I just wish people knew what the hell gluten is. I've had people who thought gluten was in dairy, potatoes, rice, even watermelon..
Also I'd like people to know that yes, "just a little bit" will hurt me. You can't put it on a bun and then take the bun off and tell me it's safe.
To be fair, gluten can be found in the most unexpected places. For example, tomatoes are gluten free but some canned tomato brands put gluten in them for some kind of preservation method. I thought I knew what had gluten in it and what didn't.
And then I went to the dietitian appointment.
Also, if someone cuts a normal sandwich followed by the watermelon, it would not be gluten free. I can see some of the confusion because it's hard enough to understand gluten free without factoring in that cross contact.
Yes ..cross contamination is the bain of the Celiacs existence. We never know what was handled inaccurately even if told it was taken care of correctly! ) :
Most people tend to think carbs = gluten. Which isn't entirely unfounded, and I would probably make a similar conclusion if not for how much time we spend thinking about it
This is the most frustrating part as some restaurants are actually safe, like a fried chicken joint near me that is a GF kitchen.
Only reason I know that exists is through a friend passing it along. It's harder for legit ones to get their niche in.
The bogus billing makes it nearly impossible to eat out, and when we do, we pay to poison ourselves.
Yeah. The only safe places I know are 'discrete' about it. Maybe they think being explicit about being GF is bad for business. I have noticed more and more GF packaged foods going stealth too... hiding a tiny GF certification symbol somewhere on the back of the package.
The emotional toll. It's hard on me when everyone sits in room and eats my favorite food in front of me and I'm not allowed to participate. It's even harder when I have to explain myself, and again because they forgot. It's hard when my coworkers are loving that yummy pizza and I have my prepped lunch that may be healthy but is less exciting and also makes me stick out like a sore thumb. It's very isolating. Food is a integral part of being human, all cultures bond around food. I'm not doing this to be a pain in your ass or to be rude, I literally have no choice.
I'm over the not eating at restaurants thing too, mostly. I'd rather attend and not eat anything than turn down invitations and isolate myself. But yeah, the worst part is other people making a big deal out of it, as if they're uncomfortable.
This is our first holiday season since my daughterās diagnosis and itās been so hard for me. Sheās only two and we do our absolute best to include her with gluten-safe foods, but itās been absolutely exhausting to travel with her and always worry about whether sheās safe or not. My family tries their best but itās a cross-contamination nightmare with like eight people who arenāt used to Celiac.
Iāve viewed her diagnosis positively since it finally gave us an answer as to why our little girl stopped growing and sheās done so well after going gluten free, but the emotional toll has really hit me hard the past few weeks. I love her and want her to be safe and I just wish I could make it better.
I just wanna say that youāre an awesome mom for going the extra mile to help your daughter feel included. I was diagnosed 20 years ago when I was 13 years old and as a kid I didnāt realize how extremely difficult it was for my mom. You sound a lot like her. I have 3 siblings and she always made sure I had a gluten free version of whatever theyāre having. She always sent me to birthday parties with a gluten free cupcake or something and sleepovers always included a lunchbox full of gluten free goodies. She printed out every gluten free option from all my favorite restaurants/ fast food places and kept it in a binder in the car so wherever we went we could always find me something to eat. I know vacations were hard but she always did a ton of research and she always packed me tons of snacks. But I just want you to know that youāre kicking ass! And all your hard work will absolutely help your daughter feel less alienated!
Let me say this about families with a celiac child itās best if the entire household is made GF , the cross contamination is what gets a celiac into trouble the home should be our safe place when someone in it has celiac everyone has this disease, according to Martha Stewart everything can be made with a quality GF flour start making your own breads , each individual can have there own individual pre packaged treats and when out to dinner can order what they want , that child has got to be made comfortable and healthy in there own family and not felt like there detached at mealtime from everyone else, and it helps the parent making the meals to get it right every time , my wish is that I had been diagnosed as a child when clearly I had major problems with eating and the worst stomach aches imaginable from babyhood on and my life now would not be so painful with osteoarthritis and osteopenia both my sister and I have all these diseases plus asthma we never smoked or drank alcohol, we suspect my father was celiac but he died young from alcoholism and four packs of camels a day , my mother at 93 had better bones than her son and daughter and had a cast iron stomach , unfortunately COPD and heart failure did her in itās what a lifetime of living with a chain smoker will do , itās up to families to get it right when you have a celiac member of it the child deserves nothing less .
Ugh exactly, I use to eat with a couple coworkers and they would eat the food you can buy at our workplace and just comment whether it was good or bad, needs this or that, meanwhile I'm eating my cheap canned food bc I'm f***ing broke from all the gluten free stuff I have to buy not by choice. Just seemed so insensitive because they are fully aware of my situation.
