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.

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.