Celiac Disease: Debugging Your Own Research Life With Blameful Postmortems

19 Apr 2018

Arriving in Seattle in May 2017 for my first Microsoft Research internship, I began to feel ill every day. Waking every morning with severe stomach pain and not sleeping well (nor, at all) because of Restless Legs Syndrome, I would wake up and have to work extremely hard to get showered, get ready for work and make it into the office by 8h30. Everyday after lunch, I would experience extreme fatigue and gastrointestinal pain and would fight to stay awake, to keep working until 17h30 before I could go home.

I set out to figure out why I was feeling so awful every single day and I applied the technique that I use every day to solve problems in my field of research: the scientific method. I set out to try to identify the cause by eating the same exact meals every single day, while removing a single element from the menu, one per day to identify the cause. Thankfully, Microsoft’s computerized ordering system at their cafe in Building 120 served helpful. I knew I had a problem with lactose, but given I had been heavily dosing with lactaid every single day, I eliminated both the lactaid and these cheese intake immediately. I set out to eat the same Italian submarine sandwich every single day, all while removing a single item per day to try to identify the root cause of why I kept feeling so shitty. At this point, I had no clue that bread would be the problematic factor, because living in Paris and Belgium, it was a core component of my diet.

After around the 7th or so day, I was down to a wheat submarine sandwich with only salami. I still felt ill: fatigue, gastrointenstinal problems and the inability to think. I concluded that the problem had to be related to the bread, and it was only at that moment that I realized that celiac disease (or a gluten insensitivity) could be the potential cause. Setting out to prove it, I ate gluten-free completely for the following weeks and after two weeks of being completely gluten and lactose-free, it was as if a mysterous fog that had been pervasive over my entire life had been lifted: I could think clearly, I slept well, and I woke up feeling better than ever. I finally could think, could research, could do my work.

Living with the disease has been problematic, but mangable, in many ways:

  • Conference travel becomes a lot harder. Industry conferences that I’ve attended have only been able to accomidate either my lactose restriction or my gluten restriction, and therefore I resort to eating outside of the conference or avoiding industry conference all together if I think it’s going to be more problematic than the benefits of exposure will yield;
  • ACM-related conferences have been more than willing to accomidate both restrictions, presumably because conferencing is a fact of the academic life and conference have to deal with a variety of dietary restrictions from a variety of different cultures;
  • Living in Lisbon, Belgium and Paris has been a curse because so much of the culture is based around products that contain both gluten (bread) and lactose (cheese). In France and Belgium, my flutecy is usually enough to allow me to get a specific meal that’s safe, but given I’ve only lived in Lisbon for 8 months and I barely speak Portuguese, I end up mistakenly having gluten almost every other day unless I eat boiled fish with wine every day;
  • International long-haul flights can accomidate you, if you let them know well in advance – but, smaller flights within Europe, you’re basically better off not eating and getting food before/afterwards;
  • Prefer Airbnb over hotels for conference travel where you have a kitchen and can cook your own meals;
  • Avoid conference events where you are at risk for making a mistake with either a.) drinks or b.) food;
  • Minimize travel to stay where you have food you can eat. Surprisingly, because of the amount of wheat in the Italian diet, Italy has proven to have many options, where France, is less good;
  • ASK. I once ate sushi for a month thinking it would be fine only to find out the a.) tea I was having at the sushi joint had gluten, b.) California Rolls have fake crab meat made with gluten. and c.) the Soy Sauce has gluten in it. You need to ask. ASK.

Learn to recognize the symptoms and adapt accordingly. For me, accidental cross-contanimination leads to the following:

  • Fatigue. Unable to get out of bed: check. Unable to even walk down the street for a coffee: check. Fatigue is a big sign that you’ve messed up with your diet and you just need to struggle through it until you feel better in the following days. I usually use these days to read papers, watch television, and generally avoid people in my room until I feel better. Surprisingly, the isolation of coding alone in your room with headphones in bed is a good remedy for the fatigue because it allows me to hyper focus on a single problem and push forward on it;
  • Gastrointestinal problems. Standard issue, double down on probiotics, Gluten-processing natural enzymes, Omega-3, and Zinc. This is not a medical recommendation, but something that seems to help me get back into the swing of things once I’ve been accidentally poisoned;
  • Rashes. Rashes all over outer part of the theighs, inner legs, between the shoulders and elbows on the arms. Looks like a bunch of small red dots that might be unrelated, but are related to your body fighting;
  • Brain fog. The worst. Every find you can’t read a paper for some reason you don’t know? Yeah, probably gluten. I’ve read the CRDT paper about 100 times, it’s core to my research, and on a day where I’m suffering from a gluten event, I find I can’t even understand what a semilattice is. Know the feeling, associate it with the other symptomes, and put on your favorite TV series. Ignore it, it will pass;
  • The worst: depression and anxiety. Wake up and feel like you’re worthless at research? Want to give it all up? Yeah, that’s the gluten. Ignore it, and again, watch some television, get some sun, do something you enjoy. It will pass and the key to not letting it bother you is to know when it’s happened and compensate. Your body is not well and it’s leading to poor blood flow to the brain, malnutrition, and that’s giving you depression and anxiety. Ever feel like you’ve got such bad anxiety you can’t concentrate and your whole body wants to shake? Yup, that’s probably it.

Celiac isn’t a blameless postmortem and when you’ve been glutened you need to identify why.

I’ve got a NIMA sensor now: it’s a complicated IoT device that requires that you have a once-use cartridge, you test a pea-sized amount of food that takes 5 minutes, each cartridge at the discounted rate is around $4 a test (increasing the cost of each meal out significantly) but has served as a good device to perform a postmortem when you’ve been glutened. Recently I determined that Migros hummus, which I thought was safe by reading the incredients, was not – they never said gluten, but there it was. It’s helpful, but expensive to reduce future mistakes.

Being able to identify why you’re feeling the way you are and identify why you feel the way you do is incredibly important for prevention and future happiness. It’s basically impossible to identify a priori all of the things that are going to hurt you because cross-contamination and underdocumentation is a reality: hopefully, I’ve given you some strategies for reducing the pain of an accidental glutening and how you can be successful moving forward.