A Steaming Pile of Empathy: Ten Things You Should Know About Celiac Disease


Here we are again with another abortive attempt to submit something to Listverse.  Eh. What I should have realized is that they publish interesting trivia lists, not useful or practical information.  It’s their thing, and not really a match for the writing I enjoy doing or do well.  However, because this is a topic that’s very important to me, and should be important to many people, I figured I’d share it here.  I’m going to include the notes and links provided by my good friend who has Celiac, because–quite frankly–her humorous asides and useful links add so much to the piece.  Comments she has made will appear in parentheses, and links she suggested will be listed beneath each section.  Yes, this is an enormous entry, but if you take away even a moderately improved understanding of what Celiac is and the complications that go with it–I’ll be thrilled.


(killing me slowly – 10 things about celiac you may not be aware of) (lol – that’s still hilarious)

Today, there are a great many people who’ve adopted a gluten free lifestyle because they think it’s healthier for them. Diets like the Paleo diet and other similar programs exclude gluten and grains entirely. But for people who have Celiac Disease, going gluten free isn’t part of a fad. There are no “days off” from their routine. Because of the trend for non-Celiac individuals to forsake gluten, a number of replacement foods with designer price tags, alternative menus, and specialty food sections have cropped up.

(A GF diet is healthier, but only if the standard us diet is traded for a balanced, whole foods diet, not simply a repackaged GF version.)

(There are no days off or cheating. A GF diet is the permanent – and currently only actual treatment for the disorder.)

(The fad/trend has sparked a deal of new options. Some of which are great, some of which are lies. All of which are not inexpensive.)

(nifty little graphic with some interesting reactions – http://www.hartmansalt.com/in-the-spotlight/gluten-free-a-fad-or-a-trend/95 )

But, by and large, the social attitude towards those who cannot consume gluten is unsympathetic precisely because of the trend-seekers, many of whom cheat on their diets or suffer no ill effects if they mistakenly consume flours, breads, or grains. To help the average individual understand what it means to have Celiac, here’s a list of ten things people who suffer from this disease must live with that are all too often not discussed or shared in a meaningful way.

(Yes, it does matter if it was “just a little“. Your lack of empathy and understanding is slowly killing me.)


oh, the kindness and understanding expressed in some of these comments – http://www.huffingtonpost.com/2013/05/13/gluten-free-pet-peeves-what-not-to-say_n_3255122.html

gluten explanation – http://glutenfreenetwork.com/gluten-faqs/

food service doesn’t always get it either – http://glutendude.com/celiac/celiac-confessions-of-a-waitress/

Yes, celiac kills. 6 ways celiac can kill you – http://www.celiac.com/articles/23738/1/Six-Ways-Celiac-Disease-Can-Kill-You/Page1.html


It’s Not a Fad or a Social Trend

(No. This is my life. I have no choice in this. Unless, of course, I like actively dying in slow motion. All the time.)

Celiac Disease is an autoimmune disorder. This essentially means that your body hates you and turns its defense systems on itself. Such disorders should be differentiated from allergic reactions, because the impacts are cumulative, chronic, and, in some instances, they permanently alter all life processes. As well, unlike the social pressure to follow fad diets or mild non-celiac sensitivity—which may be all in your head or tied to another issue entirely—it can kill you indirectly or directly.

Because your immune system is busy attacking you, it doesn’t have time to deal with pathogens you encounter on a daily basis. This is a two-fold process. Not only are the antibodies in your system busy—and they just can’t even—but the cumulative damage to your digestive system makes it harder for you to absorb nutrients from food. Left unchecked, Celiac can actually completely inhibit the absorption or processing of nutrients and you’ll die from malnutrition if something else doesn’t get you first. Your barriers against communicable diseases, up to and including your epidermis, become weakened. That means you’ll be sick often and less apt to recover, even slowly, from something as simple as a common cold.


