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7 Celiac Nightmares and How the Newly Diagnosed Can Avoid Them
There’s something terrifying in some of what should be the most mundane places when you have celiac disease, and despite your best attempts and the efforts of loved ones, trying to keep from being ‘glutened’ can be nearly impossible. When you’re new to the disease, life can feel like a minefield. Trying to navigate it isn’t always successful. Celiac disease complications are hell. My family is full of celiac sufferers, and I get it. Gluten is everywhere. Grocery stores, restaurants, and 90% of the places you’d love to hang out…
If you’d like to skip the unpleasant and unexpected trips to the bathroom, itchy and dry skin, foggy head, and migraines, there are answers. You really don’t want to deal with the long term complications of celiac disease, anyways. Cancer and malnutrition just aren’t fun.
Keep yourself safe first. You might have to stretch a little outside of your comfort zone to implement the tips below, but trust me. That’s much better than the alternative…
First things first, give this list to your friends, family, co-workers, neighbors, the cousin of your best friend from childhood who you run into the grocery store…and anyone else who might gluten you. An educated co-worker or loved one can spare you hours, days, or even weeks of misery. You’ll also be giving them something worth almost as much as a gluten-free kitchen: an idea of what it’s like to be in your shoes.
There’s No Option Apart From Eating Out, And You Aren’t Sure It’s Safe
It’s a nightmare every celiac sufferer faces at least once, and it can be horribly uncomfortable to deal with. There’s a special event, a pre-arranged work lunch, or another inescapable dining experience outside your own kitchen. You aren’t sure it’s a safe place to eat, and the thought of going has you terrified.
If the event is planned in advance, talk with the restaurant or catering company. Make sure that they understand you have celiac and will become horribly ill if you are exposed to even the tiniest particles of gluten. Tell them how much you’d love to try their food, and that the event is something you really can’t miss, and ask them if they can accommodate you. If they aren’t sure they can avoid exposing you, ask if they would mind if you brought your own meal from home, due to the severity of your illness. 99% of the time, they’ll say go for it. Feel like they’d be willing to help, but they aren’t sure how to prepare a GF option that’s safe? Consider using Gluten Free Restaurant Cards from CeliacTravel.com 1.
Last-minute events can obviously be more terrifying, and for good reason. There are a few easy solutions, however. First, get a smart phone. Your life will never be the same, and neither will your dining experience. There are plenty of apps that can help you identify safe places to eat, but some have errors. Our favorites are ieatout 2 and Find Me Gluten Free3.
Someone Made You A Baked Gift. Now What?
It’s staring at you. That deliciously-dangerous glutinous goody, fresh-baked and smelling like heaven. And then the worst thing possible happens. They give it to you.
Do you tell them you are celiac? You know the gesture was meant to be friendly, loving, and nice, but it’s also dangerous…just think about the neurological complications of celiac disease.
Turn it down.
Gently explain that you have celiac disease and step away from the pie, cookies, cake or whatever else they’re offering. Offer to give them some materials on celiac disease complications, and if they’re interested, to show them how to make some of your favorite GF recipes. It’s easier to nip this gesture in the bud now than to have to explain yourself later at a party or social event, where the giver will find out and feel even worse about their earlier gesture – or heaven forbid – after several ‘gifts’ of a dangerous kind.
You Can’t Get Enough Sleep…And When You Do, You Have Celiac Nightmares
Gluten is everywhere during the day. The pizza shop you pass on the way to work, the donuts you see in the office breakroom, the pasta your co-worker eats for lunch, and the chicken nuggets your kids eat at school. There’s no escape. You thought night would bring a break from the gluten, but it doesn’t.
You dream about it.
From terrifying dreams about foods that are out to get you, to full-blown gluten-induced nightmares and insomnia after accidental exposure. The neurological complications of celiac disease are ruining your ability to get a decent night’s rest, and medicine doesn’t know why.
First, check your diet carefully. Make sure you eliminate all traces of gluten. In some cases, that’s all it takes, but even a perfectly gluten-free diet won’t alleviate the bad dreams 4 for many celiacs.
What can you do if you’re still not getting any rest?
