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Health Tracking: I Went On A Gluten Challenge And Learned What Drives My Fatigue

Screen Shot 2015-06-11 at 5.26.30 PMAlthough SXSW Interactive wound down in mid-March, it is for good reason that this post is published in early summer.

I was inspired by the health and medical technology speakers who talked about the idea of ‘quantified self’ – tracking health data to find trends and root causes – particularly after attending the “Decoding Our Bodies: A New Era of Citizen Health” panel.

What is health tracking, aka ‘quantified self’ again?

“Health tracking” can mean any and all of the following:

  • Self-tracked metrics via wearables, health apps or plain old Excel:
    • Diet, sleep, steps/exercise, stress, pulse, blood pressure, body temperature, perspiration, meditation minutes, and more
  • Microbiome sequencing from uBiome
  • Urine testing (at home) to track the kidney, liver and urinary tract with Scanadu Urine
  • Genetic testing from 23andMe*
  • Appointment notes from all of your doctor visits
  • Prescriptions
  • Blood work
  • Imaging records
  • Procedures
  • Hospitalizations

*The FDA is still only allowing 23andMe to be sold as ancestry DNA use, but hopefully this will change soon

To keep up with the latest trends in ‘quantified self’ and see what cool things other people in the world are tracking, follow @quantifiedself on Twitter.

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Most of the tweets are from Ernesto Ramirez, a UCSD PhD student who runs QuantifiedSelf.com. He’s on top of all things quantified, and QS group will be at the Quantified Self Conference and Expo happening June 18-20 in San Francisco.

The Good News About Health and “Med Tech”

I felt so encouraged listening to all of the health entrepreneurs at SXSW Interactive who are trying to make a difference for autoimmune and other chronic condition patients. There are some promising wearables, devices and health apps in the works right now that will soon be publicly available.  I’ll be posting a wrap-up of the devices and apps seen at SXSW Interactive next week.

It’s estimated that by the end of 2015, 75% of the phones in the US will be smartphones, so the sheer numbers mean that technology companies have a big market to bring us unimagined connected devices to track our health.  Whoever thought your bathroom scale would not only measure your weight but also your pulse and CO2 levels, and then deliver that info to your phone — so who knows what else could be coming?  It will be fascinating to watch it unfold.

…And The Not-So-Good News

However, there is a downside to all of this med tech innovation. Arguably for us patients, the most important and useful innovation is analyzing trends and pulling out insights that make our daily lives healthier. That long list of trackable health data (including your medical records) all  in one place?  It’s not coming soon, with the many federal and international regulations currently in place.

But there are folks working on that, too. WeAreCurious is, in my view, the best hope for a first generation holistic view of our health data. This company doesn’t make its own wearable or health app, but is trying to be the central place to bring it together and make sense of your data to answer the big questions about your health.

I highly recommend following @WeAreCurious on Twitter to stay tuned on their product releases.

My Personal “Quantified Self” Journey

From a personal standpoint, the SXSW Interactive speakers motivated me to make an appointment with my integrative MD and ask her about a gluten challenge. She supported my plan, so I reconnected with my GI doc after a year – when he and I last met, he put me on FODMAP, which helped… but without the consistent results I wanted. I was still having bloating, pain, and other “digestive difficulties,” shall we call them – which were SO annoying, after giving up gluten 2.5 years ago and following FODMAP for a year.

So I embarked on a gluten challenge to solve the nagging question of whether the cross-contamination of gluten in my diet was what was causing the problem. I have the gene for celiac, and it always bothered me that I gave up gluten without getting properly tested.  And with my two doctors watching out for me, I reintroduced delicious gluten for three+ weeks to get ready for an upper endoscopy and colonoscopy, while tracking my diet, symptoms, elimination, pulse, stress, steps, sleep and meditation minutes.

At the beginning, I tried to be good.  Organic wheat bread at home as toast or hot dog buns.  But after a few days, my brain was begging — donuts!  cake! donuts!  The greatest pain and the greatest joy was this amazing piece of chocolate cake with chocolate icing.  The frosting was sweet and thick and perfect, like the happiest childhood memory on a warm summer day.  The cake was moist and light, the right balance of chocolate – not too much, not too little.  I felt so happy, as good memories of my Nebraska grandmother’s homemade desserts came floating back.  But the stomach pain – it started midway through the slice of cake.  Did I stop eating it and throw it away?  No. Way.

Even with the enjoyment of eating gluten-containing food, it was not worth the result. The 40 days of data so far (26 on gluten, 14 gluten free), show how eating gluten correlated with other aspects of my health. I knew I was feeling bad because my fatigue came roaring back, and I had daily headaches and nausea, which were new symptoms for me. But I didn’t realize that gluten affected my sleep, steps and stress.

Since going back to a gluten free diet, my steps have increased 5%, my sleep has increased 6%, and my stress is 10% lower. HUGE! A realignment of the gut-brain axis! And the obvious one – my gut pain — has gone down 65% on average, since I went back to being gluten free.

Here’s my pain trend line to see the positive (decreasing) trend – I slipped up and had some Frito’s the other day (another Midwestern childhood love) and cheated on FODMAP with some fresh roasted asparagus, so I’ve been paying for it the last two days – I’m guessing it’s the Frito’s and not the asparagus, argh.

Gut pain trend graph

Oh and the results of the test? Negative for celiac, yay! But I’m doing the SIBO breath test in two weeks to see if that’s the culprit for my symptoms. Good times.

Final Thoughts – The Future of Health Tracking

Whether you’re a technology lover or someone who’s still figuring out your TV remote (believe me, I can relate), tracking health data is exciting in the clues it provides to reduce pain, fatigue and generally feel better as moms.

What aspects of your health are you tracking? Do you use a spreadsheet or an app? And how do you analyze trend lines to pull out findings for yourself?

 

About the Author
Katie Cleary is founder of AutoimmuneMom.com.  She lives with her autoimmune conditions, family and mini labradoodle dog in Austin, Texas.

This post contains opinions of the author.  AutoimmuneMom.com is not a medical practice and does not provide medical advice, diagnosis, or treatment.  It is your responsibility to seek diagnosis, treatment, and advice from qualified providers based on your condition and particular circumstances.  Camino Real Ventures, Inc., the company that makes AutoimmuneMom.com available to you, does not endorse nor recommend any products, practices, treatment methods, tests, physicians, service providers, procedures, clinical trials, opinions or information available on this website.  Your use of the website is subject to our Terms of Use and Privacy Policy

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Comments

  1. Have you considered gluten ataxia? Which may or may not involve the intestines. I believe you test for elevated anti-gliadin antibodies for that one. And maybe an elevated such and such.. (that ttgA thing or whatever it is). And then the genetic marker for ataxia is a different one than celiac.

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