Letter sent to Presidents of the Episcopal Conferences from the Vatican: The official position regarding gluten and the Eucharist.

March 10, 1996 

To the Presidents of the Episcopal Conferences from the Vatican. This represents the official position of the Catholic Church with regard to gluten and the Eucharist.

From Archbishop Derek Worlock.

Your Eminence/Excellency:

In recent years, this Dicastery has followed closely the development of the question of the use of low-gluten altar breads and mustum as matter for the celebration of the Eucharist.

After careful study, conducted in collaboration with a number of concerned Episcopal Conferences, this Congregation in its ordinary session of June 22, 1994 has approved the following norms, which I am pleased to communicate:

• I. Concerning permission to use low-gluten altar breads:
  
  
  
  
  • A. This may be granted by Ordinaries to priests and lay persons affected by celiac disease, after presentation of a medical certificate.
  • Conditions for the validity of the matter:
    
    
    
    
    • 1) Special hosts quibus glutinum ablatum est are invalid matter for the celebration of the Eucharist;
    • 2) Low-gluten hosts are valid matter, provided that they contain the amount of gluten sufficient to obtain the confection of bread, that there is no addition of foreign materials, and that the procedure for making such hosts is not such as to alter the nature of the substance of the bread.
• III. Common Norms:
  
  
  
  
  • A. The Ordinary must ascertain that the matter used conforms to the above requirements.
  • B. Permissions are to be given only for as long as the situation continues which motivated the request.
  • C. Scandal is to be avoided.
  • D. Given the centrality of the celebration of the Eucharist in the life of the priest, candidates for the priesthood who are affected by celiac disease of suffer from alcoholism of similar conditions may not be admitted to Holy Orders.
  • E. Since the doctrinal questions in this area have now been decided, disciplinary competence is entrusted to the Congregation for Divine Worship and the Discipline of the Sacraments.
  • F. Concerned Episcopal Conferences shall report to the Congregation for Divine Worship and the Discipline of the Sacraments every two years regarding the application of these norms.

With warm regards and best wishes, I am Sincerely yours in Christ.

 Archbishop Derek Worlock of Liverpool was the leader of the fight for Celiacs in the Catholic Church.   In the 1980's, Archbishop Derek Worlock was diagnosed with celiac disease, under his leadership, he tirelessly worked to allow celiacs to receive a special host.  Eventually his request was reluctantly granted. In 1996, Archbishop Worlock died of lung cancer.


The simple black slate tomb of Derek Worlock C.H. 8th Archbishop of Liverpool from 1976-1996.   St. Joseph's Chapel of the Metropolitan Cathedral of Christ the King, Liverpool.  

Life's Unfair: The teen years of growing-up Celiac

I hate being Celiac!  It’s not fair!  I am the only one in the whole world that is cursed!

Nate is melodramatic.  Slightly.  Well, slightly, on his good days.  Very literal, logical, academic, and very melodramatic, that’s our Nate.  As the parent-child teacher once told me, Nate is all emotion and energy.  

Life is not fair.  From the Old Testament, we know Job had his troubles.  But no pre-teen wants to hear about Job losing his house, wife, and kids.  Showing up at youth group and finding out there is a surprise pizza party, and no one thought to about a gluten free pizza; some nights that’s the end of the world for Nate.  Spending a half hour making a new cookie recipe, only to taste it and realize that sand has a better consistency; that’s worthy of declaring that Nate’s dying of hunger.

Everyone has their cross to bear.  Most of the time we can’t see what each other carries.  I’ve been gently talking Nate through the emotional melt downs through the years, and we have often ended up with a litany of how unfair life has been to others, the crosses that others bear that we can only barely see.   

• Nate’s cousin Francis had open heart surgery as a toddler, huge cross for her early life.  As a toddler, she was not growing.  Although the two were the same age, Francis, was nearly six inches smaller.

 • Nate’s best friend, Sebastian, has exercise induced asthma, and he is a star athlete for all the CYO sports, plans to go to the big Catholic high school and on to college with a scholarship.  Yet, he can’t run four blocks without his inhaler.

