Is there such thing as “God’s Plan” ?

It’s ninety sixty whatever year, and some woman in a third world country complains about constant stomach aches and dizzy spells. Every doctor under the sun tells her that she’s fine, yet nothing’s fine with her and her health. In fact, it only gets worse! Eventually, few years down the line, her health deteriorates and she gets gastrointestinal cancer. She is then told by her family “It’s just how it was meant to be.You have to follow through and hold on.”

Unfortunately, it’s too late for her and soon enough she dies. Her family all believe that “It was just part of God’s plan and that he always takes the good ones first” – perhaps to numb their pain or else they’d lose themselves grieving over the loss and tormenting themselves by constantly asking God “why her?”

However, her ultimate demise could have been prevented. In other words, the blame for this poor woman’s health issues lay in the food that she ate. It was the gluten found in bread that was making her sick, eventually damaging her gut to the point of no return; suffering from dementia and neuropathy. Had she or her doctors been aware of that, she could have lived on for years to come. So maybe it isn’t all just part of God’s plan? Or maybe there’s no God to begin with?

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Imagine being slowly killed by something so innocent like a pancake?

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It’s the start of the year 2017 and some guy from a remote place suddenly undergoes dizzy spells, nausea and an appetite loss that lasts for 2-3 weeks. At first he doesn’t think much of it, but later on he starts having episodes of night sweats, and understandably he gets worried. A quick, innocent search on the interwebz says that although night sweats are not a reason to get alarmed (unless accompanied by fever), they need keeping a close eye on – should they persist for a longer period of time, for they may be an early indication of blood cancer.

Few weeks later, not only that the night sweats haven’t stopped, but also he starts having itchy skin all over his body and pain under his rib-cage on both sides of the flank that isn’t kidney pain. Echo tests show nothing, but now he starts experiencing bouts of exhaustion/extreme fatigue that make him unable to get out of bed despite sleeping for up to 13 hours – leaving him terrified, knowing that ‘extreme fatigue’ is one of the most common ‘red flag’ warning signs of cancer.

He prays to God every night before he goes to bed, wishing he would not wake up covered in sweat the following morning (or the middle of the night, as he usually did) but to no avail. The new day would come and he’d wake up with a damp shirt round his chest area. It’s a tough pill to swallow and leaves him feeling afraid and also bitter, knowing that there is no escaping from his soon-to-follow diagnosis. God is of no use to him and completely irrelevant in this case. He’s on his own.

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The situation keeps getting worse as the itchy skin starts to become so severe that the sole of his foot itches constantly for up to 2 weeks. Doctors wouldn’t listen. They don’t suspect anything and play the “it’s just anxiety”card, although he fears the worst. The symptoms just seem to pile up and now his lymph nodes in the groin and under the armpit seem to ache from time to time. He is convinced for real that one of them is going to pop up any minute and he will then finally get diagnosed with lymphoma.

Another few months and his itchy skin, itchy scalp of head and constant fatigue don’t seem to stop. He soon develops huge hives on his left elbow and his mind can’t take it anymore. He uses sleep as a remedy to his tormented mind. His diagnosis is imminent and he’s not far from the truth as his node on the neck and the clavicle have now become tender to the touch and feel more prominent. This time he knows that this is it. There’s nowhere else to run and his worst case scenario has become true – as he previously suspected.
He isn’t even surprised because he saw it coming all along and now he curses God (if there’s one) while thinking about all the things he never had the chance to do, nor will he ever be able to. He is strolling by the river, trying to be out in the open so he would not go crazy staying inside the house on his own, since his parents had just gone to Australia to visit his brother and his family for 3 months. (You couldn’t make it up if you tried, right?) Since he’s still too young, he inevitably thinks about the girls he used to be in love with in the past, and the one he currently loved, yet, because of many different factors never had the chance to be with.

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A day he will always remember

After a while, he gets in a state of denial and tells himself that maybe, just maybe, there’s another reason about why his lymph nodes have become tender. He’s been monitoring his body for almost a year now, so he knows that there are too many symptoms that tick all the boxes and therefore his diagnosis being all but confirmed, but it’s in the human nature not to give up. However, he is aware that he’s only lying to himself; and despite wishing it was all just another health scare like the one from a year ago, he knows that it’s the end of the road for him now.

Surprisingly, one of the reasons for swollen lymph nodes, according to an online article, could be due to harmful substances clogging up the lymphatic system. And since the lymphatic system itself works as a filter, the inability to get rid of the harmful substances causes the lymph nodes to swell. Therefore, in order to get rid of them, a detox containing lots of fruits/vegetables and fibers is needed.

The guy, although not believing a word of it, reads that fiber can be found in cereal, most notably Cheerios, so he buys a box of Cheerios Cinnamon Oat Crisp – the only flavor available , which is a total rarity given how we are talking about a market that is  situated in the countryside and this product is not that popular there.
So once he gets home, he gets a bowl and eats some Cheerios with milk. It’s his first time trying them, so somehow the sweet taste of the honey coating makes him forget about the whole situation. Besides, now that he finally knows he’s dying, the feelings of constant anxiety and dread start to subside.

Quickly upon eating them, it’s the “daily itchy forearms” that he starts to experience, as well as the familiar pain under his right side of the rib-cage. He’s already accepted his fate, so he just goes to sleep so he can rest his body and mind from all the stress he has been put under. After only a few hours of sleep, he wakes up scratching his chin. Then he falls asleep back again but wakes up after a few minutes, now scratching his torso. He keeps falling asleep and waking up feeling itchy every 10 minutes, leaving him exhausted and almost like he hasn’t slept at all.

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“Contains ‘gluten’…? What is that?”

