By: Kathy Hubbard
“After living with the disease for over ten years, speaking around the country and talking to folks with it too, I realized that the important thing about having celiac disease isn’t answering the ever-important question ‘what’s for dinner,’ but rather, how do I gracefully navigate social scenarios with people I love without alienating them, or compromising my health?” This quote, written by Jean Duane, PhD was published on the website www.celiac.com back in 2021.
Dr. Duane goes on to say that the world revolves around foods containing gluten. Cakes, Holy Communion, breaking bread with friends and family put people who can’t eat these things in an antisocial situation that often causes feelings of isolation and seclusion.
The Celiac Disease Foundation, www.celiac.org, explains that “celiac disease is a serious autoimmune disease that occurs in genetically predisposed people where the ingestion of gluten leads to damage in the small intestine. It is estimated to affect one in 100 people worldwide, but only about 30 percent are properly diagnosed.”
What happens is that when someone with celiac disease eats something that contains wheat, rye or barley, their body mounts an attack. “These attacks leads to damage on the villi, small fingerlike projections that line the small intestine, that promote nutrient absorption. When the villi get damaged, nutrients cannot be absorbed properly into the body.”
Mayo Clinic tells us that no precise cause is known. “Infant-feeding practices, gastrointestinal infections and gut bacteria may contribute, but these causes have not been proved. Sometimes celiac disease becomes active after surgery, pregnancy, childbirth, viral infection or severe emotional stress.”
But what they do know is that between five and twenty-two percent of those diagnosed with celiac disease have an immediate family member who also has the disease. A study done by Mayo Clinic found that 44 percent of screened first-degree relatives had it.
The CDF tells us that the only treatment for celiac disease is a “lifelong adherence to a strict gluten-free diet. Ingesting small amounts of gluten, like crumbs from a cutting board or toaster, can trigger small intestine damage.”
Symptoms can vary greatly and may be different for children and adults. Digestive symptoms include diarrhea, fatigue, weight loss, boating and gas, belly pain, nausea and vomiting and constipation.
“However, more than half the adults with celiac disease have symptoms that are not related to the digestive system,” Mayo says, “including anemia, due to iron deficiency; loss of bone density; itchy, blistery skin rash; mouth ulcers; headaches; nervous system injury, including numbness and tingling in the feet and hands, possible problems with balance and cognitive impairment.”
Children are more likely than adults to have digestive problems that include nausea and vomiting, chronic diarrhea, swollen belly, constipation, gas and pale, stinky poop. The inability to absorb nutrients may cause infants to fail to thrive. Children may experience damage to tooth enamel, anemia, irritability, delayed puberty, and neurological problems such as ADHD or learning disabilities.
“Consult your healthcare team if you have diarrhea or digestive discomfort that lasts for more than two weeks,” Mayo says. “Consult your child’s healthcare team if your child is pale, is irritable, is failing to grow, has a potbelly, or has foul-smelling, bulky stools.”
They also say not, and I said not, to start a gluten-free diet before you see your healthcare provider. “If you stop or even reduce the amount of gluten you eat before you’re tested for celiac disease, you can change the test results.”
Mayo Clinic also says that untreated celiac disease can lead to malnutrition, bone weakening, infertility and miscarriage, lactose intolerance, cancer and nervous system conditions.
So, once you’re diagnosed with celiac disease, it’s time to tell your family and friends. The National Celiac Association says that can be a daunting task considering how many food stuffs contain gluten.
“A common thing family and friends may struggle with is understanding the small amount that makes someone with celiac disease sick. They may think it is strange that you cannot have ‘just a bite, or ‘a little taste’ or understand the importance of avoiding cross-contact,” they say.
They recommend starting by talking about all the foods that don’t have gluten such as plain meats, poultry, fish and seafood, eggs, milk and cheeses, fruits and vegetables, legumes, potatoes, rice and corn. And for everything else, read the labels – carefully. Then explain that celiac disease is a serious health condition.
Kathy Hubbard was a charter member of Bonner General Health Foundation. She can be reached at [email protected]. This article was written for publication in the Bonner County Daily Bee on November 4, 2026.