gluten free research

Celiac hospitalization costs $7.4 million

Hospitalization for celiac in the Unite States cost $7.4 million in 2014, according to a recent analysis from the University of Rhode Island. National records revealed 805 patients were hospitalized with celiac as the primary diagnosis. Their stays typically lasted 4.9 days and cost $9,247, slightly less than the mean for all hospitalizations: $10,885. Additionally, emergency rooms saw 752 visits due to the condition.

Women accounted for 63 percent of hospital discharges, supporting previous findings that they are more prone to celiac. However, male patients typically had higher hospital costs: $10,669 compared to $8,403 for women. Some research suggests celiac affects men more severely.

Dividing celiac patients down by age group, adults from 65 to 84 had the most expensive hospital visits ($10,830), with children under 18 the second-most-costly ($10,612). Not enough data were available to allow analysis on patients 85 or older. As celiac becomes more prevalent and because it has no cure, it will require ongoing health expenditures.

Borrelli EP. “Inpatient hospital costs for celiac disease in the United States in 2014,” International Journal of Celiac Disease, 2017, 5(3), doi:10.12691/ijcd-5-3-2.

Symptoms of celiac persist after diagnosis

Many people diagnosed with celiac continue to experience abdominal pain up to a year after adopting a gluten-free diet. A study of 85 new patients in Winnipeg, Manitoba, Canada, found that 66 percent were experiencing gastrointestinal symptoms when they were diagnosed. The proportion decreased only to 47 percent after 12 months of treatment.

During in-person interviews, the participants reported the frequency of symptoms such as diarrhea, indigestion and bloating. After a year eating gluten free, there was no difference in the rate of discomfort between participants who avoided gluten completely and those who admitted consuming some either by accident or intentionally. However, dietary adherence was considered high in this group, as 93 percent reported gluten exposure less than once a month.

Despite these findings, strict gluten avoidance remains essential for celiac patients. Ongoing digestive discomfort can result from other contents of the diet, such as fiber. Even the gluten-free diet itself can be associated with bloating. Patients might blame these symptoms on accidental gluten exposure. However, only gluten in wheat, rye, barley and related grains damages the intestinal lining in people with celiac.

It is a challenge for health care workers to distinguish the true cause. New celiac patients require careful medical follow-up to check persistent symptoms and ensure dietary adherence. Many experts have been calling for a simple and reliable test to identify whether patients are being exposed to gluten. This study highlights the need for a tool that is inexpensive and noninvasive.

Sylvester JA, Graff LA, Rigaux L, Bernstein CN, Leffler DA, Kelly CP, Walker JR, Duerksen DR. “Symptoms of functional intestinal disorders are common in patients with celiac disease following transition to a gluten-free diet,” Digestive Diseases and Sciences, 2017, doi:10.1007/s10620-017-4666-z.

Safe oats for those with celiac

A survey of 896 Finns supports the safety of oats for people with celiac. Purified oats have been widely accepted and available for celiac patients in Finland for 15 years. Patients following a long-term gluten-free diet recovered equally well whether they included oats or not.

For this study, volunteers provided current blood samples along with medical histories. All had undergone follow-up biopsies about one year after diagnosis to assess intestinal healing. Typically participants had followed a gluten-free diet for 10 years, with 82 percent eating oats.

Patients diagnosed since 2000 were more likely to use oats, probably reflecting doctors’ growing awareness of the safety of oat consumption. It was also more common among patients who consulted dietitians, who are likely to focus on oats’ nutritional benefits.

Those who consumed oats were no more likely to experience ongoing symptoms than those who avoided oats. The groups performed equally well on antibody tests for inflammation related to celiac. Their follow-up biopsies were just as likely to indicate gut healing. Those who consumed oats scored slightly better on a quality-of-life questionnaire and were less likely to be smokers.

North American specialists have also been advocating pure, uncontaminated oats for the diet because they offer an important alternative source of fiber and other nutrients. Both the U.S. Food and Drug Administration and Health Canada have revised labeling requirements to make oat products more accessible for people with celiac. However, experts continue to lobby for clarification because of risks such as cross-contamination in regular commercial oats. A recent review pointed to insufficient research on oat safety for people with celiac.

This study provides compelling data on oat safety from a large study group with a long follow-up time on the gluten-free diet. However, it did not investigate whether patients had consumed pure, uncontaminated oats. These findings do not clarify the safety of oats mechanically sorted to remove contaminants such as wheat grains, a process introduced by some North American manufacturers of gluten-free products.

Aaltonen K, Laurikka P, Huhtala H, Mäki M, Kaukinnen K, Kurppa K. “The long-term consumption of oats in celiac disease patients is safe: a large cross-sectional study,” Nutrients, 2017, 9(6), doi:10.3390/nu9060611.