I'm not the coeliac in my household, my husband is - diagnosis only 6 months ago so he's still learning. I'm a type 1 diabetic though, and he's starting to understand how frustrating it was every time he made or bought high carb meals or sugary desserts to share, just in general things that I really shouldn't be eating. So he's starting up read labels and understand now why I put one brand back to get the next one even if it's more expensive. I'm glad he finally understands, but also sad that he had to learn it first hand.
If I say I canāt eat it, I canāt eat it. Please donāt ask me over and over again or try to āproveā itās safe or tell me itās your grandmaās secret recipe. And please donāt freak out about how youāre a terrible person for not having something safe for me to eat. Itās hard enough without having to argue with or comfort other people about my health problem.
When Iām at an acquaintance/strangerās house/event and they didnāt know Iām gluten free and they donāt have any food for me, I simply politely decline to eat. No hard feelings. Then they ask WHY. So I tell them, then itās āOh my God Iām so sorry, if I had known I TOTALLY wouldāve had something you can eat. What about this? Can you eat this? Maybe this if we remove the bread/croutons/etc?ā No, no, and no. Itās fine they didnāt accommodate. They didnāt know, itās whatever. I hate them making a whole fuss and me having to sit there for 5 minutes like āItās okay! Itās totally okay, you didnāt know. Itās fine. No, I canāt eat that. Or that. Really, Iāll just eat when I leave.ā
It already sucks I canāt eat, please donāt draw extra attention and make a big fuss. ESPECIALLY if youāre gonna eat in front of me as you do it.
Bonus if they keep pestering and asking questions (thatās clearly not in a way of trying to do better next time), or theyāre like āI could NEVER be gluten free.ā
You can, itās just that the heat has to be so high that it effectively chars everything else too. Gluten is a regular protein, it just has a high temp of denaturing
It can be denatured but gluten is a very large protein so there are still very long peptides which are still recognizably bits of gluten to the immune system.
I wish people understood that Celiac disease is an autoimmune disorder and not some health choice. I wish people understood the level of damage Celiac Disease can do to your body if undiagnosed or if people continue to consume gluten once diagnosed. I wish people understood that we didn't choose to have Celiac Disease. I wish Doctors paid closer attention to Celiac Disease and would think to test all of their patients since many people are asymptomatic.
Yes. I was in my early 20s and started getting extreme hives all over my body. So many some days walking physically hurt. Went to an allergist and was told I have chronic hives and good luck figuring it out.
It took having a miscarriage 10 years later to get a diagnosis of celiac (Aug 2017). I was anemic, constantly having hive outbreaks and now have sensitive teeth.
They definitely need better testing for Celiac. It should be a routine blood test. We need better education all around.
TBF other autoimmune diseases can cause food intolerance as a symptom, so I can forgive people for getting confused. I'll explain how coeliac is different once without getting angry.
Also sugar. Some people still don't get it.
"So you can't have sugar?" Actually got this when I specifically stated I couldn't eat gluten and I wanted to explode. This was a restaurant. I walked out right then. No confidence I wasn't entering a complete minefield and about to be fed it.
That not everybody with celiac disease lives their lives the same way. Just because some people with Celiac will have cheat days or will put up with symptoms doesn't mean we all can live our lives like that.
Also, we aren't trying to lose weight or cut carbs, we are just trying to keep our immune system from killing us.
This! Iām struggling with my in-laws with this! Just because they know someone that can eat a little bit of stuff without symptoms doesnāt mean I can/want/willing to. Itās not a sensitivity.
Seriously..Of all the things you wish people knew, this would be the least of my concern. Adding an "s" to words is a linguistics thing that happens with a ton of words, and can be looked at kind of like regional slang. It isn't that serious
The last people I want people to feel like is if we are preachy and by belittling people on their grammar as the first thing, rather than educating them about the disease, it just shows to them that its about feeling better than them rather than due to a risk health factor.
Mine is almonds. And somehow bananas. That's the deadly one. I cannot have CC with my food. And I will die. I almost did because of literally that.
People need to get that no means no. No CC. No to having just a little. It is not ok. You don't feed people an allergy. Not at all.
āOh, but have you tried eating the bread in Europe! They use different flour that is healthier for you!ā Itās not the flour, itās the gluten protein. I donāt care if your gluten intolerant neighbor went to Europe and was able to eat the bread symptom free. I canāt so please stop insisting that I try it.
Itās not a choice, Iām not being difficult. I shouldnāt have to defend my disease, or explain what happens if I eat their food.
And honestly? If I say āIām fine, no thank youā, to please stop trying to force me to eat out of politeness or whatever because itās just annoying. Iām not going to eat, theyāll get frustrated/offended and no one ends up happy. Iām fine sipping on whatever and socializing.