• Steven’s father has been seriously ill, started back to work and the economy crashed.  There is no money for anything extra, and won’t be for years to come.  Steven is a very accomplished pianist at the age of thirteen, and the family cannot afford a piano.  Daily, Steven walks to his church to practice.

• Edward's mom died when he was six.  Edward and Nate studied ballet together for several years.  At the funeral, Edward came up to Nate and said, “I am so sad, I don’t think I will ever dance again.”

•  Grandma has cancer and is also Celiac.  Grandma was not following her gluten free diet, and during her initial tests for cancer, her liver function levels were completely off.  Upon discussion with the doctor, she had to admit that she was not being careful, which had caused the body to react.

•  Nate’s little sister seems to have nothing ever go wrong for her.  (Well, except that she is allergic to seafood, milk, pork, cats . . . )

And then there is my litany.

• Gluten free foods are so much more expensive.

• Why won’t the soup supper cooks bring in the list of ingredients.  I keep asking and every week, I have no idea what is in the soups.  I get tired of bringing our own food to every church parish community event.

• I get so tired of restocking our gluten free emergency box.  

• It takes so much time cooking two versions of the same recipee when family and friends are over.  Why won’t they just eat our gluten free foods.

• It is hard to say, “Sorry Nate, you can’t eat this either.”

I know that it is really hard to feel different everyday.  To Nate, there are times when it feels like he is being singled out or picked on, everyday and everywhere we go.  The closest comparison we have been able to talk through, has been friends with diabetes.  Like Celiac, everything seems to revolve around food; ingredients, food labels, getting enough food, eating a right balance of food, finding enough food when traveling or away from home, teaching others about the foods Nate can eat.  

Talking to these other moms, it is hard not to say, “Get over it, get on with life!”  And, it is only when dropping the mask that we can really say how scared we too were before the diagnosis.  How frustrating it can be.  How green the grass looks for everyone else. 

At the same time, often when supporting each other, there reaches a point when thanksgiving starts to come forward.  

•  I am really thankful we had an early diagnosis.

•  I am really thankful for how supportive my entire family has been for family gatherings and meals by remembering to call or by bringing a surprise treat.

•  I really appreciate the youth group leaders and their willingness to learn and include us in the meal choices.

•  We have been blessed to have several grocery stores that carry lots of choices of gluten free foods.

•  I am so thankful that my husband appreciates the extra work that it takes for food preparation and he teaches Nate to be grateful.  

•  I am so thankful that Nate lives in a time that he can receive a low-gluten host.

I know there are days that Nate would really like to wake up and go through the day, not thinking about his gluten free diet.  My attitude can influence Nate’s feelings about being celiac; I am an example and his support during his frustrating moments.  And, although  I don’t live a life any bit like Job’s, by reading through his book, I can find support in looking for the places to be thankful rather than bitter.

Feast Day of St. Charles Borromeo, November 4th (reprint)

"Hey Mom!  We're suppose to choose a saint for confirmation.  Sebastian's saint is known for being the saint of athletes."

Sebastian is the natural athlete every child wishes to become.  A triple threat, football-basketball-baseball; the perfect all-around athlete that every athletic director waits for.

"Wouldn't it be my luck if St. Charles Borromeo was the saint of stomach ailments?"

Nate's and his saint must have chosen each other.  Rick and I, the parents of Nate, chose Charles as his middle name in honor of Rick's father.  Our Catholic friend in Germany congratulated us upon Nate's birth and asked if we had chosen the middle name, Charles, to honor the patron saint of Nate's birth date.   We had no idea of the connection, to us, it was a family name.  Nate Charles was born on his feast day, so through the years we honored the three Charles on November 4th; grandfather, grandson, and patron Saint Charles Borromeo.

At the beginning of confirmation, Nate was undecided as to whether to formally take Charles as his patron saint, or to choose another saint.  His confirmation friends were all researching their saints, coming to class with patron saints of music, athletics, or specific virtues.  Nate's confirmation instructor believed the coincidence was divinely ordained and encouraged Nate to do a little research.  Little did any of us really know.

Who is Saint Charles Borromeo?  

