Diagnosed with an Autoimmune Disease or severe Food Allergies?

5 Actions to Take After You Leave Your Doctor’s Office

Diagnosed with an Autoimmune Disease or severe Food Allergies?

5 Actions to Take After You Leave Your Doctor’s Office

Author holding large black Ironman bag against her chest while smiling.

Hugging my own Ironman swag! To cross the finish line, I had to fuel myself carefully. Learn more about designing your own fuel for long-endurance events.

On August 21, 2016 I had the deep pleasure of putting in a long day of triathlon training and crossed the finish line of Ironman Mont-Tremblant. I can now say, “I am an Ironman!”, and not state wistfully, “Well, I hope after all this hard work to become an Ironman.” It’s now official.

Completing an Ironman race, as complex and amazing and difficult and painful and adventurous as it is in itself, is no small feat for the person with autoimmune disease and food “issues.” My Coach has reminded me all throughout the process of training that it’s important to respect the distance. Additionally, completing an Ironman race with autoimmune disease requires another layer of careful strategizing, testing, responding appropriately, and in my case, creating aspects of my training and fueling that are unique to me.

One of those aspects happens to be particularly challenging for the food-sensitive athlete, and that is nutrition and hydration across many hours. Because processed food, gels, and powdered nutrition have ingredients that make me terribly ill (either immediately, or over time), my Ironman journey necessitated my transformation into Food Scientist, Head Chef, Mobile Nutrition Strategist, and Hydration Manager. That’s a lot of hats (and helmets!) to wear!

Want to know how I fueled my Ironman?  Read more…

Feeding the Tiny Hamsters

Plate of breakfast foods, fruit, coffee, and salt container sitting on a placemat on a wood table

Breakfast anyone? I put salt on nearly everything I ate, because I learned my Paleo-AIP modified diet made my kidney excrete salt at a crazy high rate.

I refer to my Tummy and my Guts as “tiny hamsters”. They cry out when they are hungry, they whine when they are grumpy, and they talk to me when they are in distress. They also smile when they are well fed, and their tiny bodies make up the engine that you see swimming, biking, running, lifting weights, stretching, and sleeping deeply.

Up to June 2015, when I completed my first 70.3 Half Ironman distance race, I had figured out how to fuel that distance and keep the tiny hamsters rocking and rolling without bonking at the end. I used a combination of pureed food in race gel flasks, a gluten-free and dairy free Honey Stinger on the run (just one for over two hours of running), electrolyte fluids such as NUUN, and electrolyte tablets (so I could better control the amount of electrolytes I consume without forcing myself to drink more liquid than I wanted). For the Half Ironman Distance, this plan worked well.

The bigger question loomed large on the horizon. Would the same food, consumed over twice the amount of time and distance, give the same result without GI distress or cramping, and without running out of fuel to complete the longer distance under duress and fatigue? 

From May to August, it was time to test every possible combination of solid foods, liquids, and purees made in my kitchen, and repeat the tests during short, medium-length, and long training days.

Imei’s No-Sh!T Go-to Ironman Foods

Disclaimer: what works for me may not work for you. This is a complete list of what I ate during my Ironman race, and it is not intended to be used without careful customization to another athlete’s race-nutrition profile.

Breakfast: 3:30am  Two pieces of bacon with fat, one egg, Paleo Wrap (made from coconut), one cup of dark roast coffee, two strawberries, small handful of blueberries and blackberries

Author standing on beach, wearing triathlon kit, swim cap and goggles, and holding a baby food pouch in her left hand facing the camera.

My pre-swim food: about 1/2 a pouch of sweet potato puree 30 minutes before take off.

Pre-Swim: about 40 calories of pureed sweet potato with maple syrup

T1: one bite of coconut milk rice ball with salt, 1 piece of bacon, water. I was in the water much longer than anticipated, due to choppy water, wind, and current; I was so cold, I needed to eat something!

Bike:  1) Two pieces of bacon, 2) Three coconut milk rice balls with salt, 3) Five pouches (3.5 ounces each) pureed sweet potato with maple syrup and salt, 4) Two EPIC bison bars, 5) Two Speedfil’s of watered-down NUUN (mixed berry flavor), 6) Six Metasalt electrolyte tablets

T2: Ate remaining coconut rice ball (just a couple of bites), 1/4 piece of bacon (I’m a fat burner, for sure!), and moved the remaining pouch of puree to my running hydration vest for when I felt hungry.

