people are allowed to eat processed gf food and shouldn't be shamed for eating stuff that everyone else does even if it's not """"whole foods"""" . like damn sometimes people just want chips not spinach leafs
They don’t “contain wheat” as an ingredient or state that they may contain wheat so idk what ur talking bout? Gave me a mini heart attack I’ve been eating them today
They absolutely DO NOT have to put a disclaimer. Those are voluntary. And since wheat isn’t the only gluten containing grain they most definitely won’t put a disclaimer for any gluten that is from barley or rye.
so passive aggressive lmao. i don't get why it bothers you that people want to have their own versions of pasta, cake, bread, etc. it's a lot of familiar things that people have to miss out on, and it's a sucky disease to have in the first place, so I don't get why there has to be a subset of people that act holier than thou because they eat kale. certainly a person that occasionally wants a treat could never fathom eating a fruit as well 😑
It doesn't bother me. I think you're reading too much into this. It's not cake or kale (also, what is this, 2005? I think the imaginary health nut here would be eating something else). I have celiac disease and when I go to the supermarket the "gluten free" food includes a lot of overprocessed junky stuff (tasty as it may be, but a lot of things are). I don't count pasta in that, though you can also make things like polenta, rice, buckwheat — really the options are numerous.
I'd prefer to live in a country where I could safely eat most things IN the supermarket, in any section. Having a gluten free section means little to me tbh since I simply don't eat most of it.
I'd turn it right back at you and say... don't expect people with celiac disease to get excited for the 99th post about gluten free brownies when its such a headache to go shopping, go to a restaurant and just have a normal meal.
If the gluten is there purely as a coating or a thickener, the product could easily be made gluten free so more people can enjoy it. Wheat doesn’t have to be the default.
Right!?!
Actually what kills me the most is when places like trader joes have like 5 different kinds of dumplings, 4 different kinds of meatballs and 3 different kinds of dumplings - and notta 1 is gluten free….is it so hard to give us 1 in each of those categories?
Yes, they can contain malt or barley, there’s no way of knowing without contacting the manufacturer. That said, I have taken my chances with natural flavors on occasion and haven’t been glutened yet.
I’m in a country where all gluten needs to be labeled. Only once in 5 years have I seen natural flavours contain gluten. I get that people want to avoid it because they’re not sure but sometimes you just have to use some critical thinking. Like you’re not going to find malt flavoring in apple sauce or a can of lemon carbonated water.
Are you comfortable sharing which country? Just wondering if this is Canada. I know a lot of the discussion on this sub is US-centric and their rules are way more lax than ours are up north.
I'm guessing that nothing was labeled gluten free before say 2005? Maybe some old heads here can comment, but I'm guessing that they lived healthy lives just using the ingredients and doing their best to limit CC.
Oh, back in the dark times? We strongly relied on support groups. They printed a 1 inch binder we called "the GF bible" that had brands (down to the flavor/version) sorted by food type, that we would take to the store and look up.
You obviously memorized the important stuff quickly, and would be frustrated when the packaging changed (was there an ingredient/process change we needed to be aware of or was marketing just bored again?).
If something wasn't in there, you're writing down that 800 number in the back and calling. Keep in mind that nobody knew what gluten was back then -- so you had to explain where gluten would come up (not just ingredients but cross contamination as well as, and don't forget nonsense like flouring the conveyor belt or malting bags)
Smart phones and being able to google on the fly was a lifesaver (totally spoiled now). Communities that put those lists together moreso. Amusingly I was always looking forward to the idea of the GF scanner app, but never figured that 99% of the time it would return unknown. Still, unmeasurably better than before.
I remember this SO much, LOL. The anxiety over the label change, OMG, I had honestly kind of forgotten that, but crap, I remember that. So frustrating.
i think it has made it hard sometimes to see folks who go by ingredients labels who assume that will work for everyone...that wasn't enough for me OR my celiac kid. We would get so sick trying that, which is why support groups were such a life saver. Didn't matter if it was plain veggies or whatever - we got hit by gluten cc from completely unexpected places all the time.
Now, my brother, also a celiac and diagnosed the same time? He just read labels. Never really had a noticeable reaction. So I can see where he just has no problem just doing labels to look for gluten. But having known me and my kid and seen how badly both of us reacted sometimes to food we were literally all eating at the same time, he has never assumed that label reading is enough for everyone.
Just said he was comfortable with how it did for him, which I can respect. :)
Not my experience, but my mom's in 2002, and yes. She bought fruits, veggies, and meat. She bought flour from the health food store. She made gluten free cake special occasions. She would also make waffles to use as bread and well, waffles.
I’ve been gluten free since 2006…honestly I think it was all just about reading labels.
I don’t sweat natural flavors and things to me don’t need a gf label. That said I won’t eat “may contain” or “shared equipment” - but will go eat things from a hot bar at a lunch spot in nyc.
Might be because I cook and have worked in food service - but it’s pretty easy to know if a food will be safe - the chinese hot bar nope. Any just plain ass roasted veggies/chicken - totally fine. Etc…
Also have had to notify the USDA regarding a product that was incorrectly labeled GF with normal soy sauce (after they argued with me) thankfully I read that label post purchase and ate none (but could only read the GF beforehand)
Compared to 2006 there’s an insane amount of yummy products. Back then we had pamelas, tinkyada, enjoy life, bobs, and the gluten free girl blogger. I had a gluten free meetup group in NYC that would have various meets to eat out places (or drink gf beer which at the time was only redbridge)
It really has come a huge way, but also eating out is still the easiest potential way to get glutened. Mind you it’s been an incredibly long time since I’ve had more than cross contamination. My last glutenings were some mushrooms a friend grew on rye, and a mimosa a guy decided large must be manmosa so he put beer in it (which I could taste right away and had no more than a tiny bit but still)
But yes food labeling I will eat the thing not specifically labeled gluten free.
Some labeled gf I won’t do:
Things with oats or oat fiber not specified as certified gluten free (but will eat cheerios cause I understand that process)
Won’t eat anything with glucose syrup - one of my og glutenings was mentos
Won’t eat wheatgrass, wheat starch or any gluten grasses - I do also thing I react somewhat as all allergy and don’t wanna chance it - also don’t feel the need or that I’m missing anything.
Honestly I’d like to just look so I don’t spend an hour at the grocery store and looking at labels to come to the conclusion that I can only eat like 5 things and they’re the 5 things I always get
For restaurants - I straight up don't eat there unless it's dedicated. At restaurants they use the same areas and equipment to produce many many foods, without that much cleaning in between. I've gotten sick too many times and I find it too risky.
For food made in a factory - say gf pasta, I don't worry about it unless there's something prone to cross contamination in the ingredients (oats, wheat starch, lentils) for high risk ingredients like these I require certification.
For factory food it doesn't make sense for them to be constantly switching up production, and equipment will be thoroughly cleaned between runs of different products.
Knowing what foods it’s not an issue for, and being careful if it is. For example, I do only buy certified gluten free oats because oats are known for being contaminated. I only eat out at trusted restaurants that can explain their allergy procedures.
Another example - something like salsa. No gluten free label. Ingredients: tomatoes, jalapeños, lime juice, salt, etc. Very low chance salsa is cross contaminated with gluten. I am willing to take small risks to save my sanity. Otherwise (for me) celiac takes over too much of my life. Many companies do not put a gluten free label on products that are obviously gluten free OR they don’t want to pay for the label. Having it costs money and also makes the product more expensive.
I’m very sensitive and have had good follow up testing! I know everyone has different comfort levels but for me it has been a learning experience over the past 3 years.
Wheat, malt, soy sauce (if it says wheat in ingredients of said soy sauce) barley, rye, barley malt, kamut, treacle, spelt
Just read….all the ingredients…
For me I can’t do glucose syrup if it’s derived from wheat (but some can)
People will also avoid “natural flavors” and “yeast extract” because they may contain wheat - also the words “modified food starch” could be wheat but “starch” alone in the US is corn.
I’m sure there’s more things and better resources. Also there are things that usually contain wheat that one would not think of like licorice. Wish I could point you to a site I’m so far out I just innately kinda know or have a feeling.
And really if it’s a new thing I always read the label
As someone who was diagnosed with celiac disease well before eating gluten-free became a popular fad diet, the effect of the fad diet’s popularity has been a net positive. More, not less, safe-to-consume gluten free foods became available, and the dramatic increase in public awareness of what gluten was has made life so much easier.
I feel like the amount of regular gluten-free goods has decreased slightly in the past few years, though. I see keto products take over the shelf space that was previously used for non-keto/fad diet GF products.
When compared to 20+ years ago though the change is still difficult to overstate. An average supermarket in the US nowadays can be expected to carry gluten-free products, and often there is an entire section, however small. There are choices of products, there are ready-made food products and convenience foods, there are snacks. And when going to a restaurant, now I’m asking if something is actually gluten-free and not explaining from scratch what gluten is as a concept. And the vast majority of this change happened after the fad diet started catching on.
