Growing Up Celiac- Wait, I can't eat WHAT? (The Diagnosis)
So, let's begin this series by going back to where it all started- that infamous, emotional roller coaster ride of a moment every Celiac knows all too well- the diagnosis.
I was seven when I was diagnosed with celiac disease. Now, if you're still not too sure what celiac is, I am not the person to ask for a proper medical definition. I am, after all, trying to become a judge, and not a doctor. I'll explain it in my own terms, however the Celiac Disease Foundation gives a great run-down here:
https://celiac.org/celiac-disease/what-is-celiac-disease/
Celiac is pretty much an auto-immune disease that means your body cannot process and digest gluten. When I was diagnosed around 2004, gluten basically meant anything with wheat, barley, oats, or rye. Today, the "oats" category is a bit less set in stone, however I still stay away from any not explicitly certified gluten free. When someone with celiac ingests something with gluten-containing ingredients, their body reacts in a whole host of unpleasant ways. This varies from person to person, but can include bloating, gas, nausea, hives, diarrhea- I think you get the point.
These may seem similar to reactions people get when eating a food they're allergic to. An important thing to remember about celiac, however, is that IT IS NOT A FOOD ALLERGY. Again, as an autoimmune disease, celiac means that ingesting gluten can do serious, sometimes irreparable damage to your body. This can include the breakdown or flattening of villi (those little finger-like things lining your small intestine to help absorb nutrients), infertility, intestinal cancer, miscarriages, and Multiple Sclerosis- to name a few. This is not to say that there aren't people with gluten or wheat allergies or intolerance- of course there are. However, as a celiac, I am going to speak to experiences with this disease in particular.
So why the impromptu dietetics lesson? Well, at seven years old, I didn't quite understand any of this. All I knew was that, for whatever reason, I suddenly wasn't allowed to touch the bread anymore.
My earliest memories of weekday mornings are filled with stomach aches and cramps after eating a bowl of cereal for breakfast. I don't remember much from before I was five or six, but my parents have filled me in- I was always bloated, always sick, and no one could tell why. My mom had in fact tried to get me tested for celiac as a toddler, as my grandmother has it as well, and was at that point already diagnosed. Our doctor at the time, however, told her there was no use in doing so, that I probably didn't have it, and that it would be harsh to take a little kid off gluten. He refused to test me for celiac, but instead ran a whole bunch of allergy and intolerance tests, all of which came back negative.
Let's just say he got quite the phone call from my mom a few years down the line.
By the time I was seven, my parents had decided enough was enough, and that it was time to get to the bottom of the omnipresent balloon in my stomach. They had also decided that the aforementioned doctor was an idiot, but that's for another time. I was brought in for the first of what would be many celiac blood tests, which, to no one's surprise, came back positive. Ironically, this allowed my seven-year old self a brief period of bliss, as I had to once again eat gluten regularly so the tests could track if damage was being done. I still remember running through the door after getting home that day and shoving a massive hunk of baguette in my mouth. Once the subsequent endoscopy had been done, there was no question about it- gluten was officially the enemy.
My tests were done in Baltimore, Maryland, at the University of Maryland Medical Center. Now, I may be biased, but from what I remember they were amazing. My doctor at the time, Alessio Fasano, is one of the top celiac researchers and doctors globally. He and the rest of the staff provided my parents and me with picture books about celiac, gluten free snacks, and tons of information. We were even given access to support groups, so I could meet other celiac kids.
That said, I hated my new diagnosis. If any of y'all were already gluten free in the early 2000's, you'll remember how very different the food selection was at that point. There were few kid-friendly gluten free alternatives, and fewer that even somehow resembled the foods they were trying to recreate (I can say, though, Kinnikinnick and Glutino have been there for me since the beginning). The first bowl of pasta my mom made me as a new celiac tasted like and resembled something between starch and glue. School parties and celebrations now sent me home crying, because yet another kid had brought in cupcakes I couldn't eat. I had to continuously explain to my friends why there was a weird, puffy rice cake on my sandwich where the bread was supposed to be.
Though I felt better physically, and my head was clearer, I was angry and confused. The problem was, of course, that I didn't have anyone to be angry at. It was not as though anyone had done anything to me- on the contrary, my parents, in their determination, and the doctors had probably saved me from a whole host of severe medical problems. While I understand this now, I didn't then, which meant all the more tears after each party or sports banquet. Within a few years, as we found more and more new gluten free products to try, and I learned more about my disease, things got better. I don't want to give away too much as there are many more posts to come, but I am glad to say I haven't come home crying over not being able to share the class cupcakes in years.
