The cost of gluten-free food is just the tip of the iceberg of economic burden of celiac disease
Excess cost of health care and loss of productivity have broad implications for society
Those who have celiac disease have long felt the pinch the gluten-free diet puts on their wallet.
But the higher cost of gluten-free food is only the tip of the iceberg when it comes to the economic burden of celiac disease, a team of international researchers found when they looked at the evidence regarding the economic impact of the condition.
The evidence shows that the societal economic burden of celiac disease stretches well beyond the cost of gluten-free food in terms of excess use of health care and loss of productivity, according to a study, “The Economic Iceberg of Celiac Disease: More Than the Cost of Gluten-Free Food,” published in a special celiac disease edition of the American Gastroenterological Association journal Gastroenterology.
For those with celiac disease, excess health care costs are related to a wide range of conditions associated with the disease and related gaps in nutrition that might be at play. Increased health care costs can begin before diagnosis and continue for several years afterward, according to the study.
While those who have celiac disease carry the economic burden of the high cost of gluten-free food alone, the hidden costs of increased use of healthcare and loss of productivity more broadly increase the economic burden on society, according to the study by lead author Soran Bozorg, PhD, of the Karolinska Institute, Solina, Sweden and colleagues.
Patient costs
A 2019 study cited by the authors found that the gluten-free version of mass-market cereals, pasta and snacks in the U.S. were nearly 140% more expensive than wheat-based counterparts. In addition to the cost of gluten-free food, those with celiac disease are burdened with additional time spent shopping as they verify the safety of products, additional time spent preparing food, and the strain associated with eating away from home. The economic burden of following the gluten-free diet was associated with lower quality of life, as well.
Additionally, naturally gluten-free foods such as fresh fruits and vegetables are typically one of the more costly items on anyone’s grocery shopping list.
The added cost is handled in a variety of ways by different countries, including a reimbursement for some or all of the cost of gluten-free products or a prescription for gluten-free foods. In the U.S., a tax deduction is available for the increased costs, but only if the deduction is greater than 7.5% of a person’s adjusted gross income – a difficult level to reach.
Nutrient gaps
The lack of nutritional value of some gluten-free products can also have economic repercussions, according to the study. Gluten-free grains often contain lower levels of nutrients compared to gluten-containing grains. Also, in the U.S. gluten-free bread, pasta and cereal are not required to be enriched with vitamins and minerals as wheat-based products are.
Lower levels of iron, B vitamins, protein, zinc, niacin, calcium and magnesium are found in gluten-free foods. Fiber can also be lacking, while sugar, fat and refined starches are consumed in higher levels. Those with celiac disease are also at increased risk of being overweight or obese, the study notes. Several studies have found that body mass index (BMI) increased once patients were diagnosed and went on the gluten-free diet.
“Although not analyzed previously, these issues will likely lead to additional patient and medical expenses to manage gluten-free-diet related nutritional deficiencies,” the study says.
Health care system costs
Most health economic studies on celiac disease have been done with patients who are newly diagnosed and do not estimate the economic burden across stages of the disease, the study says.
In a 2016 U.S. study based on about 31,000 patients with celiac disease in a health insurance claims database, the average annual cost of healthcare and prescribed medications was about two- and one-half times higher than matched patients who did not have celiac disease.
When hospital-based healthcare use in 2015 was evaluated in Swedish celiac disease patients, the average annual cost was more than one and a half times higher per patient compared to those without celiac disease. In children, the cost for celiac disease was more than two and a half times higher, reflecting that most children in the general population have little healthcare use.
Costs increase before diagnosis
The Swedish study also found that health care costs in celiac disease are increased long before diagnosis, about one and one-half times higher than the average annual cost for those without celiac disease five years before diagnosis. Similar results were found in a U.S. study.
Treatment of co-existing conditions related to celiac disease account for some pre-diagnosis health care costs, but authors of the review study emphasize that the very early, and often unrecognized, signs of celiac disease also likely drive-up health care costs. There is an estimated delay of three to 13 years between the onset of symptoms and diagnosis, they note.
Increases after diagnosis
A 2020 study using a U.S. claims database found healthcare costs for patients with celiac disease were highest within one year before diagnosis, which can be explained by the costs related to investigating celiac disease. Similar results were found in the Swedish study.
Costs then dip about 25% in the year after diagnosis, though they do not return to a level that matches others in the study used for comparison. Persisting excess use of healthcare continued for up to 10 years after diagnosis, other studies have found.
There is debate about the cause of excess use of healthcare, according to the review study. Although non-responsive celiac disease has been proposed as a cause, no significant cost difference was found between celiac disease patients with or without healing of the intestine. Intestinal recovery is the hallmark measurement of recovery on the gluten-free diet.
Instead, excess use of healthcare after diagnosis seems to be driven by associated conditions which might be related to the nutritional gaps in the gluten-free diet, the study authors wrote. Monitoring celiac disease and managing complications also play a role, and outpatient visits were consistently found to be the leading contributor in the U.S., the study says.
Effects on work and school
People who have celiac disease miss more workdays than the general population both before and after diagnosis, according to existing evidence.
Studies in Sweden have shown lost workdays related to diagnosed celiac disease are comparable to the number of days lost by those who have ulcerative colitis. These losses, which also occur as early as five years before diagnosis, continue for the first year after diagnosis and then decrease. The causes of lost workdays mimic those of excess use of healthcare, likely driven by related conditions and complications, such as psychiatric disease and osteoporosis, the review study says.
Meanwhile, there is little evidence on school attendance and celiac disease in children. Swedish studies have found no indication that celiac disease negatively affects school performance in middle and high school.
Cost of missed and delayed diagnosis
The review study touches on what the authors call the “human cost “of ill health over time due to lack of diagnosis. “This may result in a sense of loss of health and reduced productivity and enjoyment of life,” they wrote. In addition to this “loss of opportunity for wellbeing” the study points out long term consequences of undiagnosed celiac disease, including reduced bone density, increased risk of fracture and infertility.
However, there may also be some benefits of delayed diagnosis, according to the authors. Those with undiagnosed celiac disease have lower BMI and lower cholesterol. Additionally, undiagnosed patients do not have to contend with the social restrictions of the gluten-free diet, something that may be of particular value to adolescents, the study says.
What the future holds
Scientific advances in diagnosis, management and treatment hold potential for reducing health care costs.
These could include non-invasive ways to test for celiac disease reducing use of the endoscopy and biopsy needed for diagnosis of adults and most children in the U.S. New ways of monitoring how someone is doing on the gluten-free diet without relying on blood tests and an increased role for dietitians could also lead to cost reductions.
The development of a drug to treat celiac disease could also potentially reduce costs by decreasing healthcare used as a result of the complications caused by nutritional gaps, the study says.
“The true value of therapies for celiac disease, however, will not only be measured in tradeoffs of direct healthcare costs, but also in the impact better celiac disease control has on absenteeism, caregiver burden, patient social function and overall quality of life,” the study authors wrote.
Support groups
There are a number of support groups for caregivers and patients with celiac disease. Reach out to your gastroenterologist, dietitian, local hospital or community center for more details.
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Written by
Amy Ratner
Director of Scientific Affairs
Beyond Celiac
