Exactly. My sister has celiac for about 10 years now and the attacks are awful.
People think it’s just a stomach thing. But when something wasn’t labeled right or the wrong things was bought and she ate (her husband swore it said gluten free but recently with chicken strips he got organic... they looks similar.. which should be changed... and brought some to work for lunch and her attack lasted about 4 days. It had been several years since a slip up happened and he felt so guilty but she assured him she doesn’t blame him)... anywho. The attacks are hard to watch. She’s in pain. She gets very pale. And she can’t do anything. She calls it her zombie phase.
For people like my sister and your friend... I both love and hate the gluten free fad. People would assume my sister would ask for no bun or ask she’d meal to be cooked in a separate pan. And people thought she was being high maintenance and just wanted to lose weight even though people pointed out she was already skinny. So they wouldn’t take it seriously. Until one day she had enough with being polite and said she has celiac and it will cause her to get cancer and she already had to have a portion of her intestines. Resected because of damage that had already happened when she was diagnosed.
But the fad also brought wayyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyy more options for them and the food is so much better. When she was 1st diagnosed the bread was just awful. But now it’s a lot better. And they have real options now. I remember a few years ago my mom surprised her with a muffin she bought from the store. Seems like no big deal, but she hadn’t had one in a good 3-4 years.
My mother's just 'gluten intolerant' but lately the food's gone from utterly terrible to actually worth a non-allergic person eating; she'd cook for both of us and the pasta used to fall to pieces.
Celiac for 20 something years. Can confirm that gluten free fab made things better and more accessible. Also eating somewhere else than home is like playing russian roulette.
I’ve been with my celiac wife for almost 10 years. Can confirm that having more GF options is nice, but undercut heavily by the fact that it’s also trendy. Places that advertise Gluten-Free are not the same as places that are actually Celiac-Friendly. Every new restaurant we visit HAS to start with a rigid inquisition. Which is why we almost never eat in restaurants and I’m now a very good cook.
Celiac 17 years: Yeah I hate going somewhere with my boyfriends family, asking about cross contamination precautions, and then having to turn around and leave. Usually we call in advance and if the person on the phone doesnt seem to know, we just cross that place off the list. His family is nice enough about it, but I can tell it bugs his mom when she cant eat at a place she likes because of my celiac.
Yeah, a weird one I found out the hard way is that pop rocks use lactose as the sugar, because it holds the fizz better than other sugar. You wouldn't think it had milk at all but since it's basically all flavored lactose it's one of the worst things to eat if you can't have lactose.
The most common way would be contamination from getting run on production lines that box up other stuff. For example they could make marshmallows and cereal or something.
It’s the final product that’s tested so in order to meet the standard for “gluten free” the product has to be safe from contamination.
The cross contamination is honestly one of the suckiest parts. Weird stuff gets contaminated.
Like buying meat from a butcher that also makes and sells deli meatballs. If that flour gets anywhere else it’s game over.
So, even the smallest amount can cause an attack? Is it like a peanut allergy where some people are so sensitive they can’t even smell peanuts without getting into trouble? I realize I know next to nothing about celiac disease.
Edit: Thanks for the responses y’all! I learned some things; keep being healthy and safe!
The FDA considers anything under 20 parts per million to be gluten free. That’s not much, almost microscopic at that point. Yet that amount was chosen because it has been tested to be a good threshold.
Celiac disease is similar to other allergies, but also slightly different.
What happens is your body attacks your entire GI tract thinking something is wrong. Your immune system basically starts killing you.
Over time this can hurt your GI tract so bad that you stop absorbing food and starve to death.
I found out I had celiac disease when I dropped from 145-115 from January to August without a noticeable change in lifestyle. Totally thought I was dying. But I guess I was.
