another diagnosis (sort of) & mindset

another diagnosis (sort of) & mindset

(Check out part 1 of my autoimmune diagnosis story here)

After considerable research on my own, the decision to start the autoimmune protocol (AIP) and find a functional medicine practitioner was obvious. AIP was not something I could handle on my own without the supervision of a medical professional. I found Dr. Schmidt through the Institute of Functional Medicine database. Luckily I was able to get an appointment only 3 days after my last appointment with my PCP. I spent those 3 days reading as much as I could from “The Autoimmune Wellness Handbook” and “The Root Cause”. My goal throughout this entire process is to be the most informed patient and advocate I can be for myself. I’ll discuss this in more detail in a future post, but it’s been really important for me to fully understand not just my diagnosis, but symptoms, lab work, root causes, and triggers.

During my first appointment, Dr. Schmidt immediately suggested several supplements, tested me for celiac disease, and had me fill out an intense questionnaire including everything from my current symptoms to my entire medical history. One of my first questions to him was whether my IUD could have triggered an autoimmune response. He said it probably wasn’t completely to blame, there are a lot of factors that go into the expression of an autoimmune disease, but it is possible that it was a small piece of the larger health puzzle (“the straw that broke the camel’s back” as he put it).

The blood test for celiac disease ended up being unclear as to whether or not I have it, but I did test positive as a carrier for the genes responsible for celiac. I have not done extensive research on the subject (yet), but there is a strong connection between Hashimoto’s and celiac disease. That, and Dr. Schmidt’s strong advice to go gluten free, was enough for me to cut out gluten for good.

When I received my diagnosis of Hashimoto’s Thyroiditis and then celiac disease, the control freak in me immediately went into power fixing mode. I kept thinking, “I’m not THAT sick”, “this is temporary”, “I don’t have to be super strict about food”, “I’ll be fine”. Even when I planned to start the protocol, even when I was spending days stuck in bed from fatigue and brain fog, I don’t think I fully acknowledged the gravity of what I was doing and why.

I kept minimizing the reality of what these diseases mean for my life. It’s a massive change. A change in not just the food that I’m eating, but my entire lifestyle.

I never really gave myself a chance to really let the emotions of the diagnosis wash over me until I was talking to Dr. Schmidt. Because my celiac diagnosis was a little fuzzy, I asked him if I had to be super strict about gluten. Could I still consume things that said “may contain traces of…”? Could I have occasional pasta and still be fine? The answer: hard no.

It wasn’t until this moment that it hit me — I’m actually sick. Potentially forever.

This is something that I have to start taking very seriously and if I want my health back, my life is going to be completely different. This isn’t just a short term diet to lose some weight and eat healthy and then I enjoy food again. This is something I am going to have to be vigilant about for the rest of my life.

Autoimmune disease sucks. Navigating a diagnosis and all the conflicting medical opinions and advice and medication and supplements and theories and nutrition plans sucks. Living in fear of a flare up sucks. Figuring all of this out while living in a foreign country and continuing to travel is really hard. But life goes on.

That said, I am grateful for a lot of things. I’m grateful that I was diagnosed after only a couple years of symptoms, most of which were not extreme until the past year. People can go decades with doctors not taking them seriously and before receiving a concrete autoimmune diagnosis. I’m also grateful that while no autoimmune disease is curable, there is the potential to mitigate symptoms and even possible complete remission through diet and lifestyle changes. I’m hopeful for the current state of the autoimmune community. There are so many resources out there that just weren’t there even 5 years ago.

As I write this post I’m on day 33 of my elimination diet. Aside from still having some symptoms and bouts of fatigue, my symptoms have drastically improved. Even being able to focus on writing this post and putting in the energy and creativity that goes into maintaining a blog is a huge step for me.

That brings me to the topic of this blog. I’ve wanted to run a blog for a long time. I have published on and off a bit, mostly sharing travel photos, but I was never passionate about just sharing content for the sake of sharing content. I didn’t feel that I had enough original content to add to the noise that is social media. Sure, all of my photography and experiences are original to an extent; but what was I adding to the conversation? To the “community” (can’t say that without hearing marcel the shell with shoes on). My insecurities about sharing my point of view have now changed. They’re outweighed by my need to start sharing my story and hopefully someday help others living with chronic illness (for now I’m just going to focus on my wellness journey… I’m learning to take baby steps).

This blog is a way of sharing my stories of navigating autoimmune wellness, and sharing what I learn along the way.

 

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4 thoughts on “another diagnosis (sort of) & mindset”

  • I’m sorry to hear of your illness and what you’ve been through,but I am happy that you’ve been diagnosed and have a handle on it. My niece who is now 21 and graduating from St. Michael’s college soon has Celiac disease and has been on a gluten free diet for a couple of years now. I read your blog and hope to follow your progress. Keep the faith and keep your chin up Alicia. . Feel better soon and know that we’re thinking of you.☺

    • Thank you! <3

      I'm feeling a little better about traveling while gluten free after our trip to Ireland. All of the restaurants we went to were so accommodating and helpful with the menu!

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