The Heavy 'Backpack' You Carry When You Have Celiac Disease

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Celiac disease is like carrying around a huge, unwieldy hiking pack on a crowded city street. You can do it, and with some practice and skilled maneuvering you can even make it look graceful, but you never get so good at the contortions that you are glad to be hauling an overstuffed bag. You yearn to set down the monstrosity and meander free and weightless. Unfortunately, that moment doesn’t come as easily as flinging the disease off your back. The celiac pack cannot be unbuckled, unzipped or unsnapped, for better or for worse. 

When you were first diagnosed, maybe you didn’t mind the pack so much. Maybe you were relieved that you hadn’t been dealt the cancer pack or the Crohn’s pack instead. Even so, the celiac pack doesn’t reveal its weight that first day. It digs harder into your shoulders when you learn that the smallest crumb of gluten-containing wheat, barley, rye, oats or spelt will cause your body to attack its own organs, wearing down the lining of your intestines until you can’t absorb nutrients anymore. You picture your digestive tract as a grand Persian rug in danger of going threadbare, so you frantically sterilize your kitchen. 

The celiac pack is heavy, but you also see that its contents are intriguing. Foods you’ve never tried before, experiences you’ve never had before. A stack of papers from the nutritionist with names of new grains you should be eating. Amaranth, for example, which sounds like an ancient food exhibited at the science museum, where fossilized seeds are cradled in shards of excavated pottery. 

Tucked away in the pack are your Imodium, Miralax, Metamucil and Vitamin D to keep your digestive tract running on task. You can no longer count the number of times you’ve needed to extract a heavy bottle of stomach medicine powder in airport security and explain it to a bewildered officer. Once, they were so suspicious that they missed the large bottle of water in your bag, which is an actual liquid. 

In the left side pocket is a magnifying glass, optically adjusted for reading ingredients on labels. The premium celiac pack comes with a megaphone. This is especially useful to alleviate stress on your vocal cords while trying to get the attention of a server at a fast food joint or to alert the person preparing your salad to hold up right there, Flour Fingers, and change those gloves! 

In the bottom of the pack is a journal. Here you recall the time you asked the owner of a restaurant for the ingredients in a certain barbecue marinade and he mentioned chili sauce and Worcestershire sauce, then he brought out the bottles so you could read the ingredients. The chili sauce included anonymous starch and an unnamed vinegar, so you called your sister who also has celiac disease to estimate the likelihood of the vinegar being malt vinegar and the starch being wheat starch, and in the end, you ordered something else just to be safe. But it sure was nice of him to take out those bottles for you. 

More memories, the only two times you knew you had gluten since diagnosis, when you ate a sour gummy candy without checking the ingredients for wheat flour until after you’d already swallowed it, and the time you ate a few strands of pasta that had a particularly robust texture and then realized you’d cooked the wrong box of spaghetti. Sitting next to the toilet trying to throw up while simultaneously Googling to see whether puking mistake-gluten is actually what you’re supposed to do. 

The meals out with your new coworkers/friends/teammates, when your order was rejected because the seasoning might have contained gluten, then your replacement dish finally arrived, smaller, blander and somehow more expensive than everyone else’s. 

Sweet memories jump off the page, like the time you ordered ice cream and without even having to ask, the server scooped from a brand new tub in case the open one was contaminated with cone crumbs. When you were invited to a dinner party and the host reviewed the menu with you in advance so you wouldn’t be scared of getting sick. A Venezuelan restaurant where every dish is gluten-free. How your mom has stayed up until 3 a.m. so many times baking new bread recipes for you to try. 

You carry these things from place to place. Every so often, you come across oases of safe, euphoric eating, which almost feel like the years of your life BCP, Before Celiac Pack. These are the fleeting opportunities to eat with abandon, to fully participate in a communal experience, to put the pack in a corner and be present. To enjoy life in the unencumbered way you imagine people without chronic illness do. Even though you know, in the back of your mind, that everyone has their own pack to bear. 

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Yes, Eating Gluten If You Have Celiac Disease Really Feels That Bad

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According to Coeliac Australia, the disease affects roughly one in 70 Australians. Many people — including a lot of celebrities — love the idea of a “gluten-free diet.” Many people adapt to it unnecessarily, thinking it is a healthier way of living.

