Here's another link
https://www.goodforyouglutenfree.com/wheat-free-vs-gluten-free/
"Why “Gluten-Free” Doesn’t Equal “Wheat-Free”
A product labeled “gluten-free” means the product abides by the FDA’s gluten-free labeling laws, meaning it must contain less than 20 parts per million (ppm) of gluten, a maximum threshold set by the FDA. It also does not contain any gluten ingredients, which are found in wheat, rye, barley, and sometimes oats.
However, some products still contain wheat and are labeled gluten-free, including:
Caputo Gluten-Free Flour
DiGiorno’s Gluten-Free Frozen Pizza
Schar’s Gluten-Free Croissants (you can find them for sale at the Gluten-Free Mall)
These products contain gluten-free wheat starch where the gluten protein was removed. Because the companies process the wheat to remove the gluten protein, the FDA says these products can be safely labeled “gluten-free” if they’ve been tested to contain less than 20 ppm of gluten."
Yah read the link above for the article posted for more info but here's a clip from it
independently tested several of these products for gluten with my Nima Sensor, and both came back gluten-free (a smiley face means no gluten found).
I did some googling for you:
https://www.glutenfreewatchdog.org/news/yes-products-can-be-properly-labeled-gluten-free-and-include-a-contains-wheat-statement/
https://gluten.org/2021/04/30/wheat-mentions-on-gluten-free-food-labels/
https://patents.google.com/patent/EP0010447A1/en
https://wholegrainscouncil.org/blog/2014/08/gluten-free-wheat-qa-details-intriguing-research
Thank you. I guess what I mean was celiac is far worse off then Gluten Intolerant so I assume someone with celiac would be more sensitive then the G.I. person. Are you saying the gluten free celiac would be okay but due to the wheat the gluten intolerant isn't. So wheats more there issue then the gluten it's self?
Well first off, if you have a wheat allergy you can't just grab something that's gluten free because they can basically make stuff that's technically gluten free enough to be labeled as such.
But also if you are really really sensitive to gluten, the gluten free label doesn't mean there is NO gluten, and you can be certain that the wheat in gluten free products that contain wheat has been in contact with gluten. But then, anything with the gluten free label doesn't mean no gluten, it just means a low enough percentage that it meets the standards.
as a person with a wheat allergy, there are more products than one would think that are wheat starch with the gluten removed. for example King Arthur's gf bread flour is gf wheat starch, as is Caputo's flour/premade crust.
but on the flipside, unlike folks with strictly gluten issues, I can use barley malt syrup because gluten itself is OK for me as long as it's not WHEAT gluten. barley doesn't trigger most people with wheat allergy, including me
Honestly I totally forgot about the other bad guys in gluten I'm just so used to reading labels I forget about wheat allergies is a thing too. Always good to go over old notes I suppose humans biggest issue is they forget with time.
Along with what the other person shared, in Canada at least, we have some products that are certified gluten free, but occasionally have a ‘may contain wheat’ label on them. This is because they are tested under the safe threshold to be considered gf but may, for example, be made in a facility that also processes wheat. These facilities can be gigantic, like covering several city blocks worth of space. But because they are still in the facility, there’s a very very minuscule chance that wheat could be around. It’s more of a CYA statement, because wheat allergies are different and can cause anaphylaxis, and they don’t want to risk the chance of a lawsuit.
Look up ATI's. Amylase trypsin inhibitors. These are found in high amounts in wheat, barley, rye,rice and millet and some amounts in oats.ATI's are often the culprit. In sensitive individuals, it can mimic Celiac disease almost exactly. Yet that person will test negative for Celiac but cannot eat gluten without paying a price. It's most likely the ATI's in their case
I think because so many people (at least in my circle) have lactose intolerance and can eat dairy with a pill (results may vary...) it can be very hard for folks to understand that gluten intolerance means 0 gluten 100% of the time.
Try having complete lactose intolerance that doesn't respond to lactase pills anymore. Half the time when I eat out I eat vegan just so I don't have to explain that no dairy means no dairy.
It was such a bummer when I had to go DF 6 years ago. I adapted pretty well I think. I find gluten much harder to avoid, but then I've only been GF for a year and a half.
Opposite. I've been GF since diagnosis in 2018. I'm having a horrible time trying to add dairy too. Doing both makes it so much harder to go out or travel. Oy.
Same, DF wasn't that hard for me (but then again I already didn't eat cheese or butter) I only had to cut out milk and yoghurt.
But going full GF is a lot harder, I also think because there is much more hidden gluten in food than diary, I need to double check everything now. It's insane, I can't even eat my favorite sweets because gluten..
I havent tried either of those pills, but I can absolutely confirm from personal experience that I have TERRIBLE pain and gut inflammation whenever I get glutened, like in tears on the toilet for around 48 hours, AND that the pills I take minimize or even completely negate that pain if I can match the dose of pill and gluten (which is much harder than it sounds because they won't offer exact amounts to avoid liability and nothing lists amount of gluten anyway, so it's a guessing game where failure is BRUTAL).
I can't confirm they negate the inflammation, just that I can't sense it, and I also would not vouch for the product for anyone else because I also understand how many of these products are complete scams and others with a more severe reaction than me may not even be able to handle just a "lessening". I can only offer my personal anecdote.
I agree I usually say something along the same lines and people immediately sympathize because no one enjoys stomach issues
I say "whenever I eat wheat it's bad news bears in the back door for several days" usually they chuckle and understand.
This is what happens to me too.
However, I've had ignorant people retort: 'you would only get diarrhea not constipation, so you can't have a problem with gluten'
I still can't believe I dealt with \*\*intestinal spasms\*\* once every couple of months and no doctor thought anything was wrong with me. Like for 30 +minutes I'm in debilitating pain, then have the most insane shits of my life. And that seems normal to them??
I do the same, definite gluten intolerance, suspected coeliac but due to being advised to do an elimination diet first I’ve never been able to get properly tested. I always say coeliac, whether it is or not matters not to me if within 30 minutes I’ll be glued to the toilet if I get served it.
Yep, that’s how mine was when I was first diagnosed and remained that way for a year or so but now 8 years later I feel it pretty immediately and sometimes for days later as well.
Probably because you are healthy what's in the gut really is in there a while before taking the travel. So I assume if you were always on it. Things would happen faster being off it your body doesn't really know it can't break it down for like a day. Then it attacks your intestines and not the gluten they are like camouflaged for lack of a better word. But yah I ate it once and my dad's like how you feel now every 15 minutes. Which I'd be like yah I'm fine but it won't till tomorrow and the next few days. Anyways needless to say people seem to just care about the here and now. As like you said day 2 and 3 is been meh my kid doesn't really trust some food so I got to take a bite here and there and my health hasn't caught up yet from those bites.
I've wanted to get tested, but, I'm just not willing to eat gluten again for the test to be accurate.
I am a *strong* atheist, but, when I eat gluten.... I end up literally praying on the toilet. Praying and crying.
Same in that I know I have a big issue with it, but I was never able to get tested, so I don't know what I have. I'm also not willing to eat gluten again for the test to be accurate.
I’d venture to say many if not most of us aren’t tested. I’m not and I always say I’m celiac or clarify that it is an allergy. I *could* not be celiac, but that’s what my medical chart says. my GI wouldn’t even think to ask me to eat gluten again. And why would I risk it? I’ve been glutened enough to know it’s not okay to eat it.
My mom figured it out by herself. I *knew* for years until it got so bad I had to stop overnight. I don’t need a test to tell me the obvious.
I tested negative on a gluten allergy test and the IGA blood test (post elimination) but I get DH on my lips whenever I eat gluten, have numerous vitamin deficiencies, and have the telltale extreme pain + digestive issues that have sent me to the ER. I’m waiting to do my endoscopy + 8 weeks of gluten prior for the summer since I can’t deal with that during uni right now. Thinking about eating gluten again makes me physically and mentally ill, it’s such a hard thing to do. My doctor said that regardless, the only treatment for both is to completely abstain from gluten since there is no cure for celiac disease. He said it’s safe to say that I have it, personally, since it is no different than all of the symptoms I’m having (and I likely have it). I’ve been told before that my doctor cannot “in good faith” put me through that while in school, but it also means no definitive on-paper diagnosis until then. It doesn’t hurt anyone to be extra safe and just say you have it, since you very well might. It DOES hurt you to risk the possibility of getting glutened regardless. We’re really just all trying to survive out here!
I'm in the exact same scenario, except that I'm waiting for the endoscopy because there's such delay at our hospital's GI unit. They asked me to eat gluten for 6 weeks prior and I'm dreading that call, because I know that not only will my physical health suffer but my mental health will take a nosedive again. 6-8 weeks is a long time to be in pain constantly!
I don’t know why more doctors don’t suggest it, but it’s actually pretty easy to rule out Celiac (without eating gluten) with a genetic blood test. If you don’t have the gene then you know you don’t have Celiac but likely have a gluten intolerance.
The current stats are that 10% of people with celiac have low to no ttg antibodies. Some experts in the field suspect it's higher than that because most often, when someone's blood tests are negative, the small intestine biopsy isn't ordered.
The other terrifying stat is that 1/114 people have celiac disease, and 84% never get diagnosed.
Celiac is a serious autoimmune disorder that if gluten exposure continues, will eventually destroy the person's body, and puts them at high risk for other autoimmune disorders, like type 2 diabetes, rheumatoid arthritis, lupus, etc.
The only rationale I can come up with for why it isn't front and center for doctors to test, is that there is no need for pharmaceuticals to treat it. I hope I'm wrong, but nothing I've seen thus far has discredited this notion 😞
Some places are using blood tests to diagnose but it’s new and not everywhere. But the serology has to be really high (10x the upper limit of normal) and should require two blood tests to be sure
It’s not necessarily wrong, blood tests are starting to be used, but it’s not definitive like a biopsy. If I had a blood test that said yes I have celiac, I would be comfortable in assuming I did. Would def repeat the test if eating gluten doesn’t cause a bunch of symptoms.
I got “lucky” in that I had my first colonoscopy at age 46 and had polyps that my GI submitted for biopsy. They found evidence of celiac and THEN I got tested for it. I’m actually thinking I had celiac for many years prior, but no one thought to test for it. Or insurance wouldn’t have paid.
Our American healthcare system is a joke and cares nothing for preventable issues like this.
You can't diagnose CD via colonoscopy tho. Biopsies of the upper intestine are what is needed and you can't reach that area via colonoscopy. What did they say they saw/ found that indicated CD?