Saint Charles Borromeo was a confessor, someone who died a natural death.  Born October 2nd, 1538, Charles was a lawyer and then appointed a cardinal of Milan.  He is well known for having spent his family's wealth building colleges, universities, and seminaries.  St. Charles was a key supporter of reconvening the council of Trent in 1562.  He was also a radical reformer of the clergy, and created the Confraternity of Christian doctrine for religious instruction of children.  During his life, St. Charles worked to alleviate the suffering of the poor and sick, even walking barefoot three times around the city in his cardinal's robes with a halter as a sacrifice while he offered the Sacraments to the dying.  St. Charles Borromeo died November 3-4th, 1584.  

 http://www.catholic-saints.info/patron-saints/saint-charles-borromeo.htm and http://www.scborromeo.org/scb.htm

When we came across the list of patron saints, Nate knew St. Charles was meant for him as

Saint Charles Borromeo is the patron saint of clergy, intellectuals, colic, stomach trouble and ulcers.  Maybe not listed specifically as the Saint of Celiac's, but Nate's earlier wonderings of patrons of stomach ailments was clearly more than intuition.

So, all these years, we have had the perfect patron saint watching over Nate.

Prayer of St. Charles Borromeo

Almighty God, you have generously made known to human beings
the mysteries of your life through Jesus Christ your Son in the Holy Spirit.
Enlighten my mind to know these mysteries which your Church treasures and teaches.
Move my heart to love them and my will to live in accord with them.
Give me the ability to teach this Faith to others without pride, without ostentation, and without personal gain.
Let me realize that I am simply your instrument for bringing others
to the knowledge of the wonderful things you have done for all your creatures.
Help me to be faithful to this task that you have entrusted to me.
Amen.

PIZZA (Gluten Free): The staple diet of every youth group.

By now I should know that I don't even need to ask a Catholic youth group what they want to eat at a youth group function.  There is always and only one answer, "PIZZA!".  Every youth group that I have been involved in has the same menu, just a different source. 

Some like the fast, phone-in order pizzas from Pizza Hut or Godfathers.  Other groups enjoy baking their own from the local take-and-bake chain, Papa Murphy.  One group just wanted to pick up grocery store pre-made pizzas to pop in the oven.  The type varies slightly, but usually we have the cheese-only crowd, the pepperoni-only group, a veggie lover's crew, and gotta-have-lots-a-meat team.

We've entered our second year of youth group with Nate.  The first year I was busy with other events on our parish campus; daughter Emily had her own activities in the school building, only twenty yards from the youth room.  This year, Nate is going to be on his own for the 90 minutes of youth group as Emily's group is meeting on another night of the week.  Nate's diet is becoming more and more his own monitoring; less and less am I informed in advance about special pizza nights or pot-luck snack events.

I've had a year to prepare for this new independence and time to ask friends in other churches for suggestions.  One friend just doesn't allow their teenage child out of sight for any such events and has given strict rules to never eat anything unless the parent has verified the gluten-free purity of the food.  In short, unless it comes from their kitchen, the teen is never allowed any other foods.  This is a bit too strict for our family.  Our goal is to encourage Nate to be responsible for all food that enters his body, whether we are present or not.  This has been a gradual increase of independence.  In their strict regimented diet, I am concerned about it becoming the battle point in some late-teen or early adulthood rebellion.

On the other extreme, not a healthy one, another friend just allows her celiac child to eat whatever is present, "One day a week of forbidden foods will help keep him on the diet for the other six days.".  This is not a healthy option for Nate, as with gluten foods he stopped growing and Nate really hopes to pass his dad in height.  Philosophically this approach does not match our belief, Nate is still learning to make choices in the midst of his peers and under peer pressure.  We want him, in many different scenarios, to make the statement that he will choose what is best for his body, mind, and soul, even if it is different from the group.  Practicing this with something familiar to him, like gluten-free foods, is just a small rehearsal for the big issues that will come along in the future.

