Sunday, October 18, 2015

From the Inside Out

Where to start! I'm worried this could be a long one, but I'm laying it all out there. My main audience for this post are those dealing with gut discomfort or digestive issues.  I hope through telling my (long/painful) journey that I can hopefully help others find their own answers. It is my sincerest hope that others do not have to experience 3, 4 or 5 years of discomfort before finally finding answers.  I can never get the past three seasons of professional racing back and I'd do anything to have discovered answers at the onset of symptoms! Well, time to dive in.

It was over three years ago when symptoms first started to impact my everyday life.  Looking back the symptoms started even earlier, but things were manageable.  With each passing year my symptoms worsened, and eventually hit a point, earlier this year, where I took matters into my own hands and demanded answers.  I'd been given many "answers" from doctors, nutritionists, and coaches, but in the end none of them made any sense. I knew something wasn't right deep inside.
This is simply my story and the research I discovered in my search for answers. I'm certainly not an expert in gut health, but I am most definitely an expert in my body and how my degrading gut health impacted everyday living and my athletic pursuits.  Here we go...


Onset of Symptoms & Gluten Testing: 

The first symptoms I experienced were bloating and gas. I decided to cut dairy from my diet (goodbye beloved greek yogurt) and noticed a significant improvement. Little did I know this was only the beginning...

Approximately one year thereafter I struggled with severe anemia (again), stomach discomfort, gas, bloating and other symptoms stemming to common vitamin deficiencies. After several visits to doctors and GI specialists I got a physician to prescribe i.v. iron treatment to help restore iron levels. While sitting through one of my weekly i.v. treatments I met another girl suffering from similar symptoms. We started talking and within 10 minutes we were both in tears. Not only did we sympathize with each other, but for the first time we felt we were talking to someone who completely understood and believed how the other was feeling. It had been two years since I first visited a GI specialist, but it wasn't until this moment that I believed I wasn't crazy and there might be real answers to my inability to properly digest foods.   She was a few steps ahead of me, and had been working with physicians at Stanford Health who discovered she had severe celiac disease.  I couldn't believe the similarities in our symptoms and immediately made an appointment to see the same physician.  By this point I'd already started the process of cutting gluten from my diet. This doctor studied at Harvard and is a leading researcher in gluten intolerance and celiac.  She had to have the answers!

Besides dealing with gut discomfort, extreme bloating and gas I also suffered from extreme malaise during training and racing. I remember racing Ironman South Africa and literally running past the turn towards the finish. I was in a complete daze and had to be directed towards the finish line. I had similar feelings on bike rides where I'd be only a few miles from my house and found myself turning to riders next to me asking where we were. It was as if I was training from high atop a cloud.  I also had leg and arm tingling during most of my swim workouts.

These symptoms started effecting my work day. Around 2pm every day I started feeling severe gut discomfort and wanted to run home and plant myself on the couch. The final straw was repeatedly being asked if I was pregnant (clearly it isn't universal knowledge that you never ask someone this unless it's very obvious. Wait, maybe the bloating was really that dramatic?!?!).  When I went into Stanford the physician was shocked to learn of my struggles with iron absorption and discomfort after eating. She asked me a long list of questions to determine what symptoms I was suffering from. It wasn't until that moment when I realized all of the above listed symptoms could be connected to my digestive track.  She convinced me to undergo an endoscopy to test for celiac, and assured me we'd get to the bottom of things through various biopsy screenings.

The test for celiac disease came back negative, but due to my symptoms I was instructed to keep gluten from my diet. I didn't need to be told twice. What people (who haven' dealt with severe gluten issues) don't realize is that the symptoms for celiac and gluten intolerance can be equal in severity. It is just that celiac disease is connected to the autoimmune system.  (I could go on and on about celiac and gluten sensitivity, but I'll stop there).
Prior to the endoscopy it's imperative that you consume a substantial amount of gluten.  For three weeks I ate yummy bread and gluten packed meals every night. Within five minutes of eating gluten gas bubbles started building in my stomach and soon after agony set in as they began exploding.  I couldn't wait to get these foods out of my diet. Even a drop of soy sauce would set my gut afire. My doctors at Stanford indicated that it was possible that if I continued to eat gluten I could later develop celiac. This is an area where much medicine research remains, but again I didn't care. I knew how I felt when I ate gluten and that was all I needed to cut it 100% from my diet.