Hope you guys enjoyed this post, and until next time-
Peace, love, and gluten free donuts,
Natalia
I was seven when I was diagnosed with celiac disease. Now, if you're still not too sure what celiac is, I am not the person to ask for a proper medical definition. I am, after all, trying to become a judge, and not a doctor. I'll explain it in my own terms, however the Celiac Disease Foundation gives a great run-down here:
https://celiac.org/celiac-disease/what-is-celiac-disease/
Celiac is pretty much an auto-immune disease that means your body cannot process and digest gluten. When I was diagnosed around 2004, gluten basically meant anything with wheat, barley, oats, or rye. Today, the "oats" category is a bit less set in stone, however I still stay away from any not explicitly certified gluten free. When someone with celiac ingests something with gluten-containing ingredients, their body reacts in a whole host of unpleasant ways. This varies from person to person, but can include bloating, gas, nausea, hives, diarrhea- I think you get the point.
These may seem similar to reactions people get when eating a food they're allergic to. An important thing to remember about celiac, however, is that IT IS NOT A FOOD ALLERGY. Again, as an autoimmune disease, celiac means that ingesting gluten can do serious, sometimes irreparable damage to your body. This can include the breakdown or flattening of villi (those little finger-like things lining your small intestine to help absorb nutrients), infertility, intestinal cancer, miscarriages, and Multiple Sclerosis- to name a few. This is not to say that there aren't people with gluten or wheat allergies or intolerance- of course there are. However, as a celiac, I am going to speak to experiences with this disease in particular.
So why the impromptu dietetics lesson? Well, at seven years old, I didn't quite understand any of this. All I knew was that, for whatever reason, I suddenly wasn't allowed to touch the bread anymore.
My earliest memories of weekday mornings are filled with stomach aches and cramps after eating a bowl of cereal for breakfast. I don't remember much from before I was five or six, but my parents have filled me in- I was always bloated, always sick, and no one could tell why. My mom had in fact tried to get me tested for celiac as a toddler, as my grandmother has it as well, and was at that point already diagnosed. Our doctor at the time, however, told her there was no use in doing so, that I probably didn't have it, and that it would be harsh to take a little kid off gluten. He refused to test me for celiac, but instead ran a whole bunch of allergy and intolerance tests, all of which came back negative.
Let's just say he got quite the phone call from my mom a few years down the line.
By the time I was seven, my parents had decided enough was enough, and that it was time to get to the bottom of the omnipresent balloon in my stomach. They had also decided that the aforementioned doctor was an idiot, but that's for another time. I was brought in for the first of what would be many celiac blood tests, which, to no one's surprise, came back positive. Ironically, this allowed my seven-year old self a brief period of bliss, as I had to once again eat gluten regularly so the tests could track if damage was being done. I still remember running through the door after getting home that day and shoving a massive hunk of baguette in my mouth. Once the subsequent endoscopy had been done, there was no question about it- gluten was officially the enemy.
My tests were done in Baltimore, Maryland, at the University of Maryland Medical Center. Now, I may be biased, but from what I remember they were amazing. My doctor at the time, Alessio Fasano, is one of the top celiac researchers and doctors globally. He and the rest of the staff provided my parents and me with picture books about celiac, gluten free snacks, and tons of information. We were even given access to support groups, so I could meet other celiac kids.
That said, I hated my new diagnosis. If any of y'all were already gluten free in the early 2000's, you'll remember how very different the food selection was at that point. There were few kid-friendly gluten free alternatives, and fewer that even somehow resembled the foods they were trying to recreate (I can say, though, Kinnikinnick and Glutino have been there for me since the beginning). The first bowl of pasta my mom made me as a new celiac tasted like and resembled something between starch and glue. School parties and celebrations now sent me home crying, because yet another kid had brought in cupcakes I couldn't eat. I had to continuously explain to my friends why there was a weird, puffy rice cake on my sandwich where the bread was supposed to be.
Though I felt better physically, and my head was clearer, I was angry and confused. The problem was, of course, that I didn't have anyone to be angry at. It was not as though anyone had done anything to me- on the contrary, my parents, in their determination, and the doctors had probably saved me from a whole host of severe medical problems. While I understand this now, I didn't then, which meant all the more tears after each party or sports banquet. Within a few years, as we found more and more new gluten free products to try, and I learned more about my disease, things got better. I don't want to give away too much as there are many more posts to come, but I am glad to say I haven't come home crying over not being able to share the class cupcakes in years.
Hope you guys enjoyed this post, and until next time-
Peace, love, and gluten free donuts,
Natalia
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