For the earlier years of Religious Education, we kept a box of gluten-free snacks for "emergency" snack raids.  A surprise special birthday celebration for a classmate would bring thick-frosted-gooey cupcakes to class; out comes Nate's special gluten-free snack box for a chocolate treat.  The solution for us in youth group has been to create a freezer box of a couple gluten-free pizzas and a quick microwaveable meal.  (Special treats!  We make everything from scratch at home, so things in cardboard that just need heating seem like the royal treatment.)

Nate knows how to read labels for chips and candy; and he makes great choices, keeping a good balance of sugars, carbs, and proteins.  There seems to be a regular appearance of popcorn at youth group nights, something that Nate knows to gravitate towards.  However, occasionally something different comes, a nacho dip, corn dog dippers, sub-sandwiches, or cheese and crackers.  It's on these nights that Nate has the hardest time.  He's hungry, the choices are limited or non existent.  A once-and-a-while fasting until he reaches home is tolerable, but a regular weekly fast from the community gathering around the snack table seems to be a sentence for starvation for a young male teenager.

Personally, I feel that being celiac should not be a trial of deprivation.   Others need to know that we want to be aware of special event; we would like to bring fresh gluten-free pizza or gluten-free cookies. Nate's does not need to regularly go without,  but neither do I need to become the gluten-free martyr, "It is SUCH  a hassle to bring gluten-free foods.  Why doesn't anyone ever remember to bring gluten-free foods?  Nate is special and should get first choice through the line before the gluten-free foods are gone."

I have to admit, that even though I do not voice these complaints aloud at the event, I have felt them and in a private moment gripped to close friends and my husband.  My voice has whined.  I have groaned as walked into a youth group meeting to see pizza boxes ready to be served.  I have counted to ten, knowing that a positive comment to encourage advanced warning would make it easier for me to provide options for Nate.  Nate is the first in a long string of celiac kids, coming through the parish.  The need for gluten-free options is not going to disappear after Nate graduates.  Maybe I am just the forerunner and carving the path for the families to follow.  My attitude and time invested to share, will make it easier for the others coming up in another year.  My attitude will make it easier for the other parents when they make requests.

The youth group leader at our parish has been really wonderful.  She tries to remember to give me a schedule of special food events.  She has a place for Nate's special snacks.  On a recent pizza feed, she ordered pizza from a more expensive source so that everyone had pizza from the same boxes.  Food is a common place for all communities to gather, teenagers are no exception.  It is her extra effort that allows Nate to belong and not to feel like the outsider.  

Being a Catholic Youth Group, the center of their lives is Christ and the center of the Mass is the Eucharist.  Being able to gather around the snack table and not feel excluded may not seem significant to an adult, but to a teenager, partaking and enjoying pizza (gluten and gluten-free) with friends means you belong, you are in communion with your friends.  For Nate, being able to gather with his friends at the altar and share in the Lord's Supper, with a low-gluten wafer, is a moment to be part of the Body of Christ, to belong to the Catholic community.

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.

Six Wishes for First Eucharist Preparation

Our First Eucharist Preparation year ended with a wonderful celebration mass with Fr. Adams.  The beginning of the year was not so smooth, and as other Catholic celiac families ask me for hints, I have started coming up with a wish-list of things I wish I had thought of before the preparation year and things for the special day.

1.  Welcoming first impression.  

My first suggestion for going through First Eucharist with a Celiac child, would be to start the year out with a simple home lesson to talk about the coming special year.  Nate and I had this conversation, but only after a mini incident at R.E. happened.  After years of making "wheat" the bad guy that makes you sick, we entered a year of banners of wheat shafts, loaves of bread, and much imagery of how special bread is to eat.  All of a sudden, Nathan wanted to be part of this incredibly delicious feast he was hearing about, yet his experiences with wheat were pain and discomfort.  What a mixed image and message.  

Each family addresses the gluten issue in different ways, often depending on the age of gluten-free onset.  For us, Nate was very young and had never really remembered the "wheat days."  Our chat was to focus away from the strong emphasis of the wheat and grapes, and to focus on the host and wine, or to examine Christ's Body and Blood lessons.  When all of the other kids made banners of wheat and grapes, Nate made pictures of the host and the chalice of wine. We were careful as I did not want to implant the idea that the wheat was being replaced, as Catholics we do not replace with rice or other grain wafers.

