But also, if you’ve been on a strict gf diet and you DO have celiac disease, it becomes near-impossible to properly diagnose. You may get a tentative diagnosis of ‘you probably have it,’ but.
The preliminary screening test for celiac is a blood test which basically looks for ‘is there a war going on inside your body?’ bc when you have celiac and are eating gluten, your body is literally attacking itself all the fucking time. (Including your brain! Which is why one of the symptoms of celiac that we only just really figured out in the last 10y or so is increased anxiety and paranoia and irritability!) So if you’re on a totally gluten-free diet and have been for a while, that test will probably say ‘no celiac here! lookin’ good!’
But let’s also say that your doctor goes ‘mmm, I’m not sure, let’s do some further tests.’ Well, the definitive test for celiac disease is an intestinal biopsy - they take a tiny biopsy of the start of your small intestine and look at the state of your villi. The villi and microvilli are important bc they increase the surface area of your small intestine something like 600x, and when they get destroyed by celiac disease, your small intestine basically can’t absorb enough nutrition from your food, and, uh, you die. Other things happen too but that’s the tl;dr.
However, for someone like me, who definitely has celiac disease but has been on a totally gluten-free diet for close on to a decade at this point, I could go in to a hospital and have a biopsy and they’ve been like ‘your insides look like someone who doesn’t have celiac disease, good job!’ (This is what my GI said to me at my last biopsy, matter of fact.) The whole point of the gluten-free diet is that I get to keep my villi and microvilli so I can digest my food and don’t get cancer or starve to death. Buuuuuut you can’t really definitively diagnose celiac then. WHICH IS FINE. Most doctors will either have you do a) a 'gluten challenge’ for like a week before a biopsy to see how your body reacts, bc a week of a glutened diet won’t kill someone with celiac, just make them very unhappy and grumpy and poop forever or b) just say 'you probably have it, let’s act like you have it, stay off gluten forever and ever.’
The other thing about celiac, lest people think they can 'catch’ it from modern bread, is that you have to have a genetic predisposition to it, and we don’t actually know how people develop celiac disease later in life. The best current guess is that if you already have a genetic predisposition toward it and your body goes through a bunch of trauma, your immune system might suddenly decide it’s time to light everything on fire the moment that it spots gluten. We’re pretty sure that’s what happened to me, since my celiac was diagnosed about 10 months after I had major spinal surgery. My dad also has celiac disease and he was diagnosed in his 60s, and he’s been through and out the other side of a skin cancer diagnosis, so it’s probable that’s what kicked him over, though we don’t know.
There’s a lot we don’t know about celiac, but what we do know is this:
It’s been around in humans for at least a couple thousand years; we’ve found evidence of it in skeletons going back that far. Celiac disease is not new, it’s not trendy, it’s not a manufactured thing. As mentioned above, we’re probably just seeing more of it now because more of us get to survive!
It’s an autoimmune disease that tends to cluster with other genetic autoimmune diseases like lupus, rheumatoid arthritis, Sjogren’s syndrome, etc. A lot of us have multiple autoimmune diseases, because the only thing strong enough to kick our asses is us, I guess. For people who have celiac, our immune system detects gluten and then runs around setting the whole fucking place on fire just in case there might be more gluten.
It’s most prevalent in but not confined to white people, because it’s genetic. I have to repeat that it is not confined to white people, because a lot of people do think it’s a “white person disease,” and that leads to underdiagnosis in literally everyone else. Having celiac is shitty, but it’s shittier if you don’t get it diagnosed and start taking care of yourself.
It can in fact kill you and absolutely used to. The life expectancy of someone with celiac disease before a doctor in Holland (I think) accidentally diagnosed it in 1945 (due to food shortages which led to people not eating bread/having access to flour for months at a time) was 5 years or less. If you think you might have it, please talk to a doctor.
If it’s poorly treated, you can end up getting some really shitty cancers (leukemia, small intestine, etc.). “Poorly treated” means not adhering very strictly to your gluten free diet over the long term. There is no such thing as a “cheat day” for celiac disease (unless you are doing like a gluten challenge or smth as above). You cannot safely ingest gluten. Just… ever.
There is no safe long-term amount of gluten for people with celiac disease. Non-reactive is not the same as safe. I know people with celiac disease who do not react to amounts less than 20 parts per million. They don’t feel bad if they get trace gluten. (This is not me, I am reactive down to 3ppm, yay me.) It’s still not safe for them to eat gluten at all. I’ve had many people say 'oh my friend says it’s safe for them to eat [gluten-containing thing] because there’s not much.’ Well, it’s cool if your friend wants to do that, that’s their body, but no, it’s not safe for celiacs to do that, so please don’t feed that to me.
Gluten is in so much processed food and it sticks to everything. It’s a cheap way to make things stick together, and it does not like to come out of stuff once it’s stuck to it. Wheat flour is in Twizzlers. I’ve gotten glutened by barley syrup being used in frozen lemonade. I can’t eat something supposedly 'gluten free’ that was made in the same facility as things containing gluten. If someone uses the same cutting board to cut bread as I use to cut my gluten-free bread, or the same toaster, I will get sick. (I am currently recovering from something like that happening on Friday night.) Once gluten gets in/on a porous material, it will never come out enough to be safe for a celiac to use it to prepare food. The only exception to stuff like that is cast iron, and that’s ONLY because you can put cast iron in a stove, turn that stove up to 500 F for 30m, and burn every trace of organic matter away. No, I cannot eat something out of your tupperware or prepared in your gluten-containing kitchen. I don’t even walk into glutenated bakeries bc inhaling flour is enough to make me feel like shit.
For most of us, it’s almost impossible to eat communally, and that can make us feel really shitty, because eating together is a prime human bonding experience. But, like, gluten is in fucking everything, and for most people, that’s fine! If you find a restaurant your celiac friend can really eat at, or make a point of accommodating them so they can eat with you at parties, you’ll be our favorite friend.
Celiac disease is not the same as gluten intolerance, but some people are at genetic risk of and who might develop celiac disease have gluten intolerance, but not everyone who has GI is at risk. Bodies are weird, okay? And we don’t know entirely why some people who have the genetic risk develop it and some don’t.
You can’t catch it, you’re not going to give it to yourself by eating store-bought bread, at least the best current research doesn’t think that’s the case. When we talk 'trauma’ that makes celiac come out, we’re talking like surgery, car accidents, anything else that causes big trauma to the body.
Celiac sucks, you don’t want it, it’s not trendy, there is no cure, it’s an autoimmune disease, don’t fuck around with our food. Thank you for coming to my TED Talk.