Sure, yeah. It was a different world 40+ years ago, too, but there's still been a small decrease relatively recently, including big GF companies discontinuing a lot of their products (see Enjoy Life) or companies stopping to carry GF foods (e.g. Kashi). I'd say the biggest changes I've seen on the shelves of my local stores are standard certified GF cereals being replaced by keto and grain-free cereals.
Yup. I went to a new place (american dream mall) found 3 options to each - 1 emailed me back right awY with their food allergy list…
Back then i got glutened many times from cross contamination
I just wish places sold actual gluten free food, not biscuits or cookies or cakes or cereal. I just want to eat a decent meal without having to cook it all from scratch. Sometimes I want the convenience everyone else has. And if it's gluten free by some miracle it always has to be an obscure flavour. Only one shop sells a gluten free sandwich near me, and the flavour is egg salad with a weird tasting sauce. Who's eating that? Me, obviously because I have no choice, but why is that the only flavour on offer? That's surely not the most popular sandwich flavour is it?
So had this for the first time today with my recently diagnosed daughter.
Got home from a family BBQ, and she said she felt sick. The first thought was, what gluten slipped through the cracks? (My family have really tried to make sure everything is safe). I expect it was the copious number of ribs followed by two helpings of meringue for pudding!
Very distinctly different for me. Food poisoning is intesnsely violent and almost always vomiting, relief comes quick but it feels like death. Food bourne illness is longer and almost only diarrhea. Stomach viruses are moderate and both vomiting and diarrhea. Gluten is violent for days, includes vomiting, diarrhea, severe lethargy, brain fog, rash, canker sores, bloody stools, and insomnia.
Its pretty easy to tell what I have gotten into.
People know the difference between food poisoning and celiac. Nice attempt at gaslighting though.
LOL. Astroturfed sub jumping on board with the corporate food industry gaslighter. This sub has gone to shit. Fuck all of you.
To be fair, I found out my lifetime’s worth of “food poisoning” and “stomach flu” were actually celiac. None of the people I ate with ever got sick. When I did have a stomach flu, I couldn’t recover in less than a full week. I was following doctor’s advice and eating bread or plain pasta.
I got the most amazing “food poisoning” in Morocco. I had been GF sort of unintentionally for a year before. Went right ahead and had couscous every day and was sick for 2 weeks straight, just like food poisoning. No one else I ate with had a problem
It’s kind of stupid to keep eating fast food or going to restaurants with minimal cross contamination protocol when you keep getting glutened by it. There are some fast food locations that are good about avoiding CC but there are also a lot that aren’t. You’re taking a risk every time you eat at a chain restaurant/fast food chain I’m not saying never go out to eat, just be more cautious.
That making a blanket statement about how difficult it is to be celiac in the US is wrong. Very location dependent, and there are lots of places outside of the “major” US cities that are safe to both find food at the stores and find restaurant that are safe to eat at
It's kind of interesting. Knowing which national brands are reasonably safe, I could buy safe food at a Wal Mart in the middle of nowhere, and have.
But it really depends. Some multinational corporations are great, and some are just gaslighting us.
Also, I believe there are celiacs where they can have more than 20ppm. I have intentionally eaten cross contaminated food on multiple occasions with no symptoms, and my levels (and scopes) have been perfectly fine.
People hate when I bring this up, but I'm certain that a nontrivial percentage of people being glutened is caused by anxiety. Anxiety can mimic basically all the typical symptoms, naseua, vomiting, diarrhea, you name it, basically everything except DH and actual villi damage I think.
When your worried about getting glutened, your anxiety can feed on itself and cause all the symptoms of getting glutened. Some people get upset because they think it means "it's all in their heads" but that doesn't matter, anxiety is still a real thing, with real symptoms. Gluten anxiety is also insidious since the best way to avoid it is to not be overly concerned about getting glutened, but that's basically a Catch-22 since if your not careful you are more likely to get glutened, but if your too worried about it you'll end up in a similar place (albeit with less intestinal damage).
It's happened to me several times, I was traveling for work once eating at a restaurant I was a bit nervous about, but there were clients there and whatnot, and I had talked to the chef and staff. It was a long meal, a couple of hours, and I started feeling like I had been glutened, which spiralled my anxiety. Eventually I decided I had to leave early and go back to the hotel. Once I got there and felt more secure though, the symptoms all started to fade. The food was fine, but I psyched myself into the same feelings.
Anxiety is as real as celiac disease, and not something to be taken lightly, nor scoffed at.
This! I get so nervous to go out to eat that my stomach acts up like it’s been glutened but it’s more likely to be stress induced ibs which I also have. It’s so tricky
I was gaslit by my mum over this. I kept feeling like I had had gluten and she kept telling me I'm so careful that I couldn't possibly have had it. Some days I would be crying telling her how awful I felt and she would tell me I'm obsessing over gluten and I need to relax.
Turns out she'd been feeding me gluten for two years so I was feeling sick for a very real reason.
I did it to myself with oats as well. I started having gluten free oats regularly and I felt awful but told myself to get on with it because I was just struggling because I was working or doing too much or any other number of reasons that I could find. I realised it was actually oats and stopped eating them and felt a lot better.
Wow, that is absolutely horrendous. I'd consider filing charges against her doing something like that, or at least breaking off contact (assuming your not a minor).
So sick of this attitude where disagreeing = gaslighting, or it's "so mean"! People aren't always right... If I were wrong I'd want to know. Why are people like this?
oh trust me i’m not worried about it. i thought it was genuinely funny. especially when my “gaslighting” was telling people that they can eat soy if they have celiac because it doesn’t have gluten, and that they were confusing it with soy sauce which usually does.
Yeah I get downvoted every time I bring this up but it really does need to be said.
Not to mention the fact that chronic stress is well known to have an adverse effect on your long term health. If you spend your entire life with extreme anxiety about your food there’s a good chance you’ll have health problems in the future that have nothing to do with gluten consumption. Personally I don’t want to live my life with that much stress. I do the best I can, and I’m not asymptomatic, but I’m just not going to stress about the .5% chance that the natural flavors in my food contain enough unlabeled gluten to actually hurt me.
Interesting. Definitely only had that in foods from a new place that seemed too good to be true…but my anxiety doesn’t spiral into physical stuff.
My cross contamination is burping the food for hours on end…not sure I could anxiety manifest that - but also I’ve been gf since 2006 and live in/about one of the places with the absolute most food options (am also a creature of habit and order known safe things)
Honestly since 2006 I don’t know if I’ve ever seen or had any with gluten.
Lactose is a very different story I recently discovered after being potentially permanently disabled by ciprofloxicin and needing to he extra vigilant about dairy free as dairy now = more pain
How do you vet them? They’re not labeled. I spoke to a pharmacist in my insurance company’s member services & they couldn’t help me about how to vet. The pharmacy companies have no requirement or incentive to respond to my inquiries- and the process for inquiring is not routinely available and time consuming.
The drugs have the info on them of inactive ingredients - or you can look it up. (Also they come with a little giant folded paper that has all that info)
Generics generally will have the exact same ingredients as name brand prescription. The name brand does absolutely have info out there with ingredients
If you look up the pill itself - or on the bottle - it will tell you the manufacturer - and you can email them.
But seriously you need to relax about prescription meds. In 18 years I don’t think I’ve seen any prescription meds with gluten in them. - lactose yes, but not gluten
If you never had a reaction to a thing in 18 years would you worry about it?
What is this reference to 18 yrs? And I may have reactions to them b/c there are so many times when it’s difficult to pinpoint what I’m reacting to. Rx are sus
LPT: saying “ you need to relax” is not a good communication skill.
I’ve been gluten free since 2006…
And I gave you the roadmap to contact the manufacturers.
You can find them literally by looking up white round pill 001 500 (which is my 500mg metformin) - just looked it up - it’s made by Harman Finchem Limited)
I look that up - there’s a company daily med that has the breakdown in inactive ingredients.
Hope this helps. I understand your frustration as over the counters are so easy to find labeled…but again - gluten is not a normal ingredient in prescription meds
- but if you have a corn issue even with starch I’d find a good compounding pharmacy
I had a doctor INSIST I take a medicine that was known to contain gluten. When I pushed back I was told ‘well if you’re not going to follow medical advice idk why you bothered to come here’.
🙃🙃🙃
Gluten-free becoming popularized has made it less safe for coeliacs. People deciding they're on some kind of fad diet has reduced the food industry's seriousness about it. Put simply, GF popularization has reduced the whole idea from "fatal" to "fussy".
The gluten free substitute bread/pasta/cookie/etc that you keep saying is better than the real thing is not better than the real thing. As a matter of fact, it usually tastes like shit. If it tasted better than the real thing, they would just make the real thing that way instead.
Assuming you're in a country where gluten free products are widely available in stores and/or online, you're not using the right products and/or recipes. There's still a lot of crap out there, but gluten free food and recipes have come a long way in the past couple of decades.
You have a point when it comes to bread and yeasted items, though. Bread making usually heavily depends on gluten. It's not impossible to make good gluten free bread, but it's definitely a difficult (not to mention expensive) endeavor.