2. Snacks.  

I wish there was some way to know ahead of time when a parent was planning to surprise the class with birthday cupcakes or a special treat.  Nate is a good sport, but he too wishes to be part of the event, and a "special treat" from my purse is not exactly the same as a fluffy frosted cupcake with a magic ring stuck in the top.  I let the teachers and director know that we wanted to be aware of special food days, but I should have also let the parents know that I would bring replacement items, or provide a list of specific foods that would be acceptable for gluten free eaters.  

Short and simple gluten-free information and educational note:

  

"Nate is gluten intolerant (Celiac) and would love to be included in special food events.  Please call me at home, and I would be happy to bring equivalent foods.  If you wish to bring gluten-free items here are a few suggestions:

   Any fruit and vegetables.  

Glutano or Pamela cookies found in the Health Food section at our local grocery stores.  

Ice cream is a great gluten-free addition to your special cake.  Ice cream cups or Umqua, Breyers, Tillamook Brand of vanilla ice cream are gluten-free.  (Ice cream cakes don't work as they usually have cake and ice cream touching.)

Thank you so much for helping to include Nathan in your special event."  

3.  Priest.  

Our local parish priest was not interested in celebrating with a low-gluten host; he had never heard of such a thing.  I brought in the paper from the American Bishops and he still was not convinced that this was approved.  The priest from our second parish, the parish I work at, was very familiar and willing.  Nathan ended up having his retreat with these children and receiving his First Eucharist with Fr. Adams at a different parish than our own.  It was the day that was special, Eucharist was the focus; the group pictures and friends were not the center of our day. Our god-parents and extended family came with us to help make this a really special Christ-filled day.

4.  Retreat Day.  

I wish that there was some way for the kids to make a simple version of wine at the retreat as well as the little loaves of bread.  Surely, there is a wine making kit!  Our Religious Education director does a wonderful job talking about how bread was made at the time of the Last Supper, how we make bread today, where the ingredients are found in nature (sugar could come from honey/bees etc.), and where we can find them in modern stores.  Being an educator, I love to make things hands-on for my students.  Nate is a great sport, he willingly watched from the side, but to do it over, I would search out this additional activity.

5.  Instruction

I wish that one of the teachers had been a bit more careful when telling the class, "If you don't eat the host, you are going to die, and never live again."  (John 6) Granted, I know what she meant spiritually, but for a young celiac child, her lesson was taken very literal and immediate.  In Nate's mind, if he doesn't eat the host, he might not make it to his next birthday, to Cub Scouts, to Christmas, to the baseball season.  Much of our music and liturgy is focused on "Eating the Bread of Life."  Yet for a child with celiac, eating the regular host, is not physically life-giving, but life-draining.  

With a little explanation, or use of some of the other scripture references in the gospels, the emphasis can be on "eating the Body, becoming alive in Christ, life everlasting with spiritual communion."  It has become important for us to express how receiving the Blood of Christ from the cup, is equal and as valid when received alone or when received with the low-gluten wafer.  On those Sundays or situations when the host is not available, Nate use to express how he didn't feel it was complete.  During his Eucharist preparation year, I never talked about situations when he could not receive his low gluten host, such as when no wine was present in a communion service or situations when the wine runs out.  Since then, I have tried sharing situations when non-celiacs receive spiritual communion when they are unable to receive Eucharist (ie. communicable illness, one of the elements runs out, parent with screaming child pacing the breezeway, a person avoiding alcohol, or a homebound Catholic listening to mass on the radio).

6.  The reception.  

I wish I had the gift of making a pretty cake, or knew of a cake store for gluten free specialty cakes.  Nate did enjoy the fruit platter, the fruit punch, and the cookies we brought along for the event.  There are just enough times in life that he watches from the side or substitutes with a gluten-free alternative that this could have been one of those opportunities to bless the event with something special and similar to everyone else's.

