when getting healthy means knowing you’re sick

I have celiac disease (note, it’s not Celiac disease or celiac’s disease — it’s not named after a person named Celiac), which is both a big pain in the ass and not a big deal. While it increases my risk of all sorts of illnesses (like epilepsy and various sorts of cancers), it probably won’t kill me. And, as long as I don’t eat anything that contains gluten or has come into contact with it, I feel fine. Living in New York City and in an increasingly gluten-aware society means this not eating gluten thing is pretty easy: I know where to get gluten-free cupcakes (I’ve at least three choices here), gluten-free pizza (six choices not including frozen) and most everything else I could want. Even many of the goodies at my local Costco are labeled gluten-free.

The problem is, that right now, I’m pretty sure I’m eating something that isn’t, because I feel like crap in a very particular way. This is frustrating, not just because I feel like crap, and not just because I’ve been known to yell at other celiacs for thinking every stomach upset they experience is about gluten (maybe you shouldn’t have eaten an entire batch of brownies made with bean flour (I’ve done this; and no matter how good they taste, it’s a bad intestinal choice); or maybe you have a stomach bug; or some other as yet to be diagnosed intolerance — making me a big giant hypocrite as I attempt to figure out where the secret gluten that must be responsible for my current suffering lives), but because I did a big grocery run the other day, and everything I bought was explicitly gluten-free.

Unfortunately, this is no guarantee. There’s been lots of scandals with stuff being labeled gluten-free that wasn’t, either because of poor production practices or outright lies. I’ve had to swear off gluten-free dinosaur-shaped chicken nuggets for this reason (trivial to you, but devastating to me); and it’s made me double and triple-check packages when stuff has a better texture than I expect, but even labeling is no guarantee.

But gluten-paranoia is sure a lot more pleasant than the possibility that I have some weird unrelated sensitivity to the sun-dried tomatoes in the gluten-free turkey meatballs I bought the other day; the coloring in some gluten-free not-entirely-natural fruit snacks; or the sunflower oil the awesome chips-made-out-of-popcorn are prepared in (and to be frank, I’ve had my suspicions about sunflower oil and me for a while).

Celiac disease doesn’t suck because of the restrictions; the symptoms when you or someone else screws up; or even its ugly metaphorical griefs (I cannot break bread with you). It sucks because of the paranoia — of what other diseases it might give me, and of food, good intentions, and honest labeling. It’s completely exhausting in the way it has forced me to view the world as suspect. Sometimes it seems like everyone, and everything is made of poison; I can’t kiss my girlfriend after she eats a cupcake; I can’t just grab her shampoo in the shower because what it contains oatmeal (gluten-contact issues and issues involving oats vary from celiac to celiac, but that’s a long footnote I don’t feel like explaining right now).

Celiac disease is also completely exhausting in the way it has caused other people to view me as suspect. I am not, for example, a picky eater because I have to know what’s in my food. Nor do I, despite not being Catholic, have much tolerance for the way celiac disease designates the state of my soul as in dire need of scrutiny because of my inability to take some hypothetical-to-me communion. I am also not trying to get attention (a desire for which I, quite obviously, have other courses of action). Nor am I on a diet (as I have to keep explaining to waitstaff when I order a hamburger without the bun and they don’t bring me the fries either!). Nor do I have an eating disorder (thanks, medical professionals who have interpreted symptoms of my disease as such). Nor I am I rejecting your hospitality. Nor am I making crap up to make your day hard.

Believe me, if I wanted to make your day hard, I have many more exciting ways of doing it than not eating bread — which, by the way, I still dream about in detailed nightmares that involve my either being forced to poison myself or my forgetting that I am.

Celiac disease is a big hassle and serious business. With attention to detail and respect from others, it’s also easy to manage. I don’t consider it a disability, except on the days that I have to, because something’s gone wrong and I can’t do what seems like normal life stuff to most other people (get out of bed, not be in pain, think straight, not have weird phantom tingling on my skin, or cope with typical external stimuli like street noise, bright lights, etc.).

There’s nothing I did to make this happen to me. And there’s nothing about it that makes me lucky other than it’s thankfully not something with more serious consequences or something that’s even harder to manage than it already is.

I have no problem with people consuming gluten around me (although keep your crumbs out of my butter or I get fiesty in the bad way), and your apologies are not necessary. All I ask is that you have tolerance when I sometimes, like now, lose my patience with this thing and have to complain or can’t keep my eyes focused on you in a conversation or forget words or can’t leave the house or can’t make myself look attractive because my nutritional uptake is abnormal again. Some days I have no right to the spoon metaphor; sometimes “spoon metaphor” is all I can say to explain to you how bad it is.

