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 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.

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.

For Daily-Gluten Free Bread, We Give Thee Thanks, O Lord

Gathered around the table, I was teaching our three year old a round that had been sung at the table in my family, both in my childhood home and at larger family gatherings. With enough family members we could actually keep the round going for several cycles, but with Nate and myself, the goal was to learn the words and the melody for the first attempt.

For health and strength and daily bread, we give thee thanks O Lord.

Before the last note could end, Nate's response was immediately, "But I don't like to eat bread, mom!"

Umm. I had not thought of it. Here we were asking for blessing on a food that Nate found disgusting. Every attempt, at this point, to make homemade gluten-free bread had turned up moldy in a day due to our humid climate. The bread from the shelves at the store were vacuum packed and the consistency of sawdust. The one convenience bread that was edible was a gluten-free toaster waffle. We started using it for everything. Hotdogs rolled up in a waffle. Waffle peanut butter and jelly sandwiches. Pizza sauce and almond cheese, on toasted waffle. Waffle bun hamburgers. Tuna fish on waffle.

At the age of three, right after Nate's diagnosis, nothing was meeting his expectations of bread. Twice a week, Nate was use to standing next to me at the counter and making home-made whole wheat bread. As the new gluten-free baker, I would sneak into the kitchen to attempt loaves of bread made from bean flour, tapioca flour, two types of rice flour, and xanthum gum. When the loaves repeatedly failed, I began to find it hard to plunk out a gluten free brick before one hopeful and disappointed little boy.

Singing this grace, my image of bread had continued to be the crusty, warm loaf of rich wheat bread that had come from my mother and grandmother's ovens. Nate's image of bread, was crumbly sand-textured, vacuum-packed slices of rice flour bread or a hard bean-flavored rice brick. I imagined farms of waving wheat and healthy children running through the fields. Nate was just trying to become healthy and avoid any contact with the golden-grain poison.

Quickly, I thought about the lyrics, For health and strength and daily ____ we give thee thanks, O Lord.

What were we thankful for?

For health, yes.

For family, yes.

For our jobs, chores, school, friends. Yes. Yes. Yes.

For bread. Bread is a staple of our life, a symbol for all that we eat. Bread is just one of the foods we eat to live. Food.

As simple as that. What if I substituted food for bread?

Humming through the lyrics, while we munched through our gluten-free meal, I checked the rhythm. For health and strength, and daily food we give thee thanks, O Lord.

It worked! Following the meal we tried the song again. Again, no attempts to even replicate a round, but this time to make it through the grace with thanksgiving for all that God gifts us each day.

Thank you Lord for the food you provide for us.

(Years later, I learned that my "original" idea had long been a common version of the same song. My childhood family had used "bread" while other families had used "food.")

The Rest of the Family: Non-gluten-free Catholic Family Members

“Why is everything about Catholic Celiac’s about Nate? Why don’t you ever write about me?”

Emily.

She’s not celiac. We’ve had her tested twice, once as a toddler, and then again this past year when she complained about stomach ache’s after every meal. Maybe I am super sensitive, but I think my eagle eye has been turned on from the moment she was born, always looking for similar or different signs of gluten intolerance. Nothing. Or at least nothing, yet.

First Eucharist felt like it was a breeze with Emily. Emily was in a class of two. The big issue for us was conducting the sessions in dual languages and honor four cultures; Chinese, Deaf, Catholic, and American. Emily is hearing, bi-lingual, and very good friends with an adopted Chinese Deaf friend. She chose to take classes and celebrate with the Deaf community and was welcomed as member of their community.

On the special day, the two First Communicants, Emily and Xang, signed the psalms in American Sign Language, the parents each read prayers and signed a song. Nate and a cousin of the other communicant, acted as usher’s, and at the receiving of the bread, Fr. Pat gave the low-gluten wafer to Xang. Oops, a little miscommunication or over-site, but moments later, Nate processed forward to shake his head over the wheat wafer and receive a blessing before proceeding to the cup.

Emily wants her own pyx. We have made the ritual of the low-gluten-pyx a special occasion and she felt that she was missing out on something really important. Was it something that Deaf Catholic’s don’t do? No. Something that she could have for the hearing church? No. Could she just have a pretty pyx like Nate with her own wafer? Please?

