Facing Mount Kilimanjaro – with Celiac Disease

in Celiac, Features
Published: August 21, 2014
Kate Johnson & Melanie - 2Mother and daughter at the 5,895-meter peak.

AT THE TOP of the mountain, trailing behind Melanie, I point my trekking poles to the sky triumphantly and bask in the massive feeling of accomplishment that washes over me. For anyone, setting foot on Uhuru Peak is a feat to be proud of. But standing on top of the “roof of Africa”, with 15 years of celiac disease behind us, I felt a unique triumph of parenthood.

From Day 1 of the diagnosis my husband and I had deliberated over the boundary lines of protection. Our first instinct in those early days was to rid our house of all foods that had made our daughter so sick. Suddenly, the world was a dangerous place. We would create a safe haven in our home – somewhere Melanie could eat without worry. We cleansed and purged.

But a few days later in playgroup, wandering over to the snack table when my back was turned, she had scooped up a handful of forbidden snacks and swallowed them with delight. This is the real world, I realized. She needed the tools to live here.

So began our quest to help her navigate through the real world while remaining fully integrated in it. Our philosophy has been to look for the solution and never let food, or lack of it, get in our way. Despite her dietary restrictions, Melanie has developed a love for travel and cuisine. Moving into her teens she has taken increasingly more control, making her own inquiries about parties and school trips, expanding her palate to include salad (finally!), and developing a flair for gluten-free baking.

Above all, Melanie has learned the art of going with the flow. This is truly an art because it involves being prepared yet carefree, accepting what comes but having something to fall back on, hoping for pasta near the summit of Mount Kilimanjaro (which she got), but packing half a ton of energy bars just in case.

Like so many parenting choices, the decision to tackle the slopes of Mount Kilimanjaro with a teen who has celiac disease required a careful assessment of risk versus benefit. A gluten “attack” was a real possibility that could never be completely ruled out, but we did everything possible to ensure against it. We were also most fortunate that our head guide, Julius Minja, and his team never once made me feel like my vigilance was annoying, and graciously accepted the extra work involved in keeping Melanie healthy.

Besides careful research, planning and packing for the trip, we had laid down a 17-year foundation of flexibility, open-mindedness, and adventurousness in our daughter. It led a girl and her once fearful mother to crowning success 5,895 meters above sea level – in the clouds of the African equator.

Note: This trip was not promotional; the author paid in full, and the tour company, Chagga Tours, was not aware of this article.