Celiac disease is the explanation for decades of emotional and physical misery I experienced without more concern than “she’s just like that.” I’m still just like that. There’s nothing I can do about it, and there’s nothing you can do about it. But if I can have a sense of humor, or at least ambivalence, about my condition eight days out of ten, all I can ask is you do the same.

Patty, who is awesome about this (it’s hard to move in with someone with celiac disease when you are as made of pasta as she is), often has to remind me to eat, because I’m one of those people who gets distracted and hyperfocused and forgets to eat when I’m deep in project mode. But sometimes the simple truth is I just don’t want to deal with dinner being a detective novel.

What can you do to be nice to celiacs or at least me? Know what’s in the food you serve. Ask if a menu or type of cuisine is okay before choosing a restaurant. Never assume our food choices are about our weight or that our weight is about any sort of choice at all (celiacs come in all sizes; but most of us, regardless of size, are at a weight impacted by our experience of the disease); don’t get annoyed when we can’t have something you want to give us — we’re always more annoyed than you! And for heaven’s sake, if you don’t want to hear about bodily functions and internal bleeding, don’t ask us about the primary symptoms.

Celiac disease is kind of a weird experience in that there is no cure. For people like me, getting healthy means just finding out that you’re sick. Just because that’s a blessing most days, doesn’t mean we always know how to be happy about it.

31 thoughts on “when getting healthy means knowing you’re sick”

  1. I am not intolerant to gluten (and I’m so glad, considering my existing list of food allergies and sensitivities) but I run into a lot of the “omg you’re so picky” and “why won’t you just eat it” and (my personal favourite) restaurant or coffeeshop employees who are made angry when I question them about exactly what they’ve put in my food. I’m not attacking them personally, and I wish they’d stop getting defensive about it.

    I had a very frustrating conversation with a barista at Starbux this summer after they did a stealth change on the frappucinos (used to be made with a processed–and thus cooked–dairy base, now made with uncooked fluid cow’s milk) when he assured me that the drink I was not taking because I’d happened to see them pour milk in it was just the way it had always been. I assured him right back that I knew perfectly well the frappucinos hadn’t had uncooked fluid cow’s milk in them, because I used to drink them. After he finally admitted that the stealth change had taken place just the week before, he insisted that it was better for me because it wasn’t “processed” and was pretty irritated with me when I told him that due to the mechanism of my milk allergy, processed dairy is groovy but uncooked cow’s milk is a trip to the emergency room before my throat swells shut entirely and I suffocate on my own fluid-engorged mucus membranes.

    We won’t even get into how irked I am by people who claim to be allergic to things they just don’t like.

    Dammit, this is why we can’t have nice things!

    I hope that you are able to figure out what is stealth-glutening you so you can start feeling better. The all-over feeling-bad sounds like my reaction to chicken, and I really sympathize.

    1. dude. there are picky eaters, and then there are people with food restrictions. there is a big old difference, that being, picky eaters are unlikely to die (or wish they had) if you slip them some soy/gluten/shellfish/bananas/strawberries/whatever. (although it *is* impolite.)

      1. Ayup. And it’s not just impolite. Non-medical stuff can be just as serious business.

        When I was in Switzerland with some colleagues who are Muslim, I watched them having to contend with waitstaff who would deliberately lie to them about whether a food product was pork or beef. (Switzerland has major, major anti-Islamic bias going on, even more so than the US and other parts of Europe).

    2. You may wish to scroll down for another Starbucks problem someone else encountered. I’ve also had issues there (if I’ve accidentally been exposed to gluten, it becomes very difficult for me to digest dairy for about a week, and so I often need to make dairy inquiries and requests and have had some problems there over the years myself).

      I don’t care personally if people say it’s an allergy when it’s not, as long as they then don’t eat that thing in front of whomever they made the request to, because then it weakens my ability to have my requests taken seriously. I have a family acquaintance recently tell me she had celiac disease too, and then scraped off what she could of the wheat-based topping on an apple pie and eat it in front of me and wait staff. That’s all well and good for her, but it puts me at risk by making my request hold less weight.

