Changing Times for Catholic Celiacs

In our local newspaper, in the food section of the paper, there was an article that mentioned that Catholic churches offer low-gluten wafers.  The article was short, only about three paragraphs.



I was shocked, surprised, and thrilled.

I've known that Catholic churches in the area offer low-gluten wafers, but I was surprised to see it in print and thrilled to know that that there are others receiving in our neighboring churches.  How far the church has come since Nate received his First Communion.  Catholic Celiacs were just being welcomed to commune following Cardinal Ratzinger's, (now Pope Benedict,) approval of the use of the low-gluten wafer.  Just a few months after Cardinal Ratzinger's invitation, Nate received his first Eucharist.  No more worry of controversy nor the fear of excluding Nate from receiving and possibly ostracizing him from his faith when he reached adulthood.


Since that time, we have met with some priests that get it, and others that have mistaken the crispy little low-gluten wafer as a potato chip.  One memorable experience was at St. Charles Boromeo church, the patron saint of those with stomach issues, and our son's confirmation saint.  The priest there, was so use to the low-gluten wafer, he even had his own stash and did not need our contribution.

Now, here in our metro area, the local Jesuit high school has 15 communicants that request the low-gluten wafers.  The remaining churches in the area number around a dozen, many which I recognize but never have visited.

At the very least, as those priests move on to new parishes, the acceptance of the low-gluten wafer will also spread through the community.  Spreading beyond our metropolitan area and into the farming communities and small country towns throughout our state.

I wonder, how the rest of the United States has changed.  This is our corner of the world, and in other countries they had long before the US, started using low-gluten wafers.  What about the rest of the U.S.?







Heaven-sent for the gluten-intolerant 

You know that gluten-free has gone mainstream when priests offer low-gluten Communion hosts at Mass. 

Eleven Portland-area parishes and three individuals order the hosts from the Benedictine Sisters of Perpetual Adoration in Clyde, Mo. 

They're more costly than regular altar breads containing wheat and they require separate handling. And gluten-free hosts have been controversial because Eucharistic bread must be made of wheat and water to be considered "valid matter." 

But the Benedictine altar breads, made with water and wheat starch with less than 0.01 percent gluten, satisfy both Catholic Church guidelines and the needs of gluten-intolerant churchgoers. At Jesuit High School in Portland, up to 15 communicants have been receiving these hosts for the past two years, says Don Clarke, director of campus ministry. 

And those suffering from celiac disease are overjoyed. One Jesuit student's mom "started crying when she heard she could receive Communion again," says Clarke. 

Learn more about the Benedictines' low-gluten hosts. 

--Joan Cirillo OregonLive

Catholic Communion and Celiac Disease: the Options, by Barbara Coughlin M.D.

For the Catholic with celiac disease, the most painful aspect of living on a strict gluten free is the inability to receive the host, or bread, at Communion. Catholics believe that the bread is transformed into the Body of Christ. This transformation and the reception of the Body of Christ, called the Eucharist, takes place at Mass. It is the center around which the religious life of a Catholic revolves. To be suddenly denied this by virtue of having celiac disease is devastating to many Catholics.

Because the Catholic Church states that Communion bread must be made of only wheat and water with "sufficient gluten to attain the confection of bread," the only option for the Catholic celiac has been to receive Communion under the species of wine alone. According to Catholic doctrine, the whole of Christ is contained in the Precious Blood alone. As such, the person who receives Communion this way is still receiving the whole sacrament. Since part of the rite of the Mass includes placing a small piece of bread into the wine, the person with celiac disease needs to arrange for a separate chalice into which no bread is put. The priest is required to do this, as each Catholic in good standing has a right to receive Communion. At churches where Communion is offered to the congregation under both species, this might not be a problem, as the chalices that are brought out to the congregation generally do not have bread in them. As this is not universal, each individual should become aware of the procedures in her own parish.

Although receiving the Precious Blood alone provides a satisfactory theological answer, many Catholic celiacs still feel a deep sense of loss and isolation by being denied the ability to receive the Body of Christ in the form of bread as they have since childhood. Likewise, parents of celiac children are troubled by having their child receiving Communion differently from other children or by having their child drink wine.

Occasionally, one can find a priest who is willing to consecrate a rice host, but they are few and far between. In addition, since they are "breaking the rules," it’s best to be subtle about it and not publicize it. As such, this is not an answer for the vast majority of Catholic celiacs.

