To the Girl Who Wished She Had Celiac Disease to Be ‘Skinny Like Me’
I met you my first week as a college freshman. You know what I thought first when I saw you? “Wow. She’s gorgeous.” Long, thick, blonde hair; clear skin; curves that were sure to catch even the upperclassmen’s attention. She was everything I wasn’t. She was, in some aspects, everything celiac disease had taken away.
You see, I’d only received my celiac disease diagnosis a few months before. Some girls get a surprise serenade from a cute boy asking them to prom; the week before my senior prom, I got a call from my doctor instead. In that afternoon phone call, a few simple words changed my life: “celiac disease” and then “gluten-free diet.” I spent the summer before my freshman year of college shopping for notebooks and dorm furniture and a new backpack – but also learning how to eat a diet I’d never even heard of weeks before.
I don’t say all of this to make you feel bad for me or to get pity. I just want to help explain why I didn’t expect any college student to want to be me. At that point, I was 100 percent gluten-free but still struggling to heal…which meant my weight was really low. While my fellow freshman hallmates devoured pizza and hamburgers and whatever meals happened to catch their eye in our college cafeteria, I scoured the salad bar and the small “gluten-free” section, trying to find something safe and filling. I ate a lot of salads.
I had a mouthful of lettuce when you made this comment – a comment that occurred four years ago but still sticks out in my mind. We were sitting together in the cafeteria, along with all the other girls from our hall. It’s a typical freshman strategy: safety in numbers, we think. And, apparently, you care about numbers.
How do I know? Because, even as you bit into that slice of pizza (pepperoni with extra cheese, which reminded me of the Papa John’s pizza my family would order some Sunday nights), you said it: “I wish I could have celiac disease so I could be skinny like you.”
At the time, I laughed it off. I chuckled, stabbed at another piece of wilted lettuce and said, “Well, I’d trade you 10 pounds for a slice of that pizza.”
Now, though, I’m done laughing. I know you didn’t mean any harm. You were – maybe still are – just a victim of the societal beauty standards that proclaim skinny is best. However, I’m now four years older, stronger and more experienced. And this is what I wish I had said to you – and what I wish everyone would know about celiac disease.
I wish I had told you that not everyone with celiac disease is skinny. In fact, “celiac disease weight gain” is a popular Google search because it does happen relatively often. Some people diagnosed with celiac disease are overweight. Celiacs can also gain weight on the gluten-free diet, either because their body is finally absorbing nutrients or because they load up on gluten-free alternatives to old foods. So don’t assume that celiac disease will lead to weight loss – or that you must experience weight loss to receive a celiac disease diagnosis.
I wish I had told you that, as sick as I was at the time from celiac disease complications, your mindset was even sicker. It’s sad – scary, even – that girls like you are often tricked into valuing appearance over health. There is nothing glamorous about weighing so little at 18 years old and having to be hospitalized and fed through a feeding tube for two weeks. Who cares if you’re “skinny” if you can’t live fully enough – or, even more seriously, long enough – to enjoy it?
I’m sure a lot has changed in the four years since these words escaped your lips. We’ve both graduated college, and you’re probably experiencing your share of life milestones, as am I. All I have left to do is to share a few hopes. I hope you learned more about celiac disease from the time you spent at college with me. I hope you love your curves and your thick hair and all of the other physical signs that your body is healthy and thriving.
And I hope you never again wish to have celiac disease so you can be skinny. First, because one doesn’t necessarily lead to the other. And second? Because I’ve learned how good it feels to be healthy…and I want every other person to have the chance to strive for – and savor – that same feeling.
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5 Secrets to Loving Your Body With a Chronic Illness
When you read magazines or hear TED Talks about self-love or body image, the tips may sound easy, ranging from “Look in the mirror and say you’re beautiful” to “Exercise for the endorphins and a reminder of all you can do.” When you have a chronic illness, however, learning how to love your body can be more complicated.
I’m still learning those answers. However, here are five secrets to loving a body with a chronic illness that I’ve discovered so far.
1. Stop comparing your body to “normal” counterparts.
Honestly, as a female college student, this is one of the hardest tips for me to follow. Every day as I walk across my college campus, I see girls who seemingly have the “normal” body I often crave. They can rock crop tops without worrying about looking five months pregnant. They have the curves I lost from my celiac diagnosis.
