Eleanore the Angry Celiac Vs. Everything

Dearest Silly Yaks (and regular yaks, too),

Over ten years ago I was diagnosed with Celiac disease and my life, much like my diet, was flipped upside down. There was thankfully no Demogorgon in my Upside Down, though it often felt like one was living in my abdomen.  Since I started my blog, I have become fairly transparent about most of my health issues and diagnoses; but the one I have been oddly removed from has always been Celiac Disease. This isn’t for a lack of wanting to express my thoughts on living with the disease. On the contrary, I have been purposely biting my tongue about the disease that I suffer from because of the stigma that comes along with the way of life I am forced to live due to the illness. Finally, I have decided to release my tongue from the clutches of my misaligned teeth. This decision was largely brought on by an unexpected muse; my phone.

While I am unsure how it became activated, my phone has an app that constantly sends me little notifications. On occasion it can be useful because it tells me what the weather will be, what new albums have come out, and even tells me when the St. Louis Blues are kickin’ ass. For the most part, it is a handy little addition to my robot friend. However, it also finds articles it thinks are relevant to my life. Nearly every day, at least one of these articles has a title that reads, “Irish People are Wasting Money on Gluten Free Food!” or, “The Truth About Gluten Free Diets!” and my favorite ones, “Gluten Free Diets are Actually Dangerous!”

Yes, I agree that gluten free diets are a fad…to an extent. It is true that those who are not Celiacs or allergic to wheat should not be eating gluten free because it can have adverse health effects. Nevertheless, it must be said I am one thousand percent fed up with the fact that the media has been focusing on the fad while Celiac disease as a whole is left completely in the dark. I am exasperated by the fact that the gluten free fad gets more attention than the disease that has caused so  much struggle and suffering in both my life and millions of others.

While I cannot speak for every Celiac, I am sure most of us would agree that we are sick of the dirty looks, rolling eyes, scoffs and skepticism we receive throughout our daily lives. We are exhausted of the scathing questions laced with doubt aimed at us because of how our disease alters our diets.  Lately, I have realized that one of the reasons I am especially aggravated by the never ending slew of articles and videos about gluten free diets is that while diet is a tremendous part of a Celiac’s life, these ignore everything else that entails being a Celiac. It ignores the depression, the brain fog, the weakened bones, the nerve and muscle issues, the exhaustion, the hospitalizations, and the countless other attributes of the disease.

Every time I see one of these articles pop up, I feel shamed for an illness I had no choice in having. Furthermore, I feel completely ignored, my serious illness being constantly ridiculed by major media. It seems the entire world is making a mockery of my disease. As I have said before, no one in their right mind would doubt or make fun of someone with diabetes even though they must adhere to a strict diet. Why must it be any different for us?

I have tried so many times to write a post like this, and each time have ultimately decided not to post it. I would think to myself that I didn’t want to come off as angry or crude, or dip my foot into the never ending clusterfuck that seems to be the conversation about gluten free eating. After too many years, I have been sent over the edge.  Our society is focusing on the wrong part of gluten free eating, and those such as myself suffer for it. 

Of course, people should think logically about their own specific health before following a diet of any kind. But this fad should not be the only focus. The primary focus should  be aimed towards how to be supportive of Celiacs, and most importantly of all, empowering someone diagnosed with Celiac disease to make a healthy transition to their new lifestyle that can end up truly saving their life.

Instead of all the doubting and intent on proving us wrong, why don’t we spread more help and information that will better the lives of those who are chronically ill with a serious disease? Not to mention, most people I have met that are non-celiac gluten free could literally care less about those who say it doesn’t make them any healthier. They will do whatever they want, as they should, and will figure out what is best for them in the long run. Regardless of the fad, I am sure that the repercussions of a normal person eating gluten free are not nearly as terrible as a Celiac eating normally or not having enough information.

I’m sure this one, angry little post won’t change much, though if it opens the mind of even one reader, I’d consider it a success. Celiac disease is a real illness and a dangerous one, and it is time that we turn the spotlight on what truly matters – helping those who are ill get better in a healthy way, and not shaming them in the process.

I think garlic bread would have to be my favorite all-time food. I could eat it for every meal. Or just constantly, without stopping.

~Scott Pilgrim (I’m sure he meant gluten free bread…right?)