It’s gluten free, but not for celiac – http://jennifersway.org/celiac-needs-verses-gluten-free-fad/

blood tests – http://drrodneyford.com/faq/bloods-tests/gluten-blood-tests.html

autoimmune explanation – http://www.nlm.nih.gov/medlineplus/ency/article/000816.htm – and/or – http://www.niams.nih.gov/health_info/autoimmune/

celiac disease vs. gluten allergy explanation – http://celiacdisease.about.com/od/CeliacDiseaseTests/a/Five-Types-Of-Gluten-Allergy.htm

celiac list of symptoms – a lovely graphic from gluten dude – http://glutendude.com/wp-content/uploads/2013/04/celiac-disease-symptoms.jpg

damage of villi explanation – http://gluten.lovetoknow.com/How_Fast_Does_Gluten_Destroy_the_Villi

autoimmune disorder and communicable illness – http://debbiepetrina.authorsxpress.com/2012/11/13/serious-effects-of-getting-sick-for-msautoimmune-disease-patients/

symptoms of autoimmune disease – http://www.evenbetterhealth.com/autoimmune-disease-symptoms.php


It Makes Everything Worse. Everything.

(aka – Everything that’s wrong with you will be more awful.)

If there’s anything else wrong in the cosmos that is you, get ready for it to be worse. If you’re predisposed to migraines or have another autoimmune disorder, such as psoriasis or rheumatoid arthritis, Celiac makes these issues even more horrible and painful than they were to begin with. Because it doesn’t like to play alone, Celiac makes friends with things like Hashimoto’s Thyroiditis—a degenerative disorder of the thyroid gland—bone, blood, and digestive tract cancers, reproductive disorders, and degenerative disorders of your connective tissues, like skin and joints.

It’s a party, and medical scientists use the term comorbidity to describe the shindig. That essentially means that you have multiple, co-occurring disorders that are independent of one another. Until science can determine through solid evidence that there’s more than simply a positive correlative relationship between Celiac and other autoimmune disorders, we must simply acknowledge the fact that they often occur together, but are not necessarily dependent upon each other.


autoimmune inflammation – http://www.gluegrant.org/inflammation-autoimmune.htm


celiac co morbidity- http://www.medscape.com/viewarticle/547107_2

co morbid from the free medical dictionary – http://medical-dictionary.thefreedictionary.com/Comorbidities


understanding co morbidity – http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2713155/


Your Changed Relationship with All Foods Everywhere, Forever.

(Can you have that? Safer to assume you can’t, or you need to look it up. Don’t think so?..

(Does it come in a box? You probably can’t. A can? Again, probably no. Are you in a restaurant? Don‘t eat there. The Flying Biscuit? Thanks, but I like living. Are those some delicious cookies your friend has there? Don‘t even pretend like you could ever eat those. Recreational drug habit? Better ask about additives. Life‘s hard enough without gluten poisoning from some sad sack cutting the stash. Ask them to cut it with nutritional yeast instead. You need those vitamins. Oh, vitamins? Better look those up, too. Tea? Have you had it before? Is it a blend?)

(Lotion? Lipstick? Better check those, too, because no one wants to swell up like a balloon.)

“Is it safe?” You ask yourself this about almost everything. For people who have never had this experience—either personally or through someone close to them—it’s difficult to describe the scope of the shift in how you must now think about food. All the food, as well as consumables such as personal hygiene products and makeup, may contain gluten. Even your choice of spices and condiments becomes a battle. Why? Especially in the U.S., gluten is added to an astonishing array of products, sometimes for reasons that don’t make a great deal of sense. Not only will you become an expert label-reader, your continued survival will rely on developing extensive knowledge about the systems and legislation pertaining to food production.

That soy sauce contains gluten, so does that garlic powder, the ice cream or yogurt on sale, many domestically-produced Asian foods that are traditionally gluten free, and even some foods that are labeled as “gluten free.” No, you didn’t misread that last one. Thanks to the fad of “going gluten free,” products that have less than 20 parts per million of gluten in them can use that label. The problem is, while one serving of such foods may not harm you too much, it’s a cumulative thing, and in time it will. For people with Celiac, there can be no relaxation of standards, no breaking of the diet, because the result is painful and lingering, often presenting a cascading effect on every aspect of life—from time spent in the bathroom to how clothing fits, from energy levels to degrees of mental and physical acuity that are requisite for daily functions.





fda gluten rules at the federal register – https://www.federalregister.gov/articles/2013/08/05/2013-18813/food-labeling-gluten-free-labeling-of-foods


Don’t Be Poor. No, Really.

