Friday, April 1, 2011

1 in 133

I entered my 5th decade full of promise and high expectations.  I was the healthiest I had ever been and with a phenomenal coach, I was ready to tackle the world ... or so I thought.  After I had won the 2009 Cowbell Challenge, I was ready to win the 100+ division of TransRockies with my super strong training partner Zeke.  Things did not go so well for either of us.  Zeke injured his knee on Day 1 and I hit a brick wall on Day 5.  At the time I thought my poor performance was just due to late season fatigue.

However, even after a recovery period, my form for the remaining races never re-materialized and I ended the season wondering what was wrong with me.  In addition to fatigue, new signs began appearing, in the form of bloating, stomach discomfort, and the beginning of a "buddha" belly.  After taking 2 home pregnancy tests, I breathed a big sigh of relief.

One doctor told me it was related to following a modified Paleo diet and getting 30-40 grams of fiber daily. I  began to worry about the Big "C" so I had my primary care doc order up a bunch of tests including blood work and a cat scan with contrast.  They all came back normal.

My primary care doc then sent me to another doctor who said, after a brief palpation of my abdomen, said it was my gallbladder.  I was not ready to be cut upon, so I asked if we could confirm it with testing.  A Hida scan performed a couple weeks later, showed a poorly performing gallbladder.  I, believing the numbers (more so than my clinical signs, which were atypical for gall bladder) gave the o.k. for it to be yanked out.

I had the cholecystectomy performed in January of 2010.  After recovery, initially I thought I was doing/feeling better.  But by April/May, I realized that my body was still "just not right,"  I was told by professionals that it was just related to my body getting adapting to life without a gallbladder.  Bullshit!  That's a cop out!  I think that we, as athletes, are better in tune with our bodies than your average joe or weekend warrior.  Something was still amiss.  Along with my little "buddha" belly that never really went away, my power numbers and recovery time were not on par with my training or my early 2009 numbers.  Even my coach was puzzled and concerned.

Then a new clinical sign  appeared:  constipation.  This was most unbearable!  I have always been regular; you could set your watch by me.  So in September 2010 I went back to my primary care doctor I went.  My blood work was still normal, so he punted me to a GI specialist who after palpating my abdomen said I had IBS with constipation and placed me on Amitiza.

Although the Amitiza did help with regularity, I still had all the other signs:  fatigue, bloating, stomach discomfort, and Buddha.  Even Coach was concerned with my "numbers" and especially my RPE with each of my training sessions.  Mind you, throughout 2010, I was doing my own research.  I thought it might be related to a food allergy.  So I began performing my own food elimination trials:  dairy, artificial sweeteners, chocolate, caffeine, peanuts, etc.  Nothing worked.

Then, through my coach, other endurance athletes, and even FaceBook, I began hearing about gluten intolerance and celiac disease.  So I ordered this.    Ding!Ding!Ding!  Lights went on!  Fireworks went off!

Beginning in March, I began scrutinizing labels and eliminating everything that contained wheat or gluten.  Voila!  Within a week, I began seeing changes with my body.  Now, 4 weeks later, I am getting closer to normal.  I am losing Buddha, my fatigue levels are within reason, bloating/stomach discomfort has almost subsided, my "regularity" is returning, and my power numbers are improving.

So, whereas 4 doctors never had gluten intolerance/celiac disease on their differential list, my fellow athletes did.  Hmmm .... what's wrong with that picture?  1 in 133 people have celiac, and even more than that have gluten intolerance.  The average time to diagnosis for celiac disease or gluten intolerance is 10 years.  I was lucky; it only took me 1 1/2 years.

I have taken blood tests to rule out celiac disease; they came back negative.  However, that does not necessarily rule it out.  At this point, I don't want to pursue any more diagnostics, i.e. stool testing and intestinal biopsies.  Mainly due to time constraints, finances, and potential for false negatives.  I am happy with a self diagnosis through food trials.  I also went back on gluten for a few weeks when I had the blood testing done and all that "crumminess" came back immediately.

Did I need my gallbladder yanked out?  Probably not.  Am I angry at my doctor for yanking it out?  Angry, no.  Frustrated, yes.  I am just happy that I finally figured it out and can now move on with my life, training, racing, and hopefully kicking some ass.  I have also learned, that as a patient, you have to be pro-active with your health and question your doctor's methods/madness!

Do I have celiac disease?  I dunno.  But for now, I am assuming so and therefore being incredibly thorough and picky about what I ingest.  Going gluten-free is not so bad.  The biggest thing I miss is my post-ride/race PB&J.

6 comments:

Jami Mari said...

Wow, what a story. I applaud your decision to fight for your own health.

Anonymous said...

Am curious to know what one with celiac disease eats/drinks during endurance races 2 avoid stomach cramps/bloating.

Chris said...

Welcome to the "club" -- took me 24 years of horrible symptoms -- you learn to adapt, but then once they're gone it's a whole new world! Let me know if you need any suggestions -- I'm at 15 months now and loving life!

Carey said...

Mr. Anonymous,

Rapidade or CarboRocket as my drink and HammerGel as my fuel.

Sarah K said...

I am in the club, too :) Post ride PB&J does not have to go! There are some gluten free breads that really aren't horrible. I think Udi's brand is the best. Glad to hear you are feeling better!

Dave Harris said...

What an amazing story. I knew the big picture but not the details. So glad you got it figured out because you look really good on podiums :)

So when you get "surprised" by careless food handling at a restaurant (and end up consuming gluten) how long does it take to get it out of your system?

Rice Chex, food of the gods...

Rock on Carey!