i think a lot of the problem is that most people don't know much about celiac disease. i became aware of this because, although i have no one in my family with celiac disease, my dad has a wheat allergy which overlaps with celiac in that wheat is the #1 source of gluten in foods so there is a lot of overlap with what he can't eat
i also became hyper-aware because my dad happens to also be allergic to corn, oats, legumes, and brown-rice, which are four of the most common ingredients in gluten-free substitutes. so he basically can't eat a lot of gluten-free substitute foods either
this all led to me talking a lot about allergies with other people, growing up, including many people with celiac. i became interested in the differences between celiac and my dad's allergies. i saw how difficult life was for my dad, especially surrounding food, and this made it easier to empathize with people with celiac, and i wanted to make sure i understood the specifics of their conditions, so i asked a lot of questions and listened a lot, which is unfortunately something that most people don't do.
one thing i didn't know initially was that Celiac, although less life-threatening in the moment than severe allergies that cause anaphylaxis, tends to cause a much more severe, debilitating, and long-term reaction than milder food allergies (which are, thankfully, much more common than the severe, life-threatening ones) AND these reactions can be triggered by smaller amounts of gluten.
so like, with my dad's not-severe wheat allergy, if he eats something contaminated with a trace of wheat, he's fine. if he eats wheat, he will have an unpleasant, but not dangerous reaction, that will usually last several hours and usually he'll be fine the next day. this contrasts with Celiac where the symptoms tend to last for days, usually not peaking until about 24 hours after exposure, and sometimes persisting as long as 8 days. (most people I know say they are bad for 2-3 days)
he also can eat wheat-adjacent foods. the protein he is allergic to arose somewhere in the history of modern wheat, so although he cannot eat modern bread wheat, durum wheat, or any of the modern Chinese wheat varieties, he CAN safely eat not only rye and barley, but also eat spelt, emmer, and khorasan all of which. this contrasts with Celiac where you cannot safely eat ANY of these things.
furthermore because he reacts to proteins that denature relatively easy with heat, he can eat some foods that have been cooked at a high temperature, so like, although he cannot eat pasta or bread, if there is a fried food that has been breaded with flour or cornmeal, he can eat that and won't react at all. this also contrasts with Celiac; people with Celiac also cannot safely eat ANY of these things.
lastly, Celiac, more so than food allergies, is more likely to cause long-term disruption of nutrient-absorption so it can cause systemic issues that seem unrelated, including anemia, osteoporosis, tooth decay, long-term skin rashes, fatigue, malaise, joint pain, reduced spleen function, liver damage, and nervous system damage which can lead to numbness, tingling, balance problems, cognitive impairment. although none of these will kill you immediately like anaphylaxis will, they are all much more serious and long-term than the reactions of milder food allergy sufferers.
because mild food allergies are a lot more common than Celiac disease, far more people will have had contact with someone with allergies like my dad, than with Celiac.
so they don't understand (a) how bad the contamination risk is even with trace amounts of exposure (b) how severe it can be (c) how the reaction can be long-term and take a long term to recover from (d) how chronic low-grade exposure can cause systemic declines in people's health and long-term health problems which can severely affect quality of life and even decrease people's lifespan.
nowadays there is a "fad" about self-diagnosed gluten intolerance and there can be a lot of misinformation surrounding it. now, there ARE people who have trouble with gluten for reasons other than Celiac. but there are also a lot of people out there who aren't actually sensitive to gluten but have come to believe that gluten-free foods are "healthier" (which is not true, because wheat is a high-protein grain and rye and barley are high-fiber grains that are good for digestion, when you eliminate gluten you eliminate three healthy options and gluten-free foods often replace those things with refined starches that are lower in protein and fiber)...but anyway because of all this shallow health hype there are lots of people out there who avoid eating gluten but they don't actually have a medical sensitivity, and there are also people who DO have a sensitivity to it but only in larger quantities. so none of these people need to care about contamination.
so for every person who someone has come into contact with who has Celiac, people probably have come into contact with many more people who avoid gluten but don't have to care about contamination.
and add to all of this the unfortunate part of our culture where some people simply WILL NOT BELIEVE you when you say you have a certain health condition. so there are people out there where you can say: "i will face such-and-such severe consequences if you do X" and the people will say "okay, yeah" but they don't actually believe you. and then they go and do X and then you face severe consequences and they just throw up their hands and say "whatever". and yes this is an unfortunately large portion of the population. even if it's only like 1% of people (and in some cultures it is a lot more than that), it only takes ONE person to contaminate food. and there are so many steps where it could get contaminated: in the kitchen, on the table if people are sharing a communal dish (or even if someone just lets something drip down onto another plate or bowl), or in the factory, or even earlier, at the point of harvest...like...an example is, all cool-season grasses have similar life-cycles so wheat, barley and rye are all likely to contaminate crops of oat, which is gluten-free, and it is also an unfortunate fact that there are MANY weedy species of barley some of which are aggressive weeds in cropland, so keeping all gluten out of the harvesting and production process, even if you are trying, is genuinely tough to do.
like people don't realize it but wheat and barley are such parts of human civilization, they're pretty much everywhere. i see wheat and/or barley plants come up occasionally in people's gardens, where it can get there from bird seed, or escapes from nearby cropland. there are even native, wild species of barley in North America, as well as "wildryes" (Elymus sp.) which are not cultivated for food, but can also contain gluten and are all over in the environment and can seed into cropland and contaminate harvests of any cool-season crop. and these grasses are all awned (long, narrow tips on the seeds) so the awns can ride on clothing on animals (which is how these are distributed in the wild) so they can show up just about anywhere.
and yes this is why gluten-free certified flours are a lot more expensive than ones that don't have that certification.
all of these lead people to underestimate the seriousness of this stuff
sorry for my rambly post, i know this is long but i hope someone somewhere learned something from it and i hope it protects someone, somewhere from a bad reaction to gluten