However, the more friends I’ve made, the more I’ve realized that even seemingly “perfect” bodies can have their issues. One friend revealed that she is missing toes on her right foot, and always wears closed-toed shoes to cover up her “flaw.” Another friend – the girl who appears to “have it all” in terms of beauty, brains and a doting boyfriend – has Ehlers-Danlos syndrome and is often in extreme pain.
All of this goes to say that comparing your body to other people’s won’t only make you feel worse, but it is also a false sense of comparison. Just like people don’t know I have fibromyalgia or celiac disease by looking at me, I don’t know what struggles they’re going through. Self-love is an intensely personal process; as such, you should ditch comparing your exterior to anyone else’s!
2. Come up with funny names for your flare-ups or symptoms.
Am I the only one who turns to humor when I’m having a hard day? At least from my conversations with other chronic illness warriors, the answer is no! I was talking to a friend with severe IBS, complaining about waking up like a bloated whale. Her response? “We all have our fluffy days. When I wake up like that, I say Miss Puff has come to visit!”
Now, anytime my intestines aren’t behaving, I credit Miss Puff. It’s a way of reminding myself that I shouldn’t take life – or my appearance or celiac side effects – too seriously.
Maybe you say your body is “under construction” on days when you have a jackhammer . Or if you’re prepping for your colonoscopy (been there, done that), you can say you’re on a “celebrity detox.” The nickname is up to you. Just find some way to remind yourself to laugh and see your struggles with humor and love, even in the most frustrating of times.
3. Find a confidant who understands – or at least tries to.
It’s impossible to deny that, sometimes, living with a chronic illness sucks. It can mean having to cancel fun plans with friends, avoiding certain foods or restaurants or even feeling like a zombie all day. When I’m having a rough day, nothing helps more than having a venting partner who understands (and therefore won’t say inappropriate comments, like “I wish I had celiac disease so I could be skinny like you“). These partners can keep you from feeling alone, remind you how awesome you (and your body) really are and help you vent…and move on!
If you’re lucky, you may have someone with similar medical challenges who lives nearby. In my case, I was fortunate enough to find a college roommate with fibromyalgia. When it was raining, we complained about our joints…together! Even if you live in a small town where no one else understands, you can find a “spoonie” friend online. You can explore chat rooms for your illness, join Facebook groups or even blog about your illness (like I do!) and connect with other bloggers.
Research has found that people with strong social networks are less vulnerable to ill health and premature death, and cope better with various life stressors. So, the next time you need a helping hand, find an empathetic ear instead.
4. Find activities you can enjoy even during a flare-up.
, the most frustrating part is feeling like your life is controlled or limited by your disease. As a result, it’s important to find activities you can enjoy no matter how you’re feeling. For instance, when I’m feeling good, I love exercising, blogging and exploring my college town with friends. If I accidentally consume gluten, though, I feel like a brain-fogged zombie for a few weeks – and during that time, I enjoy watching Netflix with friends, reading books and taking short walks outside instead.
Being happy with a chronic illness often requires compromising – but that doesn’t mean you shouldn’t enjoy your backup plan. If you’re hit by bad migraines, your “flare-up activity” may involve quietly listening to your favorite podcast as you rest in bed. Or, if you have fibromyalgia and your joints are screaming from the weather, an easy hot yoga class could clear your mind while stretching your body.
Sure, you may not always be able to do everything you want with a chronic illness. With celiac disease, I’ll never be able to eat a “normal” gluten-filled pizza again. However, you can still find ways to kick butt at – and love – life. And when you’re loving what your body can do – even at its lowest functioning – you’re one step closer to loving your body itself.
5. Realize that your chronic illness is a part of you, for better or for worse.
My last tip is perhaps the most challenging: acceptance. If you’ve recently been diagnosed, it may take more time for you to accept that a chronic illness is now a big part of your life. The longer you live with it, though, the more “normal” your illness can feel. And, more importantly, the more positives you can discover.
For instance, I can’t eat gluten – but my celiac diagnosis gave me a new love for cooking (my own, safe gluten-free food). I can’t lift super heavy weights without possibly tweaking a muscle – but the 24/7 pain caused by fibromyalgia has taught me strength and determination. (Not to mention, it’s given me a decently high pain tolerance!)
Now it’s your turn to fill in the blank: My [chronic illness] has fostered [*insert positive traits here*]. It may take you time to figure out what benefits you’ve received, but they exist. I promise. And the more positives you find, the easier it’ll be to love your body for all it has given you…instead of hate it for anything it’s taken away.