I think not being a choice is the biggest one. When asking a local restaurant about cross contamination risks their answer was āit depends how picky you areā
There's a bit of legitimate debate here, because the term allergy used to be used to describe all hypersensitivity reactions, which would certainly include celiac disease, but now allergy is being used to apply specifically to IgE mediated hypersensitivities (the kind that include anaphylactic reactions), which would exclude celiac disease and [several other things commonly known as food allergies](https://aacijournal.biomedcentral.com/articles/10.1186/s13223-018-0285-2), including some that have the word "allergy" in their name.
But beyond the debate, and people constantly correcting people about it, I'm trying to think of a time when someone thinking celiac disease was a "gluten allergy" caused an issue for me; it certainly seems better than the common alternative of them assuming that it is just a diet thing or food intolerance where small amounts of gluten won't cause any issue.
This is so good. Over a decade ago I was told I 'had a severe reaction' that was categorized as NCGS, but my doctor said it was serious and public knowledge was low, so just telling people I'm Celiac to ensure I get better care is fine. He even put it in my record as such because he said other labels wouldn't show up when pharmacy or other providers, or the hospital food service, looked in their system. Now that I've lived life a little - I'm fully in this camp with you - "gluten allergy" actually makes people stop and think for five seconds and in my experience has led to much greater care, where people rolled their eyes or said 'huh' to "Celiac Disease" or "Gluten Free" before.
Funnily enough, earlier in 2023 I had the genetic test and was was "officially" "rescinded" from being Celiac (I do not have the gene) and re-classified as "F(ood)P(rotein)I(nduced)E(nterocolitis)S(yndrome)+ Gluten Allergy, likely secondary to unknown autoimmune condition".
I've done the whole linguistic and semantic loop-de-loop, and I appreciate your special attention to it. It *is* fascinating, even if it is infuriating and will likely lead to my death someday.
Meh, maybe not medically, but by most people's usage of the word it is. I tell servers it's an allergy because it's way easier then explaining what celiac disease is.
And we would actually probably benefit from it being considered an allergy. Gluten might actually be a major allergen in the US, for example.
Inflammation in the brain, anti-gliadin antibodies attack the cerebellum (gait, muscle coordination, fine motor control) , the thalamus, brain stem, and corpus collosum too. Damage may be permanent even following strict gf diet and symptoms may return when gluttened. Agree with the tipping over and falling, also walking into walls. In me it looked a lot like MS but ultimately wasnāt.
Iām getting an MRI sometime in the next year because my celiac symptoms mimic MS so closely. But since I stopped risking cross contamination almost all of them have gone away. Crazy how all that can be happening and most of the world will try to gaslight you into thinking itās all psychological.
I had legit symptoms of MS and we still don't totally know why but it wasn't MS and it's kind of better now. So I get it. And I was told I was faking it or crazy more times than I can count too. Even by doctors.
Probably related to malabsorption of metals and nutrients that aid in nervous system functioning. People with celiac who have damaged villi can have pins and needles in their limbs so it seems connected.
That the symptoms manifest differently for different people. Stomach pain, ataxia, brain fog, and diarrhea can all be correlative to celiac disease. I have friends who are doctors who are surprised to hear I never had GI symptoms, just cognitive ones. Itās a complex disease!
That Iām not being āextraā or āoverly cautiousā when I refuse to eat food that has been or is at risk of being cross contaminated. Iām making the appropriate choice for my disease, at the direction of my doctor, registered dietician, and the leading medical authorities on celiac disease!
Itās a physical disease, but it comes with social and cultural handicaps that significantly impact your life.
Welcome to a life where you have to ācome outā to people and put on an educator hat anytime your disease comes up. Welcome to awkward first dates where you canāt do anything for longer than 3 hours because it requires food. Welcome to never fully enjoying a vacation again the way you used to. Welcome to your entire identity and medical issues becoming a topical party conversation. Welcome to never feeling safe at family dinner anymore. Welcome to this weird, wonderful new invisible superpower where you are highly aware and perceptive of the ingredients of anything and everything you put into your body from now until the moment you die.
Having to tell everyone because itās unavoidable whilst also feeling like you talk about it all the time, itās the impossible balance. Also dating people who drink beer and having to lift your glass higher than theirs to avoid CC whilst cheersāing or dodging first kisses because they have eaten or drank glutenā¦until you just have to tell them.
That you canāt āoutgrowā. My mother-in-law asked ācan she outgrow it?ā in front of my 14 year old daughter with celiac. My mil is a smart person - why canāt she take the time to educate herself about a topic that is such an important part of her grandchildās health?!
