The conversation around the Eucharist in recent months has focused on political figures and “Eucharistic coherence.” I can’t help but juxtapose these largely theoretical discussions with the real barriers to the Eucharist that exist for many of the faithful. I wish we would stop worrying about whom to exclude from the table and instead focus our attention on including those who are excluded through no fault of their own.

A few years ago, the USCCB approved “Guidelines for the Celebration of the Sacraments with Persons with Disabilities.” This document provides practical guidelines for making the sacraments more accessible to disabled Catholics. As helpful as it is in theory, its implementation has been uneven, and the burden of implementating these guidelines often falls on disabled Catholics themselves.

As I have written before, my experience with the Eucharist and disability is my daughter’s celiac disease. In our case, two things that have helped us with the burden of seeking accommodations for her to receive Communion are the existence of valid gluten-free hosts and this USCCB document. The document was helpful because before we contacted our priest about accommodations for First Communion, I worried that we might be blown off as unreasonable or following a fad (both are common responses to celiac disease). This document outlined many of our requests within its guidelines, giving us the relief of credibility and even a kind of pre-approval.

Documents alone cannot address all of the complex pastoral concerns, however. When it comes to celiac disease, other celiac Catholics have told us about their relentless struggles to receive the Eucharist without risking their health.

Last year, Emma Elder asked in an article in America, What happens when a devout Catholic cannot eat the bread of life?” She writes about how illness persisted after her celiac diagnosis, and how she “had to face the agony of potentially eating the wrong thing at least three times a day and then waking up the next morning to do it all over again.” She describes visiting a new parish and her attempt to drink from the cup without being contaminated with gluten:

I just had to reach one of those chalices first. But the minister on our side of the church ended up standing too far from where I sat; another communicant reached the cup before me, potentially mixing the blood of Christ with the bread that is his body—and the gluten that destroys mine.

She says she cried all the way home from Mass. She says she felt rejected by the Church over and over again:

Why did the church exclude someone trying to live out her faith? Why didn’t every church offer a form of the Eucharist that was safe for me to eat? The church was supposed to be my safe haven away from suffering, but instead it dug the pebble further into my flesh.

She ends on a hopeful note, but ultimately it is in the possibility of receiving spiritual communion, not the hope of inclusivity we have not provided for our celiac brothers and sisters.

Jean P. Kelly wrote for U.S. Catholic about the “communion conundrum for Catholics with celiac disease.” She speaks of when she

watched my fellow Catholics begging to be fed, longing for holy communion as I do every Mass. … I was emotional, too, but my tears welled from both joy and sadness. My youngest daughter and I were unable to receive holy communion at that Mass because we have celiac disease. We cannot consume traditional hosts.

She too states that she has not yet seen the bishops recommendations for Catholics with celiac disease be normalized. She writes about her fears and anxieties at Mass, which my family has as well:

Will [the priest] forget to return the pyx to the ciborium with the other hosts for distribution I wondered? Might someone open the pyx and dump my low-gluten host in with the rest, meaning I would be sick from cross-contamination? Would he forgo the pyx and hold the host in one hand while distributing other hosts, thereby cross-contaminating mine? Pyx, pyx, who has the pyx? My daughter and I have seen all these scenarios.

She also ends her article describing the pain, longing, and appreciation she feels for the Eucharist when she cannot physically partake of it.

And what about those who leave? I am unaware of any survey on how often a celiac diagnosis results in someone leaving Catholicism, but I have a feeling the number would be disheartening.

Outside Catholic media, the Gluten Dude, a popular celiac blogger, writes about a situation described in the Columbus Dispatch where a girl with celiac was not allowed to receive the Eucharist with a wheatless host. In the comments he states several times that he is a Catholic, seemingly non-practicing. His discussion and the comments provide a window into how many people with celiac disease feel about the Eucharist. A number of comments refer to people leaving Catholicism or considering leaving. He writes, “Where is the compassion? Where is the understanding? Where is the flexibility in the rules so that an 11-year-old girl can partake in a religious ceremony that is very important to her?” There are over a hundred comments, which include things like: “I was diagnosed 2 years ago, and I miss taking Communion. I recently started attending a small Episcopal church, that I love.” “I’m a Catholic and I KNOW I cannot receive communion any longer. I now do the walk that everyone does who is or is not Catholic who cannot receive communion—I cross my arms across my chest in an X pattern so the priest knows I cannot receive communion. People sitting in pews can wonder and gossip all they want. i know the reason, it doesn’t matter. My boss keeps telling me I need to become a Lutheran, his church provides GF communion wafers.” “I was Catholic for 21 years. I now attend a Lutheran church. We have gluten free wafers.” One commenter wrote about their celiac son’s First Communion: “I asked the church about the option of the wine only but that was frowned upon because he’s only 7. I’ve been a Catholic my whole life, went to Catholic school for 12 years, and I’m seriously thinking of leaving the RCC because of this.”

