The title of this blog is Riding Against the Grain–with the name being both a cycling pun and a joke about Celiac’s disease (where grain intake is delicately regulated). And as the header indicates, it is supposed to be a blog both about cycling and about living with Celiac’s. As time has passed, it has just been about cycling–and not about health.
The reason for that is simple. As much as I had thought writing about living with Celiac’s disease would be a catharsis, it isn’t. It doesn’t make me feel better to write about it or to share it. In fact, I never know when I should and shouldn’t talk about it. I’m never sure if I should talk about it, joke about it, or try to hide it. When I do joke about it, I’m never sure if it’s funny. I’d rather post pictures and thoughts about bikes and technology–much easier, much less personal.
From a food perspective, live is stressful. At home, my awesome wife manages my diet and I don’t really have to think about it. That’s an incredible luxury that not many people have. When I can take a meal with me, she comes up with something great. When I can’t take a meal, I look for safe places to eat–places where I know the menu (and preferably know the staff), and can eat without worrying about ‘being glutened.’ For example, I eat at Chipotle at least three or four times a week…because the food is reliably good, reliably safe, and reliably gluten free. I’m also fortunate to be surrounded by great friends who are far more patient and understanding than I have any right to expect–and who go out of their way to adopt my problems as their own when we’re eating together. A few weeks ago, we had a Superbowl party, and friends brought a ton of amazing food–nearly all of it begin gluten and dairy free. So I’m a lucky guy in that regard, certainly.
Part of the problem of going somewhere new is explaining the whole gluten and dairy free thing. Unless products are labelled as gluten free, making the determination as to whether or not a given product is safe requires looking at each and every ingredient. People understand that wheat isn’t safe…but gluten is far beyond wheat. Dairy free is equally confusing. People understand no milk or cheese, but they don’t see the dairy in a meal when they cook a chicken breast in a sauce that has a little butter in it. And thus, I either end up providing a ton of rules for my meal, or I eat something and take a risk on getting sick. I’m not a person who has a problem with being assertive, but it’s hard to always be assertive about eating. And frankly, part of that problem is the misunderstanding of Celiac disease and gluten allergies.
If you go into a restaurant and say you’re allergic to shrimp, people get that. Waiters have an instant, vivid picture of a patron, writhing on the floor in anaphylactic shock, gasping for air. If you say you’re allergic to gluten or wheat, the picture is much less clear. What does that even mean? The unpleasant reality is that, if you get glutened, you feel like crap for 3-4 days, and you’ll spend a significant amount of time over those days with significant digestive distress. I can’t even type it…much less explain it to every waiter I see. So this whole Celiac lifestyle…it’s a pain in the ass.
The other part of the work in progress is figuring out what is going on with my body. I’m riding 3-4 times per week, with significant rides (at least 90 minutes of hard cycling, plus a little warm up/cool down. I’m doing traditional workouts 2-3 times per week. I’m taking in a ton of Celiac friendly calories–a ton. I’m basically eating constantly.
Nonetheless, I’m losing weight again. I’m back under 150…which is really, shockingly light for a six foot tall, active male in his 30s. My BMI is firmly in the ‘underweight’ category. Pants with a 32″ waist are starting to get too loose to wear. So that means more blood tests, more exams, and more time trying to figure out what the current (new?) problem is. I’m running right on the ragged edge with my cycling–I feel like I should be able to push harder, but I keep running into physical limits that seem artificial. And notwithstanding my traditional workouts, I’m not exactly burgeoning into a muscle builder.
Over the coming months, I’m going to try to talk about this more…not because I think it is helpful for me (jury’s still out on that), but because when I was diagnosed, I had a hard time finding resources that could talk about the practical aspects of living with this disease.
Part of that is aversion therapy for me too. I hate saying “disease”. I hate saying “diarrhea.” I hate saying all of these words. And when I ride hard and hit a wall, I really, really, really hate the temptation to blame it on Celiac’s. I’d rather have no excuses. I’d rather just have the answer be that I have to push a little harder…and I do think that is the answer. That’s what I’m doing now–and I am getting incrementally faster and stronger as a cyclist. But I’m also dropping weight in an unsustainable fashion. Pretty soon, I’m going to get confused with Andy Schleck. So hopefully, some answers will be forthcoming.
It’s a work in progress.