 For Nate's recent confirmation, I did make a round two tiered cake (from a gluten free mix) with frosting.  Younger sister, Emily, and I wrote a special message for him with a cake decorating tool that she had received at Christmas.  (Finally, someone in our family will know how to frost a cake!)

Having gone through this so intimately with a family member, I really have a desire to make the  lessons and experiences accessible.  These suggestions are a few that I continue to offer to our parish and to other families going through this special year.  

May these bless another child and help to create a truly holy and wonderful celebration mass.  

First Eucharist Article from National Catholic Reporter (April 2009)

I have started collecting stories of other children and families that are living the Catholic Celiac life.  This one came from a variety of different sources on the web, but I believe it originated from the National Catholic Reporter.  The family has also recorded it on their own personal blog.  

Beautifully written and well researched.  Enjoy!

When Wheat Won’t Work

More Finding Ways Around Celiac Disease

BY ANNAMARIE ADKINS

REGISTER CORRESPONDENT

April 26-May 2, 2009 Issue | Posted 4/17/09 at 6:04 AM

HOWELL, Mich. — First Communion season is upon us, and Maureen Wittmann still recalls the first Communion of her son, Gregory, three years ago. Gregory suffers from celiac disease.

Gregory, then 7, was the only child there who didn’t receive a consecrated host from the priest. Instead, he drank from the chalice.

Celiac disease causes intolerance to gluten, an essential part of wheat.

Gregory’s family had known since he was 2 that he was a celiac sufferer, and when first Communion time approached, they explained the situation to their priest.

“He was great about it and didn’t think it was a big deal,” said the home-schooling mother of seven children. “‘We’ll just give him the Precious Blood,’ he told us.”

On first Communion day, the priest made it a teaching moment for the entire parish, as he explained how Christ is fully present in the Precious Blood as well as in the host.

It’s been a little more challenging for Greg at the family’s new parish since they moved last year. “The second or third week we were there, I saw part of the presider’s host floating in the Precious Blood,” explained Wittmann.

Those with celiac disease not only have to abstain from ingesting wheat, but also must avoid coming into contact with wheat. Drinking from a chalice in which the celebrant’s host is commingled or from the same chalice others drink from after they receive a traditional wheat host presents a problem.

“Greg can’t eat pepperoni from the top of a pizza because it’s contaminated,” said Wittmann. “Any amount of gluten can damage his intestines; I don’t want to set him up for lymphoma or any other diseases.”

Some may think Wittmann may be overreacting, but the University of Maryland Center for Celiac Research has found that celiacs are more likely to be afflicted with problems relating to malabsorption, including osteoporosis, tooth enamel defects, central and peripheral nervous system disease, pancreatic disease, internal hemorrhaging, organ disorders (gall bladder, liver and spleen) and gynecological disorders.

Untreated celiac disease has also been linked to an increased risk of certain types of cancer, especially intestinal lymphoma.

Low-Gluten Host

The Church teaches that when a priest consecrates the Eucharist, the bread and wine become, in substance, the body and blood of Christ — but the characteristics of bread and wine remain and act upon the body as they would if they were not consecrated.

The Compendium of the Catechism of the Catholic Church teaches: “Transubstantiation means the change of the whole substance of bread into the substance of the body of Christ and of the whole substance of wine into the substance of his blood. This change is brought about in the Eucharistic Prayer through the efficacy of the word of Christ and by the action of the Holy Spirit. However, the outward characteristics of bread and wine, that is the ‘Eucharistic species,’ remain unaltered.”

Gluten is a type of protein found in some grass-related grains that give bread elasticity.

According to a study by the University of Maryland School of Medicine in Baltimore, almost one out of every 133 Americans suffers from celiac disease. That means that there may be one celiac, or more, in every Catholic parish with more than 100 members in the United States.

That celiac may even be the priest of the parish or the bishop of the diocese, like the coadjutor archbishop of Cincinnati, Dennis Schnurr.

Viable options exist for those who suffer to participate in the Eucharist, but much confusion and some ignorance still remains. What alternatives are there? And how can the Church and her priests better serve parishioners with the disease?

