The Challenges Some Kids Face
The first thing Barbara Bailey noticed was the rash. Her son, Bryson, 8 at the time, had itchy red blotches on his chest, abdomen, and the inside of his elbow. Concerned, Barbara started paying closer attention to Bryson’s diet and looking up information. She noticed that he got wheezy after eating anything with wheat in it, like their Friday night pizza. He was shorter than most of the boys in his class and didn’t seem to be growing at the same rate. His stomach was bloated, what Barbara called “Buddha belly.” So she scheduled an appointment with an allergist.
A blood test revealed that Bryson was allergic to numerous foods, including rice, oats, milk, potatoes, and corn. Surprisingly, wheat wasn’t on the list. However, the blood test showed high levels of the antibodies that can be indicators for celiac disease, and that’s what Barbara suspected Bryson had. Finally, another doctor suggested a small bowel biopsy, which is the next step in diagnosing celiac.
In celiac patients, the villi that line the small intestine are damaged by gluten, a protein found in wheat, rye, and barley. The villi are fingerlike projections that aid in nutrient absorption. In people with celiac, the villi are often flattened, rendering them nearly useless for absorption of essential vitamins, minerals, and other nutrients. The disease has been linked to anemia and osteoporosis. It can also lead to stomach cancer and infertility.
Celiac disease is a hereditary, autoimmune disorder. Symptoms may vary widely, but often include bloating, gas, diarrhea, weight loss, fatigue, vomiting, and the telltale rash like Bryson had. According to Dr. Henry Thompson, a pediatric gastroenterologist in Boise, “It is not surprising that wheat wasn’t on the list when (Bryson’s) allergy testing was done. It won’t show up in allergy testing.” He added that although the disease is hereditary, it may go unnoticed. “If a family member is diagnosed with celiac disease, others [family members] with quirky, unexplained symptoms should consider being tested, even as adults.”
In fact, Bryson’s father and paternal grandmother both show signs of having celiac, although his father’s blood test came back low enough that he’s not had a biopsy. “We just never put it together,” Barbara said. “We’d think, ‘Well, it’s heat rash,’ or, ‘He has asthma,’ but we didn’t connect his symptoms.”
A Mayo Clinic study published in July 2009 reported that the disease is 4.5 times more common today than it was 50 years ago, and researchers do not know why. There is no cure for celiac disease, which affects about one percent of the population. The only treatment is to maintain a strictly gluten-free diet.
So families like Barbara’s find themselves with a dilemma: how to accommodate one child’s special dietary needs while still preparing food that the rest of the family can eat? Barbara didn’t want the rest of the family to have to enjoy certain foods in secrecy. But it was difficult to find foods that didn’t contain wheat, rye, or barley. Furthermore, gluten is a key component in hydrolyzed vegetable protein—made from wheat—which can go unnoticed to the untrained eye on a list of ingredients.
That was two years ago. Barbara learned all the “secret” names for allergens so she can easily scan ingredient lists. “It helps that most of the allergens are toward the bottom of the list, but you still have to read all of the ingredients,” she advises. All in all, it’s a pretty healthy diet, with lots of fresh fruits and vegetables and lean proteins, and few processed foods. But most candy is also gluten-free, so it can be hard for children to make good choices when there are only so many options available.
Barbara has found many gluten-free alternatives for what she used to buy. “Restaurants are the hardest,” she says. It can be difficult to find information, although many chains are expanding their menus. It’s a matter of asking questions and being persistent. She has found resources for gluten-free pasta made with rice and potato flours, like Kinnikinnick. She frequently shops at Jake’s Place in Boise, which specializes in gluten-free products of all kinds, like bread and pizza crusts. She’s even found gluten-free spinach spaghetti noodles at Wal-Mart and cake flour at WinCo. “Fred Meyer has the best selection of the non-specialty stores,” Barbara says. “But sometimes you can only find ingredients. It would be great to find convenience foods, like macaroni and cheese, which [Bryson] could make for himself.” Still, she diligently checks labels on nearly every food she buys and has had a few surprises. “Ironically,” she adds, “the cheap store brand taco seasoning mix is gluten-free, but the name brand is not.”
In the first six months after changing his diet, Bryson grew three inches taller. Celiac disease can stunt a child’s growth, but at nearly 11 years old, he has caught up to the other kids in his class. His rash is now completely gone. As a family, they chose to concentrate on the positive. “From the beginning, we emphasized what he could have, instead of focusing on what he couldn’t have,” Barbara says. And that has made a big difference. “He is responsible for himself. If he really wants to eat something with gluten in it, he knows he’s going to pay the price later. But he has adjusted well. He takes leftovers for lunch instead of a sandwich. I can pack things for him to take to birthday parties and sleepovers. He can’t buy lunch at school, but he can still buy milk and not feel left out. He knows that if he wants it, we’ll find him an option if it’s available.”
Pizza and pasta are by far the two meals that people with celiac disease miss and crave most. When Bryson was first diagnosed, he had a hard time watching his family eat their Friday night pizza while he went without. There is a Papa Murphy’s within walking distance of their home. Barbara had endured the frustration of phone calls going unreturned from Bryson’s school when she tried to talk to the cafeteria staff and didn’t hold out much hope for a pizza place. But to her surprise, “Papa Murphy’s was great about letting me check the ingredients in their sauces and they let me bring in a gluten-free pizza crust so he can have what we’re having.” You can get gluten-free pasta at The Old Spaghetti Factory, and both pizza and pasta at Louie’s Pizza and Italian Restaurant in Meridian.
Fortunately, with an increase in support and resources, help is available for kids diagnosed with celiac disease enabling them to focus on the positive, “What I can do and eat.”
Donna Bush is a freelance writer and married mother of two. She enjoys cooking and entertaining, and writes about family health and fitness at http://www.examiner.com/x-12262-Boise-Healthy-Living-Examiner, and www.familyfitnessfiles.com.
Includes symptoms, testing, Wheat Need to Knows, Yes Foods and No Foods, recipes, reviews, and list of restaurants, markets/stores, caterers, support groups, and specialists.
Living Without magazine
This magazine for people with allergies and food sensitivities features a celiac section in each issue.
Gluten Intolerance Group of North America
This website can help you find certified gluten-free products, restaurants, information on labeling, support, recipes, and other information.
Celiac Support Group of Boise
This group meets at St. Luke’s in Meridian on the second Thursday of every other month (odd months), in the evening. There is no cost to join, although donations are sometimes requested. They have speakers occasionally, a potluck several times a year, and put out a newsletter. Gluten-free refreshments are served. Every November they have a cookie exchange. Contact Twylia McIlvanie at (208) 939-0373, or
R.O.C.K. (Raising Our Celiac Kids)
This group is dedicated to helping families meet the unique challenges of celiac disease among children. It meets in various places like parks, schools, and at St. Luke’s in Meridian and does fun events like barbecues and back to school parties. The goal is to give children an environment where they feel included rather than excluded. Contact Kim Kendall at (208) 672-9939, or
Website with gluten-free foods, recipes, and other resources.