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.

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.")

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.

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.