seriously. If you cook eggs on the same surface as buns, then someone with celiac could get sick from that.”
Organizations like the Celiac Disease Foundation are educating both the public and health care providers about celiac to prevent years of misdiagnoses common with celiac patients.
Written By: Dylan Hendrickson — firstname.lastname@example.org