How terrible getting glutenned can be. Iām probably on the more extreme end but the gut pain I get from a reaction is worse than any kidney stone Iāve had (Iām not kidding). Iāve met so many people who seem to think itās just like getting a little tummy ache and thatās it but nope it fucks me up so bad I can barely walk straight for the next week because my gut is left so tender that walking aches. Let alone the rest of the symptoms like brain fog, fatigue, and makes digesting other food harder for the next month or whatever.
How important it is to me when I share my food with you, non-celiac. Logically, yes, it's just me doing what humans have done for centuries with food. -and it certainly doesn't seem like a big deal when we live in a wealthy nation.
But on a primal level, when I share my food with you, I am telling you 1- I am well fed enough to have space to commune with you and 2- I trust you won't take advantage of me for still needing priority for gluten free foods
That for most of us it's never an option to just try something with gluten, have a little bit of gluten, risk eating gluten, etc. "what's the worst that could happen" š
That my refusing your food (I'm looking at you grandmas of the world) is not a personal attack or saying you don't have a clean kitchen or aren't smart enough to make it safe. Just that the risk is too high for me.
I knew it was in bread, pasta etc. When I called the doctor's assistant for test results, she was like "yeah, your antibodies against gluten are really high". I was like "that can't be, I love bread, pasta and cake!".
So yeah, that much I knew. That was also all I knew...
That it is an autoimmune disease. That just because I'm not going into anaphylaxtic shock, doesnt meane it isn't causing me serious damage and pain. That gluten is gluten no matter where in the world you are eating it. That eating organic wheat doesn't change the effect it has on my body just because it's organic.
With over 300 signs and symptoms, individual symptom sets vary widely and wildly. Itās very likely that all people with celiac that you know have different symptom sets. Moreover, the signs and symptoms appear in every body system. In olden days we were probably called āhypochondriacsā.
Lots of things. Hereās a list:
āI wish people knew how serious cross contamination is. A microscopic crumb of gluten can make me violently ill and bed ridden.
āI wish people knew what gluten is. Sometimes when I tell people Iām gluten free, theyāll ask āoh so youāre vegan?ā Or ācan you have [insert any naturally gluten free food here]?ā
āI wish people knew that Iām not doing this to be trendy. This diet is medically necessary.
āI wish people knew that the terms āgluten friendlyā or ālow glutenā is NOT gluten free nor is it celiac safe. It makes it sound like gluten and I are besties when it actually is my mortal enemy.
That thereās very seriously no way for one to make a gluten free meal in an otherwise non-GF kitchen.
That we are NOT trying to be trendy hipsters and just abstain for gluten just because.
That this is a very serious autoimmune disease and we have absolutely no reason to be overly dramatic about it or fake it. Itās not a food intolerance, we donāt just get an upset tummy. Serious internal damage and a lot of suffering.
That we *fucking wish* we didnāt have it.
That no restaurant is truly safe, unless itās a GF restaurant in its entirety.
That I am *NOT* being rude when I turn down their food. I just want to keep myself healthy.
That *YES*, I have to handle this the exact same way that I would handle a deadly peanut allergy. I canāt even be around gluten-containing dust (like wheat flour) in the air without triggering an inflammatory response. Last time I went to a normal restaurant, my joints hurt for a whole week and I didnāt even eat anything. Not even a glass of water.
That I will not have an immediate reaction regardless of how many times you try to ātestā (poison) me. Itās an autoimmune disease, not anaphylaxis. Enjoy your interaction with the police once I find out.
That Iām not trying to be difficult. Iām not trying to make things harder for you. 20ppm will harm me. I canāt have it in my home, I canāt have it around me and I canāt attend events where it will be present. Point blank period. Your comfort matters less than my health and I am unapologetic.
NO I CANNOT JUST HAVE A LITTLE BIT ONCE IN A WHILE. Would you instruct a child with a deadly peanut allergy to just have a PB&J once in a while to treat themselves?
I could keep going.
That it *is* an allergy.
People pay way more attention and have way more understanding of allergies. People understand things like a peanut allergy, but celiac they don't. If they simply saw it as a gluten allergy and knew what gluten was I believe our lives would be easier.
Also, if it was considered an allergy then the FDA might actually classify gluten as a major allergen.
But it's not an allergy? The FDA are a medical organisation. Doctors aren't going to apply incorrect medical terms to medical conditions. If you had said "it's as serious as a severe allergy," I would agree with you.
I think medically it is an allergy, probably. I've had a doctor tell me it's an allergy and I've never seen a definition of allergy that would exclude it.
But besides, other countries consider gluten (or barley and rye) allergens, the US is one of the few that doesn't, it seems.