Eventually he gives up. The itching seems to have subsided once that he’s got up, so then he decides to have some Christmas cookies. The itching returns again as soon as he has eaten one, so he throws a quick glance at the ingredients. He reads with bold letters on the tin “Contains GLUTEN, EGGS, DAIRY”. Another quick glance, this time at the ingredients on the Cheerios box, and he discovers that same word in bold letters again – the word which his whole world will revolve around from that moment on until the rest of his life – “GLUTEN.”

“Could it be?”, he thought to himself. He knew a girl that was sensitive to gluten, but he’s always thought that it was just one in a million type of conditions, therefore he had never even bothered to look it up. To him, it was something that was simply blown out of proportion by celebrities and probably not that serious. Clearly confused, he then googles what kind of symptoms can gluten causes and he can’t believe his luck! His face lights as if someone has just told him he’s won the jackpot. Every symptom matches with the one that he has been experiencing for the last 12 months and it’s like a weight was lifted.
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Eventually he decides to switch to whole grain bread and to avoid pasta for a week or two in order to see if the symptoms should persist. To his surprise, he has never scratched his arms since! The itchy skin problem has completely disappeared for the time being! He is now fully convinced that he will live to see another day and that his health nightmare is over for good. How wrong he was…

He may have been wrong to think he potentially had lymphoma, but he wasn’t wrong to think that his symptoms were connected to the disease. In other words, once he was certain that it was the gluten that had caused him all the problems, thanks to the method of re-introducing gluten to his diet to see if his old symptoms would return, he had then decided to dedicate his nights to reading as much as he could about the condition.

That’s when he discovered the bitter truth: If he kept on eating products that contain wheat flour, he would actually get lymphoma some day in the future, or have some other serious complications. In a way, he was right since the very first beginning.
Despite fighting his battle alone, without the help of doctors, in order to get to the root of the problem and actually coming out as a winner in the end by preserving his own life, the victory was a Pyrrhic one. Yes, he did remain alive but he was now forever indebted and a slave to his new diet.

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On the verge of diagnosis. Blissfully unaware chocolate was one of the things killing me silently

For two years, while most of his peers were out and about, chasing love or opportunities, he found himself sucked up into reading about all sorts of diseases, people’s experiences with symptoms that led to cancer, etc. just to be able to help himself, since doctors wouldn’t.

Not like they doctors could do much if he actually did potentially have what he thought he did, but we talk about a guy in his twenties here that had no previous medical knowledge whatsoever, being able to successfully diagnose himself with a serious auto-immune disease within a year and thus putting to shame every doctor that had brushed him off or dared to even make fun of him during the process. On top of that, never even receiving an apology from either of them. To those doctors, he was just another hypochondriac.

That guy, as you could have probably guessed, was me. I’m writing this post just one night before I officially enroll back in university after taking the previous year off. Having thought that I was going to get diagnosed with a deadly disease, I had decided to take a break, since I would not have been able to focus on my studies anyway and because I thought that that was it, therefore it was not important to me whether I graduate or not. Here I am now, though. All well, just very hungry and feeling all sorts of emotions in the aftermath of the event, having to live every day with a short attention span, not being able to focus on anything because I’m too busy resisting the urge not to eat what I shouldn’t.

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The last time I ate pasta that wasn’t made from corn was ironically the time I cooked it for the first time, all by myself, thanks to this girl.

 

I am writing this in order to highlight how important it was for me to be my own advocate and also rely on myself when God wouldn’t. I know many people will disagree with my beliefs or tell me otherwise, but had I not battled my own way out through the hell and took things into my own hands, I could have followed the same path that many people who have been silent Celiacs throughout their life did.  It was not praying, but my own research that helped me save myself. Had I not done that, I could have been another guy about which people would say “That’s how it was meant to be, you can’t argue with God”.

I know it is really selfish because you might say that God has played his part here by preventing I had lymphoma, so in a way he did save me, but it’s hard to look at it from that way when you find yourself being diagnosed with another life-threatening disease from which you can never get cured. It can only get worse, but never better.

Throughout my one year journey without getting a diagnosis, I’ve heard stories about students like me who did not have my luck and actually didn’t get a second chance to live. I was grateful that I was going to live, but felt it’d be hypocritical to thank God when there are other kids out there who were going to float out into the Ether at such tender age. I found this quote that depicts what my thoughts at that time:

“Only the atheist recognizes the boundless narcissism and self-deceit of the saved. Only the atheist realizes how morally objectionable it is for survivors of a catastrophe to believe themselves spared by a loving God, while this same God drowned infants in their cribs. Because he refuses to cloak the reality of the world’s suffering in a cloying fantasy of eternal life, the atheist feels in his bones just how precious life is — and, indeed, how unfortunate it is that millions of human beings suffer the most harrowing abridgements of their happiness for no good reason at all.”

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To make things even more complicated, the key to whether you live longer or not is in your own hands, well… partially. You have to rise above HUNGER, which is one of our primary sensations, so good luck with that and try not to go crazy. It’s a never ending battle, and you have to adhere to your diet for the rest of your life, which is extremely hard given the few items of food that you’re only allowed to eat from now on and how impossible it seems to give up every dessert out there and rely solely on fruit and honey if you want to eat something sweet.

I’ve heard it many times from people who believe in God that it can be worse, or that other people have it much worse and must only eat vegetables and no meat, (usually said as to encourage me not to feel so down about this whole situation) and in a way I understand them because it’s true. I do have compassion for people who have it worse, but as the saying goes “you don’t always have to be thankful that it isn’t worse.”

The reason why I’m bitter about my disease is because this happened while I’m still so young and haven’t experienced many things that I wish I could. If this happened while I was happily married and in my late thirties, I would have accepted it as a normal part of life, but while I’m at this stage of my life, having to bear such a big baggage with me when I haven’t even gone out into the real world just isn’t fair. Not to mention about how inconvenient it is to go anywhere, from a person’s house to the city when there are so many aromas of freshly baked goods or pizza everywhere around you, and all you can eat is a banana or hazelnuts/chickpeas/whatever is convenient to you to carry with you. It goes to the point where you feel like you don’t belong to this world anymore, just like young kids probably do when they can’t find another kid to play with because they stand out.

