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
Letters from Titan 