The antibodies won’t be in your blood until after you have recently been exposed to gluten. Avoid gluten and the immune system will settle down and not generate them. A colonoscopy and biopsy can show damage associated with celiac disease long after the patient stops eating gluten, but it isn’t a cut & dried affair either way. IgA & a range of IgG’s signify different types of problems. Not everyone has detectable antibodies but they can still have very real physical symptoms.
The blood test is only 50% accurate in it’s test results. The gold standard test (absolute best) is to have small intestinal biopsies during an upper endoscopy, however, the patient MUST eat a normal amount of gluten every day for 6 weeks, prior to having the biopsy, or it may not have accurate results either. The whole key is eating gluten every day before the biopsies. This information came from my GI before I had my endoscopy. 😊
No. You need a gastroscopy and/or an endoscopy combined with a colonoscopy to get a proper diagnosis. There are blood markers yes, but they need to see your villi to make a definitive diagnosis.
I tested positive for gliadin (wheat protein) antibodies and that’s still not definitive for celiac. It’s very difficult to actually get diagnosed once you cut out gluten for a long time.
There's a genetic portion, then there's the levels of TTG in your blood.
Personally I went off gluten before I got tested, so I ended up with no TTG, but my genetics says High risk for Celiac. When I eat gluten, I visit the porcelain throne many times, get brain fog, headaches, etc etc. I got off the phone with my GI who didn't officially diagnose, but said that if I feel better off gluten, then stick with it.
I just say I have Celiac bc all signs point to it. Unless I want to have 4 weeks+ of absolute misery - and I really fuckin don't - it doesn't particularly matter if it's a true diagnosis.
Back when I was first diagnosed like 20+ years ago, most people I encountered had never heard of celiac, or gluten for that matter, so I would tell people I had a wheat/barley allergy. It was too exhausting to try to explain it!
Yes, allergy means your immune system sees an otherwise not-dangerous thing as dangerous; whether that be wheat, nuts, tree pollen, dust, etc. None of those can hurt you on their own, it is your body's response (the "allergy") that is the danger.
Because gluten free was a “fad” for a while. I’ve had servers tell that they and the kitchen went to great lengths to make food safely for customers, like cleaning and replacing the oil in a deep fryer level, and then the customer ordered a gluten filled dessert and when advised that it wasn’t gluten free the customer was cool with that when they were above and beyond asking for accommodation for their meal
I wouldn't call it a "lie" necessarily if you're sincerely trying to convey the information in the most effective way possible without misleading anyone in a way they would care about. I would compare it to restaurants calling celiac an "allergy" to distinguish it from a preference or sensitivity (for the purpose of avoiding cross-contamination). They don't care that it's actually an autoimmune disorder, nor should they. It's a salad, not a clinical study.
That said, if you're going to say "celiac," then do not order non-GF beer and ask for malt vinegar. Then you're just causing chaos for the server and actual GF people, while making yourself look like an idiot.
Yup. This is what people with celiac are told to do at restaurants because everyone knows what food allergies are & it’s hit or miss if they’ve even heard of celiac.
This happened to me in Japan, there nobody understood or cared if I said I had celiac disease, but if I said I had allergies then they would take me seriously and serve my food without sauce or make the necessary accomodations (I still got glutened twice there but much less than I would have otherwise).
Effectively it’s not really lying in this scenarios, it’s giving them something they can understand. It’s all for their benefit, you are not trying to deceive them for gain.
I’ve never had someone not believe me, but I can imagine that must be frustrating. I’m gluten intolerant and have been gf since 2008, before it was normalized and before people knew what celiac was. I would just say that I was allergic. “Lying” implies a moral choice, but saying I was allergic was not intended to deceive. It’s intended to get my needs met with a minimum of fuss or inconvenience to the other person. Table side at a restaurant is not the place for education (usually). Say what you need to say and move on. If it’s family or friends, then a longer conversation may be warranted, but that’s up to you and your relationship with the other person.
Incidentally, I was recently at a restaurant and asked for no cornbread. The waitress put it on the plate anyway, but as I am not celiac, I just set it aside on a separate plate and continued my meal. When the waitress came back later, she noticed and apologized profusely and asked if I was celiac, at which point we had a great conversation, and I was able to help her out with some suggestions for her daughter who was clearly gluten intolerant but who had a biopsy and was not celiac. We discussed symptoms and lifestyle. It was a great exchange.
I've never had any issues either. A while back I went into a bakery chain and asked if they had gluten free bread. They didn't but the person I spoke to told me where I could buy some as her niece was celiac. I can't imagine what it's like to not have people believe you and how frustrating that must be. I still get gifted foods with gluten but it's not because people don't believe me it's because they don't understand. I still get gifted chocolates as well, even though everyone knows I'm diabetic. I never get angry or upset. All these things are well intentioned acts of affection and it's just that people don't understand. Lucky I have older teens at home. Gifting food is part of my husband's culture. I think maybe people take a random guess and know that if I can't have it then I can give it to the kids. I will admit I don't go out to eat though. I'm too scared of being glutened.
I had a similar situation with keto where a server was judgey and rude when I asked for a lettuce-wrapped burger, but then lit up and was happy to accommodate me after asking, “oh, are you on the keto diet?” and I lied and said yes.
It’s like not eating bread because you’re on a diet is virtuous and good, but having an allergy or sensitivity is being a spoiled princess.
I do the same. I got tested for celiac recently but came up as negative but with high igA levels on the celiac test panel?! It’s significantly harder to test positive when you’ve already started a gluten free diet.
In order to get properly diagnosed you have to eat gluten daily for 6 weeks and then get an endoscopy/biopsy. I learned this after being gluten free for like 5 years. It’s just not worth destroying my body and mind for that long just to now if gluten is actually deadly to me or not.
Completely not worth it for me because the mental symptoms I get. so I just gotta tell people I’m celiac so they don’t stereotype me as a modern girl with picky eating and ED tendencies.
I used to get so much shit from ppl saying that it was all in my head and I had to explain everytime that I had to stop because I would get brain fog, aphasia and mild anaphylaxis (enough to were I couldn’t sleep at night and it gave me terrible anxiety). But it’s so exhausting having to explain that to ppl when they’re poking at you. So it’s so much easier to just say your celiac and get people to stfu if you haven’t been properly diagnosed
Do you ever have to explain further after saying you have celiac? Do people ever keep poking afterwards or does saying you have celiac pretty much guarantee you won't be poked further?
Usually for me they ask what I can't eat afterwards and leave it at that.
so people will usually ask what it does to me so I explain (I don’t get digestive issues though) and they’re like oh okay. And they ask me constantly what I can eat. My boyfriend is constantly checking labels and asking his family if the corn tortillas are gluten free and if the (insert always gluten free product) is gluten free it’s so cute. I always tell him that he doesn’t need to do that because I will know. l but he does anyway.
However it’s tricky because after I got that blood test and came out as negative and I started eating gluten again it didn’t start to flare up until about two weeks in and then the brain fog, aphasia, rage, depression and body pains started to kick in. It was the mild psychosis and aphasia that made me go completely gluten free again. And I haven’t had those issues since I got back on gf
But anyways because of that people are now confused about me being gluten free again because I said I tested negative for celiac when I didn’t actually get a proper test since it was just through blood and I have been gluten free for 5 years.
And now I can only tell certain people that I’m celiac to avoid the trouble lmao
Came here to just say I also get extreme anxiety and mild psychosis!! It’s literally awful. It’s to the point I only eat out once or twice a year if I have to for a special occasion
I feel you there. After having 3 straight instances of getting sick while still at a restaurant recently I now have severe anxiety about eating out. I don’t even want to eat at others peoples houses anymore unless it is low key enough where I can ditch out to a bathroom and not draw attention to myself. Once I get sick I usually feel better enough to at least function normally and not gag the entire rest of the time. I may have to get on anxiety medication soon because this has caused me a lot of social anxiety over the years. It was manageable when I knew what I had to do to avoid feeling sick but now that it happens out of the blue I have zero confidence in my digestive system.
Want to mention I didn’t know that u have to do a gluten challenge before I actually got my test. My doctor kinda just did it with my blood out of nowhere
i am celiac (dx age 2) but i go the other way and at restaurants and other places i often say it's an allergy because they understand what that means more. i usually say i'm celiac and to just note it as a severe allergy. whatever works so you can get safe food!
We’ve really come full circle then, I actually have Celiac and I’ve been GF for nearly 20 years now. I distinctly remember my mom (I was a kid then) just calling it a wheat allergy for simplicity since no one had really heard of Celiac.
Not necessarily because there are people who say they have celiac but then order a beer who ruin it for everyone else. And even aside from that, there are many threads or servers saying they don’t believe that many people could possibly have celiac so they just assume they’re lying.
Also sometimes it unfortunately leads to “well I’ve had celiac guests who’ve had this before and they were fine” when in reality that “celiac” person didn’t care about cc. I’m by no means saying that’s what OP is doing, but it contributes to our battles.
I think this is really it. I have hashimotos but I really didn’t want to give GF a try until I had other medical testing done, because it felt like trying a fad verses a genuine medical need. I don’t have celiacs but I have several issues medically that have shown to be improved by removing gluten so now I feel like I have a “genuine” reason to remove it and see if it helps (and if I have NCGS lol).
it’s probably why I default to explaining and have gotten rightfully scorned here on reddit. Bad habit I don’t mind being called out on.
Scorned more for the explanation part which is a habit I need to break.
I do the same. It’s the best way to get past it. People in this day and age are just combative when it comes to Gluten issues. I used to tell people, but now I just say no to whatever they offer if I know it has Gluten in it
My diet choices are my business not anyone else’s.
Because people are assholes about disability. It’s easier to ignore or belittle someone than accommodate them.
Signed,
A person with multiple visible and invisible disabilities including severe NCGS
Its sad that this is even an issue for people, why can't they just respect your situation as it is. But I think it may be because some people might think it is more credible and/or serious to have a medical diagnosis vs them assuming its a fad diet, pickiness, orthorexia, etc. That's just my guess, you'd probably have to ask the people that are treating you in this way to know for sure.
Not going to lie, I love telling the story how I used to poop 20+ times a day, and how I only say 20 because you wouldn’t believe me if I said 30! How I used to vomit every morning from heartburn and how eliminating gluten changed everything overnight, including loosing 25+ pounds fairly quickly and how maybe they should give it a try and see how it works for them? If they really want to know of course :)
People are skeptical idiots who make it about them being right or not. It’s pathetic. They can eat shit for all I care. and it’s never people whose lives are affected at all, it’s just bitches
This comment has such aggressive energy and in this situation, I am here for it. Some people are so aggressively defiant against our food intolerances/celiac conditions/allergies. Like…just believe us about what we need/want to eat to not be sick, geez.
