Oh look, another gluten free bitch.

My journey as a fat person in the US medical system and beyond.

You probably found me because you, like me, have celiac or an allergy to gluten. I took that chance when I put it in my blog name. Everyone's journey to the diagnosis looks different, and I'm here to share mine.

Childhood

My mom knew something was wrong long before the doctors did. As a kid I had a bloated belly and skinny neck, I was often lethargic, and would have severe stomach aches and cold sweats that consistently ended me up in the nurse's office. Most notably though, I was ALWAYS hungry. My mom would feed me a full dinner and I'd still be asking for more, especially on bread or pasta heavy nights. That's because my body wasn't digesting food properly, leaving me without the nutrients to keep my body functioning.

Over the years, my mom fought for me and reading my extensive medical records now is such a trip. The doctors didn't believe her. Many of them make it sound like I was a kid pulling the wool over my mom's eyes in order to skip school, so I am so incredibly thankful that my mom was my advocate through all of this.

Procedures

Funny story, at 7 years old the doctor ordered a colonoscopy to see if there was anything causing issues in my intestines. It's one of my most vivid memories actually. I was in a little kid gown with my ass out for the world to see. At this point, I was already deeply under the impression that I had a bad body because I had moved from being skinny necked and bloated to being thicker than a snicker. My overeating was the issue to the doctors. But I digress.

My cute little ass is shining in the spotlight facing towards the door, while I'm watching them prep a long snake. They show me the camera on the end and point at the screen above me. I get to see my own guts? Cool. I was weird.

Just as they were about to start, in walks a doctor and about 5 young medical students. They're about five feet from my bare bum and proceed to watch intently as the tube is inserted. All I remember thinking is, I NEVER want their job. And I've kept that promise.

More Procedures

Other than the colonoscopy, I was also x-rayed, endoscopy-ed, and had tests run out the wazoo. The diagnoses changed pretty often, but it always felt like they were grasping at straws. One x-ray tech even thought that I had a needle in my digestive tract. Spoiler alert, I did not.

In the end, the doctors labeled me with IBS (Irritable Bowel Syndrome). Which really meant, "We don't know what the fuck is wrong with you, so you're just going to have to deal with it."

So that's what we did. We dealt with it.

Teenage Dirtbag

For years I dealt with the pain, and thankfully it dulled. But the hunger never went away.

I was growing out as much as up, which was a great source of shame for me. As a kid I was taller and thicker boned than 90% of my classmates, so add fat to that and I definitely didn't fit in.

Middle school was harsh, not only at school but at home as well. My weight was an issue to everyone around me. Bullying and being left out were par for the course both at church and school. One adult looked at the stretch marks on my arms and said, "We need to do something about that." After that, I hid my arms under long sleeve shirts until I was well out of high school.

After telling my middle school counselor that I was being excluded and made fun of, she said, "Well, you are the biggest in the class so..." and allowed me to finish that thought in my head. It was my fault that I was being left out.

One time at the Ohio State Fair, a lady walked under me when I was repelling down from the giant stalk of corn that doubled as a climbing wall. She wasn't supposed to be there, so when we collided she grabbed her neck and said, "Man kid, you need to lose some weight!" and proceeded to bitch about me to all the strangers around us. I'm still angry about it.

So if you're the jerk at the Ohio State fair back in the mid 2000's who got sat on by a fat, insecure, beautiful little girl who couldn't advocate for herself, GO FUCK YOURSELF.

Humans are not all piles of shit though. Two wonderful strangers, older ladies, flocked to me after that incident at the cornstalk and bathed me in love and showed utter disgust for the mean woman. I don't like to think about this incident, but it always helps to remember that their words were balm for my tender breakable soul.

Whoever they are, they made a difference in my little life.

Side Effects

When I hit 8th grade, so did the intense depression and anxiety. School was manageable up until that point and I had stopped seeing doctors for anything other than my "weight issues." I don't remember the diets that they tried to put me on, thankfully, because I feel like that would have been scarring in its own way.

From 8th grade through 12th, I experienced severe lethargy, anxiety, panic attacks, agoraphobia, self harm, depression, and attempted suicide at one point. Then followed an onslaught of different medications to level me out, but nothing ever worked. It was only when the proverbial shit hit the fan between my mom and a psychiatrist, that we found hope.

My senior year I wanted to die. I was also the Homecoming Queen and had some of the best friends I've ever had, but I still definitely wanted to die. And I thought that was normal. So I started seeing this new doctor in town who told me that I was bipolar.

Sure, whatever, please fix it.

He indeed did NOT fix it, but made it ten times worse. This doctor had a closet full of medications, and when one didn't work, he would pull out a different one and hand it to me. I was a zombie. Watching my body walk through the world but I was not there. Thankfully my mom saw this and dragged me back into his office.

I don't remember exactly what happened but there was yelling between him and my mom. He was incredibly condescending, so she went Karen on him, but the good, justified kind of Karen-ing. We never saw him again.

Getting Some Goddamn Answers

Our family doctor then referred us to a new practice in town as a last ditch effort. This place was holistic and very different from the other paths we tried. I was sure they were going to prescribe me vegetables and essential oils or some shit.

Nope! The very first test they did showed that I had been living with undiagnosed celiac my entire life. Apparently, this disease was not well known when I was a kid living in the middle of bumfuck nowhere Ohio, and as a teenager I presented as obese, so it couldn't be celiac in the eyes of most doctors.

Celiac often shows up as a person who is waif thin because they aren't getting those essential nutrients. There was almost no information out there about us who gain weight as celiacs, which thankfully has started to change as of late.

As soon as I started eating the way my body needed me to, I lost 40 pounds in three months with no changes except for diet, my anxiety and depression disappeared, I had energy that I had never known was possible, and my stomach pain was gone.

I fought for almost 20 years for a diagnosis. And I've met other people who had to do the same.

So now what? You're cured, right?

Here's the thing. I'm bad at being celiac. I've got this whole self hatred thing going on that was learned from years of being gaslit by doctors and harassed about my weight. Food was my learned comfort mechanism. So when you say, "You have celiac, you need to eat gluten free or you'll ruin your health." I say, "But what about cheese danishes?!"

And that's why I'm here. Because I suck at this and I'm trying to be better. Not because I want to lose weight. If that's why you're here, you're in the wrong place. I love my body at any size, but I would also like to not get intestinal cancer.

So this is me, 400+ beautiful pounds and a diagnosis with a cure that goes against everything I believe in (bread. I believe in bread.) Here we go.

-Lo