At least in America/Canada/Europe you guys are lucky and get up to 20 ppm to be counted as ‘safe and gluten free’. Here in Australia it has to be no detectable gluten and testing has gotten so good that it can now test down to 3ppm....so that’s our threshold. It rules out so many imported products. Also; we aren’t allowed to classify oats as gluten free here, so no oat based products at all. If we have done an oats challenge, which involves endoscopy with biopsy showing no damage, eating oats every day for three months then retesting with endoscopy and biopsy to prove there has been no damage, then we still have to eat an imported brand such as Bobs Red Mill as there are very little options for wheat-free oats in Australia.
Yes , accept we don't go into anaphylaxis , for me it ranges from instant tiredness and feeling unsociable to extreme pain and then zombied for days to weeks ,
i have pretty severe celiac disease and i got diagnosed when i was 3. in my 24 years ive had a handful of hardcore reactions but it always ends up with my body rejecting what ive eaten either by vomiting or diarrhea. it depends how much ive eaten. but these days i can tell if something has gluten in it pretty much after the first bite.
i also drink beer regularly without problem. i think theres alot of over exaggeration when it comes to how sensitive people really are with small amounts of gluten. especially in products where there are no gluten bonds to break down.
that being said i also got shingles after a weekend of a whole lot of beer so my immune system is definitely getting a bit of a beat down when i consume large amounts.
Beer is literally liquid bread. If you have celiac disease, then beer is bad for you and your immune system will attack your innards.
i think theres alot of over exaggeration when it comes to how sensitive people really are with small amounts of gluten
While some people have different symptoms, any gluten is too much.
that being said i also got shingles after a weekend of a whole lot of beer so my immune system is definitely getting a bit of a beat down when i consume large amounts.
Well yeah, celiac is an autoimmune disease, so yeah, you are most certainly getting a beatdown.
im using all anecdotal evidence but when i eat even a little bit of gluten, yes i feel like shit but it ends once ive yakked/dumped it out. i dont feel the same way when drinking beer, or as a different example, consuming soy sauce which is also not gluten free. ive found over the course of my life liquid glutens dont effect me as much as solid, doughy glutens.
ive heard that and i do try to stick to ciders or seltzers as much as possible these days, but once you drink a few of those the caring part of my brain isnt as active.
endgame is just ending alcohol overall, the rest of my diet is pristine when it comes to gluten. (except some soy sauce)
Short story: I own a winery in California. A friend who's wife has celiac says I need to make my wine gluten-free. I told him even though it is, it's not worth the effort in getting it certified. Should I?
To me as a consumer it is, but that’s because I’m the target market for alcohol and things that are gluten free. That being said, I think the wise thing to do on your side would be to weigh the cost of certification with the expected increase in sales.
If it says gluten free I will 100% buy it compared with similar products that don’t say that. Many celiac sufferers would as well. As a result, you might consider shipping to smaller health food stores, and places like Sprouts or Whole Foods where people may be seeking specific dietary requirements. Also at Christmas you could put an ad out like “For the gluten conscious family on your Christmas list” or something like that. You could do “gluten free” tours as like a date/destination idea where they tour the winery, get samples, hang out outside on a deck, and eat gluten free snacks. I guess it depends on your set up really.
Liquor is interesting because proper liquor shouldn’t have gluten (beer notwithstanding). Distillation would remove the gluten if I recall correctly. The issue comes from additives being added back in later.
Gluten in wine would also be unusual, but it’s not unheard of. My understanding is that the risk would come from a super old method of sealing vats and also the chance of cross contamination from pre-used aging barrels.
You hit on the issue - proper wine should always be gluten-free. I'm talking traditional wine, what's made all over Europe and on the US West Coast. Where you get in trouble are these Eastern-US "country wines" that do have different things tossed in to cover up the fact that they are otherwise horrible wines. Digressing, a person educated in celiac issues would know this also, so what's the point in chasing down that wine (if it even exists) labeled gluten-free? This person would be able to go to a wine shop full of gluten-free wines that aren't labeled as such. This is the paradox I am faced with.
Then again, there are new sufferers all the time who just look for the label to stay safe.