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Look at all this food I can’t eat… Just in case if anyone wonders why I’ve stopped coming to your house.

I have the experience of knowing what it’s like to feel knowing you’re going to die soon and actually “dying” by feeling an immense amount of pain in my lower stomach when I tried gluten for the first time after being on a gluten-free diet for a month. In all of those cases, God was the last thing on my mind, or maybe he was the first one, since he’s the help we all call out to when in dangerous situation, but he wasn’t of much help.
Don’t get me wrong, I still believe there’s someone pulling the strings up there, but I do not think it’s in a certain way that we or anyone else claims to know.

It’s the 21st century and doctors still haven’t figured what causes or how to reverse an auto-immune disease (that thing when your body doesn’t recognize its own self and attacks itself), yet people, who are just ordinary mortals, think they know how God works or that he’s got a plan for them? We all tell ourselves that we should keep on keeping on when things go wrong, and that perhaps there is a light at the end of the tunnel, but being Celiac it’s one of those things where you are forever stuck in the tunnel! You can feel better tomorrow, but once you realize that you will never be over your condition, you’re going to go into a meltdown.

Getting over an ex is somewhat manageable because eventually you’ll find another girl, but you can never find a substitute to food. You can replace bread, but not the rest of the items. Almost everything contains wheat, soy, yeast and/or milk. Also, you might resist the temptation not to eat what is bad for you for a few days or a week up to two, but eventually you would still want to reach for some candy bar, a cookie, piece of cake, a bagel, or anything really, since you’re literally not allowed to eat anything you can find in a store. It’s a very complicated and absurd situation.

It would have been wonderful if we could abstain from eating what we shouldn’t, but have at least one day every two weeks when we could eat anything we wanted, but that’s not possible. Being a Celiac means you need to learn how to live with the hunger and accept your new diet, day by day, because if you think that you need to adhere to your new diet for the rest of your life you’re going to have a fit. And you don’t want that.

Being Celiac makes you realize how idiotic it is when religious people voluntarily strip themselves off certain pleasures in life because it is ‘sinful’. To me, that’s the fastest way to slowly kill your spirit and kill yourself, as a human being. If you are religious and reading this, I want to ask you one thing: “Are you doing that because you are afraid of God; because your preacher told you to (he probably doesn’t believe in that either), because the Bible says so, or because you feel like it helps you grow spiritually?”
Does it come to you naturally, or are you trying with every fiber of your being to suppress your urges? Unless you do it for your own good, suppressing your urges and denying yourself to enjoy, whether to you that is in the way of gambling or making love to another human being, it’s only going to make you more preoccupied with your urges and will most likely manifest itself through something more drastic.

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What if a person gambles because they need to raise money for them or a sick relative? Is that a sin too? Also, is it considered a suicide if you ingest gluten because you can’t even afford gluten-free flour (bread), let alone gluten-free pasta/biscuits or whatever, although you know it’s slowly going to kill you if you keep eating it? 

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I mention religion because it’s very similar to Celiac disease. No one forbids you to stop eating products that contain gluten, milk, or soy, but you enjoy them at your own risk because you know that sooner or later you will most certainly develop another auto-immune illness and meet your fate, or as in the example of religious people – God.
But at the same time, you can try to suppress your urges for tasty goods such as pizza/chocolate/cookies/cake etc., but in the end they will always come out and you’ll most likely cheat on your diet because hunger will always prevail. Yes, potentially having cancer is scary but that’s in the far future and the hunger is now!
That’s why I say it’s similar to religion. Religious people feel guilty when they indulge in the above mentioned activities, but at the same time they can’t abandon those activities. Same with Celiacs. Eat it, but don’t complain if your health deteriorates after.
Wonderful, isn’t it?

If religious people feel God is going to reward them in the afterlife for being obedient and not doing what’s forbidden, then Celiacs must believe that they are going to be rewarded even more for their diligence and not submitting to hunger. After all, they are stripping themselves off food; food that helps every living thing survive. And what do religious people do? At most they try not to have sex, unless they’re married, gamble or smoke. Big deal! Try living without bread for a week and your only dessert being fruit.

So if anything, Celiacs should be the ones getting first row in Heaven, right? It’s what should they be entitled to since they are constantly being torn between eating in order to function normally, or not eating in order to persevere their life? But guess what, Celiacs, and me in particular don’t feel like that at all. I believe I speak on behalf of many Celiacs that there are times when we’re so over with this type of life that the first thing we think is that God either:
1. Does not exist.
2 He must certainly hates us since out of nowhere we are forced to give up on food and satisfying our hunger, just so we can remain alive here.

Throughout this year, I have been gluten-free for weeks, but the moment I tasted a chocolate chip cookie after adhering to the diet for so long I felt such an immense pleasure that for a few minutes it felt like my whole body was floating and I was the most relaxed person in the world. I felt like my brain activity has just stopped and all I could feel was the sensation of calmness and delight. You can try it on your own. Don’t eat anything apart from fruit for a week or two and then eat a bar of chocolate. The next best thing is probably drinking water after running in the sun or participating in some sports.

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Try being gluten-free for weeks and then eat this. That’s what I call Heaven.

Auto-immune diseases are the place where God goes to die. He’s absolutely powerless and since this is an incurable condition that potentially leads to other auto-immune diseases, or worst case scenario – cancer, relying on God seems futile and empty. It just doesn’t cut it anymore. Your brain is too preoccupied thinking about food anyway.