Now there is another choice. The Benedictine Sisters of Perpetual Adoration in Clyde, Missouri, have developed a Communion host that is extremely low in gluten. They have worked for ten years on this project. The host is made from gelatinized wheat starch. The hosts have been tested for the presence of gluten. According to the Sisters, they were tested to a level of 0.01% gluten. At that level, the lowest that could be tested, no gluten was detected. This means that there is less than 0.01% gluten in one of these hosts; however, it is not known how much less. The Secretariat for the Liturgy of the United States Conference of Catholic Bishops has stated that these meet the requirements of the Code of Canon Law and may be validly used at Mass with permission of the person’s pastor. They are manufactured by hand in a separate facility from the ordinary wheat hosts and are shipped separately from the wheat hosts so that there is no danger of cross contamination.

I spoke to Sister Jeanne Patricia Crowe, Pharm D, R Ph. of Immaculata College in Pennsylvania. Sister Crowe (who is in a different order from the nuns who developed the host and has no relationship with them) does not have celiac disease herself, but she has a particular interest in it and often speaks at celiac conferences. She weighed these hosts on an extremely accurate pharmaceutical scale, and then calculated how much gluten would be in one IF it actually were 0.01% gluten. The result was approximately 32 micrograms; a quarter of a host would have about 7 micrograms of gluten. For those (like me) who are little shaky on the metric system, 7 micrograms is 7/one millionths of a gram. To put this into perspective, a very small bread crumb contains about 10 milligrams, or 10/one thousandths of a gram--substantially more.

But, of course, the question in everyone’s mind is, "Is this safe?" The answer from the experts is, "Probably." Alessio Fasano MD of the Celiac Center at the University of Maryland has stated that the gluten free hosts are safe for people with celiac disease; however, he has not explained why. I have attempted to contact him, but he has not responded to me or to another person who has been researching this.

In 1993, Dr. Catassi published a study showing that the lowest level of gluten that produced a visible change in the biopsies of celiac volunteers was 100 milligrams of gliadin (equal to 200 milligrams of gluten) a day. Some experts have extrapolated from that to state that the maximum amount of gluten a celiac should ingest in a day is 10 milligrams. Clearly, the amount of gluten in one of these hosts is significantly lower than that, which suggests that it is a safe amount, However, no studies have been done on this, so it is impossible to know if there are any risks or dangers of long term exposure to this level of gluten.

I also spoke to Michelle Melin-Rogovin from the University of Chicago’s Celiac Disease program. She told me that no one knows how much gluten is safe, and that in the Real World, we are all probably ingesting some low level of gluten. She stated that she could not say that it would be safe for someone to use these hosts, but that it might be considered an "acceptable risk" that would be a valid decision for some. She recommended taking only a quarter of a host once a week at most. She also suggested that it would be wise for someone choosing to do this to check her antibodies beforehand and then several months later. She would not recommend someone who had elevated antibodies to use these hosts.

I realize that the policy of our support group and, therefore, of this website is to advocate that a person with celiac disease should do her utmost to avoid any consumption of gluten. As such, this article may seem to be in conflict with this message. As a Catholic celiac myself, however, I understand the deep sorrow that not being able to have the Body of Christ can cause. In the past four years, I have come to accept my gluten free life; I live fully and joyfully and eat very well. But the one issue that has continued to be painful and difficult to live with has been my loss of the ability to receive the Body of Christ at Mass. I also realize that non-Catholics may find it hard to grasp how vital the sacrament is for us, and why even those of us who are scrupulous to avoid any other source of gluten may choose this as an acceptable risk, and I hope they will look at it without judgement. I felt it important to gather as much information as I could about the low gluten host so that each person can make her own decision. The latest issue of Gluten Free Living also contains an article on the low gluten hosts, with comments from experts on celiac disease regarding their safety for someone on a gluten free diet.

My mentor in college once told me, "For the rest of your life, you will be making decisions based on insufficient information." That certainly applies to life with celiac disease! Whether or not one decides to accept the use of the low gluten host or to allow one’s child to receive it is a personal decision. Having had to make it myself, I know how difficult it is. If anyone would like to speak to me personally about the low gluten host or the logistics of using it in a way that avoids cross contamination, please feel free to call or to email me.

Evening Service: Traveling with our Gluten-free Pyx

It’s Sunday morning and we just decided to go to the evening contemporary mass. Since our parish does not offer an evening service we are trying to decide whether to go to Lady of the Lake or St. Ignatius. One is a contemplative service (which mom is voting for) and the other is a Life Teen mass (which Nate and Emily vote for).

I think I am out numbered.

We’ve come a long way. Years ago, when Nate was first receiving Eucharist, his low-gluten wafer was unique. Popping in to a new parish meant showing up early or calling a day in advance to explain the situation. Now, even if we have a visiting priest, we can arrive a quarter of an hour in advance, meet with the priest, and then slip into church for a quiet meditative moment before mass.