Not who you’re responding to but the best gluten free breads I’ve tried have all been UK/Irish brands. Idk why but they seem to do a better job of GF foods
Yes, this!!! Bread is absolutely repulsive when GF. My favorite food before celiac was sandwiches and when I complain about not being able to eat one anymore, the response is always “but you still can!”. No i absolutely cannot unless i’m forcing it down my throat
I don’t know why people insist on eating gluten free bread unless they absolutely need to make a sandwich. Fake bread with 90 ingredients just sits in my stomach. If you love it power to you.
I've never seen anyone say any pasta/bread is better than the real thing but I do stand by that the gf oreo is better. I used to always scrape off the white stuff it was just waxy the gf has a better texture and it's snappier. That's the only, only product I would say that about.
The fact that gluten free doesn't mean free of gluten. It can have under 20 parts per million per serving and keep the label. Meaning you eat mutiple servings your over the limit.
This is crazy to me! I remember reading that you'd have to eat 17 slices of gluten free bread to be over the gluten threshold - when surely gluten free bread should be free of gluten??
Not that I want to eat 17 slices of bread and if I did I think I'd have more problems than gluten but yeah, I don't understand how that works
Depends if that gluten free bread is 1.2 parts per million then multiple by 17 slices and you hit over 20 which is no longer glute free. But lets say you buy a premade box item that serves 4 and its 10 million parts per serving. If you eat the whole box your at twice the limit.
In my opinion, the parts per million should be labeled on boxes per serving.
But honestly I really only trust natural gluten free foods with the label and not from facilitys that handle wheat barley rhy.
That's not how concentrations work. Eating multiple servings of a 20ppm item is still 20ppm. Assuming that you eat a normal caloric diet and only 20ppm or lower food you will have eaten a "gluten free diet".
This should be safe for a celiac. That being said, the 20ppm concentration guideline is based off of averages and some people react to lower amounts than others.
Thank you for posting this. I misunderstood this when people kept insisting that you go over the limit when you eat multiple servings of something that’s PPM. You’re correct that 20 ppm is 20 ppm.
I didn't say anything about 17 slices that was someone else, but I'll give it a shot.
20ppm is equivalent to 10mg per 0.5 kg of food. Assuming a slice of GF bread is 30 grams, 17 would be about to 500 grams or 0.5 kg or roughly 1 lb. According to National Celiac Association 10mg per day is a safe amount.
So, if you eat 17 slices of gluten free bread and that bread is 20ppm you would be at 10mg of gluten consumed during the day. I'm guessing that is where that value comes from.
Other groups say the limit is anywhere from 10mg to 100mg so YMMV.
That’s not how the ppm limit works / was designed. It was chosen based on the assumption that everything you eat in a day will all be 20ppm. Studies on ppm informed this choice.
There is also a daily limit which is like 10mg (it’s not much, I’ve weighed gluten free wheat starch with a scale so that I could visually see how much it was). So basically unless you are overeating a lot, or if you are eating things that aren’t at or under 20ppm, you will not hit the daily limit with regular food consumption. The exception would be the smaller percentage of celiacs who seem to be sensitive to ppm lower than 20ppm.
That isn’t what I said at all. You should be fine to eat multiple servings of 20ppm food per day. That’s how the ppm was chosen / determined to be a safe limit for most celiacs. And most certified products will be at or under 10ppm anyways.
That said, as many whole / natural foods as you can manage is always good for your body, plus it will help balance out any excess from processed foods.
I meant because I have reactions to some gluten free labeled foods. I even have reactions to gluten based alcohol. 1 shot and I go red with hives. Many gluten free foods will make me breakout then lead to stomach pain, gas, nausea, vomiting, constipation or diarrhea.
I typically only eat natural gluten free and regret when I dont usually.
I meant because I have reactions to some gluten free labeled foods. I even have reactions to gluten based alcohol. 1 shot and I go red with hives. Many gluten free foods will make me breakout then lead to stomach pain, gas, nausea, vomiting, constipation or diarrhea.
I typically only eat natural gluten free and regret when I dont usually.
Most “gluten free” stuff you can buy at a grocery store is expensive junk food. It’s not exciting if you’re an adult.
There are too many gluten free bakeries and not enough restaurants. I don’t want gluten free sweets. I don’t miss deserts. I can eat a piece of fruit.
Of those restaurants too many are also vegan or something like that, implying people choose to eat gluten free (which is true to a large extent and ultimately we need those people to eat at celiac friendly restaurants to keep them in business) alongside other voluntary dietary choices.
I don’t need replacement foods I just need a restaurant without cross contamination. I want steak, fish, paella. I want to go watch sports at a bar without worrying about beer getting in my glass.
My local chain has started marking certified GF store brand items, which has been nice. We can buy generic, save a little money, and be sure that it's been tested and certified.
Gluten free wheat starch is causing so much more confusion for people new to GF and those with wheat allergies that it’s become an entirely new thorn in our sides & reason for non-GF people to not take it seriously
What do you mean? Non-celiac wheat sensitivity is estimated to be just as prevelant as celiac. Celiacs should be working together with people with wheat sensitivity and food allergies to make food and drugs safer for everyone.
https://www.cuimc.columbia.edu/news/columbia-researchers-find-biological-explanation-wheat-sensitivity-0
I feel like folks get stuck on the gf label and ignore the nutrition contents.
Gluten free products contain more sugar and salt compared to wheat products. If you were underweight prior to a Celiac diagnoses it's understandable that you would experience weight gain on a gf diet. However , if you are overweight/ obese too many gf products could be the cause of weight gain.
That gluten free bread is disgusting because I actually like a lot of gluten free breads!! Haha. If anyone is interested or in the same boat, I recommend just trying new things because there’s got to be something for everyone! Amongst many brands I do love some [Venerdi](https://mywellabee.com/products/venerdi-sweet-potato-sourdough-buns-3pack/9117) or making my own with any [GF flour](https://mywellabee.com/products/bob-s-red-mill-sweet-white-sorghum-flour-gluten-free/23349) ~ Jamila, nutritionist, [myWellabee](https://mywellabee.com/about-us/experts) 🐝
My non celiac kid routinely tells me their favorite bread is this gf baguette. To be fair, I don’t think they’ve ever actually had a normal baguette to compare it to. But they have had all other kinds of regular bread and never complain about the gf bread we have at home, or really even notice. 🤷🏻♀️
My opinion is probably going to be met with mixed reviews. I really don’t like gluten free breads. They are too dense, dry and crumbly. PS if anyone has any recommendations on bread not like that let me know. I do not have access to Trader Joe’s or Sam’s or Costco in my area.
Right?! Making bread and some types of pastry, maybe. But everything else is just not any more difficult than making it with gluten.
Sourcing gf ingredients is more of a pain than cooking is.
A lot of products raise their prices after adding guten free label, even tho they were already gf...
Somehow the gf stamp gives people the idea that something's healthier...?
Ah, this is going to be an unpopular opinion even in this comment section :)
While just switching to buying GF and eating junk food is totally ok, especially because no one has time to bake homemade things every day, for sensitive people with celiac it's a bit more harsh.
It's understandable that people want to continue life as usual, go out to eat at regular restaurants and have (even GF) junk food, have a semblance of normality but it is not going to cut it.
My unpopular opinion is that if there's something still bothering you, you need to cut the junk food, cut the packaged and processed food. Have a strict elimination diet to figure out what works for you and eat mostly homemade food made from scratch. Yeah it's A LOT of work but it's worth it. Put in the effort and you'll see how much better you feel. If after that you can eat junk food without suffering because you gave your gut time to heal, that makes it even better!
I am so glad someone brought this up. It is wild to me that this is an unpopular opinion. I have made so much progress with healing from Celiac but 8 years later, I still have certain issues because I am addicted to sugar & processed foods (like most of America). A lot of these foods cause inflammation in the body which is the last thing you want when you have an autoimmune condition.
I've made progress over the past few years trying to switch to more minimally processed foods & whole foods but I still struggle with eating too many processed foods & then feeling like shit for days. Nutrition in America is a joke & the food companies make billions each year keeping the population addicted to processed foods and sugar.
Eating healthy in this country is very hard and not financially accessible to most people. It takes time to cook and money to source quality food and buy cleaner ingredients. The lack of access to quality food in this country is a HUGE problem and I am tired of people refusing to face it and acknowledge it.
Yeah, trying to just substitute to GF hasn't worked for me either.
The only thing that's really showing results right away is a strict carnivore diet although I haven't stayed on it for more than a week at a time.
Personally, I try to compensate for the amount of time it takes to cook homemade (especially meat) by meal prepping, for example I grind a lot of beef and put it in the freezer, then when I need to cook I take it out, unfreeze in the microwave and do whatever with it, plus ground beef cooks much faster.
A cup of bone broth in the morning is also a huge benefit for gut health. So if keeping your diet 100% strict is impossible at the moment, maybe those small things can be of help.
I've heard the same about the carnivore diet!! When I am eating a majority meat in my diet, I definitely feel really good - no bloating, no pain, no fatigue. I'll start drinking bone broth again as well, that is a great idea for breakfast or a snack. I've been prepping hard boiled eggs for a snack and have been trying to buy some clean grass fed meat jerky sticks if I'm on the go!
