Facing Mount Kilimanjaro – with Celiac Disease

in Celiac, Features
Published: August 21, 2014
MountainAt 3,900 meters, the landscape turns barren.

AFTER ALMOST a week of ascending Mount Kilimanjaro, sleeping in tents on her slopes and eating meals prepared by our team of cooks, porters and guides, I was not alone in feeling a little fragile.

One by one our climbers had faltered. Nausea and diarrhea began as early as Day 2 for some of us. Our water was from mountain streams, boiled and treated with tablets, and that iffy sterilization, combined with the extreme altitude and unfamiliar food had taken a big toll. Yet Melanie was feeling better than most of us.

In the months leading up to the trip I had worried endlessly about gluten, fully aware that climbing Africa’s highest peak was not a place my daughter could afford to run out of food. The tour company’s website said they could accommodate food allergies, and when I e-mailed them, they seemed more than happy to oblige. I decided that a few pointed questions would help me determine whether this was going to work out.

I learned that all food for the seven-day trek would be carried up the mountain by our porters, and the menu they sent me showed, not surprisingly, that gluten was a major player. I decided to jump straight in with the fact that Melanie could not eat their bread, pasta or pancakes. “Could we bring our own substitutes and have the gluten-free pasta cooked in a separate pot?” I asked.

PortersPorters' baskets held gluten-free food.

This was no small request. It meant a heavier load for the porters (we could not possibly carry any extra weight, given the altitude), more propane and water for cooking, and more dishes to clean. But their answer was “of course, this won’t be difficult for us, we are used to this”.

The trickier step was to dig down into the ingredients of all the soups, pasta sauces and stews on the menu. I could tell from our e-mail exchanges that language might be a barrier here, so I decided to save these questions for our face-to-face meeting the day before the climb. To cover my bases, I would bring one main gluten-free meal per day (pre-packaged curries that could be boiled in their plastic pouches) along with: safe pasta, instant oatmeal, and corn tortillas, as well as gluten-free energy bars and trail mix. And so, the adventure began.

The two cooks who accompanied our group spoke little English, so once we left I had to trust that the situation had been adequately explained to them.

Our initial dinner brought a first reassurance, when soup was served to the rest of us, along with a “special” bowl for Melanie. In an odd sense, breakfast was even more reassuring – the porridge, which I had been told would be fine, was immediately whisked away because it contained wheat. (I was so glad we had brought the instant packages, which we’d intended as snacks.) Each day, as we broke camp and plodded slowly and steadily upwards, our team of porters whizzed past us balancing baskets of fruit and cartons of eggs precariously on their heads. As we inched up steep rocky trails and along precipitous ridges, I had to stop myself from envisioning our precious gluten-free supplies toppling over the edge, never to be seen again.

On and up the mountain, the cooks produced “pancakes” from our tortillas, and gluten-free pasta arrived alongside everyone else’s. French fries were made exclusively for Melanie (much to the indignation of the other teenage team members, who only got pre-packaged mashed potatoes).

I admit that I held my breath more than once (I mistakenly thought I’d brought spaghetti and they served her fettuccini), but the lesson I’ve been learning these past 15 years is to be vigilant but not afraid and, above all, not to let fear reign in my daughter’s quest for freedom.

As our altitude increased, our appetites receded (I lost six pounds on the trek), but thankfully Melanie’s only complaint was heartburn. Was that from gluten?

The thing about “gluten gut” (as one of our celiac friends calls it) is that I don’t know how it feels. Yes, Melanie has semi-regular stomach complaints, but then so does my 19-year-old niece who does not have celiac. We know of only two definite gluten contaminations in the 15 years since her diagnosis – both of which resulted in a spectacular four hours of vomiting. But what about trace contamination? We’re careful at home, but we also love to eat out at accommodating restaurants. As far as I know she has never suffered from our adventures, but the last thing I wanted was to deal with a Kilimanjaro celiac crisis.

Before the trip, I had searched the web and found a celiac blogger who had scaled the mountain. “Getting to the top of Mount Kilimanjaro on that last day was the hardest thing I’ve ever done,” Stephanie Diamond, a runner, wrote of her trek in 2009.

“The altitude can mess with your digestive system in ways similar to gluten contamination and by summit day I had no appetite at all,” she told me in an e-mail. “I was completely fine once we started descending, though, so I’m sure it was the altitude, and not gluten, that got to me.”

Next: Tired but triumphant on the “roof of Africa”