You can act all smart and say or think that God does not exist (based on your bad luck), but eventually every skeptic will find himself faced with the inevitability of death, and in that moment every logic is defied. Whether you believe in God or not, you just want to save your butt then – as it’s the human instinct. So no, you’re not that dumb. You want to be on God’s good cards for the future just in case you happen to face something more tragic, not having to feel as if you brought it upon yourself. What if celiac disease happened cause you ate too much cheese as a kid, your immune system couldn’t handle it, and has now built up an intolerance not only to the protein in milk, but also gluten. What if this was your fault all along?

At the same time, you also don’t think much of God either, so you just let your life roll without stressing too much over God and religion – if that’s possible during this day and age. From one side, you already have it bad so if there’s God and he makes your life harder by blessing you with another disease, then fine, but he’s not worth your attention anymore (although this does not matter much once you’re in this situation. Taking God on guilt trips is to no avail). But since Celiac disease is a life-long condition and affecting you in many ways, then you will most likely always resent God for it every now and then, even though you are probably aware that it’s got nothing to do with him, since auto-immune diseases are still relatively new. A switch goes off in your body and suddenly your body rejects itself, your own cells start attacking themselves and you really think God’s responsible for that?

It’s ridiculous to even think so, but since the cause behind auto-immune diseases still can’t be found for sure, I can just throw the toys out of my pram and blame God for everything 🙂
This is why I have accepted that if there’s God, he probably knows where I stand. He knows why I feel the way I do, why I  feel bitter when I do, and why I no longer feel as drawn to him. I have no reasons to fear hell because I’ve already lived mine here on Earth for almost a year. Certain people, like me, had to live in hell before they died, to make up for missing out on it after death, since they didn’t believe in life after death.

For all I know, whoever wrote the Bible probably just used it as a big distraction, something to control the people with, so of course I could never follow a book that restricts me from living my life according to my needs when on top of everything that life is already limited when it comes to the food that I eat. And for what? For a promise of an eternal life that no one has the faintest idea if it even exists.

Of course, I will always feel a connection to a higher power, but I know that it’s not up to God whether we live or not, whether we get what we want from life or not, or whether the people we love will stay with us for long or not. There’s so many things that we, as a humankind still don’t have a clue about, and whoever is trying to tell you that they have the answers to that, are most likely just manipulating with you and you’re buying it all because you can’t or are too scared/lazy to think for yourself.
We are here. On this Earth. As long as we are here the chances of good things as well as bad things happening to us always exist; and that’s the harsh reality.

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As pretentious as it may sound, while you’re on Earth, you’re your own God.

Here’s a message that a dear friend of mine has sent me. Apparently she’s always been a fellow Celiac, not just a fellow music fan, but she never told me about it since she had already got used to her condition:

” I wish I’d enjoyed it so much more when I still could, had I known that pleasures that once seemed so natural and simple, had an expiration date all this time, well hidden underneath my ignorance. To lose those things is a loss so severe that it resembles death; the death of the person you used to be and will never be again, and even though we’re all changing constantly, this is a change so brutal and absurd and doesn’t even have the benefit of a certain wisdom (like the changes caused by experience.)
You are brave and I don’t have to tell you how proud I am of you.”

To sum it up,  next time you tell someone “It’s part of God’s plan” just try and be more considerate of your words. Bad experiences that teach you something are one thing, but needless suffering like the loss of a child or a life-long disease are completely different things. It isn’t, and should not be part of any God’s plan. If it is, then He’s not My God.

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Quasi-doctors, the mind of a self-diagnosed Celiac, and God

If you are reading this post, you have most likely had the ‘honour’ to meet Celiac disease up close and personal, and have probably been living with fears of worst case scenario since the start of your initial symptoms and their gradual development, up until the moment you were finally diagnosed… or like me – self-diagnosed yourself with Her Majesty.

Most of us probably share the same story – meeting various doctors only to be told, or should I say ‘be persuaded’ that the physical symptoms we were feeling back then were simply caused by stress. Speaking of which, is it just me or is every doctor from all around the world trying to identify everything that goes on inside our bodies with that magical word ‘stress’?

It looks like there’s a pattern over here and I begin to realize the bitter truth that most doctors simply see us as a mere statistic when we come to their office, rather than as actual human beings. They simply can’t be bothered too much with us and our health complains, AND will pin everything on stress, or, perhaps just go along with the most relevant diagnosis and tell us to come back again should the symptoms persist.

Chronic Illness Cat Memes – You won’t get them, unless you live them

Another story that I, and believe many fellow Celiacs share as well, was being prescribed anti-anxiety pills, because according to the ‘professionals’ we were showing signs of hypochondria and that we should just “Enjoy life!” and “Go out more!” in order to stop focusing so much on our health…Yeah, good one, docs; downplaying our symptoms because we’re too young and since you, as doctors, are always right.

I mean, after all, you’re the ones who have spent years studying about all sorts of conditions, so how can people like us who have only read a few articles online after googling our symptoms have the decency to doubt you, let alone disagree with your opinion, huh? It’s all in our head anyway so just brand us insane while you’re at it. Why not, right?! If our voice isn’t heard now, while we are young and have our sanity, imagine what a young, vainglorious doctor would treat us like when we get old! They’d probably just think we’re demented and tell us not to fret, go home, and spend time with our grandchildren.

I can bet my bottom dollar that just thinking about this scenario gives you all sorts of anxieties, or maybe not, but I’m sure that by now you’ve probably started to hate your life on the low and secretly wish you could just stop existing – at least until you satisfy your hunger that is. After all, we know that when we feel hunger we cannot think straight. Furthermore, knowing you are not allowed to eat so many different food items for the rest of your life it feels like entering a witness protection program because you have no choice, and forever accepting the fact that you cannot ever see your loved ones. I mean you can always do, just like how threatened witnesses can decide to reunite with their family members or old friends, but at your own risk and thus, jeopardizing yourself and the people around you.