So much of Emily’s life revolves around being in a gluten-free family, it is often easy to overlook what life looks like through her eyes:

• We arrive at the weekly church community dinner and the menu was changed at the last moment, instead of expecting Nate to exist for three hours of youth group solely on iceberg salad, we all bundle up to head home for a quick dinner before returning for Religious Education. Emily misses out sitting with her classmates.

• Pizza parties often require early arrival so that we can heat a frozen gluten-free pizza before youth group begins. Emily is willing to hang out, even though it will be a few more years before she gets to feast with the teens. We head home for left overs or soup.

• We bring donuts to church for the after-church-donut-social, only to find out that this Sunday is a donut-free week. Nate munches happily on his donut, Emily mumbles about the texture of the donuts and would prefer to skip his offering of a few chunks of maple frosted pastry.

I can focus on all of the negative experiences that we sacrifice and suffer through, or I can approach each of these with a positive attitude and create moments for life lessons. Each of us has our own cross to carry, Nate’s is journeying through life on a gluten-free diet. Emily needs not to make hers a sacrifice of her brother’s, rather she will have her own cross to bear. My cross is not Nate’s diet.

The way I approach the conflicts and inconveniences can be a witness to them on how they can make sacrifices with a joyful heart. It has not been a quick turning of the heart, but a conscious choice each day.

For Emily, each time she approaches the altar, I need to remember to make this moment for her a moment to receive, no matter if it is with a special pyx, or from the community plate. This is Emily’s moment with Christ.

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.

Bread of Life -- Thanksgiving for the Low-Gluten Wafers

Gluten-free bread has become the bread of our lives. We make it from scratch, we buy it in bulk to put in the freezer, we go out of our way to stores that carry our favorite brands, and somedays we just eat our least favorite brand to satisfy hunger.

The Eucharist is also our Bread of Life. This is an imagery that is so prevalent in our liturgy; it's in our scripture, our prayers, and in our music. Of all the music that we sing, John Foley's One Bread, One Body holds a special imagery for me.

One bread, one body, one Lord of all,

One cup of blessings which we bless.

And we, though many throughout the earth,

We are one body in this one Lord.

(John Foley, Oregon Catholic Press, Breaking Bread,

http://www.youtube.com/watch?v=EYlJC26-Ch0 )

This great table that we gather around, no matter where we live around the world; no matter what car we drive to arrive at mass, or whether we walk or bike; no matter if we are mothers, sons, fathers, or daughters; no matter if our skin is tan or beige or peach; no matter if we eat a wheat wafer or a low-gluten wafer, we are the body of Christ. We are One body.

What does that One Body look like beyond the table. There are divisions, just look in the fellowship hall; someone forgot to bring the promised gluten-free pasta for the Italian dinner, so Nate and the other celiac parishioners get salad and sauce. Gladys, with her diabetes, skips the desert, or at least only enjoys one forkful. Steve is avoiding the wine, as he has been battling with alcohol and even one glass can become addictive. The Ingalls family is vegetarian, so they bring their own veggie sauce. Baby David is not yet eating solids, so his dinner comes in the liquid form from behind a discrete blanket thrown over mom's shoulder.

Leaving the dinner, each of us goes home to find different foods in our cupboards. For some, it is rice and beans, others enjoy the meat & potatoes, and for another family, the cupboard looks bare until the food bank opens Monday evening. If we were truly One, I wonder if all of us would go to bed content.

It's a circle that we live. When we partake of the Body of Christ, we are to live more fully as the Body of Christ. As we live out that life, those around us are more fully blest, desire to find out our motivation, and seek to find Christ. They in turn, come to the table that gives life. It is simple acts that we model of Christ's that bring us closer and inspire us to return each week and live more holy lives.

Blessed Mother Teresa is quoted as to having said, that we are to find the poorest of the poor in our own communities to serve. We all don't need to leave our homes and travel to India to serve in order to live holy lives. The Body of Christ is around the world and in our own towns, and in our own parishes.

For our family this week, we will pack a bag for the food bank; packing it to provide for those that are the poorest in our own community. We will try to think of various members of the body of Christ and choose foods to support them; a bag of rice, a box of gluten-free cereal, potatoes from the garden, and something for babies that are just starting to eat.

It's bread that brings us life and energy to live. It's the Bread of Life that brings the Catholic Christian community together each week at the altar. It's the Bread of Life that moves within us to live in the example of Christ.