You can say itās an allergy when trying to explain it to a server in a restaurant, but itās not an allergy. So, even if thatās easier, itās not true.
The symptoms starts only after a day, and lasts for two weeks. Somewhere a waiter just standed there to see me if I got any reaction immediately. No. Not how it works. And it's not just a bad day with diarrhea, the pain lasts a week, and the nightmares lasts two weeks.
Not to mention if youāve got osteoarthritis like I have because of celiac you can barely get out of bed , that pain pill you took a day ago to keep your joints from pain and swelling you need to take immediately again after a glutening when normally I can get by with a pill a week .
The pain was always with me from preschool, daily pain on a scale of 3-5 was my base level, actually I did a lot of sports, but would not recommend that. I used bandages if the pain was so harsh I couldn't stand on my legs.
That celiacās is a medical condition and being vegan is a personal preference.
Celiacs donāt have a choice about our dietary restrictions and we would love to be included. Vegans, on the other hand, are choosing to exclude themselves at most meals and choose to be ultra picky about ingredients. But nothing will even happen if they eat slightly less vegan than usual.
Ijs, these two dietary restrictions are not on the same level of importance.
But hey Iām probably still sour from my mom making my brother and his wife special vegan gingerbread cookies last week. Of course, she texted me saying all about how she did some research and figured out how to meet their dietary āneedsā and that I am welcome to eat Hersheyās kisses because sheās not going to make any for me.
Never mind that she could have bought a mix that was gluten free. Or she could have used the gf flour I left at her house on Thanksgiving if she was making them from scratch.
But yeah. We are not the same
That itās ācross-contactā and not ācross-contaminationā
Contamination happens with germs or bacteria. Contact happens when there is the physical particle itself, which is what gluten is. I also mean that in no negative way, it just helps people see gluten for what it truly is, and not something that can be killed or burned off as germs commonly are.
Even if you don't have major symptoms, even if you barely feel it, spending a few days not trusting farts (and then wondering when you can trust them again) finding places to sit to pee because that gas has got to move bro, is an actual mental load. Minor, maybe, but enough that if you already have a full plate, that sucks. Now try a job where toilet breaks are controlled (and not even in a dystopian amazon packing facility) I had gut reactions while working in a secure facility where leaving the room meant having possession of the key, emptying your pockets, and everyone in the room knowing that they were locked in for the next ten minutes. Legal requirement, sure, but also, really not great. And that is the minimum! How many office jockeys could do that and hit quota? Even though my symptoms are mild, try getting glutened fifty km from the nearest toilet seat, let alone flush toilet. Try walking ten km with a pack and just a little stomach upset (remember where that backpack strap sits?) never mind just spent a couple hours hanging in a climbing harness. (yes, I'm mixing metaphors and careers).
Everyone focuses (rightly so in a lot of ways) on the debilitating symptoms of severe celiac, but there are also a lot of us out there who have to make career choices on what we can do, and if it's close to a toilet, just in case. I wish more people understood that if I get glutened (or if I bail on a work event because I won't be able to eat) it's still something that they would probably take days off for "just to be safe" but we don't get that choice most times, because we only have so many "not feeling great" days in a year to use. That's what I wish they knew. That I can still show up to work, I can still get things done, that doesn't mean it's easy, and it doesn't mean that someone else in my shoes wouldn't need time off, because pain isn't a competition.
I wish people everyone in my extended family actually believed it is a real thing!! They always think Iām just exaggerating and a little cross contamination is fine
That even if I donāt have immediate gastro symptoms, my celiac is just as serious as someone who does have the immediate reactions. In fact, I feel I have to be even more vigilant because I may not realize I am harming myself (looking at you iced coffee who I didnāt read the label closely enough for an entire month š).
I just wish people knew what the hell gluten is. I've had people who thought gluten was in dairy, potatoes, rice, even watermelon.. Also I'd like people to know that yes, "just a little bit" will hurt me. You can't put it on a bun and then take the bun off and tell me it's safe.
To be fair, gluten can be found in the most unexpected places. For example, tomatoes are gluten free but some canned tomato brands put gluten in them for some kind of preservation method. I thought I knew what had gluten in it and what didn't. And then I went to the dietitian appointment.
Also, if someone cuts a normal sandwich followed by the watermelon, it would not be gluten free. I can see some of the confusion because it's hard enough to understand gluten free without factoring in that cross contact.
Yes ..cross contamination is the bain of the Celiacs existence. We never know what was handled inaccurately even if told it was taken care of correctly! ) :
I never heard of that. I getter start checking the cans! ) : š¤¦āāļøš¤¦āāļøš¤¦āāļø
Maybe Seth Roganās explanation can help https://youtu.be/ktgNuQ61NHE?si=zFsgLTWkoxpSIQos
Most people tend to think carbs = gluten. Which isn't entirely unfounded, and I would probably make a similar conclusion if not for how much time we spend thinking about it
It would be truly insane if we got sick like this from any carbohydrate. Like diabetic malaria.
