The Journey Continues

“Owning your story is the bravest thing you will ever do”

Brene Brown

When I found out I was pregnant in 2011, I was underweight and had been all of my life. As the pregnancy progressed, my OB constantly went back and forth between, “You’re not gaining any weight” to “You need to exercise more and watch what you eat because you are gaining too much weight.” Accompanied with the weight issues came digestive issues. I was told that in pregnancy there is typically always digestive issues with it being either loose stools or constipation. I had these digestive issues for my entire pregnancy, on top of some other rare issues (like carpel tunnel in both wrists).

Fast forward to after I had my son. I breastfed him for about the first year and again was told that the loose stools was a ‘normal’ thing. After I had my son, my weight quickly went back down to my pre-pregnancy weight and stayed there for years, but I also had undiagnosed digestive issues for years as well. When my son was almost 6 years old, I had decided enough was enough. I had been to my regular primary care doctor (pcp) and been diagnosed with IBS then later IBSD. I was tried on every medication prescriptible and over the counter to no avail. They would all work for a day or two, if I was lucky, and then it was like my body became immune to them so I’d stop taking them.

At a rare turn of events, my (very healthy) pcp died unexpectedly the day before I was going back for another evaluation. I ended up seeing the Nurse Practitioner at a later date and she referred me to a gastroenterologist (GI).

After a quick consult with my GI, I was scheduled for an upper and lower (colonoscopy and endoscopy). During my procedures, my GI took a biopsy of both the upper and lower digestive tract. After the procedure when I was woken up, my GI looked at me and said, “you need to start eating a gluten free diet, for good…you have absolutely NO villi left in your digestive tract, NONE. I’ve only ever seen this a handful of times. Your body simply isn’t absorbing any nutrients, which is why you are so thin. This is a textbook case of Celiac Disease. Let’s talk more at the follow up after we get the biopsy results back.”

So there it was…..no more gluten, ever, for good…..I had NO idea what I was in for; this was just the beginning. The first thing I did was go through my kitchen cabinets…..out with the pasta, bread, cereal, snacks, seasonings, you name it. Things I would have never even imagined, gone! I was determined to feel better. It was the start of a journey I didn’t ask for and had no idea what I was doing; it was a learning opportunity that little did I know would make me a life long learner on this topic. As the days and weeks went by, I was constantly checking labels. I wasn’t perfect by any means, I was still feeling horrible, but was also told it’s an extremely long and slow process. Did you know it takes almost a full year to heal your gut? That’s without ANY mishaps! Insane!

One of my biggest symptoms, aside from the obvious digestive issues was being exhausted. I’m talking, can barely stay awake after 8-10 hours of sleep, exhausted. The good thing that came out of this, was I didn’t sleep when my baby slept…..my baby slept when I slept. He became the best sleeper as a baby and still today as an almost 10 year old.

The first symptom to subside was my exhaustion. It was a glorious day when I only slept for about 8 hours the night before and lasted all day without even THINKING about a nap! I felt alive for the first time in over 7 years. I used to have to take my lunch breaks at work to go nap in my car. I wasn’t hungry, I was tired, all. the. time. Once I saw the light at the end of the tunnel with my exhaustion subsiding, I got a burst of mental energy to keep going, but it was hard, extremely hard. No one tells you how lonely this journey is; no one tells you the ridicule you will endure, the criticism, the doubt, the anger from other people (what do THEY have to be angry for anyway?!?!)…..it was [and still is] extremely difficult. This leads to the next step in my journey, the eating disorder.

When people hear the phrase ‘eating disorder‘ most will automatically go to anemic or bulimic, but there are so many other types of eating disorders out there. I had neither of those listed above. My eating disorder became more of a binge eating disorder. It was so rare to me to find food that I could eat with those around me that when I did find it, I would eat and eat and eat, over eating to ensure I wouldn’t be hungry later, you know in case there wasn’t anything for me to eat later. I had experienced many times when those around me knew what I was going through, but wouldn’t acknowledge it and continued to ignore my requests. I wasn’t brave or bold enough to stand up to them at this point, so I always had ‘safe snacks’ in my car, work bag, purse, where ever I could put them so I could sneak away and eat safely……how fucking horrible is that?!?!? As I’m recalling this in this moment, it brings tears to my eyes knowing I put up with this, that I let this happen and the treatment from others affect me so much. Needless to say, as my body started to heal from lack of gluten consumption, my villi started to grow back and do their job in my digestive tract. I was starting to gain weight again. It was an amazing feeling to feel healthy again. To know I was on the right track and making the right choices and they were actually paying off! Things were FINALLY looking up after YEARS of feeling horrible with no answers.