Run: 1) One pureed sweet potato with maple syrup pouch (about 1/2 remaining), 2) Eight blackberries, 3) Four wedges of orange, 4) 18 ounces of water, 5) Approximately 8-10 ounces of Pepsi across three hours, 6) One Honey Stinger,  7) Six electrolyte tablets, with three of them having added caffeine (Salt Stick Brand).

You can get some approximate calories by crunching the numbers:

One medium sized sweet potato = 120 calories

3 Tablespoons maple syrup = 52 x 3 = 156 calories

One pouch  = 120 + 156 = 276 calories

Rice balls = best guess, 125 calories per ball (carbs +fat)

I ate one pouch approximately every 90 minutes, and I ate the two EPIC bars and the coconut rice balls at two planned pitstops (3rd cut off stop on Loop 1 and Loop 2). The NUUN I drank to thirst, and each time I felt hungry, I added an electrolyte tablet because of the humidity, even though it was raining. It was difficult to know how much I was still sweating, so I kept to the schedule of my electrolyte tablet intake.

The overall caloric burn for the race was guestimated by my Garmin watch at about 7600 calories; with the wet weather, wind, and cold, thermogenesis adds an additional 2000-3000 calories of burn just to keep the body warm. It’s safe to say I burned over 10,000 calories. If you want to understand why it is not necessary to eat 10,000 calories while burning that much, read my post about Metabolic Efficiency, as promoted in Dr. Bob Seebohar’s work.

How did I figure out this would work for me? To understand it, I’ll explain where I started.

In The Beginning, There Was A Gel

… and the caramel-flavored GU gel made me puke and then pass out on a lonely path one afternoon. I almost had to crawl home. And that was only after running five miles. That’s just buckets of “NOPE” for me.

Next, I tried Honey Stingers. After all, they are gluten-free! They are sweet and tasty! The first time I tried it, I had terrible side stitches and my stomach made glugging noises with all the water I needed to drink with it. I thought about giving up on them, but I had to admit that they did give me energy. For awhile, I put them back on the shelf, and considered whether I could access them differently. My Coach suggested using a gel flask and just taking a “hit” when I needed it, and thus I didn’t need to drink as much water at the same time.

Over time, I recognized that the best time for me to use any gels at all was during the run event, and I began to experiment with exactly how much hit, water, and time I needed between hits to hold my pace steady yet have a Quiet Tummy for longer and longer runs.

One sunny summer day, as I slogged out my umpteenth 15-17 mile run, I found myself staring at a bunch of blackberries ready for picking. Without thinking, I just grabbed and started putting them in my gluten-free pie hole: one, two, three. And then I was running for an hour without needing to take a hit of gel. Hmm. Let’s try that again. Five blackberries and a swig of water. 75 minutes of running the same pace.

Um, duh! Why not try blackberries for fuel? Low fiber, Nature’s sugar.

Now, all I needed was a solid-food option to fill in the gaps for my long bike rides.

That Youtube Video That Changes It All

A couple of years ago, I stumbled across a Youtube video of Dr. Allen Lim, the man people were buzzing about because he cooked all the food for Team Radio Shack. He made these rice cakes with bacon bits and scrambled egg, and added salt, wrapped each cake in aluminum foil, and the cyclists put the food in their jersey pockets. The cyclists loved it: here was real food that didn’t upset their tummies, was easy to hold with one hand, and gave them fuel.

If it was good enough for them, it was good enough for me, and well worth the trouble of making it myself, since it is so easy to make.

I bought a copy of the book, Feedzone Portables, by Allen Lim and Biju Thomas, which expands the Feedzone concept into all the foods that are easy to handle and easy to digest. I found the recipe that worked best for me – Blueberry Coconut Milk Rice Cakes, but limited the amount of blueberries, and sometimes added dark chocolate nibs. Sometimes I put a little mint in the mix, seeing how it kept my tummy calm.

Just that experimentation allowed me to rethink my bike food, customizing it to exactly the size, shape, and delivery system I wanted. Instead of using aluminum foil, I used resealable silicone pouches; instead of blueberries, I sometimes used blackberries or raspberries.

There was just one last thing left to do.

Making It Fit

In an Ironman race, athletes can pack extra food into Special Needs bags that are accessible during the bike and run events, usually at the midpoint of each. While changing into a pair of dry socks on a wet bike ride, you can munch on a peanut butter and jelly sandwich. I’ve even heard of people arranging to have a family member toss food over a fence, an unsanctioned action that can result in a disqualification, according to the official Ironman rules.