(Replacement food is expensive. And portions are smaller. Often, by quite a lot. Whole, unprocessed food isn’t always cheap. And you‘ll spend a lot more time preparing it. Is the GF replacement food good? You don’t really know. You will forget what the food you can no longer have tasted like to compare it to.)

It’s fast becoming a well-known fact that the most available and inexpensive food for those who earn less money is actually really awful. It’s highly processed, full of bizarre and unnecessary chemicals and dyes, and usually contains a lot of wheat, because it’s a cheap substrate and filler for mass-produced foodstuffs.   When you have Celiac, you can’t eat any of it. Well, you can, but you won’t digest it. (Well, you might, but it will be in a terrifying and awful way.) Over time, as your health degenerates and you cope with increasing pain, decreased energy, and an overall sensation of malaise, you may or may not be shocked to glance into the toilet and see the food you ate looking like it didn’t pass through your stomach and intestines at all. For example, packaged noodle “dinners” are pretty much pre-digested food, but at a certain point your body may simply refuse to process them beyond what work your teeth accomplish.

While it’s completely understandable that the loaves of bread made with millet, nut, and rice flours, or specialty nut crackers, cookies, and bars cost more to produce—and will necessarily be more expensive—foods that do not contain gluten are also more expensive. This may baffle you, since these foods can be things like yogurt, which doesn’t need gluten in the first place. It’s totally an additive for the purposes of making it “smooth and creamy,” a term you will come to be suspicious of after a while. The sad realization you will also come to is that the best, most beneficial, and least augmented food is often much more expensive. Even frozen vegetables that are not mostly corn kernels are priced more exorbitantly, to say nothing of meat or dairy products.

Why does my food that should not have wheat cost more because it doesn’t?! Is it really that expensive to remember not to add something?! Why does gluten free salt cost more?! “Gluten free sugar“, you don‘t say. Well, I would hope so!

(What makes this smooth and creamy anyway? Wtf, is this chemical chain of nonsensical bullshit for ingredients?)

(Nevermind that corn is not a vegetable. It is a grain. You may also realize you cannot eat corn.)

(You will buy 50 different bags of 50 different veggies to make your own blend because it’s cheaper that way.)

Lentils and dried beans are inexpensive at the store, but you’ll pay for them in terms of time and energy required to prepare them. Everything costs something in one way or another. In order to eat the way you need to for survival, a large portion of your monthly budget will be devoted to food—and you may also become a coupon and clearance section wizard, simply to feed yourself. Being unemployed or underemployed makes the very basic act of being alive that much more difficult, especially since so few people really comprehend that Celiac doesn’t care what your income level is. You still have to find a way to eat and it has nothing to do with fads or socially popular dietary patterns. It’s a matter of life and death.

“Hello, crockpot, my new friend. It’s time to cook with you again.”

(What’s a spiralizer? How do I use a food mill? Do I seriously have to purchase a new toaster? Help me.)






SAD – http://consumer.healthday.com/encyclopedia/weight-control-39/obesity-health-news-505/what-s-wrong-with-the-american-diet-644659.html

SAD – http://www.nutrientrich.com/1/hard-facts-about-the-standard-american-diet-and-disease.html

SAD – http://grist.org/industrial-agriculture/2011-04-05-american-diet-one-chart-lots-of-fats-sugars/

SAD makes reference to alterations in wheat and celiac – http://authoritynutrition.com/11-graphs-that-show-what-is-wrong-with-modern-diet/

nutritional value of food supply, over years, at USDA – http://www.cnpp.usda.gov/USfoodsupply

how your digestive system works – http://www.mayoclinic.org/digestive-system/sls-20076373

cross contamination – http://celiacdisease.about.com/od/PreventingCrossContamination/a/gluten-cross-contamination.htm




for a disorder like this, help isn‘t exactly helpful, and you will get absolutely no help without what they consider a proper diagnosis – http://www.disabilitysecrets.com/resources/social-security-disability-coverage/benefits-celiac-disease.htm




Your Social Interaction is Limited

(No, it’s not. I just don’t have any friends anymore. Or money. Or energy. Or grammar. What was I saying? Oh, yeah. It‘s limited. And you will find out who your friends really are.)