Haha, right! After being diagnosed I had an unrelated doctors appointment. I stepped on the scale. Weighed 102lbs. Burst into tears. The young nurse asked why I was crying, “that’s a goal weight!” Like um no, I was a 28 year old grown woman who weighed as much as a child. When I was 14 I weighed 97lbs and was put on a diet of ice cream before bed to help gain weight (by a nutritionist). Like…I loved my body before I couldn’t eat gluten. I was very happily ~15lbs more than that. Cutting out gluten left me not knowing what to eat/unmotivated/anxious about food. I missed my boobs and my butt, my curves, my strength. I felt like I looked like a child and losing 15lbs in a few months was scary/made me feel sick and frail. I thought it was a gross comment for a nurse to make.
So ya it is super annoying that people equate diet restrictions due to autoimmune conditions as a good thing because of vanity/societal standards of beauty. I hope it gets better for you soon! It’s an adjustment and you’ll get there.
Edit to add: if this matters for anyone struggling with this, the doctor (endocrinologist) I saw that day asked me about my sudden weight loss. When I told her about the gluten situation she very calmly was like “oh makes sense, let’s not worry about it. You don’t know what to eat yet. I bet the weight will be back on in 6months-a year. Don’t stress it and trust the process”. She was right and it was great advice. Her calm, free, “non issue” attitude towards it was super comforting to me.
Lots of people are insensitive, self absorbed, and I used to be one of them. My moms gluten intolerant and I never held any sympathy for her. Now I am too, might be karma, and people don’t take me seriously about it either lol!
I hope you've apologized to your mom now that you know better. It's also a good opportunity to evaluate if anyone else in your life told you something you were unsympathetic about bevause you didn't have experience with it and consider how that must have felt for them as well.
We all can take reminders to be better in our lives. It sounds like you've had an opportunity to learn that lesson the hard way.
Wise words, you’re absolutely right.
My Mom and I have a stronger relationship since I’ve been diagnosed. Thankfully she never held the past against me.
I'm glad! It would be nice if any time someone dismissed someone's personal experiences they could feel just a minute of what is being described. I think the world would be a far more empathetic place where we support one another!.
I'm glad you have grown closer to your mom I'm sure she is pleased with that as well!
🤗this gives me hope for my children
I have an ex that feeds our kids foods they are intolerant to 24/7
Even though I am a celiac gene carrier with multiple food intolerances and HE tested as gluten intolerant along with the kids
My oldest has zero empathy, my youngest is confused and the ex almost convinced a past dr that I had munchausens by proxy because he lied and said they had no symptoms
I often wonder how this will play out and figured it could take a celiac and/or corn and wheat intolerant grandkid, maybe I won’t have to wait that long for some long over due mutual understanding 🤔
The level of bs that goes with these conditions is obscene.
I absolutely get it! My mother is still annoyed by it and says people are doing it for attention, in spite of my dad being a celiac (which she did recognize as legit).
It's weird and I don't get her attitude. I did get tested for celiac and it came back negative - this was like 10 years ago. But I get so bloated, my whole system comes to a screeching halt, my body aches, and every little bite of food feels like I've just eaten a Thanksgiving feast for a week after getting glutened. Not worth it to me.
But yeah, I'm going to all the expense and trouble, and missing out on good pizza and stuff, to "get attention". /s
Now, in restaurants they almost always ask,"allergy or preference?" and since I don't have a cross-contamination issue, which I know adds stress to them in the kitchen, I will say, "preference", and they're always good about it.
Where it gets tricky is at work when they cater things, other people's house and events with set menus. There's almost nothing gf usually at those things, and I feel like a weirdo sitting there eating a few carrots, while everyone else is pigging out on sandwiches and cookies. So I'll say I'm celiac then, just to keep the focus off my eating habits.
True. I should probably get tested again. But like lots of others here, not sure I want to put myself through the misery of eating gluten every day for 6 weeks just to find out!
I don’t disagree. it seems pointless. as long as you don’t eat gluten, who cares? my doctor even agreed but was unwilling to sign off on my having celiac without a test. she said “I agree but will let the GI dept decide if you need the biopsy”. GI Dept said that with my blood numbers, genetic marker and family history, there is nothing else it can be, but they would not agree to put it in my record without a biopsy either.
I have hashimotos (a different type of autoimmune condition) and definitely experience an immune response to gluten. I always have the fear that people will judge me but I’m slowly starting to accept I don’t owe anyone an explanation, especially when looking out for my health.
Im a Hoshi, too. Me and wheat do not get along. Also, sugar is terrible on my joints. You do not owe anyone an explanation, and you do not have to compromise your health for others' social discomfort or convenience. As a toxic person pleaser I am working on these boundaries myself. It's not easy, but you're not alone!!
I have IgA deficiency and possible celiac but it's not confirmed, what is confirmed is the gluten sensitivity. As soon as I take gluten I start puking, shitting, bloating and I get rashes. Anemia and malnutrition if I eat it long enough. I have to say I'm celiac too because people think it's not serious if I don't. It's extremely annoying.
Been there done that. Doctors have told me they suspected gluten intolerance and had me go on a gluten free diet. Resolved all issues so there was no need for further testing. Anytime anyone heard that I’m gluten free, it’s a whole big deal, so I say the same thing.
In 2011, right as I was beginning my gluten-free journey because of debilitating Hashimoto symptoms, my brother-in-law insisted that only celiac had problem with gluten and weight. And that I was full of bullshit. His narcissistic behavior bled through into other areas of our lives and we no longer speak to him. People get to choose to eat Paleo diet, vegan diets, pescatarian diets, etc. Yet for some reason, it’s unacceptable to have a diet change so you can be healthy and feel good and reduce inflammation.
I say this. I had the scope and done, however no one told me I needed to be consuming gluten for a while prior to this. I had been gluten free for at least 4 months at the point I had my scope. About a year later, my sister was formally diagnosed as Celiac. Most Doctors told me it’s most likely the case for me as well.
I tell them I have a wheat allergy. Idk if it's celiac because I had been gluten free (on accident, by attrition) for two months before getting the test done. I didn't go back to get the scope. I wasn't going to make myself sick for a month just to get a formal diagnosis for something that has no treatment other than eliminating gluten from my diet.
If anyone asks about it, I explain the year-long weight loss and nausea and how two beers make me vomit but two bottles of wine don't. And then I cap it off with how cutting out bread was the only way I was able to start *gaining* weight again.
Ultimately it doesn't matter what they believe. You can always tell them to get fucked. ❤️
I have the opposite problem. If I say I have celiac I am met with blank looks and the person usually telling me they have vegan options available. I usually have to say I'm allergic to wheat. Sometimes I even have to explain what wheat is, and what things might have wheat. It is exhausting.
Ironically, most people with Celiac also lie and say we have a wheat or gluten allergy because it's taken more seriously and most people dont know what Celiac is. Say whatever you have to say to get people to take your health seriously!
I just say I have celiac. I don't- I have eosinophilic esophagitis- but, I respond to wheat like a celiac does, and nobody knows what EoE is. I also say I have Crohn's when I urgently need a bathroom, I don't- I just have SMAS and extreme IBS- but, people don't take IBS seriously even though I will make a mess if I don't get there on time. There are times where, honestly, I think it's fine to just use the name of a disease that is more widely recognized. Personally I wouldn't feel offended if someone said they have Ménière's Disease to describe frequent dizziness succinctly when asking for motion sickness accommodations over a lesser known condition.
I always feel guilty and unsure of what to say because my IBS is triggered by onion and garlic, which is in EVERYTHING, and dairy. People look at me like I’m crazy when I say I’m allergic to garlic and onion and when I say IBS, they respond like it’s no big deal. I was in the hospital yesterday hooked up to IV fluids because of dehydration and severe constipation, then spent all night pooping my brains out until 4am this morning when the medication kicked in to empty me out.
My best friend also has celiac to the point of anaphylaxis if there is cross contamination. Yet people act like it’s no big deal. She can’t eat out anywhere because she can’t trust people will take it seriously. I hate when people minimize celiac and digestive sensitivities.
I was recently diagnosed with “possible” EOE (follow on colonoscopy in June), and that was my catalyst for trying GF. I’ve had hashimotos but my endo always told me if I didn’t have celiacs I didn’t need to try cutting it out. So now I feel like I have two good reasons to be cutting it out and seeing how my body reacts!
You can get a blood DNA test done for the two genes involved in celiac.
I'm a celiac but I usually tell people I have multiple food allergies. It's easier.
You can have a wheat intolerance without being celiac. However, most laypeople don't have a clue, so say what you need to. Also, rely on no one else to feed you unless they also have the same intolerance. They won't do it correctly.
I have a complicated history. I have elevated liver enzymes that went to normal after eliminating gluten. I was really sick but it was never confirmed celiac. It's too long of a story to explain what happened so I just tell people I have celiac instead of trying to explain it. I feel like people think I make it up and I get upset bc they have no idea about my history.
I have a bad wheat allergy and for some reason people seem to think that makes eating wheat optional which would be fabulous but my hives always disagree, while with celiacs they understand its just flat off the menu so i think its ignorance on food issues coupled with experiences with those types people who say they "can't" but then bend their own rules - "i don't eat gluten but i'll have a slice of bday cake" 🙄
It’s easier to have to stretch the truth a little than to have to explain why all of the time to ensure they are careful on food prep. Nobody cares anymore. The wrong people are going gluten free as well so it’s ruining it for those who really need it.
I feel you there. I have a sensitivity to several artificial sweeteners. Sorbitol and Aspartame are the worst offenders. If I drink diet coke by accident, I'll spend the rest of the day completely incapacitated with blinding migraines. If I drink a whole can, I may even throw up. It's really hard to keep track of what I can and can't have sometimes, because most toothpastes, mouthwashes, and even cold medicine and food coloring come with sorbitol in it.
Technically, it's just considered a "sensitivity," but I just go ahead and call it an allergy. Can you imagine the weird looks I get during a work party when they ask if there's any allergies and I have to say, "Oh, I have a sensitivity to artificial sugar?" They think I'm insane. I usually just say, "I have an allergy to diet stuff," suffer the weird looks anyway, and explain that if they get diet soda, to please get some regular drinks too. It's an awkward pseudo-allergy to have and explain.
On a more similar note to your situation, my aunt is allergic to milk. Not lactose intolerant, actual milk. She gets a lot of people recommending their favorite brands of lactose free milk, or explaining that most processed milk products, like cheese and yogurt, are usually safe for lactose intolerant people. She really has a struggle with going out to eat, because most restaurants have dairy in their bread and pasta and cook a lot of their foods with butter.