However — perhaps due to the trend that’s been accelerated by celebrities — many people are ignorant about the seriousness of the disease.

For example, I’ve often had people dismiss me.

“Are you sure you’re a real celiac?”

“There are a lot of people that say they’re allergic to gluten and wheat, but they’re not.”

No, I’m not sure at all. I just woke up one day and thought that my life would be easier if I didn’t eat gluten.

“But it’s not like you’ll have an anaphylactic reaction. Surely you can just eat a small piece of cake?”

Yes, you’re right. I won’t have an anaphylactic reaction. What will happen, however, if I even eat a tiny crumb of said cake, is not pleasant. For anyone. I will be in unbearable pain for at least two days, maybe three.

My stomach will bloat excessively — which makes it hard to walk — and I will not be able to stop going to the toilet and bleeding.

And increase my chances of bowel and stomach cancer because my body can’t handle wheat and gluten because it’s allergic to it.

But sure, at least it’s not an anaphylactic reaction — that’s when it gets real, right?

“It can’t be that bad, though.”

No, it really can. Once, at a party I was hosting, I’d organized that everything was gluten-free (so there would be no risk of contamination).

A friend brought her own crackers. Not realizing this, I ate some of the same dip as her.

That’s all it took.

Not a biscuit.

Not even a noticeable crumb of a biscuit.

Just the contamination.

That was enough to keep me up all night and put a damper on my party spirit.

I honestly have no problem if you want to go gluten-free. This “gluten-free trend” has meant there’s more awareness surrounding a gluten-free diet, more food options, and (most importantly), better tasting food options.

But, for celiacs, it really is that bad.

They are really sure they have celiac disease.

It is hugely painful.

It is not worth it for a small piece of cake — or anything, really.

And while it might not be as serious as an immediate anaphylactic reaction, that doesn’t mean there aren’t serious, long-term consequences as a result.

So no, thank you, I will not eat cake.

(And yes, I’m well aware that there are gluten-free cakes. I’m actually quite good at making them myself. But that’s not my point.)

This blog was originally published on The Melodramatic Confessions of Carla Louise

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5 Things You Can Do to Make a Gluten-Free Friend Feel Loved

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I’ve been gluten-free for nearly seven years. For me and millions of others, a gluten-free diet is a medical necessity, not a fad.

Do you know someone who’s gluten-free? Here are five simple ways to love on them.  

1. Choose a safe restaurant. Inviting me out to eat? Awesome! Look for restaurants with gluten-free menus or offerings and ask your friend if it is safe for them. Some places that advertise gluten-free food don’t actually know how to avoid gluten cross-contamination in their kitchens.

I actually had a chef at a pizza restaurant tell me that I could eat their gluten-free pizza even though it was prepared on the exact same surface as the regular wheat-filled pizzas because “our oven is really, really hot so it burns off the gluten.” *facepalm*  

2. Let them cook with you. Having your celiac buddy over for dinner? Awesome! For the first time or two, he may want to help you cook. It’s not that he doesn’t trust you, it’s just that it takes time to learn what contains gluten since it can end up in surprising places (salad dressings, wooden spoons and dishwashing sponges, to name just a few).

Many gluten-free folks have learned to cook pretty well out of necessity, and having them in your kitchen can simplify your ingredient-checking and cross-contamination worries. Plus, cooking together is fun!  

3. Don’t get offended. When I ask you a bazillion questions about how the meal was prepared, it isn’t about you — it’s about me. I’ve learned over the years how easy it is to slip up when you aren’t living gluten-free every day. My own parents (both “normal” eaters) make me sick from time to time, and they are ridiculously careful about preparing food for me.

Maybe you worked really hard on those gluten-free cookies, but when you put them on the platter with others containing wheat, they became glutened.

If I have to turn down food you worked hard on or a restaurant you love, please understand that it breaks my heart. You responding with grace and not anger? That helps a whole lot.  

4. Provide a prepackaged snack. I met a friend for a playdate this week, and she brought a muffin for my preschooler (he’s a “normal” eater) and a prepackaged bag of gluten-free pretzels for me. Being included in snack time by being provided safe food makes us feel SO loved. Odds are, if everyone else is hungry, we are, too.