The silly lead-in about band camp becomes how you talk about the social life you no longer have. This is one of those aspects of Celiac that really depends on other factors, such as how much money you have, how supportive your friends and family choose to be, and where you live. Depression is a common side-effect of several auto-immune disorders, in part because your natural balance of neurotransmitters and hormones gets out of whack somewhere along the line. This can make being positive in a social setting difficult at times, and encourages you to decline social invitations when you’re feeling especially down.

(AKA – “no, I have terrible gas”, “no, you‘ll just be mad I can‘t eat there“. “no, I‘m broke“, “no, I forgot what was happening ‘cause brain fog”, “no, I‘m too tired.”, “no, everything there is covered in flour“, “I appreciate you made food, but, no, I can’t have it. It’s a medical condition, stop being mad”, “no, I can’t eat there”, “no, I am spending today lying on the rug like a carrot”, “no, it’s too cold”, “no, I can‘t have ‘just a beer‘”, “I‘m sorry my health problems are inconvenient for you“, “no, I don’t have any clothes that fit and I’m exhausted from figuring that out”, “no, I already gave up today, try tomorrow“, “just… fuck it, no“. You’ll need to learn to explain the difference between want and need, and can and can’t, very well.)

As well, depending on where you live and the extent of your support network, going out to eat becomes tedious. Get ready to be “that customer.” You know the one, who asks eight dozen questions and has a lot of reservations and requests for standard menu items. Many people won’t grasp the magnitude of how easy it is to become contaminated with gluten, or the painful and embarrassing side effects. Flour is used in a great many sauces and preparation methods. As well, if you are particularly sensitive, foods prepared in the presence of wafting flour can even be unsafe to eat. Over time, people who don’t really get it will stop asking you to hang out—because you can never eat what they eat, and that’s a major downer for them.

(“Do you give diabetics a hard time for not being able to eat the cheesecake?”)

(“Are you mad that your friend is allergic to peanuts?”)







that girl – http://youtu.be/Y4G5Qw8S90M



I Shit You Not.

Going to the bathroom will become a central preoccupation. Anywhere you go when you leave your house must have restrooms, and you must know their location at all times. In terms of undiagnosed or uncontrolled Celiac, the degenerative impacts on your intestinal fortitude can reach catastrophic levels. Your intestines ulcerate and eventually come to resemble a leaky sieve rather than a hose. You first develop ulcers or wounds that bleed, followed by polyps—or extraneous growths. As the disease continues to degrade your intestinal wall, these ulcersted, vulnerable areas permit the passage of bacteria, food particles, and fecal matter into your bloodstream. As if that weren’t scary enough, untreated, the condition leads to the development of holes in your intestines that will require surgical removal—if they don’t kill you first.

Even once Celiac disease is treated through diet and vitamin regimens, flair ups still occur. These can be in response to unusually stressful situations or inadvertent contamination with gluten. Those who experience acute symptoms due to irreversible damage or predisposition and factors related to comorbid diseases can be contaminated with frightening ease. This means unpleasant and socially unacceptable bathroom time, with painful and graphic consequences. While many people in Western cultures experience reticence to use public bathrooms for such personal needs, you will no longer have this option. You will use whatever bathroom is available, or you will soil yourself—publicly and in horrendous volume.



intestinal permeability/leaky gut – http://www.webmd.com/digestive-disorders/features/leaky-gut-syndrome








Limited Energy is a Big Issue

(I’m so tired. All the time. I am tired.)