Wittmann has had to watch carefully which side the celebrant’s chalice goes to, then direct Greg to a different chalice. But that changed when the family discovered a low-gluten host developed by the Benedictine Sisters of Perpetual Adoration in Clyde, Mo.

“I buy the new hosts from the sisters, put one in a pyx and take it up to the altar before Mass for father,” Wittmann said.

Because the celebrant handles the traditional wheat host, he cannot touch Greg’s host. So he drops the host from the pyx into Greg’s hands.

But the process doesn’t run as smoothly when the Wittmanns visit a new church and don’t get a chance to make accommodations with the priest ahead of time. Then Greg has to take his chances with a chalice — unless the Precious Blood runs out.

“One thing we trained him to do was a spiritual communion at times, like a few Sundays ago at a different church, when there was no Precious Blood left once we got up there,” said Wittmann. “He just asks Jesus to come into his heart.”

The Benedictines’ low-gluten host — 10 years in the making — is the only one approved by the U.S. Conference of Catholic Bishops because it is made of 100% wheat starch with enough gluten to effect bread.

When tested by an independent agency, the host had only .01% — or 100 parts per million — gluten. Reportedly, most celiacs would have to eat 270 such hosts in one day to become ill.

“We advise people to check with their doctors before trying our host, but we have had no report to us that after consuming our breads anyone became sick,” said Benedictine Sister Sophia Becker, assistant manager of the altar bread department. “Still, some people choose not to use it.”

The hosts last four to six months when refrigerated or frozen. In 2004, their first year of sales, only 2,800 bags of 20 hosts were purchased. Now, the sisters have 3,700 patrons and sold 9,000 bags in 2008.

Barbara Coughlin, 56, a medical consultant for the state of Connecticut, said she thanks God for the Benedictine Sisters every time she receives their low-gluten host at Mass. “Once you are deprived of something, you have so much more appreciation for it,” she said. “I never take it for granted.”

Diagnosed nine years ago, the Kensington, Conn., resident said that the worst part of her diagnosis was not receiving the body of Christ. “Celiac disease is very socially isolating; it makes you feel like a spiritual leper,” she explained.

Coughlin said that when the sisters came out with the low-gluten host, it made all the difference in the world for her. “Once I felt fully in communion with the Church, it was easier for me to accept my celiac disease,” she said. “I truly, truly believe this is a work of the Holy Spirit.”

Celiac Bishop Defends Wheat

Coadjutor Archbishop Dennis Schnurr of Cincinnati was diagnosed with celiac disease eight years ago, but was symptomatic for 30 years. The 60-year-old bishop uses a low-gluten host in his private chapel for daily Mass and ingests a small portion of a wheat host — about a 1/4-inch square — on most public occasions. Any more would cause a negative physical reaction.

Despite the fact that wheat makes him sick, Archbishop Schnurr still defends its presence in the host. “The Church must be faithful to the matter and form of the sacraments as given to her by Christ. If the matter or form is changed, we no longer have the sacrament,” he explained in an e-mail to the Register.

The validity of the matter — bread and wine — to be consecrated as the Eucharist is defined in Canon 925 of the 1983 Code of Canon Law; the host for Mass must be made only of wheat.

According to Redemptionis Sacramentum, issued in March of 2004, the sacrament is invalidated if any substitutes to bread and wine are used. Paragraph 48 of the document states:

“The bread used in the celebration of the most holy Eucharistic sacrifice must be unleavened, purely of wheat, and recently made so that there is no danger of decomposition. It follows therefore that bread made from another substance, even if it is grain, or if it is mixed with another substance different from wheat to such an extent that it would not commonly be considered wheat bread, does not constitute valid matter for confecting the sacrifice and the Eucharistic sacrament.”

Archbishop Schnurr offers some words of consolation. “In cases where a person cannot ingest the smallest amount of wheat or alcohol, I have reminded them of the great consolation that St. Thérèse of Lisieux experienced in spiritual communion,” he wrote. “In the terminal stages of her illness, she was unable to ingest any nutrition, including the holy Eucharist. Still, she expressed consolation, in that she knew that her desire alone was enough to bring Jesus to her.”

Annamarie Adkins writes

from St. Pa