      1. I am mostly pretty happy with the friendliness of most of the Starbucks’ employees I’ve dealt with (impatient boy above being a definite departure from the norm), but the transparency of their packaging is not the greatest sometimes. However, they are REALLY careful about putting the types of coffee whitener in the proper jugs, which I appreciate. (I was stealth-skim-milked at a campus coffee shop last year and if the Benadryl hadn’t kicked in I would have had to go to the hospital, so that was unpleasant.)

        The allergy-as-pretext thing bothers me mostly because of the risk to me by association, as you say. Many of my allergies are at best inconvenient (rashes, digestive sequellae, just feeling lousy until it’s out of my system), but my migraines have been getting worse (I now have aphasia and parasthesia with migraines, in case the headache and photosensitivity weren’t fun enough), and anaphylaxis is just never fun. Bah.

        And now I have braces. Sigh. Eating is getting harder and harder.

  2. ‘But sometimes the simple truth is, I just don’t want to deal with dinner being a detective novel.’

    Thank you! People don’t understand that when I say I sometimes have nervous breakdowns in the grocery store, I mean it bluntly and honestly. Having to read every single label, having to avoid entire aisles, and knowing that it still might not be enough is extraordinarily stressful. (I can not have corn in any form, and am currently cutting out all wheat as well.) People don’t believe me when I tell them that companies don’t have to change labels immediately because of the financial strain of throwing out preprinted stuff.

    A waitress once asked me why I didn’t just stay at home to eat. Which was really awkward on her part, considering I was visiting family from out of town. But never try to explain that no matter what I do, at home isn’t a guaranty of safety either; I know people won’t understand.

    1. People have also asked me why I don’t just say home, and it enrages me. I enjoyed fine dining before I was diagnosed with this disease and I have been able to continue to do so with little risk because I’m assertive and resourceful and lucky. But that question will get me near tears every time. It will also get the waitperson, “Because I do not always have the time or energy to cook, and like people with healthy immune systems I have the right to go out in public, socialize with my friends and patronize businesses. In the future, yours won’t be among them.”

      I’m sorry you’ve had to deal with this.

      1. If you don’t mind, I am going to save that response and work on memorizing it. Usually my husband has to respond for me because I’m sitting there stunned. I very, very rarely go out to eat*. So each time it happens it’s like a new blow. Now if only I could come up with a response to my Uncle, who’s convinced I’m faking it and now has my Grandmother convinced that it just gives me headaches…

        *Because, as corn isn’t in the top 10 allergens, restaurants don’t know if their food has it. And my ‘safety’ of steamed broccoli and chicken is no longer safe, as restaurants are now using a preservative with corn starch in it.

        1. Absolutely feel free, although I hope you won’t need to use it.

          I feel bad for you, because you’re right, they are using more corn-based preservatives — I’ve noticed, because I’m running into less wheat-based ones!

          1. Well, to try and think positively about it, at least it’s helping out someone!
            I didn’t realize they were replacing wheat preservatives (although I know some of the food that are now issues never had preservative before). I thought it was from the corn companies freaking out because of the high fructose corn syrup backlash; all sorts of new and weird corn products are showing up where there used to be none, like corn solids and corn grits. *sigh*

  3. “weird phantom tingling on my skin”
    Brief moment of solidarity for how HORRIBLE this is, and I hope it’s not one of those symptoms that frequently troubles you. I’ve had incidents where I had to sit naked in a very cold shower for an hour because everything had TOO MUCH TEXTURE. Eurgh, nerves.

    “Celiac disease is kind of a weird experience in that there is no cure. For people like me, getting healthy means just finding out that you’re sick. ”
    That is ALL of my disabilities. And they are hard to explain to people – no less that living with them seems to bother (on a meta level) those without exposure to chronic health issues way more than it bothers me.

    1. My tingly spots mostly went away with diagnosis and going gluten-free (there’s a patch on my torso that had felt like it had had pins and needles for YEARS prior that still flares sometimes and a nerve in my neck that will still randomly shoot pain sometimes, but they are much less than they used to be), but exposure to gluten can make it flare up.

      TOO MUCH TEXTURE — I totally understand.

      And oh yeah the “HOW DO YOU DO THAT?” stuff. Like, I get it as a curiosity and an expression of sympathy, but I do it because what am I going to do instead? Stop?

    2. I am actually DELIGHTED by the possibility that I might have celiac disease. I can’t stop eating gluten until they’re done testing me but I’ve already discovered that if I eat gluten free for a day or two I can cut my Ritalin dose IN HALF the next day and that some of the worrisome mental symptoms I’ve had in recent years are likely to go completely away.

