Sunday, November 8, 2009

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.


  1. Wonderful insight. Being a teen is hard enough. Any support groups out there?

  2. I just discovered your blog. We have 5 kiddos; our 4 year old was diagnosed at age 13 mos. Our 1 year old twins are gluten free until they are 2 when we'll introduce gluten and get them tested. We are devout Catholics and I appreciate your support!

  3. Kerry . . . Thanks for your encouragement. After Nate, we were so cautious with our next child. Would it be a blessing to have both Gluten-free, or a burden. It's out of our hands either way.

    Thanks for following the posts, I'll keep adding with the hopes of building a strong community to support our Catholic Celiac children.

    Blessings to you.