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With a face like this, it’s hard for female doctors to take you seriously, or suspect that something can be terribly wrong with you. Looks can deceive!

But no, really! The life of a Celiac patient is much more complicated than just having to avoid pizza and bagels. Most of us are wheat, soy, yeast, and casein intolerant – all at the same time. I’m not even counting other foods that we have to avoid as well due to the inability of our body to recognize them for the food proteins they actually are, and not as something harmful. Such foods include corn, peanuts, fish, and most importantly – coffee. Like it’s not enough you have to avoid so many food items because wheat flour is everywhere, but on top of that, you can’t even have any diary products!

If I have to be honest, giving up on the baked goods is not that big of a deal since the only thing that I truly ever miss is probably pizza and some desserts like cake/doughnuts, not counting the bread issue because given the circumstances of where I am situated, it’s a very broad topic; from the fact of gluten-free bread not even existing here, to the problem with obtaining gluten-free flour and its price. Also not being allowed to use baking powder or yeast to bake it on top of that due to your asshole body reacting to them just as bad as it does to gluten. At this point you wouldn’t even care what the bread tastes like because you need it to survive. Suddenly the phrase “I don’t even have money for bread” has become true for you, although you’re not even poor.

To continue with my thought, the hardest part of it all is that after every meal, like every  single person out there, we require a dessert in order to feel really full. Without eating a treat afterwards, it feels as if you haven’t even eaten since your stomach still feels sort of empty and here’s why I absolutely despise Celiac disease..

For most Celiacs, the Holy Trinity of forbidden proteins consists of Gluten (wheat, rye, barley), Casein (milk), and Soy. Eventually you think it’s not that bad, and you go to a supermarket in order to bargain and try to find a substitute for some of the food items you’ve given up in order to heal. You know, still trying to be optimistic and not give up all hope about life after your diagnosis. Well, allow me to start: You just found cereal that doesn’t contain gluten? Check again! It probably contains soy! What is that? You’ve found Nestle corn flakes that not only are they gluten-free, but also don’t contain any traces of soy? Aww, that’s cute, but eating them still makes you itch immediately and after re-reading the label you find out they contain ‘dextrose‘ You google it and boom! You find out that dextrose is basically glucose syrup made from barley, and barley is a forbidden grain for every Celiac. So much for gluten-free cereal and using our last resort.

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A meal long forgotten.. Visual representation of the Holy Trinity: Gluten (bun), Casein (cheese), soy (salami) and coffee – a cross-reactor. It most likely contains milk or soy lecithin too.

The more you try to find substitute for chocolate/snacks/biscuits, the more disappointed you will get because if they don’t contain gluten and traces of milk, they will contain soy, especially salty snacks. And if they don’t contain soy, they will contain yeast extract or traces of milk.
After bargaining and finding other gluten-free products on the shelves that can satisfy your sweet tooth, such as Nutella, you realize that almost everything contains soy lecithin. It’s an inevitable ingredient in almost every processed food, to which you will certainly react if you’ve been gluten-free for a while, since your body is now extra sensitive and can easily pick up on “foreign” proteins.

At that moment you realize that it’s best if you just admit defeat and give up on processed food altogether. Just go buy the essentials like brown rice, a bag of lentils, beans, gluten-free pasta – and leave. Don’t go anywhere near the aisle where chocolates, croissants, cookies or crisps are sold. Just think of it as if that’s your ex who broke your heart, and walk by without even looking. Eventually, it WILL get easier and you WILL be able to go to the supermarket without feeling like breaking down in front of strangers crying because you can’t find anything to buy. I’m not giving advice on how to stop eating them, just how to try and survive the temptation or lamenting over these products while being in a supermarket.

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A photo of a gloating lid that belongs to a gluten-free jar of spread that I bought. The spread contains soy lecithin and it makes my hand cramp just by eating a spoonful. It’d be funny if it wasn’t sad. 🙂

Speaking of which, when I was a kid I was always fascinated by supermarkets and would always want to try the latest snacks, new chocolate or the cool hard candy. In fact, the first place I would always visit when in a new city was a supermarket! I could roam around for an hour, eventually spending most of my money there. I even knew how many grams every item cost, wishing I could work in a supermarket just to be surrounded by all those treats… at least until I grew up and realized how much work is done behind the scenes, especially if you’re a guy and have no problem being exploited for your strength, having to lift heavy boxes, unlike the female employees.

Back to the topic! Part of my wish as a child could also be due to the fact that up until I was 10, my parents could barely afford to buy us even a chocolate, so I grew up saving up money in order go on a spending spree before each New Year’s Eve and buy everything that I couldn’t afford throughout the year and eat it during the winter break while watching cartoons early in the morning. To this day I still keep the receipts and the last one I have is from 2008!
It’s like finally building a castle and not being able to live in it. A tough pill to swallow, and it feels completely unfair to you, but when you’re an adult, you haven’t got much time for lamenting. Not even over something as huge as this. Things will make no sense whatsoever, and you wouldn’t even have the time to think about it for too long because something else is hanging by a thread and ready to collapse in your world, just waiting to send you back to the misery hole.

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Even my cat is not immune to a proper gift bag filled with goodies

I have this habit of always coming up with comparison or using examples for everything when I talk, especially when comparing situations, but I haven’t yet figured if it means that I’m smarter or just my brain being more stupid, always coming up with vapid, entertaining thoughts. I tried to google .”Always using examples when I talk” but unfortunately Google thinks that I simply need results on how to use “always” and offering me ‘example sentences.’