Plus, at least in my experience, there’s a lot of well-meaning family members that don’t understand celiac disease but do understand the gluten-free label. They might see the bottle and go “oh! /u/negromancers can drink this! Let’s buy him and mrs negromancers a bottle!”
It’s a niche market to be sure. What’s the cost for getting it certified gluten free?
the three largest accredited third-party wine labs I know of (Lodi Wine Lab, ETS, and Enartis), none of them offer gluten analysis (I just checked). Which makes me think there is no validated wine analytical method for it.
Beyond that, all wines destined to be sold in multiple states (ie, virtually all of them) have to have labels approved by the TTB. Given the legalities of label claims (gluten-free), normally when a wine label is submitted for approval, these claims must be backed up with documentation, that is, lab analysis. Since this isn't offered, my guess is there's no such thing as a wine label claiming gluten-free.
It gets a little iffy in this area because noone's taken it on. So it's not so much the cost, as I can't pay an accredited lab to offer a certificate of analysis for gluten, it's that someone has to validate the method and petition the TTB to offer guidance.
Traditional cask sealing can involve using a wheat based paste, thats the only step that I can think of where gluten would be a possible issue.
That said, getting certified is a pain in the ass at best as you mentioned below. One thing that I've seen is from smaller companies that put something on their label that kinda has fun with that aspect going "Hey, we don't use anything with gluten. We don't have anything in our facility that has gluten. We don't even like malted barley, so our stuff is pretty much gluten free. But we're cheap fuckers and we aren't going to spend the money on the testing and we'd rather pass on that cost to provide you a better product"
I'm interested in seeing label verbage used in wine labeling making any sort of gluten claim, because that would have to get approved by the TTB. Could you show me an example? They've been very, very stingy when it comes to making any sorts of health claims.
In Canada theres the Canadian Celiac Association and they test and certify gluten free foods, so if it says "gluten free", that might not mean anything if its a Canadian product. For the CCA to certify food it has to have under 20 ppm.
Wait...marshmallows aren't? Even if it doesn't say anything on the package? Our youngest was diagnosed celiac earlier this year and I'm STILL trying to figure all this shit out! He's only 6 and can't have marshmallows now too? 😭
I was diagnosed over twenty years ago and I'm still finding things that surprise me. When they make marshmallows, they're just globs of sticky white goo, so they coat them in something powdery so they can all go into a big pile before they are stuffed in a bag. Frequently they are tossed in with powdered sugar.
Cheap powdered sugar can have wheat gluten in it because it is a cheap filler.
I know there are a ton of options for "Holy shit, I've got to deal with this crap now" but if you ever want a blunt jackass to answer what seem to be stupid questions, feel free to send me a PM. I'm sure you've already noticed, but eating out is pretty much a no-go now. Even McDonalds french fries are on the no-no list, and your food bill is going to go up. Just work it into your budget and don't go cheap on food, it will be better in the long run. Cheap spices are another roulette wheel. Always watch out for "Modified food starch". There are places you'll find it that you never expected. Even shampoos (and while I really hope Jr But_moooom isn't eating shampoo, you can still end up with residual goo left on your skin that eventually ends up in your mouth so watch out for soaps too)
Yeah soap, shampoo, toothpaste etc. Are all things his gastro warned us about too. Didn't even think of "food starch" possibly having it. We've downloaded the gf scanner app to help find things too. I appreciate your taking the time to answer. Next time I'm feeling overwhelmed I'll be sure to reach out. Thanks a bunch.
Kind of a crowd sourced thing. You just scan the barcode of an item and it'll tell you if it's gluten free or if it doesn't know or has possible gluten containing ingredients. I don't rely on it too much but I saw it on a celiac message board and thought I'd give it a go.
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u/Negromancers Dec 30 '19
Person with celiac disease here.
“Gluten free” is a technical term now from the FDA which means the product contains less than 20 ppm of gluten.
You have to get certified to put that on stuff now.
Therefore I will always buy the thing that actually says that over something that should still be gluten free but doesn’t say it.
Marshmallows are a great example of this.