Each week, Nate is able to walk forward, reach out his heart to ask Jesus to lead his life, and receive in out stretched hands the body of Christ.

I am so thankful that we have low-gluten wafers that allows even more Catholics to gather around the altar. In one more way, we are all a part of the Body of Christ.

Where are the Pink-Frosted-Rainbow-Sprinkle-Donuts?

The Sunday following Nate's Celiac diagnosis, I realized we were going to need a new routine to our Sunday mornings. In the past, we would show up for choir rehearsal with Papa, and walk the gardens around St. Ignatius. An hour later we would head in for Mass, leave mid way for Children's Liturgy of the Word (C.L.O.W.), return to Mass, and then afterwards head over for the pink-frosted-rainbow-sprinkled-donut. Rick, my husband and Nate's papa, would take time packing up after choir and track us down in the community center amidst all of the other sugar high youth bouncing between the tables.

How do you tell, at three years of age, that what was the post-mass highlight was no longer in the diet? We were still trying to get across the "yucky-wheat" story and making connections to how his tummy felt sick and would soon feel better. Sitting in the community center amongst the gluten laden feast with no options was the equivalent to rubbing salt into a wound. For myself, personally, I loved the apple fritters, but I could do with out, and preferred to survive the morning minus the all-out temper-tantrum and hundred averted eyes that I predicted would occur if we could only look at pink-frosted-rainbow-sprinkle donuts.

About three years later, Nate suddenly asked about the pink-frosted-rainbow-sprinkle donuts, "What ever happened to them?". I had so successfully changed our family routine, Nate had forgotten the experience of the community room and donut feast. Our first couple weeks, we "remembered" an extra special treat that we had packed in the car. One week, having forgotten to get a special treat, we made a rare trip to the store on a Sunday. (I have a long standing tradition, since college days, of not shopping on Sundays in the hopes that my avoidance would allow others a day of rest.) There in the natural food section, we chose between dry cracker cookies and rice cakes with tamari flavoring. Not much of a "treat," but at least we were distracted.

Those early days were hard. My community of support was sitting on the long cafeteria benches often talking of the three "P's"; parenting, prayer, and pregnancies. I longed to join my friends and catch up on menu ideas, park trips, and how to live through the preschool years. My needs for community were as lean as my gluten-free dinner menu ideas.

Whether it was from sheer will or exhaustion, I had no tears to shed, yet I was quite sensitive to eating gluten items in front of Nate, or taking him to activities that were based around gluten food item. In those preschool years, I could not find any local sources for gluten-free donuts and just gave up the search. Fast forward to Nate's inquiry for the disappearing donuts, and I turned to the newly expanding internet to check out more national resources for donuts.

Typing a Google search, "gluten-free donuts," up popped Kinnikinnick. (www.kinnikinnick.com/) Double click on the website, and there appeared a Canadian gluten-free bread factory that featured six different varieties of donuts; maple frosted, chocolate glaze, vanilla glaze, plain, cinnamon sugar, an chocolate frosted. No pink-frosted-rainbow-sprinkle-donuts, but more gluten-free choices than I imagined possible.

But would these taste like sawdust? I ended up ordering one of each, plus bagels and pizza crusts. At this point, Nate was wanting to go to Coffee and Donuts because his Cub Scout buddies were all climbing on the chair racks and chasing each other around the hall. This sounded like the epitome of boyhood fun. The donuts arrived and we feasted. We opened all of them up, tasted each variety, declared them all good, and decided the cinnamon sugar were GREAT! Together we re-packaged the donuts into individual zip-lock baggies and froze them for the coming Sunday and succeeding weekends.

Flash-forward to Sunday, mass was complete, Nate came running up to ask if he could run with the other boys, AND could he take his donut to eat with his best friend Sebastian? It's one of those moments that I snapped with my magical memory camera . With all the hard heartache of what seemed to be constantly saying "no," this time I was able to offer a yes. Nate's beaming face, bright cheerful eyes, and appreciative grin are etched in my mind forever. Gone were the toddler-tantrums, he now understood about Celiac and being gluten-free.

Nate would have gladly gone to donuts and had nothing while playing tag around the benches, yet the socialization amongst our church friends was so much more enriched by a simple sugar donut.

Is there a Patron Saint of Celiac's?

"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.

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.