Type 1 diabetes and celiac disease each come with their own requirements for disease management. But add the two together in a dual diagnosis and the challenge equals more than the sum of its parts. If a child or young adult is diagnosed with both diseases, it can be overwhelming for both the patient and family. Adults who have lived with diabetes for years and are later diagnosed with celiac have to learn a new way of eating.
“Having a diagnosis of celiac on top of diabetes is tough. Patients are already counting carbohydrates, but this adds another level of work,” says Laurie A. Higgins, MS, RD, LDN, CDE, coordinator of Pediatric Nutrition Education and Research at the Joslin Clinic in Boston. “Many of the old standbys they were using to manage diabetes no longer apply. For example, we often tell people with diabetes to have high-fiber grains, which would include wheat. That’s not going to work anymore. It’s a whole new lifestyle.”
To Screen or Not to Screen
A study appearing in the March 2004 Endocrinology and Metabolism Clinics of North America found that 10% of people with diabetes will be affected by celiac disease at some point in their lives. More recent studies, such as one in the March 2012 Italian Journal of Pediatrics and one appearing in the February 2013 Endocrine, suggest that between .6% and 16.4% of people with type 1 diabetes have celiac disease. This puts people with type 1 diabetes into a high-risk group for developing celiac disease.
Yet guidelines differ concerning whether patients with type 1 diabetes should be screened for celiac as a matter of course. The American Gastroenterological Association’s guidelines do not recommend screening for celiac disease even in high-risk groups unless patients have symptoms. The American Diabetes Association’s Standards of Medical Care in Diabetes 2013 encourages screening in children soon after a diagnosis of type 1 diabetes and if children have signs and symptoms of celiac disease, but makes no mention of testing in adults. The North American Society for Pediatric Gastroenterology, Hepatology and Nutrition recommends screening in highrisk groups and repeat screenings at regular intervals for high-risk patients who do not have symptoms and whose blood tests are negative for the autoantibodies indicative of celiac disease.
Much has been written in the literature both for and against screening. Arguments against screening include low adherence to gluten-free diets and the impact these diets can have on quality of life. Studies from Finland, Israel, Italy, the United Kingdom, and the U.S., as cited in the January 2012Th erapeutic Advances in Gastroenterology, indicate that strict adherence to gluten-free diets in patients with celiac disease ranges from 8% to 91%, with an average of roughly 62% worldwide and 74.6% in the U.S. Arguments for screening include the long-term complications of celiac disease such as osteoporosis, infertility, iron-deficiency anemia, and celiac disease– related malignancies, and the fact that patients can live free or nearly free of symptoms for decades even as the disease wreaks havoc on their intestines.
Alessio Fasano, MD, chief of Pediatric Gastroenterology and Nutrition at MassGeneral Hospital for Children in Boston and founder of the Center for Celiac Research understands the concerns about screening, but supports it.
“If the tests are positive but the patient doesn’t have any symptoms, it can be tough to convince the patient to go on another restrictive diet. They ask what the investment is,” Fasano says. “I explain to them that even if they don’t need to treat symptoms, a gluten-free diet will help them avoid problems later and potentially help them manage their diabetes.”
The symptoms of celiac disease are too vague not to screen patients with type 1 diabetes, says Carol Brunzell, RDN, LD, CDE, dietitian at the University of Minnesota Medical Center, Fairview, in Minneapolis. “Bloating, nausea, and early satiety, often overlap with symptoms of other conditions, including diabetes-related gastroparesis.”
The experts agree that if a physician suspects celiac disease, the patient should be counseled not to start a gluten-free diet until after testing is complete.
“Once you go gluten-free, it becomes hard to diagnose celiac disease because the gut will heal and the blood work [for autoantibodies] will go back to normal,” says Higgins.
Impact of Celiac Disease on Diabetes
Fasano says that the damage caused by celiac disease can affect blood glucose management, something that endocrinologists should keep in mind when working with their patients with diabetes. “The intestinal damage makes carbohydrate absorption unpredictable. Often, the problems start in the area of the gut where the highest concentration of gluten will be after eating — the duodenum and jejunum — but some patients have more diffuse lesions that will affect absorption.” He added that physicians and patients should also remember that oral medications and vitamin supplements can be affected by malabsorption.
Higgins emphasizes that patients who have diabetes and celiac disease should prepare for both high and low blood glucose. “With insulin, the dose is based on carbohydrates. If carbohydrates have not been absorbed when the insulin peaks, the patient may have a low,” she explains. “But if the carbohydrates are absorbed later, after the insulin peaks, that low may be followed by a high.”
Planning for low blood glucose can be tricky for patients with diabetes and celiac disease, says Marlisa Brown, MS, RD, CDE, CDN, past president of the New York State Dietetic Association, dietitian in private practice, and author of gluten-free books. “They can’t just grab any nearby carbohydrates, such as crackers, bread, licorice, or other candy to treat their low blood sugar. It has to be gluten-free, as well.”
The experts agree that as patients follow a glutenfree diet and their intestines heal, they may need to adjust their insulin along the way, and physicians may need to make dose adjustments in oral medications. Healing generally takes six months to a year in children and one to two years in adults.
According to Brunzell, patients who use insulin pumps should be counseled not to rely on the preprogrammed settings. “They should be basing their insulin on carbohydrates, anyway,” she says. “The carb counts on gluten-free substitutions may be different than regular foods, so they need to read labels.”
Tips for Endocrinologists
Endocrinologists and other physicians who treat patients with both diabetes and celiac disease should be aware of the social and psychological impact a dual diagnosis can have and be able to refer patients to mental health professionals and relevant
support groups, says Jessica T. Markowitz, PhD, clinical psychologist and research associate at the Joslin Diabetes Center and Instructor in Psychology in the Department of Psychiatry at Harvard Medical School in Boston.
“The social aspects of celiac in particular are difficult. When people get together, they tend to eat, and now these patients need to worry about cross-contamination with gluten when they go to someone’s house or go out to a restaurant, on top of their diabetes,” she says. “Many patients will struggle and not know how to talk about it. The easiest way to approach it is to ask them what they feel is the most difficult part of dealing with celiac disease, diabetes, or both.”
When physicians deliver a pediatric diagnosis, they should talk to the parents about how to discuss it with their children, Markowitz adds. “If the parents react like it’s horrible, the child will pick up on it. Let the child lead in terms of emotional response.”
Brown encourages physicians to design educational materials specific for patients with celiac disease and diabetes, even if it means hiring an expert to develop these materials.
“Have an intern or a dietitian put together a toolkit with lists that cover credible online resources, appropriate foods for treating hypoglycemia, gluten-free substitutions for common foods, and local restaurants that offer gluten-free choices,” says Brown.
Above all, take celiac disease seriously, says Fasano. “Sometimes [physicians] don’t think celiac is a big deal compared to type 1 diabetes. They know that if they don’t treat the diabetes, the patient will die, so they focus mostly on the diabetes,” he says. “The reality is that both are autoimmune diseases, and avoiding gluten for celiac disease is just as important as taking insulin for diabetes. Both diseases will kill the patient if you don’t treat them. It’s just that people with celiac disease will die more slowly.”
— D’Arrigo is a health and science writer based in Holbrook, N.Y., and a regular contributor to Endocrine News.