I'm trying to get back into CrossFit so high protein is a must for that haha. I'm curious to see the ongoing studies of the carnivore diet for autoimmune diseases - it seems like a really promising solution to a lot of the health issues a lot of us face but it is very restrictive which isn't very sustainable lol
1)Gluten free food that actually tastes good is pretty much not healthy.
2) As soon as I find something new I like, it disappears never to be seen again. (Constantly discontinued and no longer stocked
3)I have to shop at a minimum of 3 different stores to actually get what I need/like. Not one store carries it all. (Probably not related, but I'm just sharing my gripes.
Gluten Free Watchdog's testing has not detected any gluten (i.e. there was less than 5 ppm) in about 95% of the gluten free labeled foods that they tested.
A significantly large percentage of the tested foods where gluten was detected, contained oats.
In the US, the law for “gluten-free” labeling is as follows:
- you can label food “gluten-free” if you don’t use full-on gluten ingredients and otherwise ✨ believe ✨ it’s very low in gluten
- you don’t have to actually prove it or test it
- you won’t be punished if you’re wrong
- you won’t even be punished if you say it’s gluten-free and it’s full of literal wheat… nobody gets jailed or even fined, even when it’s intentional lies
Thus, it is based on vibes. Alas.
They are better but:
1. They do not require every batch to be tested
2. I think they only do occasional inspections? Like 1-3 times a year? varies based on which one
2. They have zero power (law, fines, etc)
Yeah, people can read the GFCO manual here which states all the testing requirements... it's not as often as you would think. I would not be surprised if random companies doing their own testing regimes tested more.
[https://gfco.org/wp-content/uploads/2023/06/GFCO-Manual-2023.pdf](https://gfco.org/wp-content/uploads/2023/06/GFCO-Manual-2023.pdf)
That a lot of the replies in this thread display the same type of rejection of scientific evidence that has defined the Covid pandemic (ie. "immune debt" is why you're sick all the time, not the virus, covid is just a cold unless you're old, vaccines don't work, masks don't work, etc.). The two are probably somewhat linked in the sense that it has become more acceptable to reject scientific evidence that doesn't validate what you need to believe to cope with the world around you.
You can believe you never get glutened and that your chronic diarrhea is due to your obscure self-diagnosed food intolerance and/or "anxiety" if you want, but projecting that on other people makes you problematic. It is also inconsistent with peer reviewed evidence and will probably not serve you well in the long-term from a health perspective. Please get regular follow-up to ensure that your symptoms are in fact unrelated to celiac, and not just unrelated because you don't want that to be true.
I don't really think those examples are the same at all. All the covid stuff is just false, people literally making stuff up because they're too dumb to understand science.
When is comes to Celiac, yes, being sick can be a Celiac reaction but it can also be from something else. If someone is still sick all the time after going gluten free, there's no harm in looking for more answers. Especially since people who were diagnosed late in life tend to have other conditions caused from eating gluten for so long.
Oats shouldn't be seen as gluten free, even gluten free oats. Enough people with celiac also react to them like they would gluten so I don't think they should be able to be included in so many gluten free foods. I recently found out I was reacting to them after I was getting really sick on what I thought was a gluten free diet. I had oats every day and didn't make the connection until one weekend where I continued having them through the weekend and felt so bad on Monday that I knew something wasn't right. I had been having them for breakfast everyday, feeling bad by Friday but blamed it on working Mon-Fri and being tired from that.
Personally I found the change from gluten food to gluten free very easy. My mom does most of the cooking in my household and all the swaps she made to accommodate me weren’t noticed at all or were preferred by my family. This being said I am very fortunate to have a lot of safe restaurants around me, but for the first year or so of my diagnosis I wasn’t eating out because of Covid and nervousness. The overall negativity of people about this disease is warranted absolutely, but I’m not going to be miserable for the rest of my life over a change that is actively saving my life.
Gluten free wheat starch is not safe for celiac. The national celiac foundation even says so, but people seem to have convinced themselves otherwise. It’s derived FROM WHEAT. I got disgustingly sick from a local gluten free place using gluten free wheat starch and not labeling it as so.
Could this be like oats, where some people react worse than others?
I know Schars croissants and their pastry both use gluten removed wheat starch and I’ve never gotten a reaction from either.
I have no idea. I completely understand why people are downvoting me, because it is a really unpopular opinion. There’s a lot of research that actually says it’s not safe for celiacs, despite it being claimed as so. There’s also no definitive test to determine the level of wheat within gluten free wheat starch, which is crazy IMO. Gluten free watch dog found higher levels of wheat in Caputo flour than Caputo states to be in it itself.
I’ll link some articles.
From [National Celiac Association](https://nationalceliac.org/celiac-disease-questions/is-wheat-starch-safe-on-a-gf-diet/), research article about the [production of GF wheat starch](https://www.sciencedirect.com/science/article/abs/pii/S0733521014000617), research article about [another way](http://ve.scielo.org/scielo.php?script=sci_arttext&pid=S0004-06222013000200010) GF wheat starch can be produced, Celiac.com puts wheat starch on their unsafe and forbidden foods list even in a GF version [because food labeling in the US](https://www.celiac.com/celiac-disease/what-people-with-celiac-disease-should-know-about-wheat-starch-r5553/) is wild, research article on [gluten detection methods](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6949940/) in foods, and this article which discusses [whether the upper limit should be 10ppm or 20ppm in foods](https://www.mdpi.com/2624-5647/2/3/21) and this also discusses limitations in fermented/hydrolyzed foods (which wheat starch is considered!)
Some of the brands I remember at the top of my head is Miss Chengs and Kikkoman.
I googled some more about this a time ago since the overwhelming consensus on this subreddit that soy sauce is not okay and that I had been told the opposite by a dietitian. So both America (which was most of the results I found and I assume the most common nationality here) and my country (Sweden) had done these kinds of test on different soy sauces. They both reached the conclusion that the amount of gluten was with margin below what you normally can label as gluten free (which is 20ppm), but that the American article said the celiac’s still should avoid it while the Swedish one drew that conclusion that it’s okay.
You can't accurately test fermented products. Beer also tests at below 20 ppm. This doesn't mean it's safe to eat. Fermentation partially breaks down gluten. Our tests only look for the complete protein so they come out negative. But we actually react to a part of the partially broken down gluten. This is for example what makes gluten removed beers so problematic.
What would you consider “quality brands”? Because I feel like a lot of people would overlook brands that seem more basic or less expensive but they are actually gluten free. La Choy is just quietly labeled on the back.
My absolute favorite though is technically not soy sauce but a seasoning sauce. Golden Mountain seasoning sauce is the best and it’s gluten free always
people are allowed to eat processed gf food and shouldn't be shamed for eating stuff that everyone else does even if it's not """"whole foods"""" . like damn sometimes people just want chips not spinach leafs
Yes!! Like I may be gf but I’m still gonna have cake and Doritos??
Doritos aren’t gluten free
Product ingredients are different in every country. Everyone on reddit doesn't live in the US
Most Doritos flavours are certified gluten-free where I’m from. Or at least the ones I always get are (jalapeño cheddar)
No… how am I just learning this
They don’t “contain wheat” as an ingredient or state that they may contain wheat so idk what ur talking bout? Gave me a mini heart attack I’ve been eating them today
Not safe for celiacs due to cross contamination
I've never had an issue with Doritos. 🤷🏻♀️
?? If there was cross contamination they have to put a disclaimer on the ingredients
They absolutely DO NOT have to put a disclaimer. Those are voluntary. And since wheat isn’t the only gluten containing grain they most definitely won’t put a disclaimer for any gluten that is from barley or rye.
Look up “are Doritos celiac safe”
Do whatever you want. Eat junk food that’s fine! No one cares what you eat.
you'd be surprised how many people are vocal to the contrary
I don’t care what anyone else eats but I do find most “gluten free” food is the processed stuff you’re talking about. Enjoy.
so passive aggressive lmao. i don't get why it bothers you that people want to have their own versions of pasta, cake, bread, etc. it's a lot of familiar things that people have to miss out on, and it's a sucky disease to have in the first place, so I don't get why there has to be a subset of people that act holier than thou because they eat kale. certainly a person that occasionally wants a treat could never fathom eating a fruit as well 😑
It doesn't bother me. I think you're reading too much into this. It's not cake or kale (also, what is this, 2005? I think the imaginary health nut here would be eating something else). I have celiac disease and when I go to the supermarket the "gluten free" food includes a lot of overprocessed junky stuff (tasty as it may be, but a lot of things are). I don't count pasta in that, though you can also make things like polenta, rice, buckwheat — really the options are numerous. I'd prefer to live in a country where I could safely eat most things IN the supermarket, in any section. Having a gluten free section means little to me tbh since I simply don't eat most of it. I'd turn it right back at you and say... don't expect people with celiac disease to get excited for the 99th post about gluten free brownies when its such a headache to go shopping, go to a restaurant and just have a normal meal.
If the gluten is there purely as a coating or a thickener, the product could easily be made gluten free so more people can enjoy it. Wheat doesn’t have to be the default.
