Teenage Wisdom. Eleven years with Celiac Disease: The blessings and the burden

Guest blog by my daughter Melanie, age 13. Written for her public speaking assignment at school.

I’d like to tell you a story about a little girl who had her heart broken when she was only two years old.  This is a story about me, and don’t worry, it has a happy ending.

Ever since I knew how to walk, I had a tradition with my dad. We would walk up our street to the neighborhood patisserie, and sit in the sun to eat croissants.  It was my absolute favorite thing to do. I even had a nickname for the owner of the patisserie, I called her the “con-con lady”, because I didn’t know how to say croissant.

One day , my mum told me that, from now on, I couldn’t go to the patisserie anymore. I cried, and cried, and my mum even started crying with me.

About 6 months before this happened, I was getting very sick. I was throwing up a lot, and was crying much more than usual. And I was tired all the time. In fact, some of the first words I ever spoke were “sick”, “tired”, and “bed”.

At first, my parents figured I just had a virus, and it would go away in time. But after it continued for more than a month, they started to wonder. After four months, my body became so thin, you could almost see the bones. My stomach bulged, because I was malnourished. Even though my parents fed me, I kept losing weight.

They took me to see many doctors, but each one said the same thing, that it would go away soon enough, and it was nothing to worry about.

Finally, came the revelation. My parents took me to see a new doctor, one who specialized in gastroenterology, and a month after my 2^nd birthday, I was diagnosed with celiac disease.

The doctor told us this was good news, something we should be happy about because all it meant was that I couldn’t eat gluten – a protein which is in wheat, rye and barley.  All I had to do was follow the celiac diet. There was no medicine or treatment involved, and he promised us that after only a few weeks, I would feel great.

My parents weren’t sure how they felt about this. They would have to pay attention to every single thing their daughter put into her mouth, and there were so many things that she couldn’t eat.

But, as the doctor had promised, after a few weeks, I was like a different child – always laughing, full of energy, and my stomach felt much better.

Today, I feel very lucky that the doctors discovered my celiac early in my life. Some people only get diagnosed in adulthood, and by that time, the gluten has done permanent damage to their body. Eleven years after my diagnosis, I am in perfect health.

When some people find out about my intolerance, they say: “How can you live without eating bread, or pizza, or cake and cookies?” But I’ve learnt that food doesn’t mean everything. In fact, I’ve now come to the point where I’m able to see the good things that have come with my disease.

When my family comes together for a meal, at Thanksgiving, Christmas, or a birthday, it is a special thing. My grandma will bake a cake and cook lots of food. But the thing that makes it even more special is that she makes the extra effort to make it all gluten-free, so that I can eat it as well.

Some of my friends’ parents have done the same, and it is really extraordinary to see people show their love in such a way.

Sometimes my friends even forget that I have celiac disease, and although it may sound strange, that makes me happy in a way. It shows me that they don’t identify me by my disease, they identify me by my personality.

I promised you a happy ending, so here you have it. Although this little girl’s heart was broken when she was two years old, you’ll be happy to know that, 11 years later, it’s fixed.

For an earlier post: see Celiac Disease: How Wide is the Genetic Reach?