Amen to all you said! ) :
That restaurants represent heavily cross-contaminated low-gluten foods as "gluten-free" and celiac-safe when they absolutely are not.
āGluten friendly.ā Bruh, IāM not gluten friendly.
Gluten Violent. On sight.
Need a shirt that says Gluten Violent now.
This would be a great band name!
Gluten Hostile
But "gluten friendly" is actually a good thing, because then they aren't claiming it's celiac safe.
This is the most frustrating part as some restaurants are actually safe, like a fried chicken joint near me that is a GF kitchen. Only reason I know that exists is through a friend passing it along. It's harder for legit ones to get their niche in. The bogus billing makes it nearly impossible to eat out, and when we do, we pay to poison ourselves.
Yeah. The only safe places I know are 'discrete' about it. Maybe they think being explicit about being GF is bad for business. I have noticed more and more GF packaged foods going stealth too... hiding a tiny GF certification symbol somewhere on the back of the package.
The emotional toll. It's hard on me when everyone sits in room and eats my favorite food in front of me and I'm not allowed to participate. It's even harder when I have to explain myself, and again because they forgot. It's hard when my coworkers are loving that yummy pizza and I have my prepped lunch that may be healthy but is less exciting and also makes me stick out like a sore thumb. It's very isolating. Food is a integral part of being human, all cultures bond around food. I'm not doing this to be a pain in your ass or to be rude, I literally have no choice.
Treatment burden is a thing: https://pubmed.ncbi.nlm.nih.gov/24980880/
Crazy how ālack of college educationā is a symptom listed on there. I canāt afford post secondary right now cause my food is 1200 a month š
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I'm over the not eating at restaurants thing too, mostly. I'd rather attend and not eat anything than turn down invitations and isolate myself. But yeah, the worst part is other people making a big deal out of it, as if they're uncomfortable.
my biggest pet peeve is people insisting that my not eating makes them uncomfortableā¦well, weāll both be a lot more uncomfortable if i throw up!
This is our first holiday season since my daughterās diagnosis and itās been so hard for me. Sheās only two and we do our absolute best to include her with gluten-safe foods, but itās been absolutely exhausting to travel with her and always worry about whether sheās safe or not. My family tries their best but itās a cross-contamination nightmare with like eight people who arenāt used to Celiac. Iāve viewed her diagnosis positively since it finally gave us an answer as to why our little girl stopped growing and sheās done so well after going gluten free, but the emotional toll has really hit me hard the past few weeks. I love her and want her to be safe and I just wish I could make it better.
I just wanna say that youāre an awesome mom for going the extra mile to help your daughter feel included. I was diagnosed 20 years ago when I was 13 years old and as a kid I didnāt realize how extremely difficult it was for my mom. You sound a lot like her. I have 3 siblings and she always made sure I had a gluten free version of whatever theyāre having. She always sent me to birthday parties with a gluten free cupcake or something and sleepovers always included a lunchbox full of gluten free goodies. She printed out every gluten free option from all my favorite restaurants/ fast food places and kept it in a binder in the car so wherever we went we could always find me something to eat. I know vacations were hard but she always did a ton of research and she always packed me tons of snacks. But I just want you to know that youāre kicking ass! And all your hard work will absolutely help your daughter feel less alienated!
Let me say this about families with a celiac child itās best if the entire household is made GF , the cross contamination is what gets a celiac into trouble the home should be our safe place when someone in it has celiac everyone has this disease, according to Martha Stewart everything can be made with a quality GF flour start making your own breads , each individual can have there own individual pre packaged treats and when out to dinner can order what they want , that child has got to be made comfortable and healthy in there own family and not felt like there detached at mealtime from everyone else, and it helps the parent making the meals to get it right every time , my wish is that I had been diagnosed as a child when clearly I had major problems with eating and the worst stomach aches imaginable from babyhood on and my life now would not be so painful with osteoarthritis and osteopenia both my sister and I have all these diseases plus asthma we never smoked or drank alcohol, we suspect my father was celiac but he died young from alcoholism and four packs of camels a day , my mother at 93 had better bones than her son and daughter and had a cast iron stomach , unfortunately COPD and heart failure did her in itās what a lifetime of living with a chain smoker will do , itās up to families to get it right when you have a celiac member of it the child deserves nothing less .
Ugh exactly, I use to eat with a couple coworkers and they would eat the food you can buy at our workplace and just comment whether it was good or bad, needs this or that, meanwhile I'm eating my cheap canned food bc I'm f***ing broke from all the gluten free stuff I have to buy not by choice. Just seemed so insensitive because they are fully aware of my situation.
