This month’s blog is a story both painful and hopeful. Our own Juston Jaco MS, current team member in our residency program for nutrition professionals, shares his from-the-heart decades of experience with a challenging allergic condition – eosinophilic esophagitis (EoE). Like many of us in this field, his experience with the failings of modern, conventional medicine, essentially paved his path into where he is with us today. His heartbreaking account of being marginalized by the medical community, especially during his formative years, is unfortunately not uncommon. Our bold goal here at Dr. Kara Fitzgerald, which we hope resonates with you too, is to help forge a new kind of medicine – one that deals with causes not just symptoms. One that helps others, just like Juston, find their own way to health again. If you are so inspired, please share your own experiences in the comments below. I promise they do make a difference to others. – Romilly Hodges, Nutrition Programs Director
I remember suffocating, unable to speak. I panicked and thought, quite hysterically, this is it.
I was 23 years old.
Truth be told, even though I convinced myself I was in good health, fear of asphyxiation surreptitiously lurked in the background of every meal I consumed from childhood. In fact, unlike most children, my memories at the dining room table were filled with worry and apprehension. I knew early on that I had to macerate each bite as if my life depended on it. If I didn’t completely pulverize my food, then I was setting myself up to choke to death.
The antagonism between me and the doctors who said “it’s all in your head” grew until I was formally diagnosed with eosinophilic esophagitis (EoE) at 18 in 2010 (read on to find out more about EoE). The liquid and inhaled corticosteroid prescription drugs did not work at assuaging my symptoms, rather my choking spells became more severe. I quite honestly felt one swallow away from death, and no one knew how to help. At the same time, I was battling seasonal allergies, bacterial acne, migraine headaches, hair loss, anxiety and depression.
While I knew parts of my health weren’t excellent, I still considered myself to be generally well overall. I was a full-time student at the University of Michigan, double majoring in Spanish Language & Literature and Environmental Health, with a specialization in Conservation Biology. I worked part-time to help cover the financial gaps in my educational expenses. I was a five-time All-American Runner at the National Intercollegiate Running Club Association (2012-14) and co-captain of the Michigan Running Club where I coached my Track & Field team to compete at Club and Varsity (Division I and II) meets. I also organized fundraising events for Relay For Life, My Team Triumph, and the Special Olympics every year.
Because I was able to achieve whatever I sought to do, I put my health on the back burner and suffered greatly because of it. Behind closed doors, I let fear take over. Deep down, I knew everything I had worked so hard for could come to an end with one wrong swallow. The dread was amplified during times of stress, which, again, reminded me that no one knew how to help. It was a vicious cycle and positive feedback loop I needed to break from if I wanted to truly be free. I felt as if I was a mystery to myself.
That is until I started to do some research …
The first thing I did was to see if there was a community of EoE sufferers online. I needed to know I wasn’t alone and that I wasn’t the only one having daily symptoms with no relief. In my disjointed way of thinking, I needed confirmation that others were suffering for as long as I had or even longer—I wasn’t looking for a cure, I was looking to see I could live with this for the rest of my life. I sought validation in the absence of answers. I crowdsourced the EoE symptoms I was experiencing and, low and behold, found hundreds of strangers with the same symptoms that had lingered in the background of my existence. While misinformation is always a risk when turning to medical answers online, I was desperate to try all their advice, no matter how unhelpful it was. Every time I had an episode, I tried something new. It wasn’t until someone mentioned the implication of food allergies and food sensitivities in EoE that a lightbulb went off.
I had never considered that food was a factor.
While my extraction of pertinent research studies was nowhere near fine-tuned, after searching for hours on the root causes of EoE I came to the conclusion that my diagnosis was likely diet-related. At the end of 2014, four years after my EoE diagnosis, allergy testing confirmed it wasn’t in my head after all, and the antagonists were identified—9 food allergens I was consuming on a regular basis. After pinpointing the specific food triggers with the allergist, when I requested a tailored nutrition plan and guidance for the next steps, I was quickly written off with “Google it” as the response from my doctor. His back was turned to me. He didn’t even look up from his prescription pad when he said it and walked out the door.