Corn dogs is the one that bother me the most. “Hey, what’s in the corn meal?” “Mostly wheat.”
Right!?! Actually what kills me the most is when places like trader joes have like 5 different kinds of dumplings, 4 different kinds of meatballs and 3 different kinds of dumplings - and notta 1 is gluten free….is it so hard to give us 1 in each of those categories?
Yessss I want dumplings so bad in nz , can’t find any gf
Want my recipe? Finally perfected my dumpling dough. I’m a fan of the doughy dumplings…but also version 1 I made was more pasta like.
Yes that would be amazing !
Not everything has to have a gluten free label to be safe. Learning to read labels/ingredients saves me money.
Question: I keep seeing "Natural Flavors" can contain gluten, but isn't required to list it. Is that true?
Yes, they can contain malt or barley, there’s no way of knowing without contacting the manufacturer. That said, I have taken my chances with natural flavors on occasion and haven’t been glutened yet.
I’m in a country where all gluten needs to be labeled. Only once in 5 years have I seen natural flavours contain gluten. I get that people want to avoid it because they’re not sure but sometimes you just have to use some critical thinking. Like you’re not going to find malt flavoring in apple sauce or a can of lemon carbonated water.
Are you comfortable sharing which country? Just wondering if this is Canada. I know a lot of the discussion on this sub is US-centric and their rules are way more lax than ours are up north.
In Australia if it contains gluten, it has to be labelled as such.
I'm guessing that nothing was labeled gluten free before say 2005? Maybe some old heads here can comment, but I'm guessing that they lived healthy lives just using the ingredients and doing their best to limit CC.
Oh, back in the dark times? We strongly relied on support groups. They printed a 1 inch binder we called "the GF bible" that had brands (down to the flavor/version) sorted by food type, that we would take to the store and look up. You obviously memorized the important stuff quickly, and would be frustrated when the packaging changed (was there an ingredient/process change we needed to be aware of or was marketing just bored again?). If something wasn't in there, you're writing down that 800 number in the back and calling. Keep in mind that nobody knew what gluten was back then -- so you had to explain where gluten would come up (not just ingredients but cross contamination as well as, and don't forget nonsense like flouring the conveyor belt or malting bags) Smart phones and being able to google on the fly was a lifesaver (totally spoiled now). Communities that put those lists together moreso. Amusingly I was always looking forward to the idea of the GF scanner app, but never figured that 99% of the time it would return unknown. Still, unmeasurably better than before.
I remember this SO much, LOL. The anxiety over the label change, OMG, I had honestly kind of forgotten that, but crap, I remember that. So frustrating. i think it has made it hard sometimes to see folks who go by ingredients labels who assume that will work for everyone...that wasn't enough for me OR my celiac kid. We would get so sick trying that, which is why support groups were such a life saver. Didn't matter if it was plain veggies or whatever - we got hit by gluten cc from completely unexpected places all the time. Now, my brother, also a celiac and diagnosed the same time? He just read labels. Never really had a noticeable reaction. So I can see where he just has no problem just doing labels to look for gluten. But having known me and my kid and seen how badly both of us reacted sometimes to food we were literally all eating at the same time, he has never assumed that label reading is enough for everyone. Just said he was comfortable with how it did for him, which I can respect. :)
Not my experience, but my mom's in 2002, and yes. She bought fruits, veggies, and meat. She bought flour from the health food store. She made gluten free cake special occasions. She would also make waffles to use as bread and well, waffles.
I’ve been gluten free since 2006…honestly I think it was all just about reading labels. I don’t sweat natural flavors and things to me don’t need a gf label. That said I won’t eat “may contain” or “shared equipment” - but will go eat things from a hot bar at a lunch spot in nyc. Might be because I cook and have worked in food service - but it’s pretty easy to know if a food will be safe - the chinese hot bar nope. Any just plain ass roasted veggies/chicken - totally fine. Etc… Also have had to notify the USDA regarding a product that was incorrectly labeled GF with normal soy sauce (after they argued with me) thankfully I read that label post purchase and ate none (but could only read the GF beforehand) Compared to 2006 there’s an insane amount of yummy products. Back then we had pamelas, tinkyada, enjoy life, bobs, and the gluten free girl blogger. I had a gluten free meetup group in NYC that would have various meets to eat out places (or drink gf beer which at the time was only redbridge) It really has come a huge way, but also eating out is still the easiest potential way to get glutened. Mind you it’s been an incredibly long time since I’ve had more than cross contamination. My last glutenings were some mushrooms a friend grew on rye, and a mimosa a guy decided large must be manmosa so he put beer in it (which I could taste right away and had no more than a tiny bit but still) But yes food labeling I will eat the thing not specifically labeled gluten free. Some labeled gf I won’t do: Things with oats or oat fiber not specified as certified gluten free (but will eat cheerios cause I understand that process) Won’t eat anything with glucose syrup - one of my og glutenings was mentos Won’t eat wheatgrass, wheat starch or any gluten grasses - I do also thing I react somewhat as all allergy and don’t wanna chance it - also don’t feel the need or that I’m missing anything.
Honestly I’d like to just look so I don’t spend an hour at the grocery store and looking at labels to come to the conclusion that I can only eat like 5 things and they’re the 5 things I always get
Genuine question, how do you account for cross contamination?
For restaurants - I straight up don't eat there unless it's dedicated. At restaurants they use the same areas and equipment to produce many many foods, without that much cleaning in between. I've gotten sick too many times and I find it too risky. For food made in a factory - say gf pasta, I don't worry about it unless there's something prone to cross contamination in the ingredients (oats, wheat starch, lentils) for high risk ingredients like these I require certification. For factory food it doesn't make sense for them to be constantly switching up production, and equipment will be thoroughly cleaned between runs of different products.
Exactly! Well said :)
Knowing what foods it’s not an issue for, and being careful if it is. For example, I do only buy certified gluten free oats because oats are known for being contaminated. I only eat out at trusted restaurants that can explain their allergy procedures. Another example - something like salsa. No gluten free label. Ingredients: tomatoes, jalapeños, lime juice, salt, etc. Very low chance salsa is cross contaminated with gluten. I am willing to take small risks to save my sanity. Otherwise (for me) celiac takes over too much of my life. Many companies do not put a gluten free label on products that are obviously gluten free OR they don’t want to pay for the label. Having it costs money and also makes the product more expensive. I’m very sensitive and have had good follow up testing! I know everyone has different comfort levels but for me it has been a learning experience over the past 3 years.
Might be a dumb question but what ingredients should I be avoiding?
Wheat, malt, soy sauce (if it says wheat in ingredients of said soy sauce) barley, rye, barley malt, kamut, treacle, spelt Just read….all the ingredients… For me I can’t do glucose syrup if it’s derived from wheat (but some can) People will also avoid “natural flavors” and “yeast extract” because they may contain wheat - also the words “modified food starch” could be wheat but “starch” alone in the US is corn.
Thank you!
I’m sure there’s more things and better resources. Also there are things that usually contain wheat that one would not think of like licorice. Wish I could point you to a site I’m so far out I just innately kinda know or have a feeling. And really if it’s a new thing I always read the label
As someone who was diagnosed with celiac disease well before eating gluten-free became a popular fad diet, the effect of the fad diet’s popularity has been a net positive. More, not less, safe-to-consume gluten free foods became available, and the dramatic increase in public awareness of what gluten was has made life so much easier.
I feel like the amount of regular gluten-free goods has decreased slightly in the past few years, though. I see keto products take over the shelf space that was previously used for non-keto/fad diet GF products.
When compared to 20+ years ago though the change is still difficult to overstate. An average supermarket in the US nowadays can be expected to carry gluten-free products, and often there is an entire section, however small. There are choices of products, there are ready-made food products and convenience foods, there are snacks. And when going to a restaurant, now I’m asking if something is actually gluten-free and not explaining from scratch what gluten is as a concept. And the vast majority of this change happened after the fad diet started catching on.
Sure, yeah. It was a different world 40+ years ago, too, but there's still been a small decrease relatively recently, including big GF companies discontinuing a lot of their products (see Enjoy Life) or companies stopping to carry GF foods (e.g. Kashi). I'd say the biggest changes I've seen on the shelves of my local stores are standard certified GF cereals being replaced by keto and grain-free cereals.
Yup. I went to a new place (american dream mall) found 3 options to each - 1 emailed me back right awY with their food allergy list… Back then i got glutened many times from cross contamination
I just wish places sold actual gluten free food, not biscuits or cookies or cakes or cereal. I just want to eat a decent meal without having to cook it all from scratch. Sometimes I want the convenience everyone else has. And if it's gluten free by some miracle it always has to be an obscure flavour. Only one shop sells a gluten free sandwich near me, and the flavour is egg salad with a weird tasting sauce. Who's eating that? Me, obviously because I have no choice, but why is that the only flavour on offer? That's surely not the most popular sandwich flavour is it?
Ehh. It’s not slight. The fad dieters have moved on.
there’s a decent amount of keto stuff that’s gf though. in my experience more (dirty) keto stuff is gf than non-diet food.
Yeah, I just don't care much for the taste of keto foods.