IBS? SIBO? 

All seemed to resolve itself and I went on with my training, racing, and daily grind. While I still had digestive issues with some fruits, vegetables and beans I chalked this up to normal dietary distress caused from these foods. Slowly symptoms worsened and I found myself cutting more and more from my diet.  Things came to a haunting point earlier this year when I realized that symptoms not only worsened, but were present after almost every meal.  I started keeping a food diary to determine what foods gave me issue. I spoke with my coach and dietitian who chalked things up to irritable bowel symptom (IBS) (clearly IBS is a serious issue affecting millions of people. I just knew this wasn't the answer and for me something more was going on).  While gas, bloating, diarrhea are all marquee symptoms of IBS I knew this wasn't my answer.  Our (QT2) core diet nutritionist suggested I follow the  FODMAP diet.

FODMAP stands for:  fermentable oligosaccharides, disaccharides, monosaccharides, and polyols. These are poorly absorbed sugars that pass through the small intestine and enter the colon, where they are fermented by bacteria, releasing gas, which stretches the sensitive bowel causing bloating, gas and pain.  It was helpful to read about the ingredients within FODMAP that cause distress, however when I realized that 99% of the food items on the list gave me issues.  With that I threw my hands in the area and said "enough is enough."  IBS is a diagnosis made on symptoms, with no test to confirm this diagnosis. (The most common symptoms of IBS are: abdominal distention, constipation/diarrhea, abdominal discomfort). To me this was a catch all, scape goat diagnosis. Did people really think it was normal/acceptable to not be able to eat all of these healthy and natural foods!?! Honestly, I found it laughable.  To say I was frustrated would be a huge understatement.
*note: FODMAP is not a "diet" per se in that it is not meant to be followed for a long duration of time. Instead it's meant to be used short term (4-6 weeks) followed by reintroducing items one at a time to determine which items cause a reaction.

So...let's paint a picture of what I was eliminating from my diet at this point. Onset of symptoms came from: all dairy, honey, several fruits (grapes, all dried fruit, mango, apples, watermelon, cherry's, pears, dates (or any dried fruit)....), a ton of vegetables (various forms of lettuce, sugar snap peas, asparagus, brussels sprouts, cucumber, cabbage, broccoli, onion, peppers... to name a few), soy (tragic when my favorite Clif Bar product are the Luna Protein bars which use soy protein), and most beans (chic peas, black beans, white beans, lentils...).  Furthermore, I was no longer able to properly digest sports drinks and many sports nutrition products due to the glucose levels.  (Thankfully Clif Bar offers a whole host of options, and by rotating through gels, blocs, organic energy food, and bars I was able to properly feed the machine).
Eating any of these items caused severe stomach distention (yup, once again I was being asked if I was pregnant), gas, and fatigue. I was struggling to get back down to race weight, or even to drop a single pound. I sat at a 300 calorie deficit and couldn't drop an ounce. We took things down to a 500 calorie deficit and even still I sat firm at 10lbs over my normal/comfortable weight. I could get over the number if I had to, but I couldn't get over how I felt.  It was time to become my own advocate, to self educate. I started reading and listening to a lot of podcasts on gut health. Knowledge is power. Just call me Ms. WebMd.

My initial readings lead me to believe I was suffering from small intestinal bacteria overgrowth (SIBO).  SIBO is a condition in which colonic-type bacteria (resembling bacteria normally found in the colon) proliferate into the small intestine.  Common symptoms of SIBO are sensitivities to supplements, fatigue, brain fog, abdominal distention, abdominal discomfort, extreme gas and diarrhea or constipation. I had the first 6 symptoms, so this must be my issue, right? I reached out to my friends in the medical field to determine which the best tests for SIBO.  All recommended the at home SIBO breath test by Commonwealth Lab.  There's nothing fun about this test that includes 24hrs of a limited diet and fast, but I swore this would get me the answers.  The lab turned the test results around in just a few days, and responded to let me know there was a negative finding for SIBO. I was shocked.  (We're actually now rerunning the SIBO test to confirm there wasn't a false positive, however as you'll see I eventually found the culprit). 
-  Here is a great article by Chris Kresser on SIBO and why diet alone will not cure SIBO.  (It is important to do a lactulose test and not glucose, as lactulose is more accurate. A negative glucose test can not completely rule out SIBO as it doesn't test the full length of the intestine where overgrowth occurs). 
The search for answers continues...