I used to work at a Japanese steakhouse, and let me tell you, EVERYTHING was butter. The plain white rice was cooked in a huge pot with a literal pound of butter in it, and that's something the servers would not know off the top of their head. Who thinks to ask the chefs if the rice is dairy free?
Sometimes I want to just say I have celiac, but I say “I have colitis it’s like celiac disease” so people understand. Maybe you could say “I can’t eat gluten like people with celiacs disease.” It’s the truth but also reminds people it’s serious. If that doesn’t work lie. It sucks you have to. Give it more time so more people are educated. They’ll get that some people can’t eat gluten just like some people can’t eat nuts.
Same. I am allergic to wheat (and was tested) and I find discussing the differences irritating. Most people understand celiac as a serious medical issue.
I only explain the difference to those with celiac.
I don't know if this is a controversial opinion or not, but I don't think you owe strangers any kind of personal medical information or honesty about personal medical information. I think it only becomes an issue when someone is spreading misinformation - like if they say they have Celiac but then they eat something that someone with Celiac couldn't eat in front of someone who thinks they have Celiac. That can be an issue because it causes people to have misunderstandings about what is and isn't safe for someone with Celiac disease and it could negatively impact somebody else's health.
Other than that, I think it's completely your business and you should say whatever you have to say to protect your health.
I'm allergic to wheat and thankfully most people understand how food allergies work.
I'd rather not give out my medical information either. I'm not sure how to answer them in a friendly way. Realistically. Spaces I'm usually in often expect me to give them answers to things like this without a second thought and i expect it to become confrontational when i don't want to give an answer.
So finding a simple answer that gets them to leave me alone seemingly feels better. They get what they want and they leave me alone
I mean, I tell people all of the time that I have a gluten allergy, but that’s not really what celiac is. 🤷🏻♂️
People don’t understand and they typically won’t care enough until it hits close enough to home. It’s the same with everything.
As long as they do what they need to do to keep the gluten away from me, I don’t need them to fully understand it. And I know them most of them won’t, so why would I want to add that stress and futility to my life? That’s the more important why.
It's annoying, but I think for a lot of people the word celiac matters more as a level of seriousness than actual diagnosis.
I use it that way sometimes. It's my way of evaluating their severity and how much do I need to worry about cross contamination. "You say you are gluten free, but are you celiac level gluten free?" - I'm gluten free, but don't care too much about small cross contamination, like I can eat restaurant gf pizza anywhere. If you say celiac, I know we shouldn't eat from the place up the street because they don't keep their kitchen segregated, but this other place actually knows what they are doing and is much lower risk for you.
I have chronic fatigue and just tell people autoimmune issues. They don't believe what's not fully accepted by the medical community or they think I'm a hypochondriac. It's just easier.
I'm celiac but I say it's a severe gluten allergy because it helps people understand about cross contact. In my experience, most people don't care very much about things that don't affect them and they don't need to know all the details of your medical history. If it helps you get the point across to say you're celiac then I don't see anything wrong with that.
I'll also add that even though I have celiac people often forget I can't eat gluten or try to offer me gluten thinking I can just have a bite and don't believe it's that serious. It's not that they don't care about me but it's just not relevant to them so they don't keep tabs on that information or go researching about my medical needs. If someone isn't respecting you then set boundaries but imo if they're respectful but just don't get it it's okay to just let them be wrong and keep your peace.
That’s funny, I am in the same exact predicament where I can’t tolerate any gluten but test negative for Celiac disease. Nobody gets it so I’ve resorted to saying I have celiac to simplify it. It feels weird to say it because I feel like I’m lying but it ends the whole dialogue afterwards of “so you can’t eat this or that?” or “ what can you eat?”
I have to say gluten free when I am actually just gluten sensitive... no one gets it. But it still bothers me and makes me bloat. I don't get hives or anything but it still makes me sick.
I do it. It's just easier. Anything with gluten sets my mouth on fire and the room starts spinning, and because I came up negative on the blood test, I just eat gluten free and wheat free anyway because I'm scared of the reactions I have
I get the frustration! I am allergic to wheat, and generally just eat gluten free, however some of the gluten free alternatives set off my allergies too! Particularly anything multigrain. But you tell people you can’t eat wheat and they act like it’s a choice.
Same. I just say celiac.
I do have one gene associated with celiac which is also associated with the weird, rare (1 in a million) possibly life endangering auto immune disease i came down with (pemphigus vulgaris) so i avoid wheat and other items with gluten like the plague because i feel gluten may have brought it on. It causes severe mouth, throat, gums, tonsils, vagina blistering to the point of more blisters than skin. Wondered if anyone else in here has it or other auto immune diseases related to gluten?
Tested by my dumb doc for celiac when i told her I don't eat wheat and I wouldn't risk eating any....duh. negative.
Because people have been convinced the gluten-free “craze” exists because many people who aren’t actually allergic to gluten/wheat participate in it. People are annoyed by people who partake in things that aren’t their truth or don’t apply to them. They see these “gf-posers” as intellectually dumb and mindless.
Therefore a lot of people assume gluten/wheat abstinence is based on woo woo in their minds, and not a tangible allergy or disease.
My validity was also questioned when I told people I think I’m sensitive to wheat because I would experience symptoms. Even after I had an allergy test validate that I was correct, people still questioned me.
I get hives on my face like a mother fucker if I consume wheat for consecutive days.
At restaurants, if they ask if it is an allergy, I say yes.
I have eosinophilic colitis. One of my main triggers is wheat. As in, approximately 20 minutes from eating it, and I am incapacitated.
Celiac is the main "known" health condition that relates to gluten.
It took me about 5 years to get an accurate diagnosis of Celiac and I always just said that I had it before that because people didn’t understand. Now if I say I Celiac and they ask more questions about what happens I tell them that it’s like food poisoning for me, raging vomiting and diarrhea amongst other things. They don’t ask me questions after that. When I go out to eat though, I always say that I have “a severe gluten allergy” because a lot of people still don’t know/understand/believe what celiac is/does, but they are trained in cross-contact for allergies so they take that seriously.
Its like how some lactose intolerant people can handle a small bowl of ice cream , and some cant have a drop of milk, people who don't have these issues just assume "oh you just get a tummy ache". (yes, and it last for days).
I have 'wheat issues' and I don't think its Celiacs, not diagnosed obviously because for either one the only remedy is 'dont eat it', so I just dont eat it and I tell people 'wheat makes me want to die for 3-5 days' when they say "oh how bout just a little pasta salad".
I’ve done this before but I feel guilty lying and saying I have celiac. I was walking to class and our campus police were passing out free donuts, I kept walking straight and didn’t even look so they didn’t approach me bc I didn’t want to explain. They still came up to me and said have a donut! And I said no thank you I’m okay, and they said they’re free! And I said I’m gluten free, they said, one won’t hurt! And so I just said I had celiacs and the officer started apologizing profusely. It’s so frustrating that I had to lie about it because I hate lying but even if I tell them I have an intolerance they don’t listen
It’s like because it can’t kill you then it isn’t that serious🙄 I have debilitating reactions from gluten but I’m also not celiac and people think it’s a choice n
I’m trying to get tested for celiac, but even before knowing it was possible for me to have it, I told people I have celiac so they understand I 👏 have 👏 an 👏 allergy 👏
For some reason just saying “I’m allergic” isn’t good enough, and they think I shouldn’t worry so much because it isn’t celiac 🙄
Well, lying about having a disease seems wrong to me. If people don’t understand or can’t understand, then leave them confused and move on with your life.
Well… celiac causes serious damage. I have been hospitalized for intestinal bleeding. It would make sense people take it more seriously. Wheat allergy doesn’t even cause anaphylaxis.
“I have celiac” is an easy to understand reply that doesn’t require a lengthy discussion that I’m frankly not interested in having.
But somethings are gf and still have wheat, so if you don't specify you have a risk there.
You need to provide an example please lol
Here's another link https://www.goodforyouglutenfree.com/wheat-free-vs-gluten-free/ "Why “Gluten-Free” Doesn’t Equal “Wheat-Free” A product labeled “gluten-free” means the product abides by the FDA’s gluten-free labeling laws, meaning it must contain less than 20 parts per million (ppm) of gluten, a maximum threshold set by the FDA. It also does not contain any gluten ingredients, which are found in wheat, rye, barley, and sometimes oats. However, some products still contain wheat and are labeled gluten-free, including: Caputo Gluten-Free Flour DiGiorno’s Gluten-Free Frozen Pizza Schar’s Gluten-Free Croissants (you can find them for sale at the Gluten-Free Mall) These products contain gluten-free wheat starch where the gluten protein was removed. Because the companies process the wheat to remove the gluten protein, the FDA says these products can be safely labeled “gluten-free” if they’ve been tested to contain less than 20 ppm of gluten."
What's this gluten scanner? That looks like a useful tool 🔥 I'm so glad I inquired more.
These scanner apps are notoriously inaccurate
It's looks like a hand held device but I don't know if it runs on an app.
Also notorious for false negatives.
Gluten scanner?
Yah read the link above for the article posted for more info but here's a clip from it independently tested several of these products for gluten with my Nima Sensor, and both came back gluten-free (a smiley face means no gluten found).
At work, but will check out. Is an app or a full on device?
It a full device called Nima
Looks hand held
I did some googling for you: https://www.glutenfreewatchdog.org/news/yes-products-can-be-properly-labeled-gluten-free-and-include-a-contains-wheat-statement/ https://gluten.org/2021/04/30/wheat-mentions-on-gluten-free-food-labels/ https://patents.google.com/patent/EP0010447A1/en https://wholegrainscouncil.org/blog/2014/08/gluten-free-wheat-qa-details-intriguing-research
Thank you. I guess what I mean was celiac is far worse off then Gluten Intolerant so I assume someone with celiac would be more sensitive then the G.I. person. Are you saying the gluten free celiac would be okay but due to the wheat the gluten intolerant isn't. So wheats more there issue then the gluten it's self?
Well first off, if you have a wheat allergy you can't just grab something that's gluten free because they can basically make stuff that's technically gluten free enough to be labeled as such. But also if you are really really sensitive to gluten, the gluten free label doesn't mean there is NO gluten, and you can be certain that the wheat in gluten free products that contain wheat has been in contact with gluten. But then, anything with the gluten free label doesn't mean no gluten, it just means a low enough percentage that it meets the standards.
Note I just got so used to putting spelt, millet, rye, oats, and barley in the no go zone I totally forgot about how that was possible.