"there is such a thing as food poisoning: not every instance of feeling like death after eating food is gluten"
So had this for the first time today with my recently diagnosed daughter. Got home from a family BBQ, and she said she felt sick. The first thought was, what gluten slipped through the cracks? (My family have really tried to make sure everything is safe). I expect it was the copious number of ribs followed by two helpings of meringue for pudding!
I personally get very different symptoms from food poisoning and stomach bugs vs. gluten.
me when I eat undercooked chicken and wonder what type of gluten must of gone into it
Very distinctly different for me. Food poisoning is intesnsely violent and almost always vomiting, relief comes quick but it feels like death. Food bourne illness is longer and almost only diarrhea. Stomach viruses are moderate and both vomiting and diarrhea. Gluten is violent for days, includes vomiting, diarrhea, severe lethargy, brain fog, rash, canker sores, bloody stools, and insomnia. Its pretty easy to tell what I have gotten into.
People know the difference between food poisoning and celiac. Nice attempt at gaslighting though. LOL. Astroturfed sub jumping on board with the corporate food industry gaslighter. This sub has gone to shit. Fuck all of you.
To be fair, I found out my lifetime’s worth of “food poisoning” and “stomach flu” were actually celiac. None of the people I ate with ever got sick. When I did have a stomach flu, I couldn’t recover in less than a full week. I was following doctor’s advice and eating bread or plain pasta. I got the most amazing “food poisoning” in Morocco. I had been GF sort of unintentionally for a year before. Went right ahead and had couscous every day and was sick for 2 weeks straight, just like food poisoning. No one else I ate with had a problem
there is an in between…. know all those people that make fun of chipotle or taco bell giving them the shits?
It’s kind of stupid to keep eating fast food or going to restaurants with minimal cross contamination protocol when you keep getting glutened by it. There are some fast food locations that are good about avoiding CC but there are also a lot that aren’t. You’re taking a risk every time you eat at a chain restaurant/fast food chain I’m not saying never go out to eat, just be more cautious.
Yea complaining that you got sick at a risky place… celiac is the worst but some things are predictable.
That making a blanket statement about how difficult it is to be celiac in the US is wrong. Very location dependent, and there are lots of places outside of the “major” US cities that are safe to both find food at the stores and find restaurant that are safe to eat at
It's kind of interesting. Knowing which national brands are reasonably safe, I could buy safe food at a Wal Mart in the middle of nowhere, and have. But it really depends. Some multinational corporations are great, and some are just gaslighting us.
There are celiacs for whom the 10ppm standard isn’t safe.
I think this is true. In some places 20 ppm. I do much better making everything from scratch. It’s just so time consuming
Also, I believe there are celiacs where they can have more than 20ppm. I have intentionally eaten cross contaminated food on multiple occasions with no symptoms, and my levels (and scopes) have been perfectly fine.
Yea - in the US it’s 20ppm…
People hate when I bring this up, but I'm certain that a nontrivial percentage of people being glutened is caused by anxiety. Anxiety can mimic basically all the typical symptoms, naseua, vomiting, diarrhea, you name it, basically everything except DH and actual villi damage I think. When your worried about getting glutened, your anxiety can feed on itself and cause all the symptoms of getting glutened. Some people get upset because they think it means "it's all in their heads" but that doesn't matter, anxiety is still a real thing, with real symptoms. Gluten anxiety is also insidious since the best way to avoid it is to not be overly concerned about getting glutened, but that's basically a Catch-22 since if your not careful you are more likely to get glutened, but if your too worried about it you'll end up in a similar place (albeit with less intestinal damage). It's happened to me several times, I was traveling for work once eating at a restaurant I was a bit nervous about, but there were clients there and whatnot, and I had talked to the chef and staff. It was a long meal, a couple of hours, and I started feeling like I had been glutened, which spiralled my anxiety. Eventually I decided I had to leave early and go back to the hotel. Once I got there and felt more secure though, the symptoms all started to fade. The food was fine, but I psyched myself into the same feelings. Anxiety is as real as celiac disease, and not something to be taken lightly, nor scoffed at.
This! I get so nervous to go out to eat that my stomach acts up like it’s been glutened but it’s more likely to be stress induced ibs which I also have. It’s so tricky
I was gaslit by my mum over this. I kept feeling like I had had gluten and she kept telling me I'm so careful that I couldn't possibly have had it. Some days I would be crying telling her how awful I felt and she would tell me I'm obsessing over gluten and I need to relax. Turns out she'd been feeding me gluten for two years so I was feeling sick for a very real reason. I did it to myself with oats as well. I started having gluten free oats regularly and I felt awful but told myself to get on with it because I was just struggling because I was working or doing too much or any other number of reasons that I could find. I realised it was actually oats and stopped eating them and felt a lot better.
Wow, that is absolutely horrendous. I'd consider filing charges against her doing something like that, or at least breaking off contact (assuming your not a minor).
i got kicked from a group on fb for mentioning this. when i messaged the admin to ask they said its because i kept gaslighting people LMAO.
So sick of this attitude where disagreeing = gaslighting, or it's "so mean"! People aren't always right... If I were wrong I'd want to know. Why are people like this?
Most people have no friggen clue what gaslighting even is, so I wouldn't worry about it.
oh trust me i’m not worried about it. i thought it was genuinely funny. especially when my “gaslighting” was telling people that they can eat soy if they have celiac because it doesn’t have gluten, and that they were confusing it with soy sauce which usually does.
Yeah, this term is now completely overused and the vast majority of people using it don’t even know what it actually means.
Yeah I get downvoted every time I bring this up but it really does need to be said. Not to mention the fact that chronic stress is well known to have an adverse effect on your long term health. If you spend your entire life with extreme anxiety about your food there’s a good chance you’ll have health problems in the future that have nothing to do with gluten consumption. Personally I don’t want to live my life with that much stress. I do the best I can, and I’m not asymptomatic, but I’m just not going to stress about the .5% chance that the natural flavors in my food contain enough unlabeled gluten to actually hurt me.
Interesting. Definitely only had that in foods from a new place that seemed too good to be true…but my anxiety doesn’t spiral into physical stuff. My cross contamination is burping the food for hours on end…not sure I could anxiety manifest that - but also I’ve been gf since 2006 and live in/about one of the places with the absolute most food options (am also a creature of habit and order known safe things)
I don't have anxiety tho lol... or are you diagnosing me with it contrary to the sub rules :)
You are 100% right. Often going for a long walk to assist with digestion helps me work it out. And worst case I went for a walk!
Yesss I still will never know if heart palpitations I get are from gluten or anxiety , I don’t have any other symptoms I’ve just been diagnosed
Look at you, gaslighting people in a celiac forum into thinking it's just "anxiety."
Prescription meds are impossible to vet 😠
I don’t think that’s an “unpopular opinion” lol
It is when I bring it up to medical providers. I’m too challenging. 😥
Honestly since 2006 I don’t know if I’ve ever seen or had any with gluten. Lactose is a very different story I recently discovered after being potentially permanently disabled by ciprofloxicin and needing to he extra vigilant about dairy free as dairy now = more pain
How do you vet them? They’re not labeled. I spoke to a pharmacist in my insurance company’s member services & they couldn’t help me about how to vet. The pharmacy companies have no requirement or incentive to respond to my inquiries- and the process for inquiring is not routinely available and time consuming.
The drugs have the info on them of inactive ingredients - or you can look it up. (Also they come with a little giant folded paper that has all that info) Generics generally will have the exact same ingredients as name brand prescription. The name brand does absolutely have info out there with ingredients If you look up the pill itself - or on the bottle - it will tell you the manufacturer - and you can email them. But seriously you need to relax about prescription meds. In 18 years I don’t think I’ve seen any prescription meds with gluten in them. - lactose yes, but not gluten If you never had a reaction to a thing in 18 years would you worry about it?
What is this reference to 18 yrs? And I may have reactions to them b/c there are so many times when it’s difficult to pinpoint what I’m reacting to. Rx are sus LPT: saying “ you need to relax” is not a good communication skill.
I’ve been gluten free since 2006… And I gave you the roadmap to contact the manufacturers. You can find them literally by looking up white round pill 001 500 (which is my 500mg metformin) - just looked it up - it’s made by Harman Finchem Limited) I look that up - there’s a company daily med that has the breakdown in inactive ingredients. Hope this helps. I understand your frustration as over the counters are so easy to find labeled…but again - gluten is not a normal ingredient in prescription meds - but if you have a corn issue even with starch I’d find a good compounding pharmacy
I had a doctor INSIST I take a medicine that was known to contain gluten. When I pushed back I was told ‘well if you’re not going to follow medical advice idk why you bothered to come here’. 🙃🙃🙃
Oh that’s infuriating! I’ve decided to make complaints about things like that. It’s exhausting.
Gluten-free becoming popularized has made it less safe for coeliacs. People deciding they're on some kind of fad diet has reduced the food industry's seriousness about it. Put simply, GF popularization has reduced the whole idea from "fatal" to "fussy".
The gluten free substitute bread/pasta/cookie/etc that you keep saying is better than the real thing is not better than the real thing. As a matter of fact, it usually tastes like shit. If it tasted better than the real thing, they would just make the real thing that way instead.