Bacteria/H.Pylori Screening:

H. Pylori is a bacteria that affects over 50% of the human population. Shocking statistic considering it took years before I learned about H. pylori and got tested for it.  H. pylori is a bacteria that is picked up just like the flu or common cold. It can come from another human or from food/water.  Sadly not one physician ordered this very common test.  While the presence of h. pylori bacteria is not necessarily dangerous, it can lead to stomach ulcers and is thought to be the cause of some forms of stomach cancer if left untreated.  I am still in conversations with Stanford Health because this is something that is routinely checked for in endoscopy procedures. However my results make no mention of such test.

I worked closely with BioHealth Labs to make sure all the necessary tests were properly ordered (all require a physician's order).  They ran a complete GI pathogen screen, functional adrenal stress profile, salivary hormone test, and metabolic assessment profile.  All of these tests can be conducted at home and mailed directly into the lab.

The combined results from each of these tests allowed me to see the full picture of what was going on within my digestive track. The results came in, and it looked like I finally had my answer.  The GI pathogen screen showed a positive finding of h. pylori, as well as yeast overgrowth (candida). H pylori isn't something to mess around with and definitely requires treatment. By this point I didn't even care what was going on inside me, as long as I had an answer and a plan to dealing with it.  Tests also showed my hormone levels were effected.  I can now say with strong certainty that the presence of h. pyoli, as well as my affected hormone levels, were the root cause for my inability to lose weight. (I knew this wasn't a simple equation of calories in and calories out, and that starving myself wasn't the answer!)

I did my research and learned that the bacteria can be attacked either through herbal means or by antibiotics.  I am not a fan of antibiotics and haven't taken them (or any prescription drug for that matter) in 15+ years. I'll always go the natural route...but not this time. I weighted my options and opted for the antibiotic route for two reasons: 1) the success rate at killing the bacteria (for good) is 80% with antibiotics and homeopathic measures showed a much lower kill rate; 2) the antibiotic regimen takes 14 days while the homeopathic track takes 2+ months. Unfortunately the timing of trying to kill the bacteria and yeast overgrowth landed right at the beginning of my final push for IM Chattanooga.

I set off for our QT2 pro camp in Texas with drugs in hand (a PPI, and 2 different antibiotics taken in a very high does twice a day).  I'd love to say that it wasn't a big deal to be downing all of these drugs, but it was a rough few weeks. I literally felt like I was going to fall over and die during my workouts. Even an easy swim sent my heart rate sky rocketing. My body was working so hard to kill off the bad bacteria and here I was asking it to perform at crazy camp volume/intensity.  I remember rolling out for one of our first rides, praying it would be short and sweet.  (Now remember, I am one who lives for long training days! So to feel the way I did after 40miles was bothersome). I turned to Jesse to ask "is it time to turn around yet," only to hear "come on Caroline, this isn't your first rodeo."  From that moment on I buried my head and sat firmly in the hurt tank....workout after workout, day after day. Coach Tim was amazing at keeping me on track and pushing me through.   Things didn't improve until about three days after finishing the medications.  As bad as it was, there was no way I was delaying taking these drugs and killing the bacteria. I wanted to feel healthy and normal far more than I wanted to have a great race.

I noticed a pretty significant turn around after finishing the antibiotics regimen. I was able to tolerate (high doses of) sports nutrition once again and finally started to drop weight. In fact I dropped 7 lbs, in 2.5 weeks without even trying. Things turned around just in time for me to race Ironman Chattanooga. I felt confident and left for Tennessee with a renewed excitement.  We all know how that turned out- but to have figured things out and be on the mend felt like the biggest win of all.