      I’ve given up on the Fantasy of Being Cured but holy crap, if I can stop eating gluten entirely and feel as much better as the occasional gluten free day makes me feel now, that’s good enough for me.

  4. The image of the nightmare in which you are forced to poison yourself is so horrible, and makes me think about your experiences in an entirely new way.

    1. I really do win with the symbolic shit don’t I? My heart does not work like other people’s and I cannot break bread with you.

  5. My biggest annoyance with my dairy allergy is having to ask questions at restaurants and grill waitstaff about ingrediants they’ve never thought about. Also, group potlucks, between Alice’s recently celiac, several people we don’t know well consider us as total freaks and the food they fix for us is generally also completely devoid of spices. Thankfully, people who know us well at least know how to make food for us.

    1. You would be amazed how often people interpret my very detailed explanations of what I can and can’t eat as things like “no rice” or “no dairy” or “no sauce or seasoning of any kind.” “No meat” also happens a lot. It can be very frustrating. Especially when those things happen INSTEAD OF (as opposed to IN ADDITION TO) what I actually need.

      1. Someone at my old job freaked out when they saw me eating meat. I could not figure out why because I have always been pretty blatant about being pro-meat, and so I asked them why.

        “Because you’re always so adamant that at any catered event you help plan, there must be some vegetarian food.”

        I kind of facepalmed. I mean I’m in CALIFORNIA. If there is any place on earth where making sure the vegetarians have something to eat is only simple, basic politeness, you would think it would be here.

      2. Oh yes. My “No dairy” often gets responded to by, “so you mean vegan?” Um, no. I can eat cow flesh (and other meat – I LOVE meat!). I cannot consume cow’s milk (I never bother getting nto the fact that hard and cheddar-like Goat’s cheese is safe for me when eating out – it is safer just to have NO cheese – but I can eat buffalo mozzarella so eating a plain pizza is safe – way to confuse the wait staff, doctors and myself!). The other one, due to the location of eggs and milk in the same isle in supermarkets over here in the past (often marked “Dairy and Eggs”), is that I cannot have eggs either. My reply is usually something along the lines of, “Well, I have never seen a cow lay an egg!” ;-p

  6. I don’t actually have food allergies, but I have been taken aback by the reaction I’ve gotten when inquiring about the contents of food — this was in a Starbucks, which was selling sandwiches. I couldn’t see if there was mustard in them and wanted to know — but the moment I asked about it (they had no labels, which I pointed out in the course of asking) OH BOY did the barista explode at me. They were so rude I wrote to the university at which the starbucks was located and ultimately got several apologies plus a couple free drinks. But dude, all I did was ask what was in the damn sandwiches and that only because there was no label (which BTW, definitely legally required in the good ol’ state of CA)… I can only imagine how this plays out when it’s every day and far more detailed than “what meat is that?”…

    I’m *still* boggled by that barista’s reaction…

    1. I’m sorry that happened to you.

      I, as you might imagine, have stories and stories. My two big winners are the restaurant in London where I was told that what was clearly a bread stuffing in a dish I has asked about before ordering was cheese and I just didn’t know what proper Italian food looked like (“I’m Sicilian,” has never been so pleasurable a comb back) and an incident at a Cold Stone creamery, wherein I asked them to mix in the bowl instead of on the shared surface because I had allergies (the easiest way to explain usually) and the guy refused. When I expressed my incredulity he said that he wouldn’t serve people like me and that that people like me should not be allowed to eat outside the home. I got a lot of free Cold Stone coupons for that.

    2. I would have wanted to know if a sandwich had mustard in it too. I don’t have any food allergies, but I don’t care for most condiments, as most are vinegar-based.

      I once went to a Panera Bread Co. and asked for a turkey sandwich with no condiments. They took that to mean I didn’t want vegetables. *facepalm*

  7. *sympathy*

    I have a friend who is diabetic, and has severe (of the anaphylactic-shock–causing sort) allergies to many things, including soy, legumes, tree nuts, shellfish, and I honestly-can’t-remember what else. Before she moved out of the area, if I was cooking or baking *anything* for her, I’d call her with a list of potential ingredients. But soy is in *everything*, including what was supposed to be pure safflower oil (I ended up melting butter for the shortening in *that* applesauce/raising cake*), and in Trader Joe’s brand of mango/black teabags. (WTF? soy in *tea*?)