Anyway, I simply wanted to say that having to stop eating products made from wheat flour, milk and/or soy lecithin is like someone gouging one of your eyes, chopping one of your ears, and cutting one of your extremities. Physically it’s still possible to live like that, but what’s the quality of life you can have? There’s only so little items of food you can still eat, eventually all going down to eating just brown rice, beans, lentils, potatoes, fish, meat, fruits, and vegetables. Food becomes purely just a source of energy and it becomes a mundane task to even eat.
I mean, eating brown rice every second day does get old after a while and you will probably get tired from eating meat as well 🙂

Food is no longer something you can enjoy anymore, but sort of like the gas you put in your car; something that you need in order to function, except you are eating it just to keep on keeping on, not because you enjoy it. Basically you’re the car! You’re a robot and have no emotions. I know.. it’s probably my worst comparison to date, but I blame my empty stomach for my lack of inspiration. Sue me!

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Don’t worry, I’m not going to eat you! -.-

Cross-reactivity is a lot like the small print that no one really tells you about that comes with this disease and kicks you straight in the teeth when you’re already at your lowest, just in time when you think that it literally can’t get any worse.. Well, it can. And there’s nothing you can do about it! I suppose you can always relapse and eat whatever the hell you want, but that wouldn’t solve anything, and at the end of the day you’re going to pay the price for cheating on your diet immediately (you know what I mean), especially if you’ve been trying to heal your gut for awhile. We’re all wired to crave food after all and “hangry” is a strong emotion.

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The look on your face when you can no longer eat processed foods

Anyway, I do have to give doctors some credit, though, because to a certain extent they were not that far from the truth. After all, ingesting gluten does actually cause psychological symptoms, as you are already familiar with. Although for someone who has never experienced that, they will never understand the effect gluten can have on us: from the inability to get out of bed because your body feels like a large sack of potatoes despite sleeping for 12 hours, to the state of mind you find yourself into after being glutened.

It’s fascinating how you can always tell when the imminent cloudy thoughts start to arise and suddenly everything seems pointless. You know that this is not who you are, nor do you want to feel like that, but you just can’t snap out of it. It feels like you are underwater and can’t find joy in anything anymore, whilst also struggling to keep awake.

I suppose this is how clinical depression feels like (I salute all of you going through it and fighting it daily) and these doctors were right all along! Our symptoms WERE actually psychological; but what they failed at was not finding the root of the problem and what causes the mysterious fatigue that not only does it keep you in bed for more than 12 hours, but also causes an abrupt urge to sleep, kinda like a sudden sleep attack.

It’s not the usual need for sleep you’re fighting over a longer time throughout the day or when you’re trying to study late at night, but the sudden overtake by the fatigue and your eyelids closing within a minute during a random period of the day, despite your resistance not to. And the term, for all of those unfamiliar with the world of auto-immune disease, is Brain Fog. It would have saved me some nerves and peace if I had read that such condition can exist, rather than thinking that this was a cancer-related fatigue, since mine wouldn’t go away just by sleeping it off. It got that bad that at some point I began to suspect that I was secretly being sedated by my parents for whatever twisted reason they might possibly have.

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The effects of “Brain Fog” and not Chronic Fatigue Syndrome, which I mistakenly thought I had in relation to another auto-immune condition I have known as MVP (Mitral Valve Prolapse)

But who could possibly know that gluten can cause anxiety, rapid heartbeat, and depression anyway? Heck, almost 8 months ago now I didn’t even know what gluten was and thought that the whole deal about it was just a fad among celebrities who didn’t have anything better to do with their already accomplished lives and decided to avoid bread in order to lose some weight. How little did I know..

For someone who lives in a village, situated in a developing country that no one’s really heard of outside Europe, it’s understandable that I’ve never even been aware of what an auto-immune disease was. Even my GP told me that I was the first Celiac case she’d seen, and she was someone who actually lived in the city. You’d think she had studied about it, although that’s the job of auto-immune doctors, yet she even dared to suggest that my constant itchy skin could be due to ‘owning a cat…’
However, here I am now, being stuck with an irreversible, auto-immune condition for the rest of my life after learning it the hard way and playing doctors for over a year. It’s during times like these that I look back on my life and realize how lucky I am that I’m able to speak a global language such as English, and this time, actually saving my life.

To be completely honest, now that I think about it again, I’m not feeling mad at my doctors anymore. I probably never did anyway – unlike my parents! It’s just the fact that they didn’t acknowledge me when I needed them most and when I knew something was terribly wrong with me that still hurts me to this day when I think about it.
My body was shutting down, but in the eyes of my parents I was simply ‘unstable’ and just ‘making myself sick’ from looking too much into it, because after all, medically there was nothing wrong with me, as I was being told by several doctors. At that time, Celiac disease was something that I haven’t even heard of! I was convinced since the start that what I had was far more serious, but I couldn’t tell anyone because I knew that it wouldn’t manifest itself thoroughly until a few months have passed since my initial symptoms, and that all I had to do was wait until it does, and then start a potential treatment.
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It’s a hopeless feeling knowing it’s not up to you anymore and all you could do is watch the unfolding of your worst-feared symptoms 

Long story short, I decided that I will postpone my studies since I knew I was never going to go back. Even if I did start my last year of University, it wouldn’t have mattered anyway because I would have to quit it eventually. Plus, having the symptoms for almost 6 months, I barely managed to finish my previous year on a high – not to mention the mental pressure I was under, knowing my own mortality has caught up with me. I had to drag myself out of bed every morning, despite just wanting to sleep and be loosened from the fears that haunted me every day. The horror of waking up in the middle of the night with a damp shirt, and sometimes waking up with itchy skin which would wake me up every 10 minutes, as soon as I’d fallen back asleep. Thinking about this now, I don’t think I will ever be able to survive something similar for so long.

You see, I’m not a person who gets scared easily after a minor symptom like most people, but in my case it all matched. I’ve been monitoring it since the start of 2017 and it wasn’t until the second week of 2018 that I finally found the answer I was looking for.
It all began like a series of harmless,vague symptoms that I thought were related to the syndrome of mitral valve prolapse, until they started to pile up and having no correlation with that condition whatsoever. I simply tried to associate them with the symptoms of that condition, but even people who have had that condition for years said that they’d never experienced something similar. That is where I knew that something bigger was going on and I wasn’t far from the truth..