One commenter who went by Hilary made several illuminating comments. First, she wrote,

I’m a Catholic that got sick from receiving the “low-gluten” hosts. I also got sick from receiving from the common chalice, I guess because there were trace amounts of gluten on it from other people drinking before me. Every time I have made an arrangement with a priest to receive Communion from the chalice before the rest of the congregation, the arrangement has not worked out for one reason or another (in one case because the priest was hospitalized that day and then left the city), and it’s rare that a priest is actually willing to do this. What’s even more strange to me is that no priest seems interested in discussing the spiritual ramifications of my situation or giving me spiritual counsel, which you would think they would see the need for if they really believe what they say about the Eucharist. I’m a convert to Catholicism and don’t want to leave the Church, but after 18 months of this, I’m confused, hurt, and disappointed beyond anything I can say.

Hilary took it upon herself to get the accommodations in place, but because they were between her and an individual priest, when he was unavailable, she was unable to receive the Eucharist. She also says she’s been physically ill and there have been no efforts to tend to the spiritual consequences of all of this. She didn’t want to leave, but the situation looked bad.

She responded a second time about a better situation, but also with some convicting words, which I will quote at length:

I think what really needs to happen, instead of low-gluten hosts (although I understand some people are fine with them) is an emphasis on the fact that just as one receives the whole Christ in the host alone, one receives the whole Christ in the wine alone. […] And then, priests need to be willing to make this happen for celiac parishioners in a way which avoids cross-contamination, without making them feel that they are being a nuisance or an inconvenience. That will require educating priests on the issue of celiac disease. Given how important the Eucharist is to Catholics, and the increasing prevalence of celiac disease/gluten intolerance, I think this is something worth doing.

I went recently to a high-church Anglican parish which says in large letters in its bulletin (in two places) that gluten-free hosts are available at the altar rail on request. It actually made me cry, not because they permit gluten-free hosts, but because they went to the trouble of letting people know that was an option – as if it was totally normal and to be expected that someone in the congregation might have celiac disease. They are actively trying to make people with celiac disease feel welcome and accommodated. There are some great priests out there, but overall the Catholic Church in the US has a problem when it comes to making people feel cared for. She needs to get over her smugness and take steps to address this before she drives more souls away to other churches. Catholics tend to be defensive about their Church, but we need to have the humility (and enough faith) to listen to the complaints people are making. […]

On a personal note, I finally found a very kind priest who is educated about celiac disease and giving me Communion from a separate chalice, for which I am extremely grateful. So I won’t be leaving the Catholic Church just yet.

We Catholics need to be proactive in accommodating disabilities like celiac disease. We need priests to be educated about them, and we need to have expectations in place that celiac Catholics are present at every Mass, rather than relying on arrangements made between them and individual priests.

Personally, I feel like I am swimming upstream. I assume many Catholic parents worry about their own children in light of the fact that many young people have been leaving the Church. Families like ours also have fears of cross-contamination and sickness when receiving the Eucharist, or of not receiving when the risk of being glutened is too high. My husband and I can try to take the brunt of the challenges for our daughter–just one of many Catholics with celiac disease–for now, but that won’t be the case forever. Even still, she has been burdened with anxiety countless times over receiving the Eucharist when there might be cross-contamination. How do I help my daughter continue into adulthood as a Catholic when her experience in the Church contributes more to the stresses of her disease than to alleviating them? As a parent I fear she will feel the same heartbreak experienced by so many others.

While some Catholics spend so much time trying to set up barriers to certain politicians receiving the Eucharist, I am more worried about the significant barriers my own daughter faces. It is estimated that 1% of the population has celiac disease, and still more have non-celiac gluten sensitivity, so this is no small problem. Our sisters and brothers with celiac disease bear this burden–often silently and alone–throughout the US and around the world. How many of them simply leave?

Being properly disposed to receive the Eucharist is only one issue of many for the faithful. I hope the bishops will consider how we can welcome disabled Catholics more fully, especially those whose disabilities present difficulties related to receiving the Eucharist, like eating, drinking, and cognitive disabilities. Documents help, but awareness and action are badly needed. The bishops promote awareness campaigns for issues like abortion and religious freedom; could they not do the same for our disabled brothers and sisters?

Image source: Juan De Juanes, La Sagrada Cena (c. 1562; Museo Nacional del Prado, Madrid), https://www.flickr.com/photos/98216234@N08/16289340159

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Angela Rasmussen has a Ph.D. in biblical studies. She teaches at Georgetown University and The Catholic University of America. She is married with three daughters.

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