Body image is complicated enough when you don’t have a chronic illness. However, loving a body that doesn’t seem to love you back isn’t only possible – it’s also necessary. In my case, I’ve discovered that my stomach acts up more when I’m stressed, so if I stress out over an intestinal freak out, I’m only perpetuating the cycle.
Pay attention to your own flares and see if you can notice any similar patterns. But, even if you don’t, improving your self-love with a chronic illness should still be on the top of your to-do list. You may not have control over your chronic illness, but you can control how you view your illness and your body.
Who knows? Maybe using these five tips and choosing to love your body – despite its flaws – is the first step to your body loving you back.
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Traveling by Airplane When You Are Gluten-Free
From plump bagels to fragrant cinnamon rolls, juicy burgers on buns to pizza slices gooey with cheese, the standard American airport food court is full of tempting – but forbidden – foods for those of us on gluten-free diets. If you have been recently diagnosed with celiac disease or gluten intolerance and are still “learning the ropes” when it comes to gluten-free dining, an upcoming trip involving air travel can seem especially daunting. Fortunately, as awareness of the need for gluten-free foods has increased, there are actually many options for snacking and dining for domestic air travelers.
While some North American airlines offer gluten-free meals on international or transcontinental flights, others do not. As of summer 2017, Frontier Airlines, Hawaiian Airlines, Southwest, Spirit and Virgin America do not offer gluten-free meals. Alaska Air has recently started offering GF “tapas boxes” containing pre-packaged snack foods. JetBlue reliably offers complimentary GF snacks as well as others available for purchase. Air Canada, Delta, United and Virgin Airlines all offer GF snack options for purchase. If a snack item is not specifically labeled as being GF, read the label carefully. Those complimentary little bags of peanuts might have been packaged in the same facility as wheat products and will be labeled as such.
The number one piece of advice you will find on eating gluten-free while traveling is to fill your carry-on bag with gluten-free snacks. Pack yourself a sandwich on gluten-free bread. Consider GF energy bars, granola bars, veggies, fruit, crackers, cookies and even GF cereals to munch on. Many varieties of KIND bars are gluten-free as are Larabars. Nature’s Bakery makes a line of GF fruit and fig bars that are both filling and delicious. For something a little more substantial, try Go Picnic boxes of prepackaged GF processed meats, cheese dips, crackers, fruit leather and more.
If you’re short on snacks from home and want to stock up on GF foods at the airport, fruit and yogurt are safe and healthy options. As with any foods you buy, always read labels! Those packages of nuts, dried fruit and trail mixes carried by most airport shops may seem like a healthy option but might not be safe. Cross-contamination with wheat-containing foods during packaging is common in many brands of trail mix.
There may be times where your only airport food options may be found in vending machines. Fortunately, there are many common candies and chips that are GF including Lays potato chips, Fritos, Doritos (Nacho Cheese flavor), M&M’s (plain and peanut), Snicker bars, 3 Musketeers bars, Skittles and Starburst. There are a plethora of blogs and websites dedicated to living gluten-free which list safe junk food options. Do a simple internet search on the subject before you leave home and be sure to avoid snacks with “hidden” gluten like classic Milky Way and Nestle Crunch bars which contain barley malt. Twizzlers and other licorice candies are made with wheat flour and are obviously off limits as well.
If you’re not running to your gate and have time for a hot meal, fast food is probably a safer option than eating at an airport bar or “sit-down” restaurant. The potential danger of eating gluten-free in restaurants and how to mitigate the risks is a subject for a whole other article. Ignorance of what gluten is and how to avoid cross-contamination in the kitchen is unfortunately too common in the restaurant industry although franchises like Red Robin, PF Chang’s, Pei Wei and Five Guys have been recognized for their diligence in providing safe GF meals. If you must eat at a sit-down restaurant, salads (without croutons) and oil and vinegar dressing are generally safe options as is plain grilled meat and baked or plain mashed potatoes. French fries are often prepared in the same fryer as breaded chicken tenders and onion rings, thus making them off-limits.