 

 

Eleanore Vs. A Duel with her Lunchbox

Dear sentient creatures who require nourishment in various forms,

This morning I had several miniature battles. First was the battle of getting out of bed on a cold day. Each time I thought, “I should really get up,” I burrowed a little deeper into my blanket burrito, because I love to be warm and hate to be cold. I eventually convinced myself that the sooner I leave the warm, the sooner I may return to it. Then there was the battle of how to style my short hair, which I never seem to win. As my pain and sickness began to rush into my body as they do every other morning, I went about the house continuing my morning ritual.

As I put my lunchbox together, I realized something that I believe I have felt for years; I really, really fucking hate having to pack my lunch. In fact, I loathe the action so much I actually did the dishes before packing so that I could put it off a few more minutes. That’s how much I despise having to deal with my lunchbox.

Being the Eleanore that I am, of course, I became obsessed with trying to figure out why I am so loathsome about having to pack my food. I knew it wasn’t because of the food I was gathering; I’ve become a pretty great chef (at least, so I think).Finally I realized the reason I constantly duel with my lunchbox is because most others simply don’t have to, and every time I have to do so, it yet another reminder of how different I truly am.

Not only do I have Celiac disease, but as a symptom of both that autoimmune disease as well as Chronic Fatigue Syndrome, I have 13 other food allergies. About 80% of those allergies can be potentially fatal, as proven by my 16 episodes of anaphylaxis. As you can imagine, having all of that working against me makes it extremely difficult to eat anywhere save for my own home. No matter where I go or for how long, I must always have enough food to get me through whatever the day consists of.

Back home in California there was a magical place known as In-N-Out burger. It was the only place in California, aside from Zest Bakery in Menlo Park, that I was able to eat at. As much as I loved Zest, it was quite far away from my home, and there was only one of them. The entire state was polka dotted with In-N-Out Burgers, which meant that regardless of where I went, at least for a few meals, I could count on them. While eating burgers and fries isn’t the healthiest option in the world, it was nice to have them to rely on if I was too tired or accidentally messed up a meal plan (which I still do more often than I should).

Now that I live in Missouri I am without my beloved double-double. There are a few wonderful bakeries here that cater to gluten free people, but as much as I like to think it’s possible, I can’t survive on cinnamon buns and cupcakes alone. Wait…can I? No. No I can’t, but a girl can dream.

It’s true that it is probably better for both my health and my bank account to bring home made food everywhere I go, but that’s not even the part that troubles me. What I find myself so frustrated at is the fact that as someone with a plethora of chronic illnesses, I don’t have much of a choice. I either bring my own food, don’t eat at all, or take a risk likely to land me in the hospital. Out of those options, clearly, bringing my own food is the safest.

Those who are fortunate enough to not have Celiac Disease, severe food allergies, or other illnesses that restrict their diets so severely often are not aware of how privileged they truly are. An average person can eat whenever and wherever they want and they don’t have to talk to managers or call ahead only to still be left without anything safe to eat. They don’t have to deal with the anxiety of trying something new, wondering if it will ruin their day and leave them hospitalized. Average people also have the luxury of getting food already prepared from any place they wish on days they’re sick, exhausted or have been running around all day. On my worst days, when I can barely walk, if there isn’t food ready from a different day, I either have to cook or beg someone else to for me. There is no way around it. If I don’t cook, I don’t eat. Even hospital food is unsafe for me to eat; for every night I’ve been in the hospital, I’ve had to either starve through it or someone close to me would have to rush to get me a makeshift bunch of meals.

The last few years I have become truly passionate about cooking and I’m thankful that I have been blessed with some of my grandmother’s gift for making wonderful meals. I try not to dwell on the negative and keep looking ahead, but on days such as these when I’m burned out, I can’t help but wish I didn’t have to cook. Nearly every time I explain to someone my restrictions, the first thing they ask is, “what do you miss eating the most?”  I come up with some random answer, but in reality, there isn’t any one food I long for. Rather, it’s the ease and simplicity of being able to go to a restaurant or being able to order food at home that I miss the most.

