My Gluten Free Journey

My Gluten Free Journey

Before I start talking about, sharing, and reviewing gluten free items at the park (and probably in my travels outside the parks as well) I wanted to share my gluten free journey!

To start, for those who don’t know, Celiac Disease is an autoimmune disease that attacks the lining of your small intestines. When a person who has this ingests gluten their body mounts an immune response attacking the villi that lines your intestines. Villi are small hair like projections that help with nutrient absorption and when attacked erode away leaving a virtually flat surface. This is what leads to the inability to absorb nutrients. They say this disease affects about 1 in 100 people, however many go undiagnosed for a long long time due to it’s symptoms being so similar to other health issues. But I’m one of those people who, after said long time, was diagnosed and now lives a completely gluten free life.

I have had various health and stomach problems just about my entire life. It became something I was just used to. I had been to the doctors a bunch of times, but they either brushed it off or nothing really ever came about from it.

Then came my senior year of high school. I had a very stressful and awful start to the school year (which they say can exacerbate or truly bring on celiacs) and my stomach problems got a thousand times worse. I went to see the doctor several times during this period. However, they still brushed it off, this time saying it was stress, and I went on.

One evening I went out to eat with a group of friends. We ordered pizzas to split and I had a few pieces. My stomach pains started before we even left the restaurant. On the drive home the person driving couldn’t go fast as the motion and speed made it even worse. Literal stabbing pains to the point of tears, and I don’t cry easily. 

When we pulled into my driveway I rushed inside, got sick, and couldn’t move out of the fetal position. My friend told my mom something was seriously wrong and back to the doctors we went. The doctor was so sick of seeing us, and my mom constantly insistent that something was really wrong, that she said “fine, we’ll do all the blood tests possible”. When I got my blood drawn I actually passed out because they took so much and I hadn’t eaten…My doctor told me I couldn’t eat with these blood tests. When I came to they let me know I could’ve eaten *face palm*.

A week later we got a call from the doctors with a nurse saying that all the blood work came back normal. My mom said she wanted to come in and speak to the doctor directly about it, and good thing she did. My doctor literally walked in, said “wow you’re gluten level is off the chart, good luck with that”, then walked back out. No I can’t make this sh*t up. After being not that great of a doctor with all of this, that’s how you handle this info…cool cool cool. Granted, this was before celiacs and gluten free were a well know thing, but still.

We went home and turned to the good ol Google search to find out what this all meant. Again, this was before it was a well known thing, so info was scarce. What we gathered from the articles we found was that I could now eat a very limited amount of things: fruits, veggies, potatoes, and rice (we all know there’s more to it than that, but that was our take away back then as the lists were not comprehensive). Talk about devastation.

This all happened the week of my 18th birthday (the week of January 29th to be exact). So, I always say it was my 18th birthday present to myself, because as much as it sucked it also helped.

Sucked: I definitely went into some what of a depression. I come from a large Italian family, so there went a lot of my favorite meals. I lost a ton of weight, and hated that I couldn’t eat certain things I loved. It altered my social life, as food is a big component in most of those situations. I also got really sick post diagnosis and diet change, my immune system took a huge dive.

Helped/good things: I learned that a lot of my other health issues were because of being misdiagnosed for so long: joint pain, nausea, fatigue, brain fog, anemia, head aches, damage to my teeth enamel, lethargy, mood swings, and balance problems (don’t get me wrong I’m still not graceful at all but it used to be worse…also how random of a thing, right?). All of these led me to the doctors at some point in my life, but with no diagnosis or

At first adjusting and navigating this new life was hard. My family also took a bit to adjust, having to get all new cooking and baking items so they weren’t contaminated, figuring out what I could eat with the family, and my mom might’ve forgotten to get me a gluten free cake for my birthday and high school graduation. But, once we got the hang of it the change in my daily life health wise was great, eliminating so many of those health problems listed above

