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Dave's Gluten Free Food Journey

by Erika Macchione on June 12, 2022

Looking back, I believe my symptoms started in the early 90’s when I was in college.  I experienced frequent bloating, heartburn and earned the nickname, “puking Dave” from my friends.

My symptoms became progressively worse.  Fast forward to 2004, I experienced heartburn nearly daily.  I was eating Tums like an addict.  By early 2005, I was regularly throwing up after meals.

After a visit and further testing, my doctor started to treat me for acid reflux.  The medication provided no relief.  He tested for food allergies and found nothing that explained my symptoms. 

My doctor suggested that I could have a slow digestion.  He theorized that when food sits in my stomach for too long and caused me to throw it up.  He prescribed a mobility test.  I consumed radioactive scrambled eggs, and then had an x-ray taken of my stomach every 15 minutes for two hours to track the food.  Conclusion, I had normal digestion speed.

In 2010, I started to experience tightness in my throat, difficulty swallowing, and food getting stuck in my throat. The list of the foods that I was eating when it happened grew to include pork, chicken, potatoes, apple, salmon, broccoli, beef, scrambled eggs, and many more.  I would later learn that it didn’t matter what I was eating at the time.  I was experiencing a delayed reaction to something else.

Despite eating 40-60 grams of fiber a day, I was frequently constipated and developed diverticulitis.  I was hospitalized once due an infection in my intestines that nearly lead to removing my appendix.

I started to develop numbness in my hands and feet.  I had a burning sensation on my left calf that never went away.  I experienced hip, knee, shoulder, and back pain.  My wife bought me an inversion table for my 45th birthday.  The inversion table would bring temporary relief to my back pain.  I was always cold.  Although I didn’t know it, I was also suffering from brain fog.

In 2016, I changed doctors.  My new doctor diagnosed my Hashimoto’s autoimmune thyroid disease after the first visit’s blood work.  My previous doctor never tested my thyroid because he thought only women had thyroid issues.  I’ve been taking Levothyroxin daily ever since.  The Levothyroxin relieved my constipation.  I was able reduce my fiber intake to normal levels.  My body temperature returned to normal.  The numbness in my hands and feet eventually went away.  However, I still experienced heartburn, bloating, and frequently threw up after meals.  I also continued to experience tightness in my throat, difficulty swallowing, and food getting stuck in my throat.

Later that year, I was researching Hashimoto’s Disease online and ran across an article that explained the correlation between Hashimoto’s Disease and gluten intolerance or Celiac Disease.  At that time, I didn’t know what either was.  I started reading articles about both and discovered that many of my lingering symptoms were consistent with a gluten problem.

I scheduled a return visit with my doctor.  After enduring her eye rolling and annoyance at my googling and self-diagnosis, she ultimately diagnosed my Celiac Disease.

The first year of quitting gluten was very difficult.  The longer I went without consuming it, the more sensitive and reactive I became.  My family and I were learning by trial and error on what I could tolerate and what I couldn’t.  Other than avoiding “wheat” on ingredient labels, we didn’t know what to avoid.  We had little understanding of cross contamination in a factory, restaurant, or in our home.

When I get glutened, I become bloated almost instantly.  Within 30 minutes, I start burping and then regurgitate my entire meal.  This process lasts a couple hours.  Once my stomach is empty, I am left with heartburn for the rest of the day.

Once we figured out how to keep my food safe, my heartburn, bloating, and regurgitation symptoms were gone for the first time in decades.  About 3-4 months later, my brain fog lifted.   It was like someone flipped a big light switch on the back of my head.  My vision improved, colors became brighter, I could think more clearly, and I became punch-drunk happy!  After months of healing my body, my mind finally got a turn!

About the same time, my joint and back pain relieved.  So much so, that I gave away my once prized possession, the inversion table!

In 2018, my sons encouraged me to create an Instagram account to post gluten free food reviews.  I reluctantly created @glutenfree.dave and had no idea that it would grow into my favorite hobby!  I have met so many wonderful people on Instagram.  I have learned a ton from them about how to read food labels, how to make ingredient substitutions, how to bake, and how many safe products are available now and where to find them!

Despite my new understanding of gluten, I would continue to get glutened at home a couple times a month.  In 2019, our home kitchen became a dedicated gluten free zone.  This was a huge commitment from my family, but it has been a real game changer for me.  It is an extremely rare event for me to get sick at home anymore! 

The frequency of food getting stuck in my throat reduced significantly after going gluten free.  However, it still happed a few times a year.  Last year, I discovered ‘The Celiac Project’ podcast.  When I listened to episode 173 with Matt, the Wheatless Wanderlust, I was blown away while he described his EoE symptoms.  He could have been reading a page from my personal diary.  I did some more online research and scheduled another visit with my doctor to discuss.  Soon thereafter, I received my EoE diagnosis.  Dairy was my missing link.  I have been dairy free since June 2021.  My throat and swallowing problems are almost completely gone.  After 2 months of being dairy free, the skin irritation on the backs of my arms, hips, and tonsils has cleared up for the first time in decades.

I have major food anxiety issues, and I rarely eat outside our home.  3 years ago, my wife gave me a NIMA Partner’s Gluten Sensor for my birthday.  I can honestly say that I have never been glutened after receiving a “happy face” result!  I am thankful for this pocket size technology that gives me the confidence to enjoy social situations once again!  My NIMA Partners Sensor is not the only tool I use to keep myself safe at restaurants.  When eating out: I research and choose restaurants carefully, I have the long and difficult conversations with the wait staff, manager, and/or kitchen staff before ordering, and I give the first bite to my NIMA Partners Gluten Sensor as my final line of defense. 

Contributor: Dave Stubler, Influencer @GlutenFree.Dave