Celiac, One Year In.

If all goes to plan, this will publish while I’m out on the Madone, getting in some miles.  How apropos.

It’s basically been a year since I came to find that I’m a Celiac.  I’m still not sure if I capitalize that or not.

I’ve learned a lot of things over the past year–some good, some bad.

  • I’ve learned that I have a much higher tolerance for pain than I previously thought, and I’ve learned that you’re really not in pain unless your whole body is in pain.  Bad.
  • I’ve learned that no matter what I do for diet or exercise, I’m currently frozen at 145-150 pounds.  Bad?
  • I’ve learned that I cannot progress with physical ability as rapidly as I’d like to, or as rapidly as I expect to.  Bad.
  • I’ve learned who my friends and family are.  I’ve learned how amazing it is to have friends who are patient enough to not only put up with my whining about disease, but who deal with my bizarre dietary needs.  Seriously.  It’s one thing to invite a friend over for dinner.  It’s completely another to do so knowing that you have to cook differently, not cross-contaminate dishes or cutlery, not make a simple mistake (like using butter as a cooking lubricant).  It’s amazing to see that people are willing to put up with the pain in the ass that is my eating.  Good.
  • I’ve learned that some people are not willing to put up with my peculiarities.  Literally.  As in, “if you want to come over, bring your own food.”  Or, in one case, as in, “we’d rather not eat, because it’s too much of a problem to go somewhere that you can eat.”  I’m not sure whether that is good or bad.  Probably good.
  • I’ve learned just how sensitive the human body is at detecting substances that it doesn’t like.  Bad.
  • I’ve learned that elimination diets are a slippery slope.  I started by eliminating gluten.  Then dairy.  At present, I’ve also eliminated soda, alcohol and artificial sweeteners.  Open a cupboard in your kitchen and pull out a product.  Look to see if it has any form of gluten, or any form of dairy (liquid or powdered), or artificial sweeteners.  It’s a lonely world out there.  Bad.
  • I’ve learned that, even with all of the health crap going on, I’m still able to be a better, stronger cyclist by simply putting in the time.  Perhaps more time than I’d like, and perhaps a slower reward curve, but it works.  Slowly.  Good.
  • I’ve learned that I value an honest reward (a slow, but earned result) over a dishonest reward.  I’ve looked the opportunity to dope, legally, in the face and turned it down.  Good.
  • I’ve learned that I cannot make it more than a day–maybe two–without the support of my wife.  There are little roadbumps every day.  She makes them easier.  Good.
  • I’ve learned how perceptive my daughter is.  When she makes pretend food, she now offers me a bite, and tells me that it is ‘gluten and dairy free.’  While I am so very proud of how sensitive she is, I also worry about the long-term ramifications of living with a parent who has some very unique issues.  Good.  I think.
  • I’ve learned to be more patient.  Food is often served 2-3 times before a new restaurant gets the order right.  Ordering takes longer.  Finding something to eat in a gas station is a challenge.  Good and bad.
  • I’ve learned that, even with all of the dietary changes I’ve made and the incredibly healthy diet that I’m eating, I’m still reliant on supplements, vitamins, and related potions to maintain basic levels of good health.  Without iron, I’m anemic, for example.  That points at some deeper rooted absorption problem, but I don’t know what it is as of yet.  Bad.
  • I’ve made huge changes in my personal and professional life that have had incredibly rewarding, positive outcomes.  I’ve taken some risks–calculated risks–and thus far, things are going well.  Those changes have had a positive health impact for me, as well.  I’m pretty steadfastly convinced that, had I made those changes a few years ago, my blog would just be about cycling, and not about celiac’s.  But…I suppose we’ll never know.  Good.
  • Completely unrelated to celiacs, eating, diets, etc., I’ve learned what an amazing group of friends I have.  There are people that I didn’t know 2 years ago, who I now count among my closest relationships.  There are levels of trust that I didn’t think were possible outside of family and marriage.  Good.
  • And on that same note, I’ve learned to accept other cyclists as an extension of my own senses.  If I’m riding in a pace line and someone calls out an obstacle, a car, a pothole…whatever…I’ve learned to go with it, without having to see it first.  I have the great benefit of riding with guys whose skill and goodwill can be implicitly trusted.  It’s pretty amazing, really–and it makes solo rides all the more intolerable.  Good.
  • I’ve learned not to try anything described as non-dairy cheese.  Trust me.  Good.

A little over a year ago, before I came to the conclusion that I have celiac’s, one of my neighbor’s children was dealing with pretty severe skin issues that were, at first, blamed on possible food allergies.  My wife would tell me about the (seemingly crazy) things that their family had to do to accommodate a gluten free diet.  Little did I know that I’d be pushing that same envelope, just a short time later.  I’ve learned to be flexible in ways I didn’t previously think possible.  Much of that, again, is attributable to the support I get from my amazing wife, my great friends, and my amazing wife.  (See what I did there?)