I just sent in another round of testing to confirm the antibiotics did their job and completely killed the bad bacteria. Results confirmed what I had suspected: all bad bacteria was dead and gone! I did a happy dance. This was indeed a huge victory.

Rebuilding Healthy Gut Flora

Once the bacteria has successfully been killed off, and  hormone levels return to normal, it's time to rebuild a health gut flora.  There are many products out there that contend to help stimulate this process, but I've chosen to try to gain results through my diet.  I learned about homemade kefir milk while in Australia earlier this year. It is easy to make and contains more healthy strands of bacteria and vitamins than store bought options. Kombucha and sauerkraut/fermented vegetables are also great options for rebuilding healthy bacteria in the gut.  (making homemade fermented vegetables is next on my list).  I am also working with the founders of Sound Probiotics to learn how pre and probiotics can restore gut health and have added their probiotics into my daily routine. Their product includes a prebiotic which will help restore healthy bacteria in the gut.  (Chris Kresser Podcast on ways to build healthy gut flora if you're unable to process probiotics and fermented foods. Listening to this made me realize others have it way worse than I).

It's been quite the journey to get to the final stage of not only finding answers, but treating the root cause of my symptoms.  If you relate to any of this story my first bit of advice is to be your own advocate. I challenge you to get to the bottom of the root cause of your symptoms, and to remember you know your body better than any physician, dietitian, homeopathic guru, etc.   I can certainly relate to the day to day obsession of trying to overcome diet restrictions while pursing sport at the highest level. Eating was a stress in my life and simply a means to feeding the machine.  While it's important to slowly reintroduce food into my diet I have certainly tested the waters. My body tolerates small amounts of dairy again, every vegetable I've tried as well as fruit and dried fruit.  I'm also feeling a difference in my body's ability to digest red meat which is crucial due to my history with anemia. I tested a small quantity of (gluten filled) bread and to my amazement didn't experience any stomach pain as a result.  I'm still waiting for a huge training day to sit down and indulge on real pizza to give the system a real test. (Although after three years of being 100% gluten free I can't even imagine being able to add this back into my diet. This one is still TBD).

Rebuilding healthy gut flora takes considerable time.  I'm patiently optimistic things won't relapse and I can remain in the clear. For now I seriously feel like a new person. To those who I've consulted with along the way I thank you for openly sharing your knowledge with me. It's been a long road, but I am thankful and appreciative to have forged ahead instead of living complacent with cutting out so many foods from my diet.

I plan to follow up with a twitter chat/Q&A with Sound Probiotics. We'll announce a date/time on twitter once solidified.

Take Away's:
Here are my over arching pieces of advice to anyone dealing with gut health concerns.

  • Use IBS as the catch-all only after all other digestive diagnosis are ruled out. This isn't to say that IBS isn't an actual syndrome, but it's better to be safe and rule out any other issues which can become worse if left untreated. If your symptoms are as drastic as mine then I can only imagine your reaction to an IBS "diagnosis" will be to laugh it off. 
  • Use FODMAP foods as a marker to determine how many of these foods give you issue. If cutting all FODMAP foods makes you feel better then it's time to dig into what's going on in your gut. Please don't just assume you should permanently cut all these healthy foods from your diet. 
  • Always remember you know your body best. If you feel like something is not right then trust your gut ;-) don't stop until you find a practitioner who can access what testing you might need.
  • Most importantly- if frozen yogurt starts causing digestive discomfort you MUST seek medical attention immediately! 
There you have it. Sorry for the long post, but I do hope this can shed some light on issues others might be facing. Please feel free to leave a comment or reach out to me with any questions. Again, I'm no expert but I do know finding answers is well worth the investment. 

Cheers...to health and happiness! 

2 comments:

millerb said...

Congratulations for being so diligent to finding answers to your issues. As I was reading your story, it was so similar to mine. I went through 4 years of very similar symptoms until I found someone to take me seriously and diagnose celiac disease and IBS. I'm getting some relief with the completely gluten-free diet and low FODMAPs. Best wishes for your continued recovery!

melinda said...

I found kefir to be so helpful in my recovery from epilepsy!
http://www.getfitandhealthyathome.com/what-is-kefir/