How does this conversation usually go? Now that Nate is 12, according to him, 12 years-8 months-and 12 days, we have been encouraging him to initiate the interaction. It still takes a bit of courage, occasional role playing, and then a “you-can-do-this” speech.

“Hello, Father. My name is Nate. I am gluten intolerant and I have brought my pyx with a low gluten wafer. I was hoping to have it consecrated at mass so I can receive both the body and blood.”

Either one of two things happens at this point, either the priest responds with a story of experience with low-gluten wafers, or the priest queries as he has never experienced this situation. As the years go by, fewer priests are unaware of the low-gluten wafers most of them now want to have an address of where to locate the wafers for other parishioners.

At this point, I usually get the elbow nudge. In a whispered panicked voice, Nate will cry, “MOM!” It’s my turn to step in. It’s a slow process to coach the communicant and educate the presider. As Nate grows in confidence, I am sure he will initiate more of the information when we visit new parishes, as it is now, I want Nate to feel welcome and excited about receiving eucharist.

Our home parish priest has set up a routine with Nate. No matter where we sit, Nate gets into line for Father, and then receives his low-gluten host from our pyx. (Prior to church, we laid the low-gluten wafer loaded pyx on the side table for the alter servers to deliver to the altar at the appointed time.) Quietly, the priest snaps the pyx closed and hands it back to Nate, who then pockets it and proceeds to the line waiting for the cup. This is Nate’s preferred mode of receiving. He feels like no one know he is different. No one singles him out from the rest.

Visiting a local parish when I was called to interpret for a special signed mass for the Deaf community, the priest made a big deal of walking down to Nate, giving him his host before anyone else received. All eyes were on Nate. From the front, looking down into the congregation, I saw Nate sink lower and lower into the pew. His face became a few shades redder, and his eyes darted up to mine with humility. After mass, Nate exclaimed in frustration that he was not old or invalid. He never wanted to receive eucharist that way, ever again.

When visiting a parish that the priest has experience with low-gluten hosts, we usually follow the tradition of this parish. Sometimes this means approaching the priest, receiving a blessing, circling the priest to take the pyx off the altar and proceeding to the cup. Other times, it is a matter of waiting until the very end, and going up as one of the last, so that the priest can step back to the altar and pick up the pyx for Nathan.

For either of our choices tonight, after a brief word with the priest, Nathan will be able to walk with our family, no matter where we sit, and receive Christ in the bread and the wine. It is an amazing blessing. I am thankful that we live in a time that congregations, priests, and a cloistered group of sisters understand the importance for everyone to be welcome to receive the sacrament of the Eucharist.

Lost and Found. The Precious Freezer Treasure.

"Mom!  Where's my pyx?"  

"In the freezer?  Next to your wafers?"

"Can't find it!  There it is!  It's under the frozen lemons!"

For five years this is the Sunday ritual.  Sometimes under the bag of low-gluten wafers sent from the Benedictine sisters, sometimes next to the chunk of ginger that rotates through the freezer compartments.  No matter how many times we swear that we will reload the pyx with a wafer, put the loaded pyx in the top rack of the freezer door, we always scramble Sunday morning to get the wafer into the pyx, into the pocket, out the door, and into the hands of the altar servers before mass.

Ever since our son Nate's First Eucharist, five years after we discovered he was celiac, we have held this ritual of supplying the low-gluten wafer for mass.  At one time these wafers were kept at the church, with the hopes that the elderly parishioner with celiac would enjoy the option of receiving the host.  After a year, she admitted that she had gone too long only receiving the Blood of Christ and was not missing receiving the Body.  Then, the priest came through and decided the freezer was an energy waster and asked us to supply our wafers from home.  We were the only family needing a low-gluten wafer.  

There was a stage about the age of nine that lasted nearly a year.  Nate was angry when we forgot the wafer, when he lost his pyx in a coat pocket for a couple weeks, or when we visited a church that was awkward with permitting this special arrangement.  I wish that I had a copy of the original pronouncement of the American Catholic acceptance of the low-gluten wafers.  At that time it was Cardinal Ratzinger, now Pope Benedict, that declared the approval of using these specially made wafers in mass.  

Much has happened through the years since we baptized Nate, discovered his being celiac, his First Eucharist, and most recently his confirmation.  My first support was an old, now non-existent, website for Celiac Catholic Kids.  I opted to reorder the title of this blog, as being Catholic is far more significant of an identity than being celiac or a child; being celiac will never change for Nate, but growing up from childhood will.

Please join in and share resources, stories of struggles, and moments of joy.