I could write a book about my journey of living with a lymphoma scare for over a year, so it’s best if I leave it for another time. Basically I had the night sweats (hot flashes), the itchy scalp on my head, random itch attacks that would wake me up early in the morning, leaving me paralyzed by fear, unable to go back to sleep and too distraught to think about anything else apart from the imminent last symptom that was soon to come – a swollen lymph node.
I also experienced an itchy sole of the foot for a week, then the fatigue, painful lymph node in the groin and many other symptoms that I have forgotten by now, luckily!

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You can try to escape from people, places or situations, but you can’t escape from your body 

We’ve all had those quick, health scares that lasted for a few days or maybe a week, but living with something, knowing in advance what your fate will soon be and that there’s no way out of it is a completely different feeling to that. It’s during times like those when you wish that you didn’t know as much, rather than knowing and losing your mind with each new symptom that matches the one from your worst case scenario.
I’d never thought such thing would happen to me, or at least not at such young age. Especially not after being diagnosed with something minor (according to the doctor) called “Mitral Valve Prolapse Syndrome“.

Little did I know that this condition would help me learn so much and shape the path of life I would eventually have to walk. If it hadn’t been for that, maybe I would have never developed Celiac disease as a second-hand auto-immune disease at all, but also I would have never been able to learn so much about our human body and how to trust our instincts. Not to mention the fact that before this I rarely eat any vegetables.
I could never have guessed that it was all just the start of a journey I could never imagine undertaking, but there I was then, living a life as if I’d just seen a ghost for a whole year; scared to the bone and waiting for a deadly diagnosis.
After all, no one knows your own body better than yourself so this is why I always urge everyone to be their own advocate! If you don’t, who will? Sometimes you are the one who can save your own life. Literally!

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Somewhere on these streets is where I felt what’s it like to have an episode of derealization for the first time. It’s the feeling of observing yourself from outside your body, feeling like nothing around you is real and that you’re in a dream. It is  brought on by a feeling of extreme anxiety (health one in my case).

Celiac/Non Celiac sensitivity is a rare condition in the Republic of Macedonia, the developing country that I live in, situated just above Greece. The population estimates around 2 million people and the unofficial number of patients with Celiac disease or Non-celiac gluten sensitivity varies between 2000 to 5000 people.
In fact, no one really knows the correct number because even the Celiac Association has less than 500 members, and one can only wonder how many people must be out here, living day-to-day life completely unaware (or should I say uneducated) that their symptoms are not just normal occurrences that come with age, but actually signs of silent Celiac disease or Non-celiac gluten sensitivity.

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Being Celiac is hard when your mother makes the finest bajadera dessert 😦

So you can now imagine what trying to explain Celiac disease to others here feels like. It gives me a perfect depiction of what religious people must feel like whenever they try to spread ‘God’s word’ or try to convert people into their religion only to be ridiculed or laughed at in their face by non-believers or those who are certain in their faith.
It’s like trying to explain colours to someone who was born with the inability to see;
it’s a world only you can see! But of course, there is always that one odd person that has heard of it because their sister’s roommate’s cousin has it. You just have to talk about it and spread some awareness there and then, because eventually you cannot avoid mentioning it, even if you were the type of person who never wanted to bother people with your own problems; not because you felt like they were irrelevant to them, but simply because talking about them wouldn’t change a damn thing about your situation.

Being Celiac means that sometimes (every day) the hunger is too much to bear and if you believed in God even one bit before your diagnosis, you now have two choices:

1. Be thankful to God every day that after a year of living with the fears of a worst case scenario, you are now alive and can get back to your old life. Well..partially, because when you’ve been faced with your own mortality over a longer period of time at relatively young age, you cannot ever go back to your old self; especially when you have to stop eating about 70 percent of the food you used to eat, thus morphing into a completely different person.
2. Trash-talk God when the hunger overtakes you in order to ease it up on yourself and get rid of the bitterness (at least temporarily) for having been “blessed” with such an unusual, first world disease, while living in a third world country.
Truth is, it feels as if God has failed you. Despite remaining alive, it’s almost like living with a death sentence, having to be extremely vigilant about what you eat or drink for the rest of your life, and despite that, still have an increased risk of all kinds of diseases. You can no longer eat on the go or just buy something from a store when you’re in no position to eat. Socializing becomes complicated and you slowly start to feel less because despite being in front of your nose, you feel dirty, almost like an outcast and being less than everyone around you for not being able to eat normal food. It’s a never ending battle that consumes you physically, as well as mentally, so it would be a miracle not to be cynical through and through.

When you're a celiac and feeling hungry all the time, God becomes irrelevant
Just a photo I asked my mum to take back in mid-June, 2017, inspired by the album that helped me survive the year – Muse’s Absolution

To return to my idea of trash talking.. When I say that, I don’t mean cursing at God, (though that’s not excluded), but more of a way of challenging God through a war of words. Kinda like taking him on a guilt trip, calling him a fraud (it sounds stupid until you feel hungry and craving something than you can/must not longer have) or maybe even flipping him off in a way to show your disappointment with him. Something like how bullies provoke those kids who are weaker than them, in order to try and get some kind of reaction from them. In this case, that reaction being any sign at all sent from him of why this had to happen, and why such disease should even exist. It’s one thing being allergic/intolerant to a certain food item or two, but a completely different case of having to suddenly stop eating bread, diary products, baked goods, desserts, any processed food,  peanuts, or anything that contains yeast or soy. For the rest of your life!
To make everything worse, people still think it’s something temporary and wish you well, saying it will get better. I know they mean best, or probably say it out of politeness but to you it’s just a needless reminder that it will always stay that way.