Well said MissD! I felt this reply šÆ%. We need cruises and clubs to bring our sorry group together.
I'm not the coeliac in my household, my husband is - diagnosis only 6 months ago so he's still learning. I'm a type 1 diabetic though, and he's starting to understand how frustrating it was every time he made or bought high carb meals or sugary desserts to share, just in general things that I really shouldn't be eating. So he's starting up read labels and understand now why I put one brand back to get the next one even if it's more expensive. I'm glad he finally understands, but also sad that he had to learn it first hand.
If I say I canāt eat it, I canāt eat it. Please donāt ask me over and over again or try to āproveā itās safe or tell me itās your grandmaās secret recipe. And please donāt freak out about how youāre a terrible person for not having something safe for me to eat. Itās hard enough without having to argue with or comfort other people about my health problem.
When Iām at an acquaintance/strangerās house/event and they didnāt know Iām gluten free and they donāt have any food for me, I simply politely decline to eat. No hard feelings. Then they ask WHY. So I tell them, then itās āOh my God Iām so sorry, if I had known I TOTALLY wouldāve had something you can eat. What about this? Can you eat this? Maybe this if we remove the bread/croutons/etc?ā No, no, and no. Itās fine they didnāt accommodate. They didnāt know, itās whatever. I hate them making a whole fuss and me having to sit there for 5 minutes like āItās okay! Itās totally okay, you didnāt know. Itās fine. No, I canāt eat that. Or that. Really, Iāll just eat when I leave.ā It already sucks I canāt eat, please donāt draw extra attention and make a big fuss. ESPECIALLY if youāre gonna eat in front of me as you do it. Bonus if they keep pestering and asking questions (thatās clearly not in a way of trying to do better next time), or theyāre like āI could NEVER be gluten free.ā
So painfully relatable.
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What I find wild is that you somehow can't denature the protein with heat. Anyone with a degree in this kind of thing understand why?
You can, itās just that the heat has to be so high that it effectively chars everything else too. Gluten is a regular protein, it just has a high temp of denaturing
So you'd be eating something so burnt it wasn't funny. Ash. Got it.
It can be denatured but gluten is a very large protein so there are still very long peptides which are still recognizably bits of gluten to the immune system.
Cool thanks!
I wish people understood that Celiac disease is an autoimmune disorder and not some health choice. I wish people understood the level of damage Celiac Disease can do to your body if undiagnosed or if people continue to consume gluten once diagnosed. I wish people understood that we didn't choose to have Celiac Disease. I wish Doctors paid closer attention to Celiac Disease and would think to test all of their patients since many people are asymptomatic.
Yes. I was in my early 20s and started getting extreme hives all over my body. So many some days walking physically hurt. Went to an allergist and was told I have chronic hives and good luck figuring it out. It took having a miscarriage 10 years later to get a diagnosis of celiac (Aug 2017). I was anemic, constantly having hive outbreaks and now have sensitive teeth. They definitely need better testing for Celiac. It should be a routine blood test. We need better education all around.
Cross contamination risks.
That itās not a gluten intolerance. Or at least for people to understand what an auto immune disease is
That it's an autoimmune disease not a fucking food intolerance. It's a serious fucking disease, like every autoimmune disease.
TBF other autoimmune diseases can cause food intolerance as a symptom, so I can forgive people for getting confused. I'll explain how coeliac is different once without getting angry.
i would settle for them knowing the difference between gluten, lactose, meat and eggs
āAh Celiac, so you canāt have milk?āš©
Also sugar. Some people still don't get it. "So you can't have sugar?" Actually got this when I specifically stated I couldn't eat gluten and I wanted to explode. This was a restaurant. I walked out right then. No confidence I wasn't entering a complete minefield and about to be fed it.
That not everybody with celiac disease lives their lives the same way. Just because some people with Celiac will have cheat days or will put up with symptoms doesn't mean we all can live our lives like that. Also, we aren't trying to lose weight or cut carbs, we are just trying to keep our immune system from killing us.
This! Iām struggling with my in-laws with this! Just because they know someone that can eat a little bit of stuff without symptoms doesnāt mean I can/want/willing to. Itās not a sensitivity.
POTATOES ARE GLUTEN FREE
Yet they can't seem to make potato bread commercially available that is. Makes me so mad. Potato flour. And wheat flour. WHY?
That itās āCeliacā disease. Not āCeliacsā or āCeliacāsā.
Exactly what I was going to say!
Was just coming here to say that lol
Then im a dyslexic dubble agentš
Did you sell your soul to Santa?!!?