Prepackaged gluten-free foods can’t have come in contact with gluten, so they give us peace of mind. I didn’t have to ask my friend if my pretzels had been near the muffin, or how they were prepared. You don’t even have to shop at a specialty store to buy gluten-free these days, since most mainstream groceries (and even gas stations!) carry a few things. Even naturally “wrapped” fruit like a banana or an orange will do.

5. Remember it’s just a small part of who they are. I don’t mind talking about my gluten intolerance, but it’s not all I want to talk about. I’m also a writer, a pastor, a mom, a runner and about a million other things. I’m happy to answer questions, but then let’s talk about other things, OK?

On behalf of gluten-free eaters everywhere: Thank you!

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or mental illness. Check out our Submit a Story page for more about our submission guidelines.

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To the Doctor Who Searched Endlessly for My Son's Diagnosis

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Alison with her son, Gabriel.
Alison with her son, Gabriel.

Dear Doctor,

I have been meaning to write this letter for a while now. It is four years late, but I have only just felt ready to say these words to you. I have only just realized that they needed to be said.

Thank you.

I have a lot to say thank you for and also a lot to apologize for.

We first met when Gabriel was 5 months old. It was a neonatal follow up after his 27-day stay in the unit following his birth. At first, he couldn’t regulate his rapid breathing and then his heart dotted with holes was discovered. You weren’t there during that stay, so this follow up appointment was our first encounter.

I left that initial appointment feeling positive — you had swiftly arranged physiotherapy for his poor head control, referred us to a development center and said you would review again in three months. Already, we were mentally scarred from our hospital experiences and knew a rocky road was ahead. You were a breath of fresh air at first, but that was short lived. No one has come close to breaking my heart over and over the way that you did. I say break but I mean smashedagain and again.

As Gabriel got sicker and sicker (from undiagnosed celiac disease and a milk protein allergy), you became more and more concerned. The testing began. The first was for muscular dystrophy, then Prader-Willi syndrome. Before we had chance to count our lucky stars, you would shake your head and say not yet. Next was a sweat test for cystic fibrosis (CF), a MRI brain scan, a basic genetic screen followed by an in-depth array. The time between each appointment would be spent seeing new specialists, waiting on results and saying silent prayers of thanks each time one came back negative.

Each new appointment your face remained sombre. Your list was long and the diseases were getting worse. You never gave us chance to pause and reflect. Our baby was ill, getting worse each day and you felt compelled to get to the bottom of it. You pushed and pushed us down a horrific road, when all we wanted to do was dig a hole in the garden with our children and bolt a trap door shut across.

Metabolic testing ensued. Negative, negative, negative. I loved that word. At last I felt it was time to let out a deep breath, but no. You had saved the best for last — a condition called leukodystrophy (where the brain dies slowly) had been on your mind for a while, but for that to be ruled out we’d have to wait until he was 2 years old for a second MRI brain scan. That was months away. That period of my life was the worse I had ever known. I came to terms with a lot in those months.

How we blamed you for our pain. If it wasn’t for you, we wouldn’t be in this hell of testing. We even met the mother of another of your patients who said she hated what you were doing too. The irony that we met in the parent’s room of the pediatric intensive care unit is not lost on me. We were two scared mothers with very ill babies who didn’t like what our doctor was telling us.

Thankfully, Gabriel’s MRI scan was clear and I started to embrace, accept and understand this child of mine more. As long as he didn’t leave us, we’d face this new life with a brave smile.

Every appointment, I wanted to prove you wrong. I wanted Gabriel to show you he was not this boy you suspected. I longed for him to get better, to hit a new milestone so I could say “see I told you so.” The thing is, you knew this. You were always so very kind. You offered to sort out some respite for us. When I came with my lists of questions, you took them away and tried to answer them in his clinic letters. When I called, you came to the phone. When I pestered for results, you chased on my behalf. You called the same day you knew the outcome of any test. You banged on many doors for him to be reviewed by others and asked advice from all your colleagues.

You even referred him to a professor from outside your hospital trust. One you had heard speak weeks earlier about rare food allergies and wondered if he might have some different answers. He did, and we finally got the celiac/milk protein diagnosis. A dairy and gluten free diet turned things around and he started getting stronger day by day.