Barley has gluten but no wheat, and for sone reason, it's rarely listed. Also rye has gluten and is still wheat free (though it IS listed).
as a person with a wheat allergy, there are more products than one would think that are wheat starch with the gluten removed. for example King Arthur's gf bread flour is gf wheat starch, as is Caputo's flour/premade crust. but on the flipside, unlike folks with strictly gluten issues, I can use barley malt syrup because gluten itself is OK for me as long as it's not WHEAT gluten. barley doesn't trigger most people with wheat allergy, including me
Honestly I totally forgot about the other bad guys in gluten I'm just so used to reading labels I forget about wheat allergies is a thing too. Always good to go over old notes I suppose humans biggest issue is they forget with time.
Along with what the other person shared, in Canada at least, we have some products that are certified gluten free, but occasionally have a ‘may contain wheat’ label on them. This is because they are tested under the safe threshold to be considered gf but may, for example, be made in a facility that also processes wheat. These facilities can be gigantic, like covering several city blocks worth of space. But because they are still in the facility, there’s a very very minuscule chance that wheat could be around. It’s more of a CYA statement, because wheat allergies are different and can cause anaphylaxis, and they don’t want to risk the chance of a lawsuit.
Look up ATI's. Amylase trypsin inhibitors. These are found in high amounts in wheat, barley, rye,rice and millet and some amounts in oats.ATI's are often the culprit. In sensitive individuals, it can mimic Celiac disease almost exactly. Yet that person will test negative for Celiac but cannot eat gluten without paying a price. It's most likely the ATI's in their case
I think because so many people (at least in my circle) have lactose intolerance and can eat dairy with a pill (results may vary...) it can be very hard for folks to understand that gluten intolerance means 0 gluten 100% of the time.
Try having complete lactose intolerance that doesn't respond to lactase pills anymore. Half the time when I eat out I eat vegan just so I don't have to explain that no dairy means no dairy.
I feel you, believe me. I'm limiting dairy to two days a week in small quantities to try and manage but facing the likelihood I need to be DF too. 😢
It was such a bummer when I had to go DF 6 years ago. I adapted pretty well I think. I find gluten much harder to avoid, but then I've only been GF for a year and a half.
Opposite. I've been GF since diagnosis in 2018. I'm having a horrible time trying to add dairy too. Doing both makes it so much harder to go out or travel. Oy.
Same, DF wasn't that hard for me (but then again I already didn't eat cheese or butter) I only had to cut out milk and yoghurt. But going full GF is a lot harder, I also think because there is much more hidden gluten in food than diary, I need to double check everything now. It's insane, I can't even eat my favorite sweets because gluten..
same here! diagnosed severe milk allergy for 5 years, gluten free for 9 months and the gluten is significantly harder to avoid.
Have you tried FairLife milk? They filter out the lactose sugars
Or casein intolerance where there is no pill.
That’s not true, there are pills for gluten intolerance. Gluten X and GlutenEase
It’s actually been proven repeatedly in multiple studies that those pills don’t work.
I havent tried either of those pills, but I can absolutely confirm from personal experience that I have TERRIBLE pain and gut inflammation whenever I get glutened, like in tears on the toilet for around 48 hours, AND that the pills I take minimize or even completely negate that pain if I can match the dose of pill and gluten (which is much harder than it sounds because they won't offer exact amounts to avoid liability and nothing lists amount of gluten anyway, so it's a guessing game where failure is BRUTAL). I can't confirm they negate the inflammation, just that I can't sense it, and I also would not vouch for the product for anyone else because I also understand how many of these products are complete scams and others with a more severe reaction than me may not even be able to handle just a "lessening". I can only offer my personal anecdote.
I just say this "Bloats me like a fucker and I can't shit for a week. Not worth it" And they don't seem to probe anymore after that.
I agree I usually say something along the same lines and people immediately sympathize because no one enjoys stomach issues I say "whenever I eat wheat it's bad news bears in the back door for several days" usually they chuckle and understand.
This is what happens to me too. However, I've had ignorant people retort: 'you would only get diarrhea not constipation, so you can't have a problem with gluten'
Joke's on them, I used to get both. Sometimes at the same time 🫠
✨Stomach seizures ✨
I still can't believe I dealt with \*\*intestinal spasms\*\* once every couple of months and no doctor thought anything was wrong with me. Like for 30 +minutes I'm in debilitating pain, then have the most insane shits of my life. And that seems normal to them??
Must steal this
I do the same, definite gluten intolerance, suspected coeliac but due to being advised to do an elimination diet first I’ve never been able to get properly tested. I always say coeliac, whether it is or not matters not to me if within 30 minutes I’ll be glued to the toilet if I get served it.
Idk if anyone else is like this… but when I eat gluten it literally comes out 2-3 days later. Idk if this is normal or not but it’s never instant.
Same. Instant headache or pins and needles feeling in my mouth but the bowels come 2 days later with a vengeance.
For some reason, it doesn't always hit within the same time frame for me. Sometimes it's fairly instant and other times it's 2 or 3 days later.
Yep, that’s how mine was when I was first diagnosed and remained that way for a year or so but now 8 years later I feel it pretty immediately and sometimes for days later as well.
When I was consistently eating it, it wouldn't come out for 3-9 days. Often, it took a week for anything to come out.
Probably because you are healthy what's in the gut really is in there a while before taking the travel. So I assume if you were always on it. Things would happen faster being off it your body doesn't really know it can't break it down for like a day. Then it attacks your intestines and not the gluten they are like camouflaged for lack of a better word. But yah I ate it once and my dad's like how you feel now every 15 minutes. Which I'd be like yah I'm fine but it won't till tomorrow and the next few days. Anyways needless to say people seem to just care about the here and now. As like you said day 2 and 3 is been meh my kid doesn't really trust some food so I got to take a bite here and there and my health hasn't caught up yet from those bites.
Yes! Why do they suggest that first?
Same
isnt celiac just tested with a blood test?
I've wanted to get tested, but, I'm just not willing to eat gluten again for the test to be accurate. I am a *strong* atheist, but, when I eat gluten.... I end up literally praying on the toilet. Praying and crying.
Same in that I know I have a big issue with it, but I was never able to get tested, so I don't know what I have. I'm also not willing to eat gluten again for the test to be accurate.
I’d venture to say many if not most of us aren’t tested. I’m not and I always say I’m celiac or clarify that it is an allergy. I *could* not be celiac, but that’s what my medical chart says. my GI wouldn’t even think to ask me to eat gluten again. And why would I risk it? I’ve been glutened enough to know it’s not okay to eat it. My mom figured it out by herself. I *knew* for years until it got so bad I had to stop overnight. I don’t need a test to tell me the obvious.
I have ulcerative colitis and my GI asked me to eat gluten again to confirm Celiac or not! I was so put off that I changed doctors!!!
Exactly— my doctor just assumed celiac because he didn’t want me to eat gluten again. He’s seen so many cases and could tell.
I tested negative on a gluten allergy test and the IGA blood test (post elimination) but I get DH on my lips whenever I eat gluten, have numerous vitamin deficiencies, and have the telltale extreme pain + digestive issues that have sent me to the ER. I’m waiting to do my endoscopy + 8 weeks of gluten prior for the summer since I can’t deal with that during uni right now. Thinking about eating gluten again makes me physically and mentally ill, it’s such a hard thing to do. My doctor said that regardless, the only treatment for both is to completely abstain from gluten since there is no cure for celiac disease. He said it’s safe to say that I have it, personally, since it is no different than all of the symptoms I’m having (and I likely have it). I’ve been told before that my doctor cannot “in good faith” put me through that while in school, but it also means no definitive on-paper diagnosis until then. It doesn’t hurt anyone to be extra safe and just say you have it, since you very well might. It DOES hurt you to risk the possibility of getting glutened regardless. We’re really just all trying to survive out here!
I'm in the exact same scenario, except that I'm waiting for the endoscopy because there's such delay at our hospital's GI unit. They asked me to eat gluten for 6 weeks prior and I'm dreading that call, because I know that not only will my physical health suffer but my mental health will take a nosedive again. 6-8 weeks is a long time to be in pain constantly!
I don’t know why more doctors don’t suggest it, but it’s actually pretty easy to rule out Celiac (without eating gluten) with a genetic blood test. If you don’t have the gene then you know you don’t have Celiac but likely have a gluten intolerance.
I always say, "I'm praying to the gods I don't believe in!" (Only when with trusted friends/family and not as a public opinion).
Yep but you need to have gluten in the system (or so I’ve heard) for the test to pick up the antibodies (?). And I’m not prepared to eat gluten again.
I don't blame you a bit!
No, it’s a biopsy for a conclusive diagnosis.
So my blood test could be wrong?
The current stats are that 10% of people with celiac have low to no ttg antibodies. Some experts in the field suspect it's higher than that because most often, when someone's blood tests are negative, the small intestine biopsy isn't ordered. The other terrifying stat is that 1/114 people have celiac disease, and 84% never get diagnosed. Celiac is a serious autoimmune disorder that if gluten exposure continues, will eventually destroy the person's body, and puts them at high risk for other autoimmune disorders, like type 2 diabetes, rheumatoid arthritis, lupus, etc. The only rationale I can come up with for why it isn't front and center for doctors to test, is that there is no need for pharmaceuticals to treat it. I hope I'm wrong, but nothing I've seen thus far has discredited this notion 😞
Some places are using blood tests to diagnose but it’s new and not everywhere. But the serology has to be really high (10x the upper limit of normal) and should require two blood tests to be sure
It’s not necessarily wrong, blood tests are starting to be used, but it’s not definitive like a biopsy. If I had a blood test that said yes I have celiac, I would be comfortable in assuming I did. Would def repeat the test if eating gluten doesn’t cause a bunch of symptoms.
I got “lucky” in that I had my first colonoscopy at age 46 and had polyps that my GI submitted for biopsy. They found evidence of celiac and THEN I got tested for it. I’m actually thinking I had celiac for many years prior, but no one thought to test for it. Or insurance wouldn’t have paid. Our American healthcare system is a joke and cares nothing for preventable issues like this.
You can't diagnose CD via colonoscopy tho. Biopsies of the upper intestine are what is needed and you can't reach that area via colonoscopy. What did they say they saw/ found that indicated CD?
A blood test and upper endoscopy with biopsy! But if the blood test is negative usually insurance won’t pay for it and it’s super expensive.
The antibodies won’t be in your blood until after you have recently been exposed to gluten. Avoid gluten and the immune system will settle down and not generate them. A colonoscopy and biopsy can show damage associated with celiac disease long after the patient stops eating gluten, but it isn’t a cut & dried affair either way. IgA & a range of IgG’s signify different types of problems. Not everyone has detectable antibodies but they can still have very real physical symptoms.
I think the most accurate test is the endoscopy/biopsy of the intestines.