It’s easy to go online and research the airports you will be visiting to learn about your dining options in advance. Once you know which restaurants are available, you can then search their websites for allergen information and gluten-free items. Here are a few gluten-free fast food options in a nutshell:
McDonald’s: My go-to GF fast food meal is a Quarter Pounder with cheese (no bun), side salad with ranch (Newman’s Own brand ranch dressing is GF) and a hot fudge sundae (nobody said you can’t treat yourself on a gluten-free diet!) Warning: there is conflicting information out there about the gluten status of McDonald’s fries. While they are made in a dedicated fryer, they are lightly coated in beef flavoring which contains wheat ingredients – and gives them their unique flavor. Some folks with celiac disease claim they can eat McDonald’s fries with no ill effects. I ate them for the first year after being diagnosed but then had a bad reaction. I don’t recommend taking a chance.
Burger King: Burgers or grilled chicken sandwiches without buns are good options as are some salads and soft serve. Again, research the menu online to make sure you’re ordering gluten-free options. The BK website notes that their fries are not GF.
Wendy’s: Chili and baked potatoes are tasty, GF and filling! Check out their salads including the taco salad made with GF tortilla chips. A Frosty is a safe treat as well.
Chick Fil-A: this franchise is a great option not only for people who have to avoid gluten but for those with other food allergies as well. Their grilled chicken offerings, salads and fruit cups are great alternatives to bun-less burgers. Best of all, the waffle fries are gluten-free (and delicious!)
Overbooked seats, disgruntled fellow travelers, hidden fees, delays and flight cancellations are all stressful issues that flyers have to contend with these days. If you do a little research and pack plenty of gluten-free snacks, being hungry won’t be one of them.
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Lead photo credit: Joy Fera
10 Things I Wish I Knew When I Was Diagnosed With Celiac Disease
Receiving a diagnosis of any kind is always hard. No matter what it is, life as you know it will change forever. For some, this is only temporary and for others, it is permanent. You never really think about how difficult it can be to completely change your lifestyle, but once you make it past all the bumps in the road, you are on your way to recovery. When I was first diagnosed with celiac disease, I never realized how hard it was going to be. Yeah, I said it. It was hard. I am not going to sit here and sugar coat the fact that the first few months with this disease was absolutely hell.
I am going to go off on a whim here and assume that you came across this list because you or someone you know was recently diagnosed with celiac disease. Or maybe you are just genuinely curious as to what celiac is and why we need to eat gluten free. Either way, I’m glad you are here. I decided to come up with this list because I feel that my transition to a gluten-free life would have been easier had I known these things.
1. You will miss out on social outings.
This will happen a lot. Sometimes because you are too tired to go out, but most of the time it is because you were not even invited out in the first place. You never really know who your real friends are until you hit a roadblock in life. Your true friends will have your back and support your new dietary needs by doing research with you on restaurants that have gluten-free options and are aware of cross contamination. (A huge thank you to my besties for being so supportive of this, you know who you are!) I have been excluded from outings with my “friends” because they figured I wouldn’t be able to eat anything or I wouldn’t want to go since I am always tired. Newsflash – I can’t eat gluten, but that doesn’t mean I can’t go out and enjoy life like everyone else.
2. Just eating gluten free isn’t enough.
Gluten hides everywhere. It is in makeup, chapstick, shampoo, toothpaste, soap, lotions, cleaning supplies and even in the air. A gluten-free diet is simply not enough for somebody with celiac disease. Even the tiniest amount of gluten will set off a reaction and send our bodies into ultimate mayhem. I wish I knew this earlier because despite following a strict gluten-free diet for months, I was still feeling crappy. Turns out the BB cream I was using contained wheat flour. Why on earth it did, the world may never know. I have also experienced reactions to breathing in air particles from bakeries and grocery store bread aisles. I am not joking. You will basically need to read the labels on everything in your house and throw away anything containing gluten. Also, don’t go near the bread aisle or into a bakery. (Side note: Not every celiac is sensitive to gluten particles in the air, I did not think I was until I spent a week suffering from being “glutened” after walking down the bread aisle as a shortcut to the front of the store. I’ll never do that again. It is best you just steer clear to avoid any complications.)
3. You will get “glutened” occasionally.
Celiacs will spend the rest of their lives trying to avoid being glutened. As sad as it is, no matter how hard we try, it is bound to happen a few times. I spent the first few months completely clueless as to what cross-contamination was and how it was still making me sick. I felt a little better when I was eating gluten and dairy free, but not 100 percent better, and that was because I was still consuming gluten unknowingly. Be diligent about what you put into your body. If you touch a donut or a piece of bread, do not panic. Just wash your hands thoroughly to avoid the transfer of gluten particles to your face and ultimately into your mouth. I have glutened myself this way, and it is not fun. Obsessing over not getting glutened will ultimately add more stress and to your life than you need. As long as you are constantly being careful, there is not much more you can do. I know it sucks, but its the truth. We struggle because of an autoimmune disease and we are going to have bad days and weeks because of it. Take each glutened moment as a learning opportunity and reflect on what you could do better next time to try and prevent it from happening. With time, gluten free life gets easier and you will get glutened a lot less often.