Safe sourdough for celiac patients

In a small clinical trial, sourdough wheat baked goods consumed for three days by 10 celiac patients caused no autoimmune response. In comparison, the same amount of a natural wheat product provoked celiac antibody production in another 10 patients.

When sourdough ferments, bacteria consume protein and break it down into smaller particles. Italian researchers used strains of Lactobacillus, bacteria extracted from traditional bread sourdough. These were chosen for having digestive enzymes highly destructive against gluten protein.

The researchers also tested gluten on samples of cultured gut tissue from celiac patients. These cell cultures reacted to gluten from natural wheat flour, but after sourdough fermentation they showed no response.

To compare the response in patients, the study took blood samples before and after the participants ate their baked goods. Those who consumed natural wheat had a spike in antibodies mirroring the effect on intestinal cells, while antibody levels remained normal in those consuming sourdough.

Other studies are investigating drug therapy for people with celiac using enzymes similar to those used by Lactibacillus to ferment gluten. Theoretically, an enzyme pill could prevent harm when eaten along with gluten-containing foods. However, normal acidity in the human gut destroys enzymes faster than they can destroy gluten. Sourdough fermentation of food may provide a better alternative by eliminating gluten before it is consumed.

European scientists have been investigating sourdough for years. Participants in earlier studies showed tolerance for sourdough products, but this research confirmed a lack of immune response. This study does not prove all sourdough is safe or that celiac patients can tolerate such products on a long-term basis. Sourdough products have not received approval from celiac experts in North America.

Mandile R, Picascia S, Parrella C, Camarca A, Gobbetti M, Greco L, Troncone R, Gianfrani C, Auricchoi R. “Lack of immunogenicity of hydrolysed wheat flour in patients with coeliac disease after a short-term oral challenge,” Alimentary Pharmacology and Therapeutics, 2017;46:440-46, doi:10.1111/apt.14175.

 

Beyond Celiac’s “Bold Beyond” symposium empowers all of us to change the celiac scene

I was thrilled to be able to attend Beyond Celiac’s “Bold Beyond” symposium at Drexel University earlier this month. With an all-star physician-researcher panel and moderating by Beyond Celiac CEO Alice Bast, the evening was a major wake-up call: For so long, I’ve become blasé about the fact that my strict gluten-free diet is the only treatment for celiac. After that first year of transitional growing pains, I eased into my new normal, and found myself grateful that at least there is a known way to manage the disease.

But the panel highlighted just how much of a toll the diet actually takes on the lives of those in the celiac community—socially, emotionally and physically. Inconveniences and insecurities aside, 30 percent of celiac patients on the gluten-free diet show no improvement. And in a world where we’re all constantly eating on the go and often at the mercy of other food handlers, even the most diligent of us can’t confidently say we’re 100 percent gluten free—we’re just as gluten free as humanly possible.

3 ways to make a difference

Still, the panel wasn’t just an opportunity to vent—it was a call to make a difference, to push for a better quality of life, to campaign for the kind of research that could lead to pharmaceutical treatments and alternative therapies. And you can answer that call. Here are three easy ways:

1. Sign up for Go Beyond Celiac at go.beyondceliac.org. It’s an online community where people with celiac share their stories and experiences—and, in turn, advance celiac research. Currently, celiac receives the least government research funding of all gastrointestinal and autoimmune diseases. But it doesn’t have to be this way. The Beyond Celiac team has an extensive network of doctors, researchers and patient advocates with whom they regularly communicate—and who can be our collective voice for the need for further research.
2. Speak up to your doctors about the toll celiac actually takes on your life. So often, celiac patients don’t feel entitled to share their hardships—but suppressing those concerns stifles the chance for further research. When you speak up to your physicians, you help increase the likelihood that your struggles are conveyed to the research community, which in turn seeks out the necessary funding for research.
3. Participate in clinical trials. Visit Beyond Celiac’s clinical trials finder to see which studies are available near you. And in the future, the Go Beyond Celiac platform will include a registry component to help connect patients with researchers.

 

Pictured above, panelists included (left to right): Anthony J. DiMarino, Jr., MD, Chief, Division of Gastroenterology & Hepatology, Thomas Jefferson University Hospital; Ciaran P. Kelly, MD, Director, Celiac Center and Director, Gastroenterology Fellowship Training, Beth Israel Deaconess Medical Center; Professor of Medicine, Harvard Medical School; Alice Bast, Beyond Celiac CEO (Moderator); Daniel Leffler, MD, MS, Medical Director, Clinical Science, Gastroenterology TAU, Takeda Pharmaceuticals, USA Inc.; Director of Research, The Celiac Center at BIDMC, Beth Israel Deaconess Medical Center; Ritu Verma, MD, Section Chief, Gastroenterology, The Children’s Hospital of Philadelphia; Professor of Clinical Pediatrics, Perelman School of Medicine at the University of Pennsylvania