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.

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.

Does it Get Easier?

Does it get any easier?  

Waiting for our children after Religious Education, a mother of a three year old toddler who was recently diagnosed with Celiac, shared her frustrations.  Caleb was cranky on alternating days.  His disposition was cheery until 18 months, and then the “terrible two’s” hit.  The irrationality seemed to happen shortly after meals.  

Now Caleb was mellowing, but mom’s days were filled with reading labels, convincing Grandma that barley malt on the bottom of the cereal ingredients will cause irritation, and cooking double the meals.  

When does it get easier?  For each family it will be a different time frame.  And then, as I counseled with her, it is going to come and go.  Just when cooking the meals becomes a routine, you have your favorite recipes, you know where to search for your favorite gluten free foods . . . the grocery store drops a line of gluten free products, or your child decides to boycott all bread!  

The past two years have been our best years following the diet.  Nate has had the ability to ask questions about his food, so he has taken on the responsibility for speaking up, or at least pulling aside someone to check on ingredients.  He knows how to get his pix ready and who to give it to before mass.  Nate has also started becoming aware of being hungry and asking for food.  Between the ages of three and eight, Nate just did not sense he was hungry until he was starved.  These past few years have been very liberating for all of us.  

Right now, Nate is on the verge of becoming a teenager; he is counting the days until his thirteenth birthday.  I am sure, if asked, he even knows the exact number of days until that “twelve” turns and becomes “--teen.”  With this past year, his diet has changed, partly because his circle of socialization has broadened, and his friends are now “expanding” his view of “food.”  Also, whether he likes the food, or not, he is more aware of what others are eating and whether his food looks like his friends.  

Now, we have had several conversations about what are “real” friends, and who supports each other in a positive manner.  Our close knit friends seem to come from our church family, our extended family, and those from our “schools” albeit classes, homeschool groups, or club involvement.  Even with all of this knowledge, Nate is still aware of impressions made with new acquaintances.  He is sensitive to being the only kid bringing a sack lunch, having to turn down eating a handful of Oreo cookies as fast as he can,  or bringing his own pizza to an event.  

When will it get easier?  I believe that it continually becomes easier; soon, for Caleb, he will have more developed communication and be able to request his favorite foods or explain when he is feeling irritated inside.   For Nate, he may reach a point that he wishes to take the chance to taste all the party foods and then relearn how it causes his body to react.  Like everything else in the teen years, it will probably be an interesting roller coaster before it all evens out.

For myself, all too soon, I will be baking only one type of cookies, wishing for the days that I was mixing gluten-free flours and washing the mixing bowl between batches.