4. You will have bad days. Adapt and overcome.
I am very straightforward about everything that I do. Like I said earlier, I am not going to sugar coat anything. Having an autoimmune disease, such as celiac disease, makes it hard to predict how you will feel on a day to day basis because your body is basically working against itself. There are days where you will wake up exhausted with just an all overall feeling of yuck – even if you did not consume or use any gluten filled products. This happens a lot in the first year and will occur less and less as time goes on. Based off of personal experience, this normally happens to me when I am dealing with stress or I overwork myself to the point where I get sick. My best advice for this is to try and listen to your body and learn your limits. You will also learn how to go about your normal day as best as possible while feeling like this, which means that you are pretty much a superhero.
5. People will not take your needs seriously.
It’s a sad world we live in that people make a joke out of the way other people live their lives. The whole reputation surrounding the gluten-free diet has been completely sabotaged and given a bad name by the media and people using it as a “get thin quick” scheme. A public service announcement: Most people eat gluten-free because they have to, not because they choose to. I have encountered a friend of a friend that looked me straight in the eyes and said, “Gluten isn’t even real.” I have had people tell me that one little bite won’t hurt me and that I am overreacting. I have had people straight up tell me to my face that it is “all in my head” and that they do not take my “gluten problem” seriously. Are you kidding me?!
It’s truly infuriating and it makes me sick. Most of these people I do not need in my life anyway and have not spoken to since. You will encounter these types of people (or maybe you already have), but do not let them get to you. It is not your job to deal with their ignorance.
6. Unless its certified gluten free, do not eat it.
This is one of the more important ones. It is a simple mistake many new celiacs make and I cannot really blame them because I made the same mistake too. It’s complicated enough to have to switch your entire life around. I get it. But you need to ensure that you are adapting to the gluten-free lifestyle correctly.
You will find yourself in the grocery store seeing many products with the words “gluten free” plastered all over their packaging. The truth is, is that most of these products actually do in fact contain gluten. The Food and Drug Administration (FDA) states that a gluten limit of less than 20 parts per million (ppm) is considered safe for declaring a product gluten-free. The FDA also states that most people with celiac disease can tolerate foods with very small amounts of gluten. This is somewhat problematic because some celiacs cannot even tolerate one ppm of gluten, while others can handle the 20 ppm.
This is something that is still up for debate as the FDA did not have any gluten-free standards in place until 2013. The difference between “gluten free” and Certified Gluten Free is that in order to get the certified seal on a product, the company that made the product is held to the standards stricter than the FDA by the Gluten-Free Certification Organization. The Celiac Support Association even has their own seal on products, testing manufacturers to the highest degree. These two are the ones that I have seen most often, however, other gluten-free certification agencies do exist.
7. Have snacks on hand at all times, you never know when you may need them.
You will not be able to run to the nearest fast food place to pick up food when you are hungry. Due to an extremely high-risk cross-contamination factor, going out to eat is one of the things that celiacs learn to avoid (for the most part). Because you are human, there will be days you go out and forget to eat before or grab something to bring with you. This is why I always make sure to have safe snacks in my purse, car and at work. It’s also good for when you are out longer than expected and find your tummy rumbling with hunger. You never know when you and your friends may make last minute plans and you may be out in an area with no celiac-safe restaurants. I have found myself in this type of predicament quite a few times in the beginning and let me just say that it wasn’t pretty.
8. Thank your loved ones for helping and supporting you.
Nothing makes me happier than my mom excitedly telling me that she found a new gluten and dairy-free recipe for us to try! Having her support and involvement with my disease is one of the many reasons I am constantly thanking her. Your loved ones are the people in your life who will be there with you through sickness and health. Chances are, you had one or more of them by your side throughout this long journey. While being sick and experiencing the things that we do, we may forget to express our gratitude towards these important people for all that they have done and continue to do for us. They offered you a shoulder to cry on, they accompanied you to doctor’s appointments, they helped you do research on your new condition, and they continually make sacrifices to ensure that you feel comfortable and safe. It takes a lot for them to do these things for you, so make sure you thank them often.
