But also, if youâve 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 âyou probably have it,â but.
The preliminary screening test for celiac is a blood test which basically looks for âis there a war going on inside your body?â 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 youâre on a totally gluten-free diet and have been for a while, that test will probably say âno celiac here! lookinâ good!â
But letâs also say that your doctor goes âmmm, Iâm not sure, letâs do some further tests.â 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 canât absorb enough nutrition from your food, and, uh, you die. Other things happen too but thatâs 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 theyâve been like âyour insides look like someone who doesnât have celiac disease, good job!â (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 donât get cancer or starve to death. Buuuuuut you canât really definitively diagnose celiac then. WHICH IS FINE. Most doctors will either have you do a) a 'gluten challengeâ for like a week before a biopsy to see how your body reacts, bc a week of a glutened diet wonât kill someone with celiac, just make them very unhappy and grumpy and poop forever or b) just say 'you probably have it, letâs act like you have it, stay off gluten forever and ever.â
The other thing about celiac, lest people think they can 'catchâ it from modern bread, is that you have to have a genetic predisposition to it, and we donât 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 itâs time to light everything on fire the moment that it spots gluten. Weâre pretty sure thatâs 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 heâs been through and out the other side of a skin cancer diagnosis, so itâs probable thatâs what kicked him over, though we donât know.
Thereâs a lot we donât know about celiac, but what we do know is this:
Itâs been around in humans for at least a couple thousand years; weâve found evidence of it in skeletons going back that far. Celiac disease is not new, itâs not trendy, itâs not a manufactured thing. As mentioned above, weâre probably just seeing more of it now because more of us get to survive!
Itâs an autoimmune disease that tends to cluster with other genetic autoimmune diseases like lupus, rheumatoid arthritis, Sjogrenâs 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.
Itâs most prevalent in but not confined to white people, because itâs genetic. I have to repeat that it is not confined to white people, because a lot of people do think itâs a âwhite person disease,â and that leads to underdiagnosis in literally everyone else. Having celiac is shitty, but itâs shittier if you donât 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 itâs poorly treated, you can end up getting some really shitty cancers (leukemia, small intestine, etc.). âPoorly treatedâ means not adhering very strictly to your gluten free diet over the long term. There is no such thing as a âcheat dayâ 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 donât feel bad if they get trace gluten. (This is not me, I am reactive down to 3ppm, yay me.) Itâs still not safe for them to eat gluten at all. Iâve had many people say 'oh my friend says itâs safe for them to eat [gluten-containing thing] because thereâs not much.â Well, itâs cool if your friend wants to do that, thatâs their body, but no, itâs not safe for celiacs to do that, so please donât feed that to me.
Gluten is in so much processed food and it sticks to everything. Itâs a cheap way to make things stick together, and it does not like to come out of stuff once itâs stuck to it. Wheat flour is in Twizzlers. Iâve gotten glutened by barley syrup being used in frozen lemonade. I canât eat something supposedly 'gluten freeâ 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 thatâs 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 donât even walk into glutenated bakeries bc inhaling flour is enough to make me feel like shit.
For most of us, itâs 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, thatâs 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, youâll 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 donât know entirely why some people who have the genetic risk develop it and some donât.
You canât catch it, youâre not going to give it to yourself by eating store-bought bread, at least the best current research doesnât think thatâs the case. When we talk 'traumaâ that makes celiac come out, weâre talking like surgery, car accidents, anything else that causes big trauma to the body.
Celiac sucks, you donât want it, itâs not trendy, there is no cure, itâs an autoimmune disease, donât fuck around with our food. Thank you for coming to my TED Talk.