Facing Mount Kilimanjaro – with Celiac Disease

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By:
in Celiac, Features
Published: August 21, 2014
Kate Johnson and MeanieKate Johnson and daughter Melanie Babinski at 1st campsite.

In the early days of diagnosis, who would have thought it possible? But my celiac daughter and I were closing in on the top of the mountain, the roof of Africa.

JUST AS the sunrise begins to melt the darkness at the top of Mount Kilimanjaro, my 17-year-old daughter Melanie crests the mountain’s first peak, Stella Point, a few steps ahead of me on the final leg of our 5 ½-day ascent to the summit.

We’ve climbed to just shy of 6,000 meters above sea level, and are nearing the end of the seven-hour “summit assault”. Trudging forward into a wicked wind chill, at sub-zero temperatures, our final 1,000 meter climb has been a brutal, grueling toil.

Tears that hours ago froze on my cheeks start flowing again as I cling to my daughter, emotionally overwhelmed, physically spent, and yet struck with wonder and relief as the sun tinges the ancient African glacier pink.

Our team of 13 North American friends has labored through the frigid darkness since midnight, struggling against the increasing effects of altitude: nausea and vomiting, crashing headaches, dizziness and, for some, even hallucinations. Yet here we stand, all 13 of us, on top of the world’s highest free-standing mountain – “the roof of Africa”.

For me, the next hour, from Stella Point to Kili’s true summit, Uhuru Peak (5,895 meters above sea level) will be an exercise in pure willpower. With her pack on her back, water bottles frozen, and headlamp paling in the morning light, Melanie turns frequently to check on me as I struggle for every breath.

How far my brave girl and I have come – both literally and in our lives!

MelanieGiant groundsel plants tower over Melanie.

AS A TODDLER, Melanie endured months of illness until, at the age of 2, she was diagnosed with celiac disease. While it was good to know the cause and at last have a diet that would keep her well, I had mourned what I feared would be her loss of freedom; I worried about her life becoming focused on restriction.

That was in 1998, in the dark ages before the rise of gluten-free products. My first post-diagnosis trip to the grocery store left me with a nearly empty cart and a growing sense of panic – there’s something primal about a mother not being able to provide food for her child. I grieved her new lack of choices and my new duty to deny her all her favorite gluten-filled treats. How do you explain to a 2-year-old that she can no longer have her Sunday visit with “the croissant lady” at the bakery down the road?

As a medical journalist I researched, interviewed doctors and attended celiac disease conferences. When Melanie was 11, concerned about her morale, I began writing a book, along with a child psychologist, about finding liberation from the psychological limitations of the gluten-free diet.

The introduction began: “My daughter with celiac disease worries about ‘looking like a freak’. She packs two bags for a pajama party – one filled with her overnight stuff and one filled with food. She was the only kid who had to bring her own lunch to her school entrance exam, where a meal was provided for everyone else. Her class’s upcoming two-night trip weighs heavy on her mind because we’re not sure what, or how, she is going to eat. Sometimes she simply prefers to decline all food rather than draw attention to her condition.

“As her parents, we try to respect her choices. After all, she’s a nine-year veteran of living with celiac disease. But then again, she’s only 11 years old! A whole life of avoiding gluten stretches before her. One day I dream of seeing her follow in her parents’ footsteps, by slinging a pack on her back and embarking on a trek around the world.” The book never found a home – I was more focused on parenting than publishing – but a vision remained permanently etched in my heart: one day I wanted to see Melanie, backpack laden, heading off into a world of exploration and adventure.

Now, with the Tanzanian dawn hitting Uhuru Peak’s famous green and yellow sign up ahead, my vision is miraculously coming true.

Next: Fear of running out of gluten-free food