9. Dedicate a special cabinet to all of your gluten-free foods.
Unless you live alone or are in charge of the kitchen, chances are that you will be sharing kitchen space with gluten-filled food. Since cross-contamination happens so easily, it is best to keep all of your food in its own section. In addition to having your own cabinet/section, it is important to have your own pots, pans, bakeware, and food storage containers. Like I have mentioned before, gluten hides everywhere. So as a best practice, keep everything that you use separate and dedicated to gluten-free foods only. And please, do not ever use the same toaster as anybody else. Get your own toaster! I learned all of these things the hard and painful way and I would hate for anybody else to have to do the same.
10. It is going to be OK.
If you get anything out of this list, please let it be this. It is going to be OK. I know it may not feel like that now or even six months from now, but I am telling you that one day you will see that everything is alright. Living with a chronic illness is hard. It is overwhelming, tiring and stressful. But knowing that each day you learn something new about yourself and your illness makes you more knowledgeable, better prepared and will put your mind at ease because you know that you are working on healing yourself and getting your life back. It’s a long journey ahead, but I promise that once you finally acclimate yourself to your new lifestyle, you will realize just how strong you truly are!
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When a Music Festival Wouldn’t Let Me Take in My Celiac-Safe Food
One of my favorite bands put on a music festival this spring that I’d been looking forward to for months. I had hung out online the day tickets were released to catch some before they sold out. I made hotel reservations way in advance. And I planned what food I’d bring with me to keep me fed for a two day festival. Because I have celiac disease, I often have to bring my own food when celiac-safe food might not be available. (There is a often wide gulf between food marketed as “gluten free” and food which is celiac-safe).
My excitement derailed when the production company running the festival sent out an email listing things that would not be allowed in, which included food of any kind.
I figured that, as in most cases, I could simply tell the folks at the gate that I have a , and that the Americans with Disabilities Act (ADA) allows me to bring in my own food. That approach has always worked for me (though others have nightmare stories). But this time, since it was an out of town, I figured I’d better check on their policies ahead of time – or risk starvation.
I wrote to the festival and politely asked them to confirm that ADA accommodations would still be made, despite the apparent blanket ban on outside food. The answer was “no”– unless I brought a doctor’s note saying that I have an “allergy.”
So I went on Westlaw to read the relevant regulations, and called the ADA line at the Department of Justice (DOJ).
The ADA Specialist at DOJ said, yes, a festival must allow you to bring in your own food, and, no, they can’t ask you to “prove” your disability.
I’ll list the regulations they pointed me to below, but first, an important point: The fact that they legally can’t discriminate will not stop them from discriminating.
Indeed, this production company, when faced with the information that the DOJ said the law of the land does not allow them to demand a doctor’s note, responded by doubling down, and not only reiterating that I must present a doctor’s note, but also placing restrictions on the kind of food I would be allowed, even with the note. They said I could only bring packaged food. For this last restriction, they may be able point to some justification relating to restaurants and food safety; perhaps they’ve suffered a rash of fresh-baked muffin bombs. Whatever. That part I could live with.
The part I could not live with (eating being a “major life activity,” as defined by the ADA) was starving all day due to my inability to obtain a doctor’s note at last minute
And I shouldn’t have to live with that nonsense.
It is not OK to treat disabled people as liars. The DOJ’s ADA Specialist supported his opinion with a publication called the “ADA Title III Technical Assistance Manual Covering Public Accommodations and Commercial Facilities,” which states simply at section III-4.1300: “The ADA prohibits unnecessary inquiries into the existence of a disability.”
Support for this statement comes from relevant regulations, including the following:
§ 36.301 Eligibility criteria.
(a) General. A public accommodation shall not impose or apply eligibility criteria that screen out or tend to screen out an individual with a disability or any class of individuals with disabilities from fully and equally enjoying any goods, services, facilities, privileges, advantages, or accommodations, unless such criteria can be shown to be necessary for the provision of the goods, services, facilities, privileges, advantages, or accommodations being offered. (b) Safety. A public accommodation may impose legitimate safety requirements that are necessary for safe operation. Safety requirements must be based on actual risks and not on mere speculation, stereotypes, or generalizations about individuals with disabilities.
