Sunday, October 25, 2009

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.

Saturday, October 17, 2009

Catholic Celiac's and the Priesthood -- Do you pray for your son to become a priest?

Nate has been celiac since the age of three. About second grade, the age of his First Communion, several classmate's parents were asking each other if they were praying that their son would become a priest, or daughters to enter the Religious Life and become Sisters.

I hadn't. Celiac's can't become priests. (Well, I will have to take that back, my husband has a musician friend, a priest, who is celiac. This priest was not diagnosed Celiac until after many years in the priest hood.) Since becoming a priest was not an option, I had focused my prayers for Nate on other topics.  

Just recently, the topic came up again. Nate was going through confirmation, and the youth leader had asked if the teens had prayed about entering the Religious Life. I am not sure if Nate felt a stirring to consider, or if he had heard his friends talking about the options of being a Sister or Priest. In a chat with Nate, he asked where I had learned that he could not be a priest.

From the Vatican, to the Presidents of the Episcopal Conferences, the following was stated:

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.

Since Nate knows he is Celiac, he will never be admitted as a candidate for the priesthood. (Chances are, he will never be drafted for the military either. The military does not want to risk medical complications if gluten-free rations were not available.) However, there are many other positions in the Catholic church that might fascinate him if he should decide to follow a vocation to serve. Nate has a love for justice . . . maybe he could consider being a Cannon Lawyer or work with the tribunal. Nate enjoys reading and is starting the training for Reader and Eucharistic Minister. If Nate desired, he could become a religious scholar and help teach in a seminary to train priests.

My prayers.  

My prayers are not for my son to become a priest. Nor are my prayers requesting that the Catholic church allow priests with Celiac disease. My prayers are based on Micah 6:8; that Nate acts justly, he loves mercy, and that he walks humbly with God. I continue to pray that Nate will always remain close to God and that he will love the Catholic church. I pray that he finds ways to serve, no matter what time of day, the occupation or vocation he enters, and no matter if he is single or married.  I also pray for the current priests to be understanding and compassionate in their guidance of celiac Catholics, especially young celiac children searching to understand their faith.

Lord, hear our prayers.

The following is a letter dated March 10, 1996, and was sent to the Presidents of the Episcopal Conferences from the Vatican. It represents the official position of the Catholic Church with regard to gluten and the Eucharist.
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.

  • II. Concerning permission to use mustum:

    • A. The preferred solution continues to be Communion per intinctionem, or in concelebration under the species of bread alone.
    • B. Nevertheless, the permission to use mustum can be granted by Ordinaries to priests affected by alcoholism or other conditions which prevent the ingestion of even the smallest quantity of alcohol, after the presentation of a medical certificate.
    • C. By mustum is understood fresh juice from grapes, or juice preserved by suspending its fermentation (by means of freezing of other methods which do not alter its nature).
    • D. In general, those who have received permission to use the mustum are prohibited from presiding at concelebrated Masses. There may be some exceptions however: in the case of a Bishop or Superior General; or, with prior approval of the Ordinary, at the celebration of the anniversary of priestly ordination or other similar occasions. In these cases, the one who presides is to communicate under both the species of bread and that of the mustum, while for the other concelebrants a chalice shall be provided in which normal wine is to be consecrated.
    • E. In the very rare instances of lay persons requesting this permission, recourse must be made to the Holy See.

    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.

Sunday, October 11, 2009

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.