It was a huge bummer to be graduating high school and going to college with this diagnosis just happening. I wasn’t able to do a lot of the “normal” or “fun” college things. My college had only one or two options for me to eat at some of the dining halls on campus, really restricting where I could go, and most were not good. Majority of the time I just brought my own food even though I had to pay for the meal plan. I couldn’t drink beer or most liquor drinks. This was before we really knew which liquor was or was not gluten free, and before liquor companies started adjusting how it was made to be gluten free. So, going out, whether to a party or bar, was hard, and I tended to drink the same thing over and over again to where I got tired of it (I still can’t drink Malibu rum to this day). No Sunday brunches or quick meals between classes. No late night pizza runs, fast food trips, or drunkenly ordering Chinese food. I hated feeling like I was “missing out”, but hated more the stabbing pains and sickness when something was cross contaminated or not even gf when they said it was.

My blood level was so “off the charts”, as my doctor had put it, that I never got a stomach biopsy which is what they often use to diagnose. However, a bit later I started to have bad stomach pains again to where even bland rice hurt. I was going to a different, much better, doctor and this time I got a stomach biopsy. They discovered what was wrong, but they could also see I still had damage to my villi, letting me know for sure that I have celiacs (one can dream it wasn’t a proper diagnosis right?). Even after you start living a gluten free life your villi can take anywhere from 3-6 months to two years to heal.

I did have some problems when being gluten free became a sort of “fad diet” as restaurants would have gluten free menus to accommodate this but wouldn’t understand or take cross contamination seriously and I would get sick…But I won’t get started on this subject…I lived in LA for 5 years where it was a big thing, and feel very passionately about it (aka I freaking hate it)

 

Over the years I’ve learned that I just have a very sensitive stomach. I have found other specific things my stomach doesn’t like: dairy, almost all forms of nuts, spicy items, strong acidic foods, peanut butter, and bell peppers. I say my stomach doesn’t like them because I freaking love most of those foods. I have almost eliminated these items from my diet as well. Ice cream is one of my five main food groups so I still enjoy that from time to time, as well as spicy or acidic foods. I just eat them in very small quantities when I do.

I have now been gluten free going on 12ish years. I don’t really remember what “normal” food tastes like, often having people try what I’m eating to see how it compares. I have the hang of going out to eat, what to look for, and what to order.

Note: I use the Find Me Gluten Free app allllll the time! If you are gluten free and do not have that app I cant recommend it enough! It pulls up the local restaurants who have gluten free options or menus. It then has reviews of these places by other gluten free people on how good it is, if they got sick or not, and the menu items they have. For reals, go get it.

 I love that so many places have gluten free options or menus, and still get ridiculously excited over gluten free goodies, as I call it…as in look like a 5 year old jumping up and down excited. I’m so happy that there are more and more gluten free products being made, and that they just keep getting better and better. When I first got diagnosed gluten free bread was ridiculously dry to where you could barely eat it, and most of the products out now did not even exists. Now a days there are so many types and brands out there, it’s amazing! 

I always love giving info when people ask about it, or are having stomach problems. I love trying new recipes and new restaurants that have gluten free menus. I love love love that the parks have options and that they are actually super delicious. The parks are probably my favorite place to try new things as they just keep adding more and more allergy friendly items.

 

When CMC first started I didn’t plan on creating the gluten free “menu” as I like to call it. I made the first gluten free shirt just for myself because I never felt I could wear the “only here for the snacks/mickey waffles” shirts, but I really wanted to. That’s why the first design for gluten free mickey waffles was created. But then so many people commented on it or asked about it in the park that I realized there is a pretty big gluten free disney community, and they deserve shirts too! Thus the start of the gluten free menu items! Which I am working on new designs for!

 

 So, if you’ve made it through this novel of a blog post thank you! As much as I still get butt hurt about having to be gluten free at times, I’m happy I got diagnosed early-ish on in life and know I’m living a much healthier and happier life because of it. Can’t wait to explore, discover, eat, and share gluten free foods with you!

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