And should I ever realize my dream of having my chihuahua trained to sniff gluten, this reg should come in handy:
§ 36.302 Modifications in policies, practices, or procedures. . . (6)Inquiries. A public accommodation shall not ask about the nature or extent of a person’s disability, but may make two inquiries to determine whether an animal qualifies as a service animal. A public accommodation may ask if the animal is required because of a disability and what work or task the animal has been trained to perform. A public accommodation shall not require documentation, such as proof that the animal has been certified, trained, or licensed as a service animal. (emphasis added).
Alas, all of this does me no good when I’m standing with a bag full of food before an officious festival worker determined to enforce company policy in spite of the ADA. In the end, rather than risk starving, I simply attended only a couple of the festival’s acts. Maybe by throwing a big fit, I could have gotten in without a doctor’s note. But I’m exhausted. I’m tired of the fight. I don’t have the emotional energy to be a disability warrior every damn day. It was wrong that I had to waste part of my $100+ ticket. But it seems we live in a world where not only do right and wrong not matter, but legal and illegal do not matter.
To add, the DOJ’s ADA line makes the point, when you call, that their answers are non-binding. And as a lawyer, looking at the regulations the specialist pointed me to, I could still make a weak argument that those regulations don’t cover this situation. The examples are not closely on point. It would be helpful if the ADA would publish guidance specifically related to food sensitivities in places of public accommodation. I would be more than happy to draft it for them.
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How We’re Adjusting to a Gluten-Free Lifestyle to Manage My Son’s Celiac
I used to roll my eyes walking down the gluten-free aisle at the expensive grocery store — that is until my child, my baby was diagnosed with Celiac disease. I call him my baby because he has such an angelic quality to him, but he’s 6 years old now and he was at the time of his diagnosis. So for six whole years I shrugged off his bloated belly as an adorable feature that I was in no hurry for him to outgrow, all the while he was in pain. I know Celiac disease is manageable by following a gluten-free diet, and God knows how blessed I know I am to have otherwise healthy children, but man, this shit is hard! We’re only two weeks into diagnosis, and tensions are high in my home.
First of all, the transition from gluttonous to gluten-free eating is not going so well. (Yes I know the two words are unrelated.) I suppose any logical person would say just throw all things gluten away or donate them, but I’m not logical, I’m emotional and thrifty! I just can’t bring myself to throw away a perfectly good Costco-sized box of Kodiak pancake and waffle mix. I mean not only is the stuff delicious, it’s good for us… well, all but one of us. On the other hand I can’t let my other two kids down a dozen donuts for breakfast while he watches. But really, is it fair to “deprive” my other kids of donuts, waffles, cake and hot dogs? In my house those are pretty rare as it is. They usually mark a special occasion: birthdays are for Donuts-with-Dad, pool days beg for hot dogs and burgers and everybody knows something wonderful is being celebrated when someone brings a cake! My husband, bless his heart, I see it in his eyes, the question of if it’s really “necessary to make him live in a gluten-free bubble?” He did actually ask that. And yes, it is necessary! I know he’ll come around. I just pray it’s sooner than later.
It’s cliche to say hindsight is 20/20, but it’s such a fitting statement right now. Looking back I can see all the ways the disease was taking pieces of my little boy. Since cutting gluten out of his diet, he doesn’t rush home to jump in bed for a rest anymore. He joins his brother outside to play. He not only clears the food right off his plate but he’s now asking for seconds. He’s actually both physically and mentally quicker. Most notably, he doesn’t experience headaches once a day and stomach aches at night. I’m ashamed to say I actually started to think his complaints were excuses to prolong the bedtime routine or habitual phrases he used to phrases to fill silence.
I know the changes will get easier and soon feel normal for my son and for my family. There are so many websites dedicated to gluten-free shopping and cooking, and if any of you have favorites, please share! Like many of you, writing is a sort of therapy for me, but sharing personal topics like this is the reason I chose to blog what I write. Some conditions still carry with them a stigma. Unfortunately most autoimmune diseases, like Celiac disease, are on that list. I’m not exactly sure why, maybe it’s because people think they’re “lifestyle diseases” caused by poor diet and lack of exercise. The truth is, the research and research funds for autoimmune diseases are so minimal that very little is known about what causes them and what secondary diseases are caused by leaving them untreated. If you recognize any of the symptoms I mentioned, you can request a blood test from your doctor to check for Celiac disease.
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Thinkstock photo by demaerre