Start a journal. Before you go to sleep, brain dump. Write everything that’s on your mind down, and then try to shut down your mind. Optimize your sleeping area for comfort, and remove all electronic devices and distractions. If it keeps up, talk with your doc about an anti-anxiety or anti-depression medication. Depression, anxiety, and fatigue are common in celiac sufferers, in part due to the lack of sleep, but they can also exacerbate your lack of rest.
Someone You Love Made You GF Treats, But The Cross-Contamination Is Obvious
That friend who baked you the scary, glutinous goodie is back. She’s having a party, and she’s made some special GF treats just for you. A plate of yummy-looking cookies, with a special “Gluten Free” tag, penned in gorgeous calligraphy.
But there’s a problem.
They’re surrounded on all sides with gluten cookies, and as the crowd serves themselves from her smorgasbord of treats, the same pair of tongs is being used to pick up gluten and GF treats.
Thank her for the gesture. Now isn’t the time to say anything. On another day, quietly tell her in private how much her efforts to accommodate you mean, and give her a little more information on keeping you safe. Oh, and no. Don’t eat those cookies…
Getting Glutened – On Vacation
Travel isn’t easy. You do everything you can to avoid getting exposed, but then it happens. You’re on a trip that’s supposed to be about relaxation, and the most of this new and exciting locale that you’re seeing is the bathroom. You’re uncomfortable, unhappy, and if your family is like most, probably alone in the hotel while they’re out on the town.
Stop. This doesn’t have to be you.
Travel can be fun, and celiac doesn’t have to rule your life. There are a few basic steps you can take to avoid exposure, even if you’re in a part of the world where no one even knows what celiac disease is.
Option 1: Book a place with a kitchen and buy your food in local stores or markets. It’s a great way to see the differences between cultures, helps you guarantee a healthy meal, and you’ll be cutting the exposure risk to 0. Vacation rentals and long-term stay hotels usually come equipped with a few basic cooking supplies and may even have a partially-stocked pantry.
Option 2: Feel like a night on the town? Check out area cooking classes. Talk about an experience! You can learn about the local cuisine while making sure your food is gluten free. Bonus points for calling ahead to make sure the instructor knows you are celiac.
Option 3: Go ahead and eat out, but talk to the chef or cook at the restaurants you visit. Tell them you can’t eat wheat, barley, rye, or oats, and ask for a few good recommendations from the menu. And tell them what you can eat, too.
The First Date Kiss, After You Watched Them Eat a Pile of Gluten
Ready to pucker up? This is one of the best dates you’ve been on in ages, you’re looking forward to that sweet goodbye that says “see you soon,” and you’re also terrified. The end of a first date is a scary situation for most singles, anyways.
If you really like this person, you want it to go perfectly. You don’t say a word about celiac until you’ve gone out a few times, so you dance around the menu or talk with the chef in advance if you go out to eat, or fake being full if the option proposed is pizza.
And then there’s that complicated goodbye…that moment when you want them to kiss you, but you’re terrified of the results.
You’re making too much out of it. Sure, skip the kiss, but just say that you don’t kiss on the first date. It’s that simple. And next time, you pick the place – make it a gluten free restaurant or the movies, so that goodbye kiss becomes a possibility.
Your Favorite Toiletries Are Full of Gluten
According to the Celiac Disease Foundation 5, “gluten must be ingested for it to be cause for concern for someone with celiac disease or dermatitis herpetiformis. However, we still recommend you avoid any products that have the potential to be ingested.”
That sounds great in principle, but many celiac sufferers find out the hard way that gluten in lotions, shampoos, conditioners, and other body products can easily be ingested in small quantities. If you’re sure you can avoid this, then use the products you already know and love. Depending on your level of sensitivity, that may or may not be a problem for you.
Not sure how well you can keep yourself from biting your nails, chewing on your hair, or some other nervous habit that could lead to ingestion? Keep the gluten out of your home by switching to gluten-free toiletries and asking family members to do the same. There are several companies that make gluten free cosmetic and many of the mainstream companies also make gluten-free toiletry options for celiac sufferers.
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