You know damn well that doing these acts, would not make God suddenly put mercy on your soul and erase the curse (as I’d like to call it), because an auto-immune condition is basically irreversible. However, I am not ashamed to say that I always get a feeling of slight consolation as if I got one over on God when the torrid times are too much to bear and I start repetitively calling him a fraud, and him not even having the courage to show off his face. I mean, duh, I am aware God doesn’t work that way, but I’d like to come off as a winner against him for once! Maybe you’d think I’m crazy, but as I said earlier, hunger is a really strong emotion and it’s a normal thing to be playing the five stages of grief. After all, who else could you blame for all of this happening if not good, old God? This disease is not something you can bring upon yourself, so you can’t kick yourself for having done something wrong, because it simply isn’t your fault!

And yes, I am quite aware that I could face his wrath when I least expect (proven), but what else could he want to take away from me? At the time being I just couldn’t care less.
If it’s up to me, I could just slip into a coma and never wake up so I can finally be over with the daily struggle of constant hunger. Knowing God, he’d probably not punish me for trash-talking him just because of spite. He’s probably well aware of how desperate Celiac patients are, and the fact that most of us are probably waiting for that one last straw so that we finally have enough reasons to give up on life for good, especially if our life was not that shiny before our diagnosis anyway.

The thing about Celiac disease is that you know it will never get better. You will never be able to go back to the time of having the pleasure of eating baked goods, cake, pizza and so on. You know that you’re stuck with it for life, so there isn’t any light at the end of the tunnel. Ever. There’s nothing to get excited about, or have something to look forward to when it comes to eating, just to get some kind of pleasure in your miserable life.

Do you know that time when you don’t want to listen to any of the songs on your phone/laptop and just skip them all? That’s how Celiacs feel every day! When you’re constantly hungry you can barely focus on anything. Nothing makes you happy anymore. Someone can offer you a free trip to Hawaii and you will probably say ‘no’ since there’s not point of being somewhere nice when you can’t eat what you want.
You constantly crave food and you can’t do anything about it. All you think about is food, food, food. As a matter of fact, you suddenly feel like you understand what’s it like to be a drug user.
To make it worse, you can’t even drink coffee or stuff yourself with chocolate in order to make yourself better, or at least fool yourself into feeling so.. Having vices is not allowed when just eating food is a vice by itself. Besides, coffee is bad for your gut, alcohol contains yeast, and at that point the only thing that can be your last resort are cigarettes. If you haven’t smoked before, the reason why you probably reached for them was the false sense that they can sate your hunger. One cigarette later and you realize that it doesn’t work that way and on top of that, now your fingers smell bad too!

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Visual representation of what celiacs go through when they’re hungry. It’s almost like drug withdrawal symptoms and there’s even a name for that: “Wheat/Gluten Withdrawal”

According to my google research, given how the wheat/gluten intolerance was never mentioned in the Bible, and yes, I am perfectly aware that wheat back then was far different than the mutated one we have today, I assume that after all, maybe God is completely unaware of this condition and therefore I’m probably going to hell for my constant, vituperative attacks aimed at him. You know, since HE can’t possibly understand what goes through the brain of someone when they get “glutened” or have to go on a ‘food withdrawal‘ diet plan for the rest of their life in order to just survive and avoid unwanted complications, let alone have a healthy, and God forbid, an enjoyable and tasty life. Not to mention the social isolation one has to live with because of how they will not be able to attend any place with friends where they eat together and basically have to either bring prepared food with themselves, or just eat fruit – probably bananas.

It is bizarre the way I talk about it, and even I wouldn’t believe it myself if I were in someone else’s shoes. It sounds completely like a far-fetched, futuristic disease from a Sci-Fi novel where people slowly die from hunger, but if they try to eat food, it’ll just speed up the process of dying. It truly is a perplexing disease and the more I think about it, the more I feel like this is just a bad dream and that one day I’ll be able to finally wake up from it. It’s all pipe dreams but well, that’s what the lack of food does to your brain! Even Albert Einstein once said “An empty stomach is not a good political adviser” and I couldn’t agree more.

On the other hand, given the confusion that I find myself into, as long as there’s a world where I can taste pizza, cheese, coffee, diary products, and most importantly chocolate, without feeling like I’ve been stabbed in the stomach repeatedly after just a bite, not only I would not be afraid of ending up in hell, but in fact I’d be reveling in the possibility of such place even existing!

I’m only kidding. Maybe hell does exist, but when you haven’t lived the life you imagined you’d be having here and knowing you will never obtain it, or having been faced with your mortality so early, the idea of hell existing does not scare you in the slightest!
Real hell exists here on Earth and it is a place in-between the start of one’s symptoms – until their diagnosis.
It’s also the life of those people who unfortunately were not lucky enough to get a diagnosis/condition that makes mine look like a cakewalk compared to theirs.  At that time, I am the one who feels like a fraud whenever I witness that, forgetting very easily that I could have been them and what they go through now; feeling ashamed for being ungrateful. However, as soon as the hunger starts looming again, my thoughts will get louder than my common sense and it simply gets the better of me. Hunger, eh?

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 “If you are lucky enough to be given a second chancedon’t let it go to waste”

I did have the taste of what it feels like to be those people, having lived with the fear of a scenario like that for over a year, but in the end it turned out to be just a trial version – just when I thought that there was no escaping from it. One thing I remember from that traumatic period of time was that I was feeling bitter that it was not up to me whether I live or not anymore. My hands were tied and all I could do was just watch how my life unfolds, a symptom after symptom – week in, week out.
But now, it is finally up to me! It is up to me whether I carry on living for longer, or I keep eating food for the pleasure of satisfying my taste buds; food which my body treats like poison. This time, however, there will be no trial versions, just a quick route to imminent complications and ultimate demise.

Celiac disease might be hell but it’s nothing compared to living undiagnosed.