    My only real food-based problem is aspartame, which has me at level-10 migraine in 15 minutes of the first bite or sip. That’s also hidden in a lot of things, but far fewer than gluten, and there’s not much of a cross-contamination factor.

    So, just *sympathy* from another fanatic label-reader.

    1. So is in EVERYTHING. I have friends who are allergic to it, and it’s a huge hassle. I try to avoid it myself for other health reasons, but it’s near impossible to do so.

      I can’t do artificial sweeteners either. I don’t know what’s happening with me and them, but they make me spike somewhat alarming fevers after consuming them, so I just avoid.

      1. I’m annoyed with people who insist that all artificial sweeteners are the same. (This is not a response to the fact that they all, every single one, affect you badly. Oh no. Just wait for it.)

        I am not one of those people who cannot have aspartame because it contains phenylalanine and will hurt them; but those people exist. I just really don’t care for it, and find that it does contribute to my arthritis if I overdo.

        Sucralose on the other hand is something that I actually really like. Enough to put it on strawberries if they’re not organic or in season and don’t taste quite right by preference over sugar.

        And saccharin is awful and bitter.

        I can’t tolerate HFCS and too much sugar affects my mental status badly due to ADHD, although it’s looking more and more like the actual problem is gluten and I’m either gluten intolerant or adult-onset silent celiac. So this is an issue for me every now and again. They’re not all the same. And waitstaff who insist that they are confuse and annoy me.

  8. I don’t consider it a disability, except on the days that I have to

    Yes. I feel this way about a number of my health issues too.

  9. We had someone come into the restaurant during October last year, and ordered a chicken breast with *nothing* on it. They just wanted it grilled in butter. easy enough, right?
    Stupid dumb-ass Amish girl decides “that is just to plain for me” (?!) and slaps MSG based seasoning on it, and ladles the soy-based fake butter on it. As it was going out, I saw what she did. I am just the prep girl. I RAN out to the dining room, saw where they were sitting. Attempting to be calm and cool, I went up to them, and just as she was starting to cut it and sniff it, I told her what happened. She was furious, *I* was furious (and scared – what if she had gotten ill?) the Amish girl? Totally clueless, and the chef? told her not to do that again. Then, they ALL get pissed off when the lady asked if I could make her food. So, I did. She loved it, left happy. *I* got chewed out. Told them to go fuck off.
    Why, when someone asks for something special, do you always seem to get someone else who thinks it’s *their* right to change it. This is the same dumb cow who thought my plain iced tea needed sweetener, but knew I did not care for sugar in much. So laced it with aspartame. Yeah, she knew I was “allergic”. She doesn’t believe in allergies.I figured it out when I spilled some on my hand and it tarted to burn.
    They let her keep working! Luckily, she was only temp, and come November was out of there. But still, I’d have reprimanded her on the spot. *sigh* more I work with the public, the more I despair of humanity.

    1. Thanks for this because of how it highlights just how hard it can be for both those with food restrictions and those trying to serve them.

      I aggressively do not want to be a language cop in this journal for all sorts of reasons, but I do want to note that I am somewhat uncomfortable with some of the phrasing here. When I screw stuff up and don’t use the intelligence I’ve been given, I know I would feel off-put and threatened if I was described as that “stupid queer chick” as if this thing where I’m queer is what’s made me perform not up to my presumed capacity.

      That said, there is perhaps an interesting discussion somewhere to be had on navigating food concerns like mine through various cultural lenses. It has certainly always fascinated me that Italy, with such a heavily wheat-based diet, is much easier for me to navigate my celiac disease in than the US.

    1. I suspect that there will be some variation among celiacs in how well this is tolerated. Some people with celiac disease or other forms of gluten intolerance are fine as long as they don’t actually eat any gluten; some people have to be careful about kissing or touching other people who have recently eaten gluten; some people have to watch what’s in their shampoo. Some people can eat oats and other people can’t. If this study is reproducible, it will be a good thing for a lot of people, but it won’t mean that every celiac on earth can suddenly eat wheat again.

  10. Oh for a small, quick test for gluten (or, in my case, lactose) a bit like the test for blood in CSI. Mush a small amount of the food in question on a saucer and drip one drop of ChemicalX onto it and, if it turns purple/green/other then there is gluten (lactose) in the food. Wait. I bet this is possible. *looks up the biochemistry, buys a patent and markets a product* Oh, wait again. ENOSPOONS. *splat*

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