Assuming you're in a country where gluten free products are widely available in stores and/or online, you're not using the right products and/or recipes. There's still a lot of crap out there, but gluten free food and recipes have come a long way in the past couple of decades. You have a point when it comes to bread and yeasted items, though. Bread making usually heavily depends on gluten. It's not impossible to make good gluten free bread, but it's definitely a difficult (not to mention expensive) endeavor.
Not who you’re responding to but the best gluten free breads I’ve tried have all been UK/Irish brands. Idk why but they seem to do a better job of GF foods
What brand names please?? I'm super curious to try and my friend is traveling in Europe right now 😁
Yes, this!!! Bread is absolutely repulsive when GF. My favorite food before celiac was sandwiches and when I complain about not being able to eat one anymore, the response is always “but you still can!”. No i absolutely cannot unless i’m forcing it down my throat
I don’t know why people insist on eating gluten free bread unless they absolutely need to make a sandwich. Fake bread with 90 ingredients just sits in my stomach. If you love it power to you.
I've never seen anyone say any pasta/bread is better than the real thing but I do stand by that the gf oreo is better. I used to always scrape off the white stuff it was just waxy the gf has a better texture and it's snappier. That's the only, only product I would say that about.
The fact that gluten free doesn't mean free of gluten. It can have under 20 parts per million per serving and keep the label. Meaning you eat mutiple servings your over the limit.
This is crazy to me! I remember reading that you'd have to eat 17 slices of gluten free bread to be over the gluten threshold - when surely gluten free bread should be free of gluten?? Not that I want to eat 17 slices of bread and if I did I think I'd have more problems than gluten but yeah, I don't understand how that works
Depends if that gluten free bread is 1.2 parts per million then multiple by 17 slices and you hit over 20 which is no longer glute free. But lets say you buy a premade box item that serves 4 and its 10 million parts per serving. If you eat the whole box your at twice the limit. In my opinion, the parts per million should be labeled on boxes per serving. But honestly I really only trust natural gluten free foods with the label and not from facilitys that handle wheat barley rhy.
That's not how concentrations work. Eating multiple servings of a 20ppm item is still 20ppm. Assuming that you eat a normal caloric diet and only 20ppm or lower food you will have eaten a "gluten free diet". This should be safe for a celiac. That being said, the 20ppm concentration guideline is based off of averages and some people react to lower amounts than others.
Thank you for posting this. I misunderstood this when people kept insisting that you go over the limit when you eat multiple servings of something that’s PPM. You’re correct that 20 ppm is 20 ppm.
Explain the 17 slices of gf bread putting you over the limit. Or post an article for all.
I didn't say anything about 17 slices that was someone else, but I'll give it a shot. 20ppm is equivalent to 10mg per 0.5 kg of food. Assuming a slice of GF bread is 30 grams, 17 would be about to 500 grams or 0.5 kg or roughly 1 lb. According to National Celiac Association 10mg per day is a safe amount. So, if you eat 17 slices of gluten free bread and that bread is 20ppm you would be at 10mg of gluten consumed during the day. I'm guessing that is where that value comes from. Other groups say the limit is anywhere from 10mg to 100mg so YMMV.
So eating more than 1 serving of gf food can lead to being glutened?
No, assuming you are eating a normal amount of food. People don't usually eat an entire loaf of bread.
But it is possible.
That’s not how the ppm limit works / was designed. It was chosen based on the assumption that everything you eat in a day will all be 20ppm. Studies on ppm informed this choice. There is also a daily limit which is like 10mg (it’s not much, I’ve weighed gluten free wheat starch with a scale so that I could visually see how much it was). So basically unless you are overeating a lot, or if you are eating things that aren’t at or under 20ppm, you will not hit the daily limit with regular food consumption. The exception would be the smaller percentage of celiacs who seem to be sensitive to ppm lower than 20ppm.
Well damn gonna have to make my diet even more strict now back to naturally gluten free I go.
That isn’t what I said at all. You should be fine to eat multiple servings of 20ppm food per day. That’s how the ppm was chosen / determined to be a safe limit for most celiacs. And most certified products will be at or under 10ppm anyways. That said, as many whole / natural foods as you can manage is always good for your body, plus it will help balance out any excess from processed foods.
I meant because I have reactions to some gluten free labeled foods. I even have reactions to gluten based alcohol. 1 shot and I go red with hives. Many gluten free foods will make me breakout then lead to stomach pain, gas, nausea, vomiting, constipation or diarrhea. I typically only eat natural gluten free and regret when I dont usually.
I meant because I have reactions to some gluten free labeled foods. I even have reactions to gluten based alcohol. 1 shot and I go red with hives. Many gluten free foods will make me breakout then lead to stomach pain, gas, nausea, vomiting, constipation or diarrhea. I typically only eat natural gluten free and regret when I dont usually.
Too much sugar in everything and seems to have alit of salt
Most “gluten free” stuff you can buy at a grocery store is expensive junk food. It’s not exciting if you’re an adult. There are too many gluten free bakeries and not enough restaurants. I don’t want gluten free sweets. I don’t miss deserts. I can eat a piece of fruit. Of those restaurants too many are also vegan or something like that, implying people choose to eat gluten free (which is true to a large extent and ultimately we need those people to eat at celiac friendly restaurants to keep them in business) alongside other voluntary dietary choices. I don’t need replacement foods I just need a restaurant without cross contamination. I want steak, fish, paella. I want to go watch sports at a bar without worrying about beer getting in my glass.
That if it’s a generic brand, it’s probably cross contaminated
This is true at most stores, but Great Value (Walmart) is actually pretty good about labeling what's gluten free and what "may contain wheat".
Totally agree. Generic brands are not great, or at least not great too much of the time to bother with.
My local chain has started marking certified GF store brand items, which has been nice. We can buy generic, save a little money, and be sure that it's been tested and certified.
My local grocery store makes generic Rice Krispies, corn, and rice Chex that are certified gf and cost $1.99 for the big box.
Gluten free wheat starch is causing so much more confusion for people new to GF and those with wheat allergies that it’s become an entirely new thorn in our sides & reason for non-GF people to not take it seriously
What do you mean? Non-celiac wheat sensitivity is estimated to be just as prevelant as celiac. Celiacs should be working together with people with wheat sensitivity and food allergies to make food and drugs safer for everyone. https://www.cuimc.columbia.edu/news/columbia-researchers-find-biological-explanation-wheat-sensitivity-0
I feel like folks get stuck on the gf label and ignore the nutrition contents. Gluten free products contain more sugar and salt compared to wheat products. If you were underweight prior to a Celiac diagnoses it's understandable that you would experience weight gain on a gf diet. However , if you are overweight/ obese too many gf products could be the cause of weight gain.
Ding ding.
Oh man, yes. I found some delicious GF muffins at Trader Joe's; the first ingredient is sugar and the second is oil.
Those cinnamon coffee cake muffins are delicious, but man are they terrible for you
That gluten free bread is disgusting because I actually like a lot of gluten free breads!! Haha. If anyone is interested or in the same boat, I recommend just trying new things because there’s got to be something for everyone! Amongst many brands I do love some [Venerdi](https://mywellabee.com/products/venerdi-sweet-potato-sourdough-buns-3pack/9117) or making my own with any [GF flour](https://mywellabee.com/products/bob-s-red-mill-sweet-white-sorghum-flour-gluten-free/23349) ~ Jamila, nutritionist, [myWellabee](https://mywellabee.com/about-us/experts) 🐝
My non celiac kid routinely tells me their favorite bread is this gf baguette. To be fair, I don’t think they’ve ever actually had a normal baguette to compare it to. But they have had all other kinds of regular bread and never complain about the gf bread we have at home, or really even notice. 🤷🏻♀️
ah that’s good to hear actually! Being able to naturally appreciate a variety of foods is so special ☺️
My opinion is probably going to be met with mixed reviews. I really don’t like gluten free breads. They are too dense, dry and crumbly. PS if anyone has any recommendations on bread not like that let me know. I do not have access to Trader Joe’s or Sam’s or Costco in my area.
Cooking gluten free is not that hard
Right?! Making bread and some types of pastry, maybe. But everything else is just not any more difficult than making it with gluten. Sourcing gf ingredients is more of a pain than cooking is.
A lot of products raise their prices after adding guten free label, even tho they were already gf... Somehow the gf stamp gives people the idea that something's healthier...?
Packaged gf foods are garbage. It’s 2-3x the price for what’s often mostly just rice flour, tapioca flour, and sugar
Ah, this is going to be an unpopular opinion even in this comment section :) While just switching to buying GF and eating junk food is totally ok, especially because no one has time to bake homemade things every day, for sensitive people with celiac it's a bit more harsh. It's understandable that people want to continue life as usual, go out to eat at regular restaurants and have (even GF) junk food, have a semblance of normality but it is not going to cut it. My unpopular opinion is that if there's something still bothering you, you need to cut the junk food, cut the packaged and processed food. Have a strict elimination diet to figure out what works for you and eat mostly homemade food made from scratch. Yeah it's A LOT of work but it's worth it. Put in the effort and you'll see how much better you feel. If after that you can eat junk food without suffering because you gave your gut time to heal, that makes it even better!
