by Alice Bast, CEO Beyond Celiac

On June 15, 2017, the Vatican issued a reiteration of Church doctrine that stipulates that there has to be wheat in communion wafers. The letter validates the continued practice that “low gluten” communion hosts, such as that made by the Benedictine Sisters of Perpetual Adoration, are still acceptable to the Church. The policy that was reinforced in this letter was originally set forth in 2003.

But what if you have celiac disease and know you have to maintain a strict gluten-free diet?

This story highlights two key messages: 1) The emotional and psychological as well as physical burden of celiac disease is very real, second only to the perceived burden felt by people in end-stage renal disease and 2) We need more patient-centered research – for food safety reasons and to drive treatment options and ultimately a cure.

What’s at issue?

First, let’s start with the challenges of measuring the level of gluten even in products labeled gluten-free. Current testing methods for gluten detect only down to about 5 parts per million. Foods labeled gluten-free may contain gluten amounts between 5 and 20 parts per million and still be able to legally make a gluten-free claim under U.S. Food and Drug Administration rules.

Second is the issue of how much gluten a person with celiac disease can safely ingest. Ideally we would strip our environment and diet of it completely, but that is not scientifically possible. We hear from members of our community on a daily basis that even trace amounts of gluten can make a person with celiac disease sick. However, the research indicates that most people with celiac disease can tolerate 10mg of per day, the equivalent of 0.002 of a teaspoon. Is this accurate? It’s the most evidence-based information we’ve got. We can’t know one way or another without further research. And what if you aren’t part of “most people”? What are you to do then?

How much gluten is in a “low-gluten” communion wafer?

Nancy Patin Falini, MA, RD, LDN[1] notes that the amount of gluten in a low gluten communion wafer is approximately 100 parts per million, clearly over the level to qualify for a gluten-free claim. However, the total amount of gluten in one low-gluten host is 37 micrograms, the equivalent of .0000075 of a teaspoon. That’s 267% less that the threshold declared by researchers to be safe. But some people may still get sick. What’s more, there is nothing in all of the existing math and science that addresses the toll taken by the worry of how much is too much for someone who has celiac disease and for whom religious observance is important.

What other churches do

The Catholic church is not alone in grappling with what to do about communion for those who have celiac disease. Rev. Marek Zabriskie, rector of St. Thomas Episcopal Church in Fort Washington, PA, says his church has been offering a gluten-free wafer for several years. Many other Episcopal churches do the same.

Rev. Zabriskie, whose daughter has celiac disease, describes the church as “progressive, sensitive and accommodating of the need of many diverse people.”

Michael Smith, minister of music at St. Thomas, says one of the reasons many Episcopal churches have no problem offering a gluten-free alternative is the realization that bread used in 1st century Palestine was a very different type. “Wheat then is not wheat now,” he explains. Many, including St. Thomas, keep the gluten-free host on a separate paten, or plate, to avoid cross-contact.

Smith notes that in countries and regions where bread is not the daily staple of nourishment, questions have been raised about whether the host should be in a different medium. “Many churches in Asia are asking if rice wafers would be a more powerful symbol than bread,” Smith says.

Meanwhile, Catholics who have celiac disease have to make the very personal decision whether they want to consume low-gluten hosts in order to receive communion. Many Catholic parishes, particularly those that offer Communion under both forms, have taken steps to accommodate their celiac and gluten sensitive parishoners. Deacon Cliff Britton of St. Michael Catholic Church in Mount Airy, MD notes, “We have several people at our parish who need the low-gluten hosts and at least two for whom the low-gluten is still too much. Those who can consume low-gluten hosts approach the altar first (ahead of all others) to receive both the Body (host) and the Blood (cup). We provide an unused cup to help make sure the cup is not contaminated by someone who consumed a gluten host. Those for whom the low-gluten hosts are still too much receive the fullness of Holy Communion through consuming just the Blood.”

We Need Better

I can’t say it enough: We need a world in which people with celiac disease can live healthy lives, free from social stigma and fear of gluten exposure – a world Beyond Celiac. We need to be taken seriously. We need real answers. We need to have control over our health. We need to have treatment options that are reliable and effective – more than just a diet that requires us to turn control over to restaurants and even religious institutions. We will only get there by pushing for and participating in research. Researchers need to know the real burdens we face directly from us, because we live it day in and day out. If you have celiac disease, join with Beyond Celiac by signing up for our Research Opt-In. You’ll get the latest in research and what it means to your life, and you’ll also be invited to join an on-line community, Go Beyond Celiac to make sure that people with celiac disease are active participants in research efforts aimed at improving our quality of life both physically and mentally. This includes accelerating potential treatments beyond the gluten-free diet, and potentially discovering a cure.