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.

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.

Gluten Free Family Meals

So, does your husband eat gluten-free with the rest of your family?

I am asked this question so very often.  Much of what we eat as a family is naturally gluten free; salads, fruit, stir-fry, potatoes, rice & bean dishes, and soups; however, there is the pasta issue.  No matter what pasta I have cooked, it doesn't quite have the same texture as the wheat noodle.  Thus, spaghetti style dishes result in two pans of boiling water, two pasta ladles, two strainers, two serving bowls, and tons of leftovers.  I've learned to cook two different shaped noodles to keep straight which noodle is which.   I am so thankful that my husband, Rick, jumped right on board and has been so supportive of the gluten-free diet and lifestyle changes that come with having a child that is celiac.  

Early on we knew something was not quite right.  Our happy child, a cheerful toddler of two, traveled with us on a family vacation through Europe to visit family and friends.  We worshiped in grand cathedrals and small parishes throughout Germany.  Lit candles in Notre Dame, Paris.  We spent hours circling castles, museums, and churches inside and out.   Many of my friends with toddlers could barely get through a homily in our home parish, and here Nate sat through masses and tours.  Nate was all for the experience.  I think Nate found this all one grand scavenger hunt and just enjoyed searching for the German stone-carved lions; everywhere we went we found the grand beast guarding gates and doorways.  

Two weeks after returning, Nate became increasingly sick.  Grey-green complexion, constant diarrhea, and an immediate change in temperament and personality.  No happy child, rather, one that was irritable and angry with the world.  Family and friends pointed to our parenting or congratulated us that our child had skipped the "two's" and arrived at the "terrible three's".  

Several months later, a series of events led us to the diagnosis of gluten intolerance.  At that time, we also removed all dairy from his diet, hoping that after healing from the gluten free diet, he might reintroduce dairy to his diet with success.  Within days, Nate's gut was beginning to heal.  His bowel issues resolved, his skin returned to a healthier pink, and his constant irritability lessened.  

Years later, I was asked if I had prayed for Nate to be healed of Celiac Disease.  I don't think it ever crossed my mind.  Pray for Nate to be healed from gluten intolerance? Allergies have always been a part of my life, from a toddler-aged anaphylactic reaction to aspirin, to a 48-hour stomach-convulsing response to seafood as a youth.  I just assumed this was an idiosyncrasy of our family gene pool.

I do remember praying for patience and direction.  Before the diagnosis I needed lots of patience to get through the days that were filled with a crying and frustrated child.  After the diagnosis, my prayer energy was directed towards praying for myself and making it through each experimental meal, each gluten free scavenger (grocery) shopping trip, and each pain-induced toddler tantrum.  

I realize that I still don't pray for a miraculous healing for Nate.  Everyone has their cross to bear; this is Nate's, this is mine, this is our family's.  Instead, I have prayed for support, patience, and understanding. For some reason, my prayers have not been focused on eliminating the disorder.   In one way, my prayers have been answered, through the easy acceptance of our new lifestyle, through close friendships that have developed with supportive celiac friends, and with compassion for helping Nate travel through childhood with a positive attitude.  

Macaroni and Cheese

Macaroni and Cheese.  I was crying over macaroni and cheese.  It was late, my husband and I were putting closure to the day when I burst into tears.  I wanted to go back to the time when I could cook anything for our three year old son, Nate.  

Macaroni and cheese, cheese pizza, and grilled cheese sandwiches were his favorites.  After a rapid decline in his health, our pediatrician recommended an immediate removal of all casein and gluten from Nate's diet.  Immediately.  It seemed like everything that Nate ate was wheat and cheese.  Later I learned that the body will crave the very thing that causes the pain.  There is this cycle of pain, self-creating endorphins, relief, craving, pain, soothing and repeat.  Nate had  been medicating himself with the very foods that were creating the irritation.

Life became very frantic for a period of time.  I would search the grocery store shelves and everything seemed to be filled with modified food starch, barley malt, natural flavorings, or just plain old WHEAT.  Grocery shopping became a very emotionally draining adventure, especially with a preschooler who was confused about the sudden ban on his favorite foods.  Tears would come to both of us and we would leave the store with vegetables and fruit, a can of tuna, and a bag of rice.  

A few days after the tearful "Macaroni and Cheese" night, I also realized that Nate would be banned from receiving the host at mass.  At this time, in 1999, there was no approval for low-gluten wafers in America, and so in a depressed state from the inability to find a simple box of pasta and yellow flavored cheese powder, I was circling further into sadness as I realized that receiving the Body of Christ was also going to be denied.  In this mind set, I did not have the sense to ask questions.  I did not know where to ask.  Even the internet was not an option, as it was just beginning to burst forth with search engines and research files.  

This was a very spiritually empty time in my life.  I did not turn to God.  I was not angry.  I had nothing to rejoice.  I was just very empty and tired.  Nothing tasted good.  When receiving Eucharist for myself, it was a very solemn moment reminding me of what seemed a very bleak spiritual future for Nate.  

To me, the world was ever becoming smaller and darker.