National Celiac Awareness Day

So yesterday was National Celiac Awareness Day, and I barely noticed and forgot to make a post. I have celiac disease, and it probably impacts me more than any other fact about me; it affects how I look, how I think, what I eat, and what I can do. Every day I make dozens of choices that are impacted by this illness.

But the reason I want to tell you about celiac disease is that there’s a really good chance someone who reads this has the disease and doesn’t even know it yet. General estimates put the frequency of celiac disease at about 1 in 133 people in US, and if you have it, it means you can’t eat a anything containing gluten or, more generally, anything that has come into contact with wheat, rye, barley, spelt, and in some cases, oats. Many people with the disease also have trouble digesting dairy.

What happens if you have celiac disease and eat those things? Well, it depends. Basically, though, eating gluten will trigger a process whereby your body tries to digest itself. It’s pretty gross.

Celiac has lots of symptoms, both long and short term. For me it means severe intestinal distress, internal bleeding, neurological problems (including numb patches on my skin and aphasia). Mid-term consequences for me have included mental health issues (depression, problem with anger control, panic attacks). Long-term, because I was not diagnosed with the disease until I was in my 30s (and we’ll talk about that in a moment), it’s meant irreversible damage to my teeth, skin and nails.

It’s also meant I have spent a lifetime underweight being told that I was surely anorexic or bulemic. I have been bullied by peers, authority figures and even doctors to “admit” I had an eating disorder and to “confess” that I liked it. Of course, I did have a disease, but no one ever wanted to bother to find out what it was; I was just another screwed up girl, and, really, who cares about that?

You should also know that celiac disease also significantly increases the risk of many forms of cancer, epilepsy (something that impacts several celiacs I know), and infertility.

Getting diagnosed with celiac disease is a bit challenging. It mimics a lot of other illnesses, including IBS and gallbladder problems. Until relatively recently in the US it was considered a “rare childhood illness” and was viewed as temporary and unlikely. Neither of these things are true. It’s a life-long genetic condition, and in many countries in Europe blood testing for the disease markers is a routine part of preventive care before any child starts primary school.

I was only diagnosed with celiac because after my doctor said “maybe it’s cancer” and “let’s take out your gallbladder and see what happens” after months of being too ill to eat (and being told to just eat crackers — so helpful!) and losing weight I didn’t have to lose, I freaked out and started Googling. I quickly discovered a list of symptoms (I had 19 out of 20) and a list of diseases that celiac is often mistaken for (I’d been diagnosed with or considered for diagnosis with 17 out of 20).

When I eliminated gluten from my diet, 48 hours later I felt healthier than I ever had in my life. At 33. I’d been sick for 33 years and no one had figured it out, or even accepted I was ill. I was too skinny because I was a picky eater; I spent too long in the bathroom because I was trying to avoid my family; my hair and skin were like that because I was dirty; my teeth… well, that was just because I was a ugly; and I was angry because I just wasn’t a good girl.

It was very strange to be 33 and suddenly feel good when I didn’t know I hadn’t really for all those years before. It was very strange to be 33 and finally feel like I could be attractive. And it was very strange to realize I wasn’t the bad, “crazy” ex-girlfriend, but someone who had been struggling with a lot of neurological issues that removing gluten from my diet abated, giving me the room to unlearn the terrible habits I had in response to them.

Being gluten-free means I feel good and can have the life I want. But it also means my groceries cost a lot more than yours as alternatives to gluten-based products (like bread made from rice, potato or corn flour) can be very expensive.

It means shopping takes longer (I have to read labels on everything, every time in case there’s a reformulation).

It means some cuisines are harder than others (soy sauce commonly contains wheat and so Asian cuisines can be tricky, although wheat-free soy sauce is easily available in many supermarkets).

It means when I go to restaurants I have to be outspoken and friendly about my needs, and trust someone in the kitchen won’t roll their eyes at the “picky eater” and allow my food to be unsafe.

It means learning explain my medical condition in languages I don’t speak when I travel abroad and researching food safety laws whenever I go to foreign destinations.

It means having to decline food and drink at many social occasions to a degree that can be awkward (think unexpected business luncheons and conference dinners where the only thing you can safely eat is lettuce leaves without dressing; people ask about that, and whatever you tell them will probably make them uncomfortable.).

It means not being able to kiss my girlfriend after she eats something glutinous until she brushes her teeth.

It also means accepting that sometimes, even if I do all the right things, something will go wrong, and I will be abruptly and miserably sick. It means knowing that some of the things that are wrong with me (and not just not being able to eat gluten) will never get better — the damage was repeated too often, over too many years, for too long. And it means having to be extra inquisitive because of really crappy things that are more likely to go wrong with me.

If you frequently feel ill after eating, have trouble digesting fats, have weight problems (celiacs are often severely over or underweight, although underweight is ore common), experience intense food cravings, have any indication you may be malnourished despite eating a good diet, and these symptoms have either been a constant part of your life or appeared suddenly after a medical event (accident, childbirth, severe flu, etc. — these often trigger symptoms in those who are asymptomatic) and stayed, please discuss celiac disease with your doctor or try a gluten-free diet.

If left untreated celiac disease can be fatal and/or trigger more frequently fatal illnesses. Celiac disease also causes huge amounts of overuse of the medical system when undiagnosed people seek treatment for symptoms as opposed to managing their undiagnosed disease.