My Coach and I carefully discussed my options. Since I am 95% reliant on my own special foods during a race, it made more sense to carry almost all my food with me, with a backup such as an EPIC bar in my Special Needs bag, since it doesn’t require refrigeration.

Bowl of rice, can of coconut milk, silicone pouches, container of salt, and bottle of maple syrup, sitting on a kitchen counter

I believe I have some of the tastiest food to fuel myself for a long day of swim bike run.

For the bike event, I had a Profile Design bento and three medium sized pockets on my bike jersey. My sweet potato puree flasks were chubby and odd-sized, and a pouch of rice balls even more so. Also, my flasks were tested to last up to six hours in warm weather, and perhaps less in hot weather. Even with some refrigeration, the puree could ferment slightly. Yuck.

During the Experimentation phase (May to July), I would whip up a concoction of sweet potato and maple syrup, and place it by my Computrainer indoors, exposing it to air and seeing how long it took before it began to smell like it was turning. I gathered as much data as I could, and then I tried a couple of things:

  1. Lemon juice as a stabilizer. Voila! The acid from the citrus, which keeps fruit from turning brown, also slowed down the puree from fermenting.
  2. Freeze it overnight. Taking it out in the morning before the ride began, it would be ready in approximately two hours. I’d freeze some for use later in the day, and eat the fresh puree after two hours of riding.
  3. Talk to ultrarunners. Since running has more impact on the gut, many of them were willing to share their ideas of what works, and that is how I came across the idea of using…

*insert clouds in the heavens parting and sunshine streaming down*

4. The Baby Food Pouch. Load ’em, freeze half, and slip them in the jersey.

Pouch of food half way inserted into bike jersey pocket.

Just two weeks before the race, I tested whether I could get all my calories on my bike and jersey at the same time. It fits! It fits! (Did I tell you that it fits!?!)

It fits!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Phew!

Putting It All Together

Author standing in front of Ironman M dot sculpture wearing ironman medal

While it still feels like a dream to me, I love being able to say I am an Ironman.

Creating a nutrition and fueling plan for a food-sensitive, food allergic, and Celiac Disease person is a challenge right up there with the training itself. While others got extra sleep, rest, and relaxation, I spent time in the grocery store, preparing food, and organizing everything for my grab-and-go race day.

I borrowed a friend’s NutriBullet blender and flew it from Seattle to Montreal to Mont-Tremblant, because most hotel suites with full kitchens don’t guarantee they will have a blender (the one I stayed in did not), and even if they do, there is no guarantee it is completely cleaned of cross-contamination that could make me sick.

Cooking without my InstantPot made everything slower, including cleanup time. I have become so dependent on it, I have to think creativity every time I travel, so that my meals remain tasty but also easy to make.

Finally, having all my food with me gave me one less thing to worry about on race day. As it turned out, the weather was cold and miserable, and I needed the extra food I packed, even the EPIC bar I left for myself in Special Needs. In terms of food, I had planned very well. For the part that I didn’t plan so well, you can read about it here in my Race Report (just scroll down to the part about HFCS).

So… what’s next?

One of my passions is to help others create pathways to new possibilities. For people with autoimmune disease, food allergies and intolerances, and medically necessary diets, strategizing a fueling plan is complex. This is where Nutritionists and Registered Dieticians end the scope of their practices, and where sport nutritionists can offer direction but not always a practical solution. I think this where I may be able to help, by customizing the fueling plan with foods that work for the individual, rather than trying to use the available race foods and hope for the best. I think my “next steps” involve working along side a few individuals with these kind of food challenges, and seeing where I can help in the lifestyle and practical side of the equation.

If that’s you, we should talk. You can contact me here in a comment, or email me offline at imei dot hsu @ gmail dot com.

In a couple of months, I’ll start training for my first ultramarathon at the 50K distance, so I’ll have more to add to the conversation about low-inflammation foods for the run. Update: I ran the Mt. Si 50-kilometer trail race April 23 2017 and finished just under six hours. I surprised even myself by taking third place in the Women’s Masters category. And I ate real food, with the exception of sipping some  real-sugar Pepsi with no HFCS  in the last portion of the run, to give me a sugar source that wouldn’t make me sick. 

 

 

Diagnosed with an Autoimmune Disease or severe Food Allergies?

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