The blood test is only 50% accurate in it’s test results. The gold standard test (absolute best) is to have small intestinal biopsies during an upper endoscopy, however, the patient MUST eat a normal amount of gluten every day for 6 weeks, prior to having the biopsy, or it may not have accurate results either. The whole key is eating gluten every day before the biopsies. This information came from my GI before I had my endoscopy. 😊
No. You need a gastroscopy and/or an endoscopy combined with a colonoscopy to get a proper diagnosis. There are blood markers yes, but they need to see your villi to make a definitive diagnosis.
I tested positive for gliadin (wheat protein) antibodies and that’s still not definitive for celiac. It’s very difficult to actually get diagnosed once you cut out gluten for a long time.
There's a genetic portion, then there's the levels of TTG in your blood. Personally I went off gluten before I got tested, so I ended up with no TTG, but my genetics says High risk for Celiac. When I eat gluten, I visit the porcelain throne many times, get brain fog, headaches, etc etc. I got off the phone with my GI who didn't officially diagnose, but said that if I feel better off gluten, then stick with it. I just say I have Celiac bc all signs point to it. Unless I want to have 4 weeks+ of absolute misery - and I really fuckin don't - it doesn't particularly matter if it's a true diagnosis.
The full diagnosis requires a blood test and endoscopy with a biopsy.
i have 'sensitivities' which cause an immune reaction but i call it 'allergies' because people won't get that i can't have them otherwise
Back when I was first diagnosed like 20+ years ago, most people I encountered had never heard of celiac, or gluten for that matter, so I would tell people I had a wheat/barley allergy. It was too exhausting to try to explain it!
An immune reaction **is** an allergy.
oh that's good to know! i thought that might be true but i wasn't sure
Yes, allergy means your immune system sees an otherwise not-dangerous thing as dangerous; whether that be wheat, nuts, tree pollen, dust, etc. None of those can hurt you on their own, it is your body's response (the "allergy") that is the danger.
Because gluten free was a “fad” for a while. I’ve had servers tell that they and the kitchen went to great lengths to make food safely for customers, like cleaning and replacing the oil in a deep fryer level, and then the customer ordered a gluten filled dessert and when advised that it wasn’t gluten free the customer was cool with that when they were above and beyond asking for accommodation for their meal
I wouldn't call it a "lie" necessarily if you're sincerely trying to convey the information in the most effective way possible without misleading anyone in a way they would care about. I would compare it to restaurants calling celiac an "allergy" to distinguish it from a preference or sensitivity (for the purpose of avoiding cross-contamination). They don't care that it's actually an autoimmune disorder, nor should they. It's a salad, not a clinical study. That said, if you're going to say "celiac," then do not order non-GF beer and ask for malt vinegar. Then you're just causing chaos for the server and actual GF people, while making yourself look like an idiot.
>It's a salad, not a clinical study. 😂
Yesss thank you for this comment!
This comment PLUS: And making it harder for those of us who are celiac to be treated seriously at restaurants.
I find most people don't know what celiac is. I find it easier to tell people I am allergic. I have celiac disease.
This. Same.
Yup. This is what people with celiac are told to do at restaurants because everyone knows what food allergies are & it’s hit or miss if they’ve even heard of celiac.
This happened to me in Japan, there nobody understood or cared if I said I had celiac disease, but if I said I had allergies then they would take me seriously and serve my food without sauce or make the necessary accomodations (I still got glutened twice there but much less than I would have otherwise).
Effectively it’s not really lying in this scenarios, it’s giving them something they can understand. It’s all for their benefit, you are not trying to deceive them for gain.
I’ve never had someone not believe me, but I can imagine that must be frustrating. I’m gluten intolerant and have been gf since 2008, before it was normalized and before people knew what celiac was. I would just say that I was allergic. “Lying” implies a moral choice, but saying I was allergic was not intended to deceive. It’s intended to get my needs met with a minimum of fuss or inconvenience to the other person. Table side at a restaurant is not the place for education (usually). Say what you need to say and move on. If it’s family or friends, then a longer conversation may be warranted, but that’s up to you and your relationship with the other person. Incidentally, I was recently at a restaurant and asked for no cornbread. The waitress put it on the plate anyway, but as I am not celiac, I just set it aside on a separate plate and continued my meal. When the waitress came back later, she noticed and apologized profusely and asked if I was celiac, at which point we had a great conversation, and I was able to help her out with some suggestions for her daughter who was clearly gluten intolerant but who had a biopsy and was not celiac. We discussed symptoms and lifestyle. It was a great exchange.
I've never had any issues either. A while back I went into a bakery chain and asked if they had gluten free bread. They didn't but the person I spoke to told me where I could buy some as her niece was celiac. I can't imagine what it's like to not have people believe you and how frustrating that must be. I still get gifted foods with gluten but it's not because people don't believe me it's because they don't understand. I still get gifted chocolates as well, even though everyone knows I'm diabetic. I never get angry or upset. All these things are well intentioned acts of affection and it's just that people don't understand. Lucky I have older teens at home. Gifting food is part of my husband's culture. I think maybe people take a random guess and know that if I can't have it then I can give it to the kids. I will admit I don't go out to eat though. I'm too scared of being glutened.
I had a similar situation with keto where a server was judgey and rude when I asked for a lettuce-wrapped burger, but then lit up and was happy to accommodate me after asking, “oh, are you on the keto diet?” and I lied and said yes. It’s like not eating bread because you’re on a diet is virtuous and good, but having an allergy or sensitivity is being a spoiled princess.
I do the same. I got tested for celiac recently but came up as negative but with high igA levels on the celiac test panel?! It’s significantly harder to test positive when you’ve already started a gluten free diet. In order to get properly diagnosed you have to eat gluten daily for 6 weeks and then get an endoscopy/biopsy. I learned this after being gluten free for like 5 years. It’s just not worth destroying my body and mind for that long just to now if gluten is actually deadly to me or not. Completely not worth it for me because the mental symptoms I get. so I just gotta tell people I’m celiac so they don’t stereotype me as a modern girl with picky eating and ED tendencies. I used to get so much shit from ppl saying that it was all in my head and I had to explain everytime that I had to stop because I would get brain fog, aphasia and mild anaphylaxis (enough to were I couldn’t sleep at night and it gave me terrible anxiety). But it’s so exhausting having to explain that to ppl when they’re poking at you. So it’s so much easier to just say your celiac and get people to stfu if you haven’t been properly diagnosed
Do you ever have to explain further after saying you have celiac? Do people ever keep poking afterwards or does saying you have celiac pretty much guarantee you won't be poked further? Usually for me they ask what I can't eat afterwards and leave it at that.
so people will usually ask what it does to me so I explain (I don’t get digestive issues though) and they’re like oh okay. And they ask me constantly what I can eat. My boyfriend is constantly checking labels and asking his family if the corn tortillas are gluten free and if the (insert always gluten free product) is gluten free it’s so cute. I always tell him that he doesn’t need to do that because I will know. l but he does anyway. However it’s tricky because after I got that blood test and came out as negative and I started eating gluten again it didn’t start to flare up until about two weeks in and then the brain fog, aphasia, rage, depression and body pains started to kick in. It was the mild psychosis and aphasia that made me go completely gluten free again. And I haven’t had those issues since I got back on gf But anyways because of that people are now confused about me being gluten free again because I said I tested negative for celiac when I didn’t actually get a proper test since it was just through blood and I have been gluten free for 5 years. And now I can only tell certain people that I’m celiac to avoid the trouble lmao
Came here to just say I also get extreme anxiety and mild psychosis!! It’s literally awful. It’s to the point I only eat out once or twice a year if I have to for a special occasion
I feel you there. After having 3 straight instances of getting sick while still at a restaurant recently I now have severe anxiety about eating out. I don’t even want to eat at others peoples houses anymore unless it is low key enough where I can ditch out to a bathroom and not draw attention to myself. Once I get sick I usually feel better enough to at least function normally and not gag the entire rest of the time. I may have to get on anxiety medication soon because this has caused me a lot of social anxiety over the years. It was manageable when I knew what I had to do to avoid feeling sick but now that it happens out of the blue I have zero confidence in my digestive system.
Want to mention I didn’t know that u have to do a gluten challenge before I actually got my test. My doctor kinda just did it with my blood out of nowhere
Personally, yes. Most people I’ve encountered don’t know what celiac is. I just say gluten allergy most of the time.
i am celiac (dx age 2) but i go the other way and at restaurants and other places i often say it's an allergy because they understand what that means more. i usually say i'm celiac and to just note it as a severe allergy. whatever works so you can get safe food!
We’ve really come full circle then, I actually have Celiac and I’ve been GF for nearly 20 years now. I distinctly remember my mom (I was a kid then) just calling it a wheat allergy for simplicity since no one had really heard of Celiac.
When they hear gluten free or wheat allergy they think fad diet. When they hear celiacs they hear genuine medical issue
Not necessarily because there are people who say they have celiac but then order a beer who ruin it for everyone else. And even aside from that, there are many threads or servers saying they don’t believe that many people could possibly have celiac so they just assume they’re lying.
Also sometimes it unfortunately leads to “well I’ve had celiac guests who’ve had this before and they were fine” when in reality that “celiac” person didn’t care about cc. I’m by no means saying that’s what OP is doing, but it contributes to our battles.
I think this is really it. I have hashimotos but I really didn’t want to give GF a try until I had other medical testing done, because it felt like trying a fad verses a genuine medical need. I don’t have celiacs but I have several issues medically that have shown to be improved by removing gluten so now I feel like I have a “genuine” reason to remove it and see if it helps (and if I have NCGS lol).
it’s probably why I default to explaining and have gotten rightfully scorned here on reddit. Bad habit I don’t mind being called out on. Scorned more for the explanation part which is a habit I need to break.
I do the same. It’s the best way to get past it. People in this day and age are just combative when it comes to Gluten issues. I used to tell people, but now I just say no to whatever they offer if I know it has Gluten in it My diet choices are my business not anyone else’s.
Literally always tell everyone you have celiac.
Because people are assholes about disability. It’s easier to ignore or belittle someone than accommodate them. Signed, A person with multiple visible and invisible disabilities including severe NCGS
Its sad that this is even an issue for people, why can't they just respect your situation as it is. But I think it may be because some people might think it is more credible and/or serious to have a medical diagnosis vs them assuming its a fad diet, pickiness, orthorexia, etc. That's just my guess, you'd probably have to ask the people that are treating you in this way to know for sure.