This is perhaps one of the most difficult things for people without Celiac or similar autoimmune disorders to grasp. You have a limited amount of energy, and when it’s gone, it’s gone. Celiac disease causes many affected individuals to experience a constant state of adrenal fatigue if the disease is not managed properly in time. Adrenal fatigue is exactly what it sounds like—your body ceases to be able to create useable energy, and supplements it by dumping increasing amounts of adrenalin into your system. Eventually, adrenal glands wear themselves out and can’t keep up with demand. That means having to plan your day’s activities very carefully, based on how tired you are when you wake up.

(I think the path is – Fatigue, exhaustion, insufficiency, failure.)

(This effect can make you swell like a mofo, btw. Which has a tendency to make you hurt all over like you have a bad flu, or fibromyalgia. Also, it contributes to that unhealthy midsection weight gain.)

How can you be tired when you wake up? This could be because you experience advanced adrenal fatigue, but it can also be a product of pushing yourself too hard in previous days. Those with Celiac often try to keep up with normal life routines that demand more energy than they have to give. In the end, you could have to make the hard choice between having a shower or feeding yourself. That’s even before you consider trying to have and keep a normal job, with myriad demands on your energy. You’re expected to keep up, and employers are often unsympathetic to your condition. This is an excellent explanation of this phenomenon, http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

(Is there any protection for celiac re employer? Not really.)



















trend.fad issues – http://jezebel.com/5991724/will-everyone-please-eat-gluten–please-because-you-are-literally-killing-me-kind-of

trend fad issues – http://jennifersway.org/gluten-free-or-sad-way-to-make-extra-cash/



You Guard Your Sugar Like a Heroin Addict

(Back up off my 3 musketeers!)

Simple sugars are one of the last nutrients your body is capable of absorbing in a system damaged by Celiac disease. In fact, it may be a large portion of your diet if you are undiagnosed and unaware that you have Celiac. But it’s more than that, and the long-term implications may be more serious than you understand. Because many of the gluten-free replacement foods—cakes, cookies, breads, cereals, and crackers—are made of flours derived from starchy plants, like rice or tapioca, they impact your blood glucose more heavily than traditional foods might in a healthy system. That means that gluten free junk food is still bad for you—it just doesn’t make your intestines bleed or your entire body swell with edema.

(edema, or, Why don’t my pants fit for no reason? Why is only this part of my shirt too tight?)

Another aspect that many individuals who manage their Celiac will tell you—you will periodically fiend for sugary foods. When we say “fiend” we mean that intense, uncontrollable urge to consume an entire bag of fun-sized three musketeers bars in a single sitting. (What causes this?) In the long run, Celiac—both in the undiagnosed and managed stages—set you up for Type II Diabetes later in life, simply by virtue that your pancreas can only handle so much, and over time the beta cells within it die. So, you have that to look forward to, as well.

(We mean fiend. Like a thief in the night, you will eat every fucking Lara bar in the house. You will eat all of the snickers. You will wake up in an ocean of wrappers and shame.)

(I may cut you if you steal my Milky Way Midnight.)



digesting sugars – http://healthyeating.sfgate.com/sugars-digested-7158.html





















Gluten-Free Foods Are So Pretty

(So pretty. Just look at it. It calls to you in the night. Like glistening magic foodstuffs. “Eat me!”)

Unless you have a yen for playing Dr. Frankenstein in the kitchen and baking your own breads, cakes, crackers, and such, you will likely purchase those expensive replacement foods from time to time. In the case of gluten-free baking, making it yourself isn’t really less expensive. That pan of brownies needs six eggs and a stick and a half of butter, because you used coconut flour. So, with the thought in mind that even a loaf of bread is going to run you at least five dollars, the makers of this food make it extraordinarily pretty.

(Make bread for 5 dollars, or buy bread for 5 dollars? Hmm…)

(Mistakes are costly. GF flour averages around 8 bucks a pound. And most of it will have to be used in a timely fashion or frozen. GF websites where people have already experimented and succeeded will be your new friends.)