A year older.  A year wiser.  A year more patient.  A year healthier?  A year under 150 pounds.  A year of learning.

About these ads

Chewing on Nails.

By that, I mean rusty nails…not fingernails.

Saw doctor yesterday.  Cholesterol is up, iron, red blood cell count and ferritin are down.  Not as bad as they were 6-8 months ago, but inexplicably down into anemic territory again.  Weight is also down.  As I’m scarfing gluten and dairy free food like it’s going out of style, and doing some sort of exercise (either riding or working out 5x/week) almost every day, the results don’t make a ton of sense.  Best guess is that there’s still some sort of ongoing absorption problem…but were that the case, one would think that my iron levels would have been sketchy at the last blood tests ~3 months ago (and they weren’t).

Going back onto iron supplements is the easy cure for the anemia…but doesn’t answer the underlying question of why it’s occurring.  I eat about as good of a diet as is humanly possible.  Given a family history of heart disease, the doc wants me to go on statins as well…but I think we’re going to try some herbal or non-Rx options first.

The only good news out of all of this is that the anemia hasn’t been seriously affecting me this time around.  When my levels were waaaaaay off several months ago, I was feeling like crap.  Lately, I’ve been feeling pretty darn ok.  Hopefully, getting things back in line will bring the status up to feeling good.  So short term, the goal is to utilize externalities (vitamins, etc.) to get the levels where they should be.  Intermediate term, the goal is to find out why things are imbalanced when I’m sporting a balanced diet.  Long term, I’m still planning on racing the Tour de France this summer.

Work in Progress.

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.

Buried.

One of the things that I love the most about cycling is that it enables an escape from a difficult day.  When work goes wrong, when something is amiss, when I’m irritable…cycling provides a positive tool for eliminating stress, burning off negative energy, and inducing a state of fatigue that is more conducive to relaxation than stress induced anxiety is.  And I remember a time, in the not so distant past, when I could bury myself in a ride and seemingly not tire–a time when I could ride harder and harder, never hitting bottom…or at least never hitting bottom for too long.  That was a feeling of empowerment, of betterment, and of constant, perceptible growth in my abilities.

One of the most frustrating things about dealing with Celiac’s is a different kind of being buried.  It isn’t watching others smother a piece of sourdough or french bread with butter before downing their pasta dinner, all while polishing off a nice, hoppy IPA–I mean, that’s not terribly fun, but I can get past that.  But for the past–??–maybe five or six months, I never know what kind of rider I’m going to be.  Some days, I can go out and ride to my full potential.  And other days, I just get buried.  I’m not out of breath, but I’m out of legs, and far too soon.  I try to dig deeper–to groan, to curse, to breath faster, to breath slower, to try a higher/lower gear and a faster/slower cadence–but nothing works.  Nothing quells the growing stiffness in my quads.  Nothing dulls the ache–not a burn, but an ache–in those muscles.  And all too quickly, I start to feel buried.  Riding with the pack becomes hanging on, becomes staying in touch, becomes giving up on riding with the pack, gutting it out, and riding my own ride.  It isn’t pretty, but I’ve not come up with better solutions yet.

I’m hopeful that with time, a stable diet, and full recovery from anemia, this all becomes a thing of the past.  I’m just so angry with myself that this is happening–this feels like excuses.  It feels like I’m just giving up too early, cutting myself a convenient break, and blaming my riding failings on a convenient scapegoat.  It feels like something that I’d be critical of in another person; I can see myself hearing someone else talking about this issue and thinking, “he just isn’t trying hard enough.”  And yet, no matter how many times I beat myself up over this issue…no matter how many times I analyze and reanalyze my rides, my GPS data, my performance over the past year…I cannot come up with another plausible explanation.

Getting dropped tonight was a good thing, I’m telling myself.  It allowed me to get in those extra 7 miles I needed to reach my unstated, yet hotly anticipated 2011 goal of a century for each of my 32 years.  That accomplishment just seems to ring hollow, seeing my average speed decline since July, and feeling knowing that while my technique may have improved, I was a stronger, faster cyclist 1500 miles ago.

Often, when I’m working on a writing project and reach a mental block, I’ll just start typing so I can see words on the screen.  The simple act of tapping away at the keyboard, something I spend altogether too much of my life doing, can get my thoughts flowing again and can help me lead myself out of the block.  And yet, looking at this on the screen, it isn’t the catharsis that I had hoped for.  It’s just a statement of something that’s painfully obvious to me, without a clearly defined path to progress.  So here’s to the hope that the coming new year reveals something worthwhile in terms of a resolution to this issue.  Until then, I’m going to ride until I’m dropped and then stop for a moment, to contemplate the continuation of this syndrome and to ensure that whomever I’m riding with doesn’t feel compelled to wait for me, then lower my head, clip back in, drop down a gear or two, and keep riding against the grain.