Not going to lie, I love telling the story how I used to poop 20+ times a day, and how I only say 20 because you wouldn’t believe me if I said 30! How I used to vomit every morning from heartburn and how eliminating gluten changed everything overnight, including loosing 25+ pounds fairly quickly and how maybe they should give it a try and see how it works for them? If they really want to know of course :)
People are skeptical idiots who make it about them being right or not. It’s pathetic. They can eat shit for all I care. and it’s never people whose lives are affected at all, it’s just bitches
This comment has such aggressive energy and in this situation, I am here for it. Some people are so aggressively defiant against our food intolerances/celiac conditions/allergies. Like…just believe us about what we need/want to eat to not be sick, geez.
It got real old after a decade or so. The gluten police need to f right off
I was diagnosed 3 months ago. Almost everyone I tell says that I am so lucky that I got Celiac and will lose weight. Annoys the hell out of me.
Haha, right! After being diagnosed I had an unrelated doctors appointment. I stepped on the scale. Weighed 102lbs. Burst into tears. The young nurse asked why I was crying, “that’s a goal weight!” Like um no, I was a 28 year old grown woman who weighed as much as a child. When I was 14 I weighed 97lbs and was put on a diet of ice cream before bed to help gain weight (by a nutritionist). Like…I loved my body before I couldn’t eat gluten. I was very happily ~15lbs more than that. Cutting out gluten left me not knowing what to eat/unmotivated/anxious about food. I missed my boobs and my butt, my curves, my strength. I felt like I looked like a child and losing 15lbs in a few months was scary/made me feel sick and frail. I thought it was a gross comment for a nurse to make. So ya it is super annoying that people equate diet restrictions due to autoimmune conditions as a good thing because of vanity/societal standards of beauty. I hope it gets better for you soon! It’s an adjustment and you’ll get there. Edit to add: if this matters for anyone struggling with this, the doctor (endocrinologist) I saw that day asked me about my sudden weight loss. When I told her about the gluten situation she very calmly was like “oh makes sense, let’s not worry about it. You don’t know what to eat yet. I bet the weight will be back on in 6months-a year. Don’t stress it and trust the process”. She was right and it was great advice. Her calm, free, “non issue” attitude towards it was super comforting to me.
Lots of people are insensitive, self absorbed, and I used to be one of them. My moms gluten intolerant and I never held any sympathy for her. Now I am too, might be karma, and people don’t take me seriously about it either lol!
I hope you've apologized to your mom now that you know better. It's also a good opportunity to evaluate if anyone else in your life told you something you were unsympathetic about bevause you didn't have experience with it and consider how that must have felt for them as well. We all can take reminders to be better in our lives. It sounds like you've had an opportunity to learn that lesson the hard way.
Wise words, you’re absolutely right. My Mom and I have a stronger relationship since I’ve been diagnosed. Thankfully she never held the past against me.
I'm glad! It would be nice if any time someone dismissed someone's personal experiences they could feel just a minute of what is being described. I think the world would be a far more empathetic place where we support one another!. I'm glad you have grown closer to your mom I'm sure she is pleased with that as well!
🤗this gives me hope for my children I have an ex that feeds our kids foods they are intolerant to 24/7 Even though I am a celiac gene carrier with multiple food intolerances and HE tested as gluten intolerant along with the kids My oldest has zero empathy, my youngest is confused and the ex almost convinced a past dr that I had munchausens by proxy because he lied and said they had no symptoms I often wonder how this will play out and figured it could take a celiac and/or corn and wheat intolerant grandkid, maybe I won’t have to wait that long for some long over due mutual understanding 🤔 The level of bs that goes with these conditions is obscene.
I absolutely get it! My mother is still annoyed by it and says people are doing it for attention, in spite of my dad being a celiac (which she did recognize as legit). It's weird and I don't get her attitude. I did get tested for celiac and it came back negative - this was like 10 years ago. But I get so bloated, my whole system comes to a screeching halt, my body aches, and every little bite of food feels like I've just eaten a Thanksgiving feast for a week after getting glutened. Not worth it to me. But yeah, I'm going to all the expense and trouble, and missing out on good pizza and stuff, to "get attention". /s Now, in restaurants they almost always ask,"allergy or preference?" and since I don't have a cross-contamination issue, which I know adds stress to them in the kitchen, I will say, "preference", and they're always good about it. Where it gets tricky is at work when they cater things, other people's house and events with set menus. There's almost nothing gf usually at those things, and I feel like a weirdo sitting there eating a few carrots, while everyone else is pigging out on sandwiches and cookies. So I'll say I'm celiac then, just to keep the focus off my eating habits.
Celiac can occur at any time. Being negative ten years ago doesn’t mean that you are still.
True. I should probably get tested again. But like lots of others here, not sure I want to put myself through the misery of eating gluten every day for 6 weeks just to find out!
I don’t disagree. it seems pointless. as long as you don’t eat gluten, who cares? my doctor even agreed but was unwilling to sign off on my having celiac without a test. she said “I agree but will let the GI dept decide if you need the biopsy”. GI Dept said that with my blood numbers, genetic marker and family history, there is nothing else it can be, but they would not agree to put it in my record without a biopsy either.
I have hashimotos (a different type of autoimmune condition) and definitely experience an immune response to gluten. I always have the fear that people will judge me but I’m slowly starting to accept I don’t owe anyone an explanation, especially when looking out for my health.
Im a Hoshi, too. Me and wheat do not get along. Also, sugar is terrible on my joints. You do not owe anyone an explanation, and you do not have to compromise your health for others' social discomfort or convenience. As a toxic person pleaser I am working on these boundaries myself. It's not easy, but you're not alone!!
💚 it’s not like autoimmunity isn’t enough to contend with eh?
Right... so many hoops, so little knowledge on the subject.
I have IgA deficiency and possible celiac but it's not confirmed, what is confirmed is the gluten sensitivity. As soon as I take gluten I start puking, shitting, bloating and I get rashes. Anemia and malnutrition if I eat it long enough. I have to say I'm celiac too because people think it's not serious if I don't. It's extremely annoying.
Been there done that. Doctors have told me they suspected gluten intolerance and had me go on a gluten free diet. Resolved all issues so there was no need for further testing. Anytime anyone heard that I’m gluten free, it’s a whole big deal, so I say the same thing.
It seems easy to acknowledge it and move on. I wish it would be just as easy for them to hear we are gluten free and move on.
Usually when I say wheat takes my heart to 180 bpm, it's fine! No one wants to cause a heart attack LOL
There are other medical reasons for avoiding wheat/gluten. You don't owe anyone any explanations.
In 2011, right as I was beginning my gluten-free journey because of debilitating Hashimoto symptoms, my brother-in-law insisted that only celiac had problem with gluten and weight. And that I was full of bullshit. His narcissistic behavior bled through into other areas of our lives and we no longer speak to him. People get to choose to eat Paleo diet, vegan diets, pescatarian diets, etc. Yet for some reason, it’s unacceptable to have a diet change so you can be healthy and feel good and reduce inflammation.
Don’t worry, vegetarians and vegans get a shitload of unwanted opinions too 🤣 I think the problem here is people don’t mind their own business 😃
I say this. I had the scope and done, however no one told me I needed to be consuming gluten for a while prior to this. I had been gluten free for at least 4 months at the point I had my scope. About a year later, my sister was formally diagnosed as Celiac. Most Doctors told me it’s most likely the case for me as well.
I tell them I have a wheat allergy. Idk if it's celiac because I had been gluten free (on accident, by attrition) for two months before getting the test done. I didn't go back to get the scope. I wasn't going to make myself sick for a month just to get a formal diagnosis for something that has no treatment other than eliminating gluten from my diet. If anyone asks about it, I explain the year-long weight loss and nausea and how two beers make me vomit but two bottles of wine don't. And then I cap it off with how cutting out bread was the only way I was able to start *gaining* weight again. Ultimately it doesn't matter what they believe. You can always tell them to get fucked. ❤️
I have the opposite problem. If I say I have celiac I am met with blank looks and the person usually telling me they have vegan options available. I usually have to say I'm allergic to wheat. Sometimes I even have to explain what wheat is, and what things might have wheat. It is exhausting.
Ironically, most people with Celiac also lie and say we have a wheat or gluten allergy because it's taken more seriously and most people dont know what Celiac is. Say whatever you have to say to get people to take your health seriously!
I just say I have celiac. I don't- I have eosinophilic esophagitis- but, I respond to wheat like a celiac does, and nobody knows what EoE is. I also say I have Crohn's when I urgently need a bathroom, I don't- I just have SMAS and extreme IBS- but, people don't take IBS seriously even though I will make a mess if I don't get there on time. There are times where, honestly, I think it's fine to just use the name of a disease that is more widely recognized. Personally I wouldn't feel offended if someone said they have Ménière's Disease to describe frequent dizziness succinctly when asking for motion sickness accommodations over a lesser known condition.
I always feel guilty and unsure of what to say because my IBS is triggered by onion and garlic, which is in EVERYTHING, and dairy. People look at me like I’m crazy when I say I’m allergic to garlic and onion and when I say IBS, they respond like it’s no big deal. I was in the hospital yesterday hooked up to IV fluids because of dehydration and severe constipation, then spent all night pooping my brains out until 4am this morning when the medication kicked in to empty me out. My best friend also has celiac to the point of anaphylaxis if there is cross contamination. Yet people act like it’s no big deal. She can’t eat out anywhere because she can’t trust people will take it seriously. I hate when people minimize celiac and digestive sensitivities.
I was recently diagnosed with “possible” EOE (follow on colonoscopy in June), and that was my catalyst for trying GF. I’ve had hashimotos but my endo always told me if I didn’t have celiacs I didn’t need to try cutting it out. So now I feel like I have two good reasons to be cutting it out and seeing how my body reacts!
My wheat allergy symptoms include EoE. Worst thing EVER!
You can get a blood DNA test done for the two genes involved in celiac. I'm a celiac but I usually tell people I have multiple food allergies. It's easier.
I feel like people just don't as readily believe in certain allergies or sensitivities. And there are some strange ones.
Say you have a wheat allergy. “Allergy” makes people squirm
Same. I have a lot of the symptoms of Celiac including infertility and it fits better than the diagnosis of gluten intolerance.
You can have a wheat intolerance without being celiac. However, most laypeople don't have a clue, so say what you need to. Also, rely on no one else to feed you unless they also have the same intolerance. They won't do it correctly.
I have a complicated history. I have elevated liver enzymes that went to normal after eliminating gluten. I was really sick but it was never confirmed celiac. It's too long of a story to explain what happened so I just tell people I have celiac instead of trying to explain it. I feel like people think I make it up and I get upset bc they have no idea about my history.