I talk about this a lot less than I used to (in part because I have to talk about the annoying logistical parts of this every day), but if you have any questions, you can go for it in comments

13 thoughts on “National Celiac Awareness Day”

  1. Do you use Triumph Dining cards at all? A friend travels for work and carries these with him. He says they’ve helped a lot, especially the ones in languages other than English.

    (I am not affiliated with Triumph Dining.)

  2. I have a lot of digestive issues and am underweight. I’ve been diagnosed with general things like GERD and gastritis (lots of pain in my gut and loss of appetite, that usually gets blamed on stress, and yes, I am a nervous person, and especially stressed out when I can’t keep down more than a small meal a day). I had a blood test for Celiac last year and it came out negative. Do you know if blood tests are usually conclusive, or do they have to take tissue from your stomach? I hate going to the doctor and going through rounds of expensive testing. I guess I could try eating gluten-free to see if it helps, but I’m already too thin and eat vegan which is already tricky. My teeth and gums have been bad despite good oral hygiene practices. I feel kind of ugly and old and out of control. My doctor gave me some probiotics, but I don’t know if they are helping. Anyway, sorry to hear about what you are living with and I can definitely relate to a lot of what you wrote.

    1. Here’s some info on false negatives on that test. I know people who have had them too:

      As to whether one should go through the biopsy procedure or try a gluten-free diet and see if that helps, the celiac community is very divided on it. There’s tons of writing about it though, so you can hear all the pros and cons. That said, it took 48 hours for me to realize that was the answer for me. Among my incorrect diagnoses for the physical symptoms were IBS, gall-bladder disease and general anxiety.

      Good luck with whatever it turns out to be. This stuff can be really exhausting/awful.

  3. That was really interesting, thank you. I’ve known a lot of people who also have celiac disease (and some with unrelated wheat intolerance but the rules stay generally the same), and, as a result I buy/cook gluten free a lot. It took a lot of adjustments, but I refuse to have friends around and put food on the table they can’t eat. Especially since one of them is only 2 (and has food anxiety, so setting food around that he can’t eat is just wrong).

    It helps, of course, that I already have to read labels and be outspoken in restaurants because of my bazillion food intolerances. The worst is when you order something “safe” — like I ordered potato skins the other day. Described as having bacon and cheese (both things I can have) and served with sour cream on the side (which I can have in moderation). It came drowned in a gigantic cream sauce (which I absolutely cannot have without dying for 2 days), but also, who serves potato skins in a cream sauce?! I wanted to go all Gordon Ramsay on them. 🙂

    While grocieries are slowly starting to improve here (except no company can make a gluten-free cookie with any kind of structural integrity!) restaurants truly are the devil. Chefs should know this stuff, but they do not. I believe it’s different stateside.

    1. The big problem here is an increasing amount of coverage of chefs who think it’s bullshit, resent being asked to change recipes and will intentionally put wheat in things that don’t naturally contain it if someone makes a request. I just need to know what places won’t serve me; that trickery is just AWFUL.

      In NY it’s pretty easy; less so in New Orleans. When I’m in Europe it varies by country. Switzerland is great at the supermarket (gluten-free croissants) but terrible in restaurants. Italy was fantastic everywhere I went (corn-based pasta, no problem!). In France you always have to watch out for flour being used as a thickener.

      And seriously, who the hell puts cream sauce on potato skins? That sounds nasty.

      1. It was seriously nasty. I was incredulous.

        I wish I couldn’t believe that chefs would intentionally poison people because they’re too stupid to come up with new recipes. If amateurs all over the world are able to make their favourite foods without gluten and wheat, surely a chef can!

        But I’ve worked with chefs, and you’re right. I’m certain they’d do it.

    2. For a gluten free cookie; have you tried Dr. Lucy’s cookies? On the package, they claim that they control and test their production line for allergens and cross-contaminants. The company was supposedly founded by a mother whose child had severe food allergies. (And we all know how important cookies are to kids!)

      I haven’t done any research on the company.

      Where are you? If you’re in the US try Wholesome Foods Bakery in Dallas, Texas. They say on their website that they ship nationwide. It’s owned by two celiacs, so I would reckon that they are very good at following gluten free stuff.

      1. If I recall correctly Dr. Lucy’s cookies are made with clean oats. While oats themselves do not contain gluten, they are often a source of cross-contamination, and some celiacs find they cannot eat even the “clean” oats because of a concurrent sensitivity — I’m one of those people, so alas no.

        But I live in NYC. For me, obtaining gluten-free products is not difficult. But this is a valuable resource for people with fewer local shopping options. Thanks!.

  4. I have wheat allergy rather than celiac but pretty much everything you said applies to me as well. (Except for symptoms, of course. If I come into contact with wheat I have breathing problems within 20 minutes.)

    I’m lucky in one way, though. A local pizza shop is owned by someone whose child has celiac, so they offer properly-made gluten-free pizza with no cross-contamination. (Other places try to make wheat-free or gluten-free products but don’t understand the risk of contamination.)

    Still, the cost of food is the worst. I’d never be able to live on my monthly cheque alone, without help from my parents.

  5. I am always excited when some place I like puts effort into gluten free menu options. (The Drafthouse has gluten free beers now!) Has there been any significant change in the kind of foods you like or anything you eat now that you never used to eat?

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