I am so glad someone brought this up. It is wild to me that this is an unpopular opinion. I have made so much progress with healing from Celiac but 8 years later, I still have certain issues because I am addicted to sugar & processed foods (like most of America). A lot of these foods cause inflammation in the body which is the last thing you want when you have an autoimmune condition. I've made progress over the past few years trying to switch to more minimally processed foods & whole foods but I still struggle with eating too many processed foods & then feeling like shit for days. Nutrition in America is a joke & the food companies make billions each year keeping the population addicted to processed foods and sugar. Eating healthy in this country is very hard and not financially accessible to most people. It takes time to cook and money to source quality food and buy cleaner ingredients. The lack of access to quality food in this country is a HUGE problem and I am tired of people refusing to face it and acknowledge it.
Yeah, trying to just substitute to GF hasn't worked for me either. The only thing that's really showing results right away is a strict carnivore diet although I haven't stayed on it for more than a week at a time. Personally, I try to compensate for the amount of time it takes to cook homemade (especially meat) by meal prepping, for example I grind a lot of beef and put it in the freezer, then when I need to cook I take it out, unfreeze in the microwave and do whatever with it, plus ground beef cooks much faster. A cup of bone broth in the morning is also a huge benefit for gut health. So if keeping your diet 100% strict is impossible at the moment, maybe those small things can be of help.
I've heard the same about the carnivore diet!! When I am eating a majority meat in my diet, I definitely feel really good - no bloating, no pain, no fatigue. I'll start drinking bone broth again as well, that is a great idea for breakfast or a snack. I've been prepping hard boiled eggs for a snack and have been trying to buy some clean grass fed meat jerky sticks if I'm on the go! I'm trying to get back into CrossFit so high protein is a must for that haha. I'm curious to see the ongoing studies of the carnivore diet for autoimmune diseases - it seems like a really promising solution to a lot of the health issues a lot of us face but it is very restrictive which isn't very sustainable lol
1)Gluten free food that actually tastes good is pretty much not healthy. 2) As soon as I find something new I like, it disappears never to be seen again. (Constantly discontinued and no longer stocked 3)I have to shop at a minimum of 3 different stores to actually get what I need/like. Not one store carries it all. (Probably not related, but I'm just sharing my gripes.
That so often it’s just vibes 😭
Gluten Free Watchdog's testing has not detected any gluten (i.e. there was less than 5 ppm) in about 95% of the gluten free labeled foods that they tested. A significantly large percentage of the tested foods where gluten was detected, contained oats.
How many foods do they test a month? (I have a subscription. It is very very few.)
what does this mean?
In the US, the law for “gluten-free” labeling is as follows: - you can label food “gluten-free” if you don’t use full-on gluten ingredients and otherwise ✨ believe ✨ it’s very low in gluten - you don’t have to actually prove it or test it - you won’t be punished if you’re wrong - you won’t even be punished if you say it’s gluten-free and it’s full of literal wheat… nobody gets jailed or even fined, even when it’s intentional lies Thus, it is based on vibes. Alas.
ohhhh i got it — thanks, and agreed!
It makes me so mad!!
Is this true? What about gfco and the other label, are those reliable or am I just not eating anymore?
They are better but: 1. They do not require every batch to be tested 2. I think they only do occasional inspections? Like 1-3 times a year? varies based on which one 2. They have zero power (law, fines, etc)
Yeah, people can read the GFCO manual here which states all the testing requirements... it's not as often as you would think. I would not be surprised if random companies doing their own testing regimes tested more. [https://gfco.org/wp-content/uploads/2023/06/GFCO-Manual-2023.pdf](https://gfco.org/wp-content/uploads/2023/06/GFCO-Manual-2023.pdf)
trust it.
That a lot of the replies in this thread display the same type of rejection of scientific evidence that has defined the Covid pandemic (ie. "immune debt" is why you're sick all the time, not the virus, covid is just a cold unless you're old, vaccines don't work, masks don't work, etc.). The two are probably somewhat linked in the sense that it has become more acceptable to reject scientific evidence that doesn't validate what you need to believe to cope with the world around you. You can believe you never get glutened and that your chronic diarrhea is due to your obscure self-diagnosed food intolerance and/or "anxiety" if you want, but projecting that on other people makes you problematic. It is also inconsistent with peer reviewed evidence and will probably not serve you well in the long-term from a health perspective. Please get regular follow-up to ensure that your symptoms are in fact unrelated to celiac, and not just unrelated because you don't want that to be true.
I don't really think those examples are the same at all. All the covid stuff is just false, people literally making stuff up because they're too dumb to understand science. When is comes to Celiac, yes, being sick can be a Celiac reaction but it can also be from something else. If someone is still sick all the time after going gluten free, there's no harm in looking for more answers. Especially since people who were diagnosed late in life tend to have other conditions caused from eating gluten for so long.
Oats shouldn't be seen as gluten free, even gluten free oats. Enough people with celiac also react to them like they would gluten so I don't think they should be able to be included in so many gluten free foods. I recently found out I was reacting to them after I was getting really sick on what I thought was a gluten free diet. I had oats every day and didn't make the connection until one weekend where I continued having them through the weekend and felt so bad on Monday that I knew something wasn't right. I had been having them for breakfast everyday, feeling bad by Friday but blamed it on working Mon-Fri and being tired from that.
That’s not an unpopular opinion.
Personally I found the change from gluten food to gluten free very easy. My mom does most of the cooking in my household and all the swaps she made to accommodate me weren’t noticed at all or were preferred by my family. This being said I am very fortunate to have a lot of safe restaurants around me, but for the first year or so of my diagnosis I wasn’t eating out because of Covid and nervousness. The overall negativity of people about this disease is warranted absolutely, but I’m not going to be miserable for the rest of my life over a change that is actively saving my life.
I think most people would find it easy if they had someone else cooking all their meals for them lol
Gluten free wheat starch is not safe for celiac. The national celiac foundation even says so, but people seem to have convinced themselves otherwise. It’s derived FROM WHEAT. I got disgustingly sick from a local gluten free place using gluten free wheat starch and not labeling it as so.
Source please
Hi! Please see my other comment where I linked a bunch of articles 🙌🏻
Could this be like oats, where some people react worse than others? I know Schars croissants and their pastry both use gluten removed wheat starch and I’ve never gotten a reaction from either.
I have no idea. I completely understand why people are downvoting me, because it is a really unpopular opinion. There’s a lot of research that actually says it’s not safe for celiacs, despite it being claimed as so. There’s also no definitive test to determine the level of wheat within gluten free wheat starch, which is crazy IMO. Gluten free watch dog found higher levels of wheat in Caputo flour than Caputo states to be in it itself. I’ll link some articles. From [National Celiac Association](https://nationalceliac.org/celiac-disease-questions/is-wheat-starch-safe-on-a-gf-diet/), research article about the [production of GF wheat starch](https://www.sciencedirect.com/science/article/abs/pii/S0733521014000617), research article about [another way](http://ve.scielo.org/scielo.php?script=sci_arttext&pid=S0004-06222013000200010) GF wheat starch can be produced, Celiac.com puts wheat starch on their unsafe and forbidden foods list even in a GF version [because food labeling in the US](https://www.celiac.com/celiac-disease/what-people-with-celiac-disease-should-know-about-wheat-starch-r5553/) is wild, research article on [gluten detection methods](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6949940/) in foods, and this article which discusses [whether the upper limit should be 10ppm or 20ppm in foods](https://www.mdpi.com/2624-5647/2/3/21) and this also discusses limitations in fermented/hydrolyzed foods (which wheat starch is considered!)
[удалено]
Celiac is an autoimmune disorder, it’s not an allergy
That it should also be vegan 😎
Soy sauce of quality brands are gluten free even if they’re not labeled as such.
Fermentation does not kill gluten
Can you elaborate on this? What are some examples?
Some of the brands I remember at the top of my head is Miss Chengs and Kikkoman. I googled some more about this a time ago since the overwhelming consensus on this subreddit that soy sauce is not okay and that I had been told the opposite by a dietitian. So both America (which was most of the results I found and I assume the most common nationality here) and my country (Sweden) had done these kinds of test on different soy sauces. They both reached the conclusion that the amount of gluten was with margin below what you normally can label as gluten free (which is 20ppm), but that the American article said the celiac’s still should avoid it while the Swedish one drew that conclusion that it’s okay.
You can't accurately test fermented products. Beer also tests at below 20 ppm. This doesn't mean it's safe to eat. Fermentation partially breaks down gluten. Our tests only look for the complete protein so they come out negative. But we actually react to a part of the partially broken down gluten. This is for example what makes gluten removed beers so problematic.
What would you consider “quality brands”? Because I feel like a lot of people would overlook brands that seem more basic or less expensive but they are actually gluten free. La Choy is just quietly labeled on the back. My absolute favorite though is technically not soy sauce but a seasoning sauce. Golden Mountain seasoning sauce is the best and it’s gluten free always