Wellness Struggles Part One: Why I Took my Health Matters into my Own Two Hands After Several Doctors Failed Me

That’s a long title. But I had no other way to sum up this post in less words. And by “after several doctors failed me,” I mean that they simply gave up trying to establish a diagnosis or they would not take me on as a patient at all because “there’s nothing else [they] can do for me.” Sigh.

I’ve been battling some pretty rough health issues over the past two years. Nothing life threatening and I will preface this post by acknowledging that many people have it way worse than me. I am grateful for my health and for working at a company that provides health insurance. But I’ve dealt with many roadblocks and speed bumps along my travel to an eventual diagnosis. I am still not there yet and for that I am completely frustrated. However, I remain hopeful. And if you are going through something similar, I hope you continue to be hopeful as well. Just know that I feel your pain and I’m here for you, but we gotta stay hopeful!

Due to the amount of information this discussion requires, I likely have made this post Part One in a series which will continue over the next couple months. I’ve left out several treatments and details here that I will get into later in future posts.  But for now I’ll start with a brief background as to what I’m dealing with.  I have stomach problems that I’ve been experiencing for over 10 years now. For the first 8 or so years, they were inconsistent and infrequent and thus more manageable. But the last two years they have impacted my quality of life and I refuse to remain un-diagnosed and at a standstill for the remainder of my life. I’ve never felt more uncomfortable in my own skin as I do right now. So I continue to persist and navigate my way through the lovely world of health care while doing my best to self-diagnose through my own research as best I can.

By “stomach problems,” I mean severe bloating, extreme discomfort and occasional constipation. On the side of all of this is regular headaches, amenorrhea {aka irregular or non-existent monthly periods} and intermittent bouts of labored breathing. And all of this combined contributes to my anxiety. Anxiety makes my stomach and hormones worse and a vicious cycle is created. From the outside I appear totally fine. I am young and still in my early/mid 30’s, I exercise regularly, and I eat clean and nutritious foods. But for some reason, the inside of me is not appreciating my efforts toward healthy living. Get it together, body! I’m trying here!

Through a LOT of trial and error, I have discovered one thing for sure: my body does not like gluten. While I have not been diagnosed with Celiac disease {which is a serious autoimmune disorder that occurs in genetically predisposed people where the ingestion of gluten leads to damage to the small intestine}, I have had several blood tests show that my body is gluten-intolerant.  My official diagnosis has since been labeled “Non-Celiac Gluten Sensitivity.” There were several {read millions} of steps involved in this conclusion.  But it primarily boiled down to my trip to a local wellness center where I had an IgG blood test, which measures the level of IgG antibodies in the blood.  Without getting too science-y, the existence of certain IgG antibodies can demonstrate a food allergy or intolerance. My IgG test results show that my body loves fruit and veggies, but does not love gluten or dairy. So I formally parted ways with gluten and dairy a little over a year ago. I’ve since tried experimenting on my own by reintroducing those foods in very small portions. The results: the occasional Greek yogurt or tiny bowl of ice cream is harmless; a morsel or two of gluten basically leaves me bed-ridden or curled up in the fetal position on my couch. While totally and completely eliminating gluten is not exactly fun and requires more research than you’d think because gluten sneakily appears in items other than just bread and pretzels {did you know soy sauce and most salad dressings contain gluten?}, I honestly have rejoiced in my “gluten is lethal to my body” discovery because it provides me with an answer! It gives me something tangible that I can work with and that I can consciously avoid with a little effort and a lot of planning ahead. And I’m a planner anyway, so #winning.

Above are a couple snapshots as to what the IgG test results look like. You can see that there are ranges. The shorter the bar juts out to the right, the less intolerant I am to that food.

The gluten sensitivity discovery has for sure made a positive impact. But I am not totally cured. I still experience symptoms even when I avoid gluten and dairy. I still have some symptoms that I’ve not even come close to fixing. I still do a ton of research. I still continue to buy and try different supplements that others swear by, only to mostly be let down after experiencing zero improvement from the 30 day supply {but I’m clearly not eliminating those attempts because I added 3 items to my cart at https://www.iherb.com/}. On a positive note, I found an amazing new primary care doctor who has already done more for me in one appointment than my last doctor did in two years and my health insurance just changed for the better last month and from that, so I have some additional specialists available to me now that I did not before. For me that means more phone calls, more calendaring of appointments and more new-patient paperwork, which really does get exhausting.

While being your own health advocate is time consuming and can be very frustrating, perhaps the worst part of dealing with these issues is feeling very misunderstood and alone in my situation. When trying to explain my situation to others I get a lot of eye rolls and “oh please’s”. Because of my healthy lifestyle and fitness-focused Instagram account, several people in my life make fun of my Instagram feed and most people truly believe that I just don’t want to eat carbs or get fat. And because unless you are my Mom and have seen my protruding and bloated belly during an episode, my issues are invisible. I am not bleeding. I am not wearing a cast. I don’t complain and vocalize my symptoms every time they occur. I don’t take sick days at work when my entire body aches and getting dressed in business attire is a major feat. But take it from me, you do not have to be bleeding from the head or limping on crutches to be suffering from a genuine, legitimate physical ailment. It might be mostly undiagnosed, but the struggle is real.

This lifestyle for me right now can be incredibly limiting. But I cannot let it define me and I refuse to spend any more time trying to force the people in my life to understand. While the sympathy would be nice, I do not need it to drive me forward in my journey. I will still get excited when a family member or close friend asks me how I’m doing or asks me questions about my gluten sensitivity or expresses concern over my quest for answers to my many unanswered health questions. But ultimately, I only need myself. I need to remain steadfast in my mission to finding a cure. I need to continue researching and making appointments with specialists.  Standing still is not an option for me and I am determined to continue on my journey while remaining true to myself and practicing my healthy lifestyle to the best of my ability, and that includes posting gym selfies and colorful salad shots on Instagram, even if I get some flack for it from the non-believers.

And for those of you struggling with similar health issues or with similar struggles on a journey towards diagnosis, hang in there! We are in this together.