What’s A Practicing Catholic With Celiac Disease To Do?

What’s A Practicing Catholic With Celiac Disease To Do?
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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.

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 have a chance to join our 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.

[1] Falini, N. P. (2010). Celiac Disease and Religious Practices in M. Dennis and D. A. Leffler (Ed) Real Life with Celiac Disease (190-191). Bethesda, MD: AGA Press.

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