To A Newly Diagnosed Celiac, part one

So. You've been diagnosed. You're going to become very familiar with that word. You're also going to become overly familiar with the words "gluten-free", "allergy", "intestines", and "gluten". Someday soon, you're going to hate the word "gluten". It will mean nothing to you, except frustration.

I hope for your sake that you have either toyed with eating gluten-free already, or someone close to you eats gluten-free. I also hope that this diagnosis was a long-time coming. Now, don't think I mean you've been suffering. What I mean is that some people try everything, go to doctors over and over, start googling, learn about diet changes, and start changing up their diet. Sometimes I guess doctors suggest changing up your diet too. Either way, you might have found out that avoiding gluten helped, so you went into your doctor and got a blood test for celiac disease. When it came back positive, you were probably scared, but relieved to have a diagnosis, and prepared to handle this. Maybe you had time to clean out your cupboards, or stock up on safe food.

Unless you were like me and this came out of nowhere. You had some symptoms, you didn't feel so good, whatnot. You avoided doctors for awhile, until something got bad enough that you caved and visited a doctor, who sent you for a myriad of basic blood tests. You didn't necessarily know what all was on that list, so you didn't research your options. But then you get a call, and you get your answer. Now I hope to God that at the very least, you've heard of it before. Maybe a friend or family member has it. So this is scary, frightening, disastrous. The worst possible outcome. Your world crumbled around you, and you didn't know where to go. The next meal you ate was either tiny, un-comforting and frustrating, or made you sick.

Over the next little while, you'll start to look at the long list of Celiac symptoms, and connect them to your life. Things will click into place. Problems you didn't realise you had will be spelt out on someone else's list. You'll start repeating the word "celiac" and that word will take on a new meaning. It will also take on a personal meaning as you blame it for everything that goes wrong in your body.

Now listen to me. Everyone will tell you you're lucky it's only celiac. You'll hear "at least it's cured with only a diet change" and "It could have been so much worse." Let me tell you something. It is worse. It is sucky. It might be the worst thing that's ever happened to you. And it's going to keep happening to you for the rest of your life. It's going to get easier, but don't focus on that now. Right now is all that matters.

Remember that.

Let go of the past right now. That was a different life. One where you could eat what you wanted, one where you were never picky, one where you were a normal person. In some time, you'll actually see the day you got your diagnosis as a dividing line between your old life and your new life. Everything will change.

So just let go of it now. Don't forget everything, but let go. Don't cling to familiarity.

As for the future, you have no idea what it could hold. I don't want to scare you (you might already be scared out of your mind), but gluten might not be your only problem. You might have a myriad list of intolerances. You might have something else wrong with you, on top of celiac. You might have damaged yourself beyond easy repair, so you might be sick for quite some time.

Let go of the past, and let go of the future. Think about now. Think about how you feel right now, maybe write it down. Think about what you're going to eat today. Think about what you're going to buy the next time you're at a grocery store.

Now, you probably wouldn't think so, and neither will the people around you, but a huge part of this is a personal journey. Most of this "celiac thing" will be on the inside. How you feel about food, how you feel about your body, how you're dealing with everything that happens around you. There are going to be major physical aspects, but also be prepared for things no one will even realise are happening.

I want to tell that it'll be okay eventually, that it gets easier, that you should be grateful, that gluten is overrated, blah-blah-blah-positive, but chances are you're hearing it from everybody else, and you're sick to death of it. And you have every right to be. If you were diagnosed with any other lifelong life-altering disease, everyone would change their tune, I know. But you got probably the only one that people just blow off. You need to accept how hard this is, and then move on. The sooner you get back to your life, the better, but first accept that this is not easy, and is not "for the best". Some people in your life will realise and accept this as well, but there will always be people who think that it is not as hard as it is.

The next tip I will give you is this: Pack snacks. Keep something you can munch on hand at all times. Save it for when you get hungry, but trust me, you will be hungry. As your body discovers it actually can digest food again, you will likely have a phase where you become ravenously hungry at unexpected times. Be prepared. There's no more quick drive-through runs for you. I like to keep an apple sauce, because it's quick to grab, healthy, and delicious. Hard to eat though. You could also keep a granola bar in your back pocket, but good granola bars are hard to find, especially if you ixnay oatmeal. I switched to an oversized purse, and have little Rubbermaid containers that I fill with an apple, a muffin, some yogurt, a rice cake, some crackers, depending on how long I'll be out and where I'm going. I also have a few gluten-free energy bars in my glove box.

The next thing I would urge you to do is stay social. I know you've been sick, and I know you'll still be sick for a little while, and after that you might be pretty blue. But as soon as possible, spend as much time with friends as you ever did. People don't know how to handle other people's issues, so they might gently back off. They either won't invite you to any eating or drinking event, or they might forget and insist you go to the pizza place with them anyways, insisting the wholegrain flatbread will be fine. First of all, don't listen to the stupid people. Don't eat anything unless you trust it. Second of all, don't alienate them. Eat ahead of time, have meals planned out, take food with you, and keep your friends close. I know you're going to want to whine or complain, but don't overdo it. Try to plan events that have nothing to do with food (movies, shopping, hang out and play video games). I don't care what you do, and I don't know how you can best go about it, but stay social. Unless you never were. Then stay a loner. See if I care.

Another thing; there are going to be bad days. One day, you might be thinking that this is easy, and you don't even want that donut, and everything will be just fine, and another day you might just want to lay down and die. Emotionally and physically, you will have ups and downs. It's a healing process, and that is never quick. As you learn to handle each aspect, your life will become easier, but that doesn't mean you're done. And you will eat something bad, eventually. Either unwittingly, accidentally, or purposefully, thinking it won't hurt you. You will get sick again, and you will appreciate your new diet. It'll be harder emotionally too, when you're sick, because you might think that it never gets easier.

Try to take bad days off, and just relax, until you feel better, but also try not to consistently blow off all your friends.

Okay. I think that's everything. I know some of this might not apply to you, and there will be things that I didn't touch on, but everyone has a very different journey. No two Celiacs are the same. Find what's best for you, and get better.

A two month Celiac.

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