Then came the next chapter…..depression. Between my employer at the time (a mental and medical health facility of all places) and my husband’s family, I was sent into a whirlwind of depression everywhere I turned. It was a constant battle no matter where I turned. I tried depression medication, I tried therapy…..it all helped ‘momentarily’ but nothing really changed. The behaviors of others was still constantly affecting me more than I should have ever given them power to. For a couple years, I struggled more than anything knows, including those living in my home with me. I had absolutely no desire to do or be or exist, period…..then my son would come around and hug me for no reason with the sweetest ‘love you momma’ and my reason was right there, all of it, without a doubt. It became very clear to me that I needed to keep going for him. I needed to beat depression, beat celiac, beat my symptoms to show him that ANYTHING is possible. It was hard and still is on some days, but with the help of some close friends, an online support group for Celiac Disease (HIGHLY recommend these by the way), and a LOT of effort, I kept/keep going.

I gained a lot of weight during my depression, so much so that I got back up to my peak weight from my pregnancy, except I wasn’t pregnant this time. It’s been a crazy journey. My journey isn’t over though. While I have been gluten free for over three and a half years now, my digestive track is still not ‘normal’ by any means. It has been a continued journey of self-awareness. I’ve taken many different food allergy and food sensitivity tests and found out that I have quite a few more battles ahead of me. I’d like to say that none of them are as complicated as Celiac disease, but some of them are unfortunately.

I used to hide my disease, I was ashamed of it. I didn’t want people to know because I was different. It’s still not a topic I like to talk about, however, when I find out that someone near me is just starting out on their journey….I’m an open book because I don’t think I will ever forget that feeling of loneliness and isolation. It’s simply indescribable and if I have anything to do with it, NO ONE will ever go through that alone, like I did. On the flip side, new people in my life find out and ask questions. I like these conversations, for the most part, as long as the person/people are genuinely asking to be educated not to judge, and you can definitely tell the difference. I love being able to help others understand the disease and that it’s an entire lifestyle change. It’s not a ‘fade diet,’ it’s not something medication can change (fun fact: there is currently no cure for Celiac Disease. There is no medication for Celiac Disease). If you choose not to lead a gluten free lifestyle, there is no help.

Over the years, keep in mind I’m only three and a half years into my diagnosis currently (summer 2021), I have learned that gluten hides in the most obvious of places such as food (including seasonings, dressings, sauces-oh sauces is a HUGE one) and drinks (think beer, obviously made of wheat and barley), but it’s also in some of the most UN-suspecting of places like hand sanitizer, make up, hair products, craft products, and medications. Everyone reacts differently, but some of those have been major eye openers for me.

Some else no one talks about is how having an auto-immune disease (such as Celiac) often times leads to other issues. For me it has lead me to Polymorphus Light Eruption (an allergy to the sun-I wish I was kidding here), a Vitamin E sensitivity, an allergy to adhesives-like Band-Aids, K-tape I typically used for muscles and sports injuries (many have gluten in them as well), and other food related diagnosis (like Collagenous Colitis for me) and sensitives (personally this list is ongoing but some of the major ones are corn, seafood, avocados, grapes, and the list goes on).

It’s not over for me, not even close. I am a learner by heart though, it’s what lights my soul on fire, learning. I will continue to grow and learn and educate those around me that are interested and simply leave the rest in the past. I welcome any questions about my journey, any of my diagnosis, or guidance I can help with.

Looking at me you would have no idea about any of the above you’ve just read, which takes me to the well known saying of “you never know what someone is going through and sometimes the people with the biggest smiles are struggling the most, so be kind.” I will forever be the “I’m fine” kind of person and many of people will continue to be fooled by my smile, this is a silent struggle and a very personal one at that. Here’s to raising awareness and hoping that my story is relatable to even just ONE person out there would make it all the more worthwhile for me.