So I did, and in doing so, I went back to the community that gave me my life back.
The truth is that modern medicine failed me and, arguably, the food system and my “sterile” upbringing. My mother was told that infant formula is better, germs are bad, and that medicine is always the answer. Placed on several different drugs to treat several different symptoms continued to mask the underlying cause for two decades: the food I was eating. Inflammation ran rampant in my system and conventional drugs were wreaking havoc in my gut. No one warned me of the potential side effects or invited me to question if there could be a connection between all my underlying health issues.
With EoE, it very often all comes back to food. At the time of my diagnosis, this was clearly established in the medical literature (see my extended post in the professionals’ blog page coming soon). In fact, these findings date back to the early 1990s! But what’s in the medical literature doesn’t always translate to clinical practice. And my case is a cautionary tale of what happens when the latest science is ignored.
In sum, clinical experience, decades of research, and time-tested trial and error strategies demonstrate that food allergens are the number one trigger for EoE, for which elimination diet therapies are the number one treatment option. Still, EoE has several underlying factors and multiple novel treatment modalities must be pursued that go beyond diet and pharmacy. On my journey to integrative and functional medicine, what I learned from the scientific literature was profound: the environment, including the food that comes from it, is the single most influential determinant of our health, yet is grossly underutilized—if at all—in clinical practice.
“Google it” responses from providers felt to me not only ignorant and lazy, they felt anti-human. What I learned from other disease sufferers is that a patient-to-patient community is healing. Community heals, and it certainly healed me. And I learned that healthcare providers are not in this community when they do not acutely listen to these “medical non-responders”.
What else did I find relevant to help with EoE? Chlorophyll-rich (i.e. green plant) foods that are not trigger-foods for the individual, zinc carnosine, quercetin, vitamins A, C, and D, deglycyrrhizinated licorice, and specific probiotic strains, all of which should coat the inflamed organ – the esophagus. I.e. Avoid taking capsules that totally bypass the upper portion of the digestive tract (the esophagus). Stress reduction (i.e. yoga, meditation, tai chi chuan) practices and eating slowly and mindfully during mealtime is beyond warranted.
Somehow I managed to find the courage within myself to push forward even though everyone was telling me nothing was wrong. I fought to find the truth and exhausted every option before succumbing to the fact that my diet and lifestyle had to change. While it was, in the end, the hardest pill to swallow, changing these two aspects of my life changed everything.
Thank you for sharing your painful journey that gives hope to all those suffering from chronic conditions and who are on their journey of discovering underlying causes and best paths. You sure are in the right place working with Dr Kara – I learn so much from her work as a nutrition professional. Wishing you all the best personally and professionally. 🤓
Thank you for sharing your story! Indeed, I’m sure almost all of us can relate to the public health system failing us in one way or another. My own experience – having been left with an undiagnosed h.pylori infection for 3 years until I got an ulcer! And that’s despite going to different doctors in different countries!
On the positive side, it’s wonderful to see functional medicine gaining traction and people beginning to feel more empowered to ask questions and take back control of their health!
I want to echo other commenters and thank you for sharing the difficulties you went through to find answers and healing. I also have eosinophilic esophagitis and had to blaze my own trail so to speak to regain health and stability through nutrition, supplements, lifestyle changes and stress reduction practices. As an acupuncturist I was used to thinking holistically, and lucky, I think to have a framework that questions the effects of all our inputs on our overall health (food, environmental, mental/emotional, etc.). Especially when facing reductionist and incomplete solutions from doctors, this gave me the courage to keep asking questions and seeking answers. A functional medicine nutritionist helped me so much in the problem solving stages as well. In our community I come by cases of EoE where patients take years to either be educated and/or accept that nutrition is a core strategy for healing this condition. Thank you for educating on this condition.