You kept Gabriel in your clinic until he was nearly 3 years old, a long time for a neonatal doctor, as you wanted him to have a good doctor overseeing his care. We get this with the professor, and his team have since uncovered new treatable things about Gabriel (like growth hormone deficiency). They were able to go down this route only because your devotion, your speed, your diligence left them at a different starting point with so much ruled out.

I knew you did all this and didn’t appreciate it at all. Not then. I do now.

I see friends with older children begging for tests, praying for one doctor to start thinking outside the box, and with many a cruel diagnosis still hanging over their heads.

I want to say thank you for all you did, for never giving up and getting us to the place we are today.

A place of acceptance and hope.

Once again, thank you.

Gabriel’s mum

Follow this journey on Complicated Gorgeousness.

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When a TSA Officer Asked If I Can Use My Feeding Tube for Beer

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In the line approaching security I started to get nervous, although not for lack of planning. I had all the TSA policies on medical liquids ready on my phone. I had an extra feed bag ready in case they made me open my formula and even had the mini 2-ounce Pedialyte bottles instead of the big ones since they looked more medical. I had my feeding pump and everything at the top of my backpack so I could quickly pause the feed and disconnect myself from the pump in order to go through the metal detector. Yet I had heard horror stories about TSA and had problems with them in the past with just a knee brace; a feeding tube was a whole different level of nerve-wracking. However, if I didn’t have my feeds running, there was a good chance I would faint — so that wasn’t a great option either while traveling alone.

Finally it was my turn to go through security. I handed my driver’s license and plane ticket to the TSA officer and then informed him I was traveling with medical liquids and had a feeding tube.

“So you can use that for beer right?”

My jaw dropped. Did he really just say that? Here I was so worried someone would argue with me about my formula or other medical liquids, and I was just questioned about beer. To say I was caught off guard would be an understatement. In the midst of being very flustered by the whole situation I tried to give a friendly chuckle and move on.

I wished I had not been so caught up in getting through security as quickly as possible without causing a scene and had spent the time to educate this TSA officer. After all, my feeding tube is not a joke or something to be ashamed of. The feeding tube has saved me from starving to death, so shockingly enough, putting beer down it has never crossed my mind. Thank you for the suggestion, but I think I will stick to the formula that sustains me for now. Not to mention, I have celiac disease.

Follow this journey on Life With a Flare.

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To Parents With Children Born Healthy Who Feel Sorry for Me

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When you are pregnant and people ask which sex you would like, you happily answer that it doesn’t matter. “As long as it’s healthy,” you say. Because then and there, that’s what you are supposed to say. It doesn’t matter if you wish for a girl or boy, the wish for health comes first.

Then fast forward a few years… and the child, the child that was born with five fingers on each hand, five toes on each foot and an adorable heart-shaped birth mark on her bum…. this absolutely perfect human being that you made? She is not healthy. Not even a little. And you know what? It doesn’t matter even one tiny little bit. You don’t love her any less, you don’t secretly wish to return her for a refund and you wouldn’t change anything about her for the world.

You learn to live with the cards you have been dealt, you make the best of the situation you are in, learn everything you can about the diseases and issues you face, and life goes on. It goes on, and you live and you fight, and sometimes it’s hard, so very, very hard, but it’s OK, because it’s your life, and everything you do is for your child, and it really doesn’t matter one little bit because to you she is perfect in every little way. 

Don’t feel sorry for us, don’t say, “Oh poor you,” don’t say it. Don’t say you are lucky there is nothing wrong with your child. This health thing, it’s a tricky thing because it can come and go, instantly. Think instead, think for a moment, if you see me struggle, how can you maybe help? There is so much you can do, really there is!

Spend time with us. Understand when we cancel for the 15th time. Forgive me for forgetting really simple things. Come for coffee. Ask if you can bring something — I will always say no, but it’s nice when you ask. Call or text, even if I forgot to reply the last time. Send me a link to a funny or cute story, or better yet, make me laugh.

Just be there, be our friend and be our equal, not someone who pities us. My child, my princess, is perfect in every way, just like your child. Things sometimes aren’t as simple for us — just accept this. Accept us, this way, the way we are.

Things are a bit tricky for us lately. Don’t walk away. We need you now more than ever.

girl wearing hospital mask holding pink and purple stuffed animal
Linda’s daughter.

Follow this journey on GlutenFree & Me.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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