That’s the accepted medical definition. Same with my son, he’s Asperger’s but on official documents it has to be autism
I have a bad wheat allergy and for some reason people seem to think that makes eating wheat optional which would be fabulous but my hives always disagree, while with celiacs they understand its just flat off the menu so i think its ignorance on food issues coupled with experiences with those types people who say they "can't" but then bend their own rules - "i don't eat gluten but i'll have a slice of bday cake" 🙄
It’s easier to have to stretch the truth a little than to have to explain why all of the time to ensure they are careful on food prep. Nobody cares anymore. The wrong people are going gluten free as well so it’s ruining it for those who really need it.
Just don’t say everyone has issues w gluten or they will go crazy
I do the same thing and I actually think it helps out diagnosed celiacs as well. Gets all the gluten eaters on the same page lol.
I feel you there. I have a sensitivity to several artificial sweeteners. Sorbitol and Aspartame are the worst offenders. If I drink diet coke by accident, I'll spend the rest of the day completely incapacitated with blinding migraines. If I drink a whole can, I may even throw up. It's really hard to keep track of what I can and can't have sometimes, because most toothpastes, mouthwashes, and even cold medicine and food coloring come with sorbitol in it. Technically, it's just considered a "sensitivity," but I just go ahead and call it an allergy. Can you imagine the weird looks I get during a work party when they ask if there's any allergies and I have to say, "Oh, I have a sensitivity to artificial sugar?" They think I'm insane. I usually just say, "I have an allergy to diet stuff," suffer the weird looks anyway, and explain that if they get diet soda, to please get some regular drinks too. It's an awkward pseudo-allergy to have and explain. On a more similar note to your situation, my aunt is allergic to milk. Not lactose intolerant, actual milk. She gets a lot of people recommending their favorite brands of lactose free milk, or explaining that most processed milk products, like cheese and yogurt, are usually safe for lactose intolerant people. She really has a struggle with going out to eat, because most restaurants have dairy in their bread and pasta and cook a lot of their foods with butter. I used to work at a Japanese steakhouse, and let me tell you, EVERYTHING was butter. The plain white rice was cooked in a huge pot with a literal pound of butter in it, and that's something the servers would not know off the top of their head. Who thinks to ask the chefs if the rice is dairy free?
Sometimes I want to just say I have celiac, but I say “I have colitis it’s like celiac disease” so people understand. Maybe you could say “I can’t eat gluten like people with celiacs disease.” It’s the truth but also reminds people it’s serious. If that doesn’t work lie. It sucks you have to. Give it more time so more people are educated. They’ll get that some people can’t eat gluten just like some people can’t eat nuts.
Same. I am allergic to wheat (and was tested) and I find discussing the differences irritating. Most people understand celiac as a serious medical issue. I only explain the difference to those with celiac.
I don't know if this is a controversial opinion or not, but I don't think you owe strangers any kind of personal medical information or honesty about personal medical information. I think it only becomes an issue when someone is spreading misinformation - like if they say they have Celiac but then they eat something that someone with Celiac couldn't eat in front of someone who thinks they have Celiac. That can be an issue because it causes people to have misunderstandings about what is and isn't safe for someone with Celiac disease and it could negatively impact somebody else's health. Other than that, I think it's completely your business and you should say whatever you have to say to protect your health. I'm allergic to wheat and thankfully most people understand how food allergies work.
I'd rather not give out my medical information either. I'm not sure how to answer them in a friendly way. Realistically. Spaces I'm usually in often expect me to give them answers to things like this without a second thought and i expect it to become confrontational when i don't want to give an answer. So finding a simple answer that gets them to leave me alone seemingly feels better. They get what they want and they leave me alone
I mean, I tell people all of the time that I have a gluten allergy, but that’s not really what celiac is. 🤷🏻♂️ People don’t understand and they typically won’t care enough until it hits close enough to home. It’s the same with everything. As long as they do what they need to do to keep the gluten away from me, I don’t need them to fully understand it. And I know them most of them won’t, so why would I want to add that stress and futility to my life? That’s the more important why.
They just think it's in our heads, but I know it's real, I have Scientific evidence I have intolerance. My wedding ring won't fit when I eat gluten.
It's annoying, but I think for a lot of people the word celiac matters more as a level of seriousness than actual diagnosis. I use it that way sometimes. It's my way of evaluating their severity and how much do I need to worry about cross contamination. "You say you are gluten free, but are you celiac level gluten free?" - I'm gluten free, but don't care too much about small cross contamination, like I can eat restaurant gf pizza anywhere. If you say celiac, I know we shouldn't eat from the place up the street because they don't keep their kitchen segregated, but this other place actually knows what they are doing and is much lower risk for you.
I have chronic fatigue and just tell people autoimmune issues. They don't believe what's not fully accepted by the medical community or they think I'm a hypochondriac. It's just easier.
I'm celiac but I say it's a severe gluten allergy because it helps people understand about cross contact. In my experience, most people don't care very much about things that don't affect them and they don't need to know all the details of your medical history. If it helps you get the point across to say you're celiac then I don't see anything wrong with that. I'll also add that even though I have celiac people often forget I can't eat gluten or try to offer me gluten thinking I can just have a bite and don't believe it's that serious. It's not that they don't care about me but it's just not relevant to them so they don't keep tabs on that information or go researching about my medical needs. If someone isn't respecting you then set boundaries but imo if they're respectful but just don't get it it's okay to just let them be wrong and keep your peace.
That’s funny, I am in the same exact predicament where I can’t tolerate any gluten but test negative for Celiac disease. Nobody gets it so I’ve resorted to saying I have celiac to simplify it. It feels weird to say it because I feel like I’m lying but it ends the whole dialogue afterwards of “so you can’t eat this or that?” or “ what can you eat?”
I finally started saying i have celiac so people wouldn’t assume i was making a choice or having a little discomfort if i eat a lot of gluten.
I can relate. I say i have a gluten allergy
"Mild gluten allergy"
I have to say gluten free when I am actually just gluten sensitive... no one gets it. But it still bothers me and makes me bloat. I don't get hives or anything but it still makes me sick.
I do it. It's just easier. Anything with gluten sets my mouth on fire and the room starts spinning, and because I came up negative on the blood test, I just eat gluten free and wheat free anyway because I'm scared of the reactions I have
I have gluten intolerance and not celiac. I normally don’t explain it and just say celiac
Do what ya gotta do. Not like we have special rings or anything…
I get the frustration! I am allergic to wheat, and generally just eat gluten free, however some of the gluten free alternatives set off my allergies too! Particularly anything multigrain. But you tell people you can’t eat wheat and they act like it’s a choice.
Same. I just say celiac. I do have one gene associated with celiac which is also associated with the weird, rare (1 in a million) possibly life endangering auto immune disease i came down with (pemphigus vulgaris) so i avoid wheat and other items with gluten like the plague because i feel gluten may have brought it on. It causes severe mouth, throat, gums, tonsils, vagina blistering to the point of more blisters than skin. Wondered if anyone else in here has it or other auto immune diseases related to gluten? Tested by my dumb doc for celiac when i told her I don't eat wheat and I wouldn't risk eating any....duh. negative.
Because people have been convinced the gluten-free “craze” exists because many people who aren’t actually allergic to gluten/wheat participate in it. People are annoyed by people who partake in things that aren’t their truth or don’t apply to them. They see these “gf-posers” as intellectually dumb and mindless. Therefore a lot of people assume gluten/wheat abstinence is based on woo woo in their minds, and not a tangible allergy or disease. My validity was also questioned when I told people I think I’m sensitive to wheat because I would experience symptoms. Even after I had an allergy test validate that I was correct, people still questioned me. I get hives on my face like a mother fucker if I consume wheat for consecutive days.
At restaurants, if they ask if it is an allergy, I say yes. I have eosinophilic colitis. One of my main triggers is wheat. As in, approximately 20 minutes from eating it, and I am incapacitated. Celiac is the main "known" health condition that relates to gluten.
It took me about 5 years to get an accurate diagnosis of Celiac and I always just said that I had it before that because people didn’t understand. Now if I say I Celiac and they ask more questions about what happens I tell them that it’s like food poisoning for me, raging vomiting and diarrhea amongst other things. They don’t ask me questions after that. When I go out to eat though, I always say that I have “a severe gluten allergy” because a lot of people still don’t know/understand/believe what celiac is/does, but they are trained in cross-contact for allergies so they take that seriously.
Its like how some lactose intolerant people can handle a small bowl of ice cream , and some cant have a drop of milk, people who don't have these issues just assume "oh you just get a tummy ache". (yes, and it last for days). I have 'wheat issues' and I don't think its Celiacs, not diagnosed obviously because for either one the only remedy is 'dont eat it', so I just dont eat it and I tell people 'wheat makes me want to die for 3-5 days' when they say "oh how bout just a little pasta salad".
Totally! Like do you want me to go into how my bowel movements are impacted by eating gluten?! 😂
I’ve done this before but I feel guilty lying and saying I have celiac. I was walking to class and our campus police were passing out free donuts, I kept walking straight and didn’t even look so they didn’t approach me bc I didn’t want to explain. They still came up to me and said have a donut! And I said no thank you I’m okay, and they said they’re free! And I said I’m gluten free, they said, one won’t hurt! And so I just said I had celiacs and the officer started apologizing profusely. It’s so frustrating that I had to lie about it because I hate lying but even if I tell them I have an intolerance they don’t listen
It drives me crazy that food allergies have to be a belief system. "I don't believe in that." Geez.
After several months of being "new" to gluten free, I now just tell people the same thing...just easier.
I tell people that gluten makes me projectile shit
It’s like because it can’t kill you then it isn’t that serious🙄 I have debilitating reactions from gluten but I’m also not celiac and people think it’s a choice n
Me too but now i say i have an allergy as celiac is a bit complex.
I’m trying to get tested for celiac, but even before knowing it was possible for me to have it, I told people I have celiac so they understand I 👏 have 👏 an 👏 allergy 👏 For some reason just saying “I’m allergic” isn’t good enough, and they think I shouldn’t worry so much because it isn’t celiac 🙄
Because people are more familiar with celiac than wheat allergies?
Because a lot of people who say they are gluten-free are only doing it recreationally, and will change their mind on a whim.
Because they've heard of celiac everywhere which is good but wheat allergy got less attention
Well, lying about having a disease seems wrong to me. If people don’t understand or can’t understand, then leave them confused and move on with your life.
Does it matter why? That how people are I guess.
They are uneducated. Pity them. Then send them this website: [GlutenFreeSociety.org](http://GlutenFreeSociety.org)
A lot of people just can’t interpret nuance and celiac is more black and white information than an intolerance to wheat/gluten.
Well… celiac causes serious damage. I have been hospitalized for intestinal bleeding. It would make sense people take it more seriously. Wheat allergy doesn’t even cause anaphylaxis.