Now that all the gloom and doom is out of the way, rejoice, for this post isn’t totally hopeless. When I was 15 I began to suffer from anaphylaxis, and because many times the trigger wasn’t clear, I was told to stay away from many foods just in case. When I was 18, my allergen list was up to 13, and I was then diagnosed with Celiac Disease, and my foodie personality said, “peace out!” as it skipped town. My entire world had begun to revolve around food, yet eating was a living nightmare. Everything either had something in it I could not have, and even if I could have it, the anxiety of possibly having a Celiac reaction or an Anaphylactic response terrified me to my core. I was hungry and miserable sitting in a house full of food that I could have none of.

As I began to understand my illnesses more, got medical help and learned more about my special dietary needs as well as how to cook in general, things got better. I began to take pride in my cooking, and when I succeeded in making something new, I was ecstatic, singing and bouncing about my kitchen. Oh, who am I kidding; I still sing and bounce around my kitchen when I make something delicious, even if I’ve made it a thousand times before. I just love food.

Though it took an inhuman amount of patience, slowly but surely I started to enjoy what I was eating again. I went from only eating plain chicken and rice for a year straight to being able to cook beautiful dishes from all sorts of cultures including both of my own. I wouldn’t say I’m good enough to be an Iron Chef or anything, but I’d be lying if I said I wasn’t proud of myself for how far I’ve come.

For those of you newly adapting to life with dietary restrictions of any kind, believe me when I tell you I know how discouraging, scary, and frustrating it can be. While it’s never truly effortless, I promise you, with time and work you will get better at managing your diet and will once again be able to enjoy your meals. While it’s understandable that you may become exasperated, don’t give up for good. There are some Celiacs, much to my horror, who still eat whatever they want. Personally I think this is an incredibly idiotic thing to do, and I don’t know how they do it when the times I’m unlucky enough to eat something with gluten I vomit, am flooded with pain, get a horrible rash all over my legs and am rendered basically useless for the next few days.

It certainly sucks a bit to sit in a restaurant with friends or family and not be able to eat while everyone else is. I have learned that my desire to fit in does not outweigh my desire to remain healthy and not hospitalized. It’s difficult to be different, but once you get the hang of your new life it is highly rewarding and your body will just love you. I never want to experience anaphylaxis or a Celiac reaction again. Ever. If that means having to pack my lunchbox every time I go leave the house for a long period of time, then it is worth it. Maybe it will help if I just get a cuter lunchbox.

Would it be weird for a 26 year old to have a Ninja Turtles lunch box? And are we absolutely sure I can’t live off cinnamon buns and cupcakes?

I won’t settle, settle, settle,
You are never gonna hold me down.
So toxic, you ain’t nothin’ but a prick,
I’m the best thing that never happened to you,
Never, never, never, you are never gonna live this down,
Life’s too short, I can’t fake it anymore,
I’m the best thing that never happened to you.

~Best Thing That Never Happened To You- We Are the In Crowd (I like singing this to foods that I can’t eat).  

 

 

2 Player Mode: Ellie and The Easter Bunny

Just a quick little post to say Happy Easter to my dear readers. I Started this blog just a few weeks ago, and I didn’t think anyone would read it, honestly. But I have gotten a few followers and a few likes and I am so very grateful for every single one of you. Thank you for listening to me, and hearing my story. I hope everyone has a really lovely holiday, and if you don’t celebrate Easter, I hope you have a lovely day in general.

Last night I made a gluten free Easter Cake. Chocolate cake, filled with whip cream and iced with homemade buttercream. The eggs look a little weird though, because due to the whole constant awful pain thing, I was really exhausted and sort of forgot what eggs…looked like. I’m still pretty proud of it though, I think it’s pretty okay. I really need to learn to make fondant…That would make the world so much easier!

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I also made a huge mess in the kitchen. I usually do that, but it’s worth it. (Also, since this was a two layer cake I had to shave the bottom layer and got to eat all the shavings. You know…testing the cake to make sure it isn’t poison. I am a HERO, guys.)

I’m still on my horrible period, and my family is kind of insane and beyond overwhelming which makes most holidays a giant shitstorm, but I am going to try to take it as easy as possible and not lose my mind. But hey, at least there is cake involved. I’ll look forward to that. As well as going to take the leftover cake to my best friend later on. She usually makes everything a little better.

Happy Easter Everybunny! See what I did there? Every…bunny? Hehe. Okay. Sorry.