It’s almost like they’re trying to make up for the fact that you haven’t had a cupcake in so long, you forgot how special they aren’t. Those cakes and other products are beautifully wrapped, the sweets are frosted and attractively presented, and the pasta is boxed to look like all the other pastas—just with a hefty price hike. You will be so tempted to fork out your hard-earned money every time you come across something new, something not-same, something that looks like normal food. Just remember that these replacement foods aren’t actually better for you, they’re just not as detrimental to your health in the same way that grain-based products are. You’ll still pay for overindulgence.

(Cupcakes are not your friend. Not even GF ones. You don’t remember what they’re supposed to taste like anyway.)

(Eating too much of anything is bad for everyone. Yes, this still applies to you.)


The Act of Getting Dressed or Planning an Activity is Rocket Science

(Not really. Well, maybe. Yes, sometimes. It definitely might as well be as far as everyone else is concerned anyway. People who don‘t have certain kinds of health problems have no idea how easy their lives are on this. Lucky bastards.)

Remember that thing about how your energy is limited? Well, it’s about to get more complicated. Many people take for granted the ease of getting dressed in the morning. You select your clothes and put them on your body, right? Yes, but you now have additional considerations with which to contend. Are you feeling bloated? Do you think you might swell in any or all parts of your anatomy during the day? Do you feel cold or hot? Will you be going anywhere where you might experience sudden changes in body temperature? How much pain are you in today?

(Part of this goes to thing where you can be contaminated at any time, and that changes things. Part is energy, which changes things, too. It becomes a little scary to commit to doing things in advance, and we develop a fear of it, because we never know what’s going to happen by the time that date shows. “You want to do what on Thursday?“ The first thing you think of is all the things that can likely happen to keep you from going if you say “yes”. Add to that some unpredictable weather, or any issues we could already be having, and you end up mainlining a pot of coffee to get going in the morning. This is actually bad for you, but you really have to get up today.)

(“Oh. My. Gawd. Whyyyyy?! why is this happening? This fit like 20 minutes ago. I don’t understand.” Always pack extra clothes if what you‘re doing might render you unable to leave, or is a situation in which you may be glutened.)

You might have to ask yourself these questions on a daily basis. Then there’s the trying on of clothes. Many sufferers of Celiac experience swelling in portions of their limbs or torso. That dress shirt that fit yesterday now cuts off the circulation in your upper arms and won’t button across your stomach. You might swell during the day making a shirt that fit in the morning akin to a medieval torture device by two o’clock. And let’s not even talk about shoes, because your feet and hands will tend to swell more easily and to a greater extent than any other part of your body.

(I can’t breathe! My clothes are killing me! Help! I can‘t feel my feet! All I feel is coldness and pain!)

(All of my shoes are two sizes too big. And all of my pants are tight around the ankle somehow.)

(Just cut the gloves off. Unless they’re really special. You don’t need them. You can’t feel your hands anyway.)



other interesting links or info i missed –






2 thoughts on “A Steaming Pile of Empathy: Ten Things You Should Know About Celiac Disease

  1. Great overview. I was recently diagnosed with Celiac’s and am now having a biopsy done on my thyroid. My head is spinning as all these issues come out of the woodwork and I’m still trying to figure out what I can eat/put on my body since gluten is everywhere. People not understanding or accusing me of exaggeration is really the icing on the cake; I am sick. I can already see how this will impact my social life.


    1. Hey, thank you for your comment! I know that there will be dark moments for you, even if your surrounded by positive and caring support–serotonin is manufactured both in the brain and the intestines, so when one suffers, there are bound to be low days.

      While I don’t suffer from celiac, I have several friends and family members who do, and I have had enough of others treating them with disdain or their condition as psychosomatic. Support for y’all is a critical part of ensuring a healthy, positive life, and an end toward which I am dedicated.

      Various groups and organizations have been a valuable resource for my friend–the one who provided the commentary and links. While I don’t have them handy, if you want a bit of direction, I can always ask her which ones are best and post some links here.

      Best of luck in your journey towards good health! I’ll probably periodically post other celiac stuff, though it’s not the primary focus here. 🙂

      Liked by 1 person

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