Ellie vs. The Allergist and a Sandwich

This morning I went to the allergist to talk about possibly having a C1 Deficiency. Not to my surprise, he wasn’t able to say that I did or did not have it. The C1 test results were low, but not low enough for a clear diagnosis. Basically, I once again got the diagnosis of, “I’m not sure, so let’s do more tests.” This particular doctor was a real sweetheart, though. He was attentive, understanding, and was empathetic to the frustration I felt about not getting a true answer. While it isn’t his fault, it was still wonderful to have someone else to understand why not getting a diagnosis can be just as disappointing as getting one, rather than just telling me to “be happy.” He ordered me more blood tests as well as a chest X-Ray so that we could dig deeper to figure this out. After that, I’m not sure what will be done.

I feel beyond frustrated right now. I wasn’t given a clear diagnosis, so I can’t do much about my pain, but he didn’t say that I didn’t have the disease, so I can’t even breathe a sigh of relief. Schrodinger’s cat is still alive and dead at the same time. I feel like I am floating around in purgatory with a friggin cat in a cardboard box. 

Onto the positive part of the day!

I live quite far from my hospital, so it’s a journey to go see my doctors. However, they’re the best doctors around here, so it is generally worth it. What makes the trip even more worth it is going to Zest Bakery. It’s about 20 miles always from the hospital, but it’s worth every stoplight to get there.

The whole place is gluten free, which is music to my ears, being the most Celiac Celiac to ever Celiac on the planet. They have pasta, pizza, an array of different sandwiches on several different kinds of bread, and my favorite, a shiny glass case of all kinds of fresh baked sweets. I don’t go often due to the fact that it’s far from home and also because it is very hard to resist not eating every single thing they make there, but when I do go, I assume heaven must feel just like this. 

This time I tried to practice a little more self control and only got a few desserts for the week as well as a sandwich. The sandwich is on Foccacia bread. I know right? GLUTEN FREE FOCCACIA BREAD. It’s tasty and soft without falling apart, and deliciously seasoned. If you are a Celiac or gluten free person, you know the struggle is real. Finding something that’s both soft and stable is nearly impossible, but these guys apparently make their baked goods out of magic and unicorn tears instead of wheat to keep it all together. That has to be the secret ingredient. I’m sure of it.

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Look at this handsome sandwich. I’d marry it if it was a person. 

Where I live, we really don’t have a lot of gluten free places. And if a place is gluten free, I still have to worry about my allergies to other foods, so it’s even more difficult for me. Many places advertise that they have gluten free menus, but I’ve often found when talking to managers that having gluten free food and keeping it that way by not cross contaminating is not something they really think about. This presents a huge problem for me. I am so sensitive that even a microscopic crumb is enough to have me vomiting and breaking out in blisters within hours. So here, my only options really are In N Out Burger and Zest Bakery. There is also a place in my city called Gluten Free Gourmet, but I haven’t got the chance to visit them yet.

I think I have freaked out the owners of many gluten free restaurants in California, Missouri and Colorado. Eating at a restaurant is a rarity for me between Celiac and anaphylaxis. So, when I do come across a place that truly is safe for me to eat, I always make sure than I thank the owner (or manager) as well as the waiters. I want the managers, chefs and waiters to know that for people like me, who never feel safe outside of their own kitchen when it comes to dining, it is fantastic and exciting to feel safe somewhere other than home. I realize because of my personality and my anxiety, I sometimes come on a little too strong, and my excitement is off-putting to certain people. Nevertheless, I still make sure that the people in charge of handling my food know how important it is to do it right, and how thankful I am that they do. Not all of the people that work in these kind of restaurants actually have Celiac disease, so sometimes don’t fully grasp what it really is like. The average healthy person can go to a restaurant and get whatever they want without a second thought, and that really is a privilege that people like me do not have. If you or someone close to you works at a place that serves people with special diets, know that it really does mean the world to us, and we are thankful for your work and care. Even if I come off like an overly excited puppy, I hope everyone knows my thanks are always sincere.

I’m in a bit of a weird state of mind today. Days like this that bring me confusing information tend to make me hide inside my head and over think. That really doesn’t help the situation, but I suppose that’s just how I cope. By thinking and eating amazing food made by someone else other than me. (I like the second way of coping so much better). 

I’m a war of head versus heart, and it’s always this way
My head is weak, my heart always speaks
Before I know what it will say

And you can’t find nothing at all
If there was nothing there all along
No you can’t find nothing at all
If there was nothing there all along

-Death Cab For Cutie- Crooked Teeth