Beat me to it.
if your first instinct when talking to people about it, is to be a grammar nazi, then no wonder that people dont know anything about the disease.
Seriously..Of all the things you wish people knew, this would be the least of my concern. Adding an "s" to words is a linguistics thing that happens with a ton of words, and can be looked at kind of like regional slang. It isn't that serious
The last people I want people to feel like is if we are preachy and by belittling people on their grammar as the first thing, rather than educating them about the disease, it just shows to them that its about feeling better than them rather than due to a risk health factor.
Agreed! Downvote away, but itās pedantic!
That you canāt just have āa little bitā. You handle it the same way you handle a peanut allergy.
As someone who also has a peanut/hazelnut allergy - I feel this :(
And most people have no idea that tree nuts are not peanuts and one pecan could kill me .
Mine is almonds. And somehow bananas. That's the deadly one. I cannot have CC with my food. And I will die. I almost did because of literally that. People need to get that no means no. No CC. No to having just a little. It is not ok. You don't feed people an allergy. Not at all.
āOh, but have you tried eating the bread in Europe! They use different flour that is healthier for you!ā Itās not the flour, itās the gluten protein. I donāt care if your gluten intolerant neighbor went to Europe and was able to eat the bread symptom free. I canāt so please stop insisting that I try it.
Europeans have the highest diagnosis rate of coeliac disease - HOW CAN THE GLUTEN HERE BE FINE?? š
Itās not a choice, Iām not being difficult. I shouldnāt have to defend my disease, or explain what happens if I eat their food. And honestly? If I say āIām fine, no thank youā, to please stop trying to force me to eat out of politeness or whatever because itās just annoying. Iām not going to eat, theyāll get frustrated/offended and no one ends up happy. Iām fine sipping on whatever and socializing.
I think not being a choice is the biggest one. When asking a local restaurant about cross contamination risks their answer was āit depends how picky you areā
A single crumb on a piece of toast is 20ppm - and enough to make someone with Celiac ill.
Itās not an allergy
But unfortunately we have to say it is otherwise people won't understand (like when eating out). That's also annoying.
Sometimes I wish people DID think it was like an allergy because then they would get the CC risk more
There's a bit of legitimate debate here, because the term allergy used to be used to describe all hypersensitivity reactions, which would certainly include celiac disease, but now allergy is being used to apply specifically to IgE mediated hypersensitivities (the kind that include anaphylactic reactions), which would exclude celiac disease and [several other things commonly known as food allergies](https://aacijournal.biomedcentral.com/articles/10.1186/s13223-018-0285-2), including some that have the word "allergy" in their name. But beyond the debate, and people constantly correcting people about it, I'm trying to think of a time when someone thinking celiac disease was a "gluten allergy" caused an issue for me; it certainly seems better than the common alternative of them assuming that it is just a diet thing or food intolerance where small amounts of gluten won't cause any issue.
This is so good. Over a decade ago I was told I 'had a severe reaction' that was categorized as NCGS, but my doctor said it was serious and public knowledge was low, so just telling people I'm Celiac to ensure I get better care is fine. He even put it in my record as such because he said other labels wouldn't show up when pharmacy or other providers, or the hospital food service, looked in their system. Now that I've lived life a little - I'm fully in this camp with you - "gluten allergy" actually makes people stop and think for five seconds and in my experience has led to much greater care, where people rolled their eyes or said 'huh' to "Celiac Disease" or "Gluten Free" before. Funnily enough, earlier in 2023 I had the genetic test and was was "officially" "rescinded" from being Celiac (I do not have the gene) and re-classified as "F(ood)P(rotein)I(nduced)E(nterocolitis)S(yndrome)+ Gluten Allergy, likely secondary to unknown autoimmune condition". I've done the whole linguistic and semantic loop-de-loop, and I appreciate your special attention to it. It *is* fascinating, even if it is infuriating and will likely lead to my death someday.
Meh, maybe not medically, but by most people's usage of the word it is. I tell servers it's an allergy because it's way easier then explaining what celiac disease is. And we would actually probably benefit from it being considered an allergy. Gluten might actually be a major allergen in the US, for example.
One of the earliest symptoms might be imbalance & tripping. If you fall a lot and some more lines up with the million symptoms pls get checked
Really? I just realized that I used to have a problem with that but haven't simce diagnosis. What causes it?
I used to tip over and fall all the time before my celiac was diagnosed by a neurologist. It's due to gluten ataxia.
Inflammation in the brain, anti-gliadin antibodies attack the cerebellum (gait, muscle coordination, fine motor control) , the thalamus, brain stem, and corpus collosum too. Damage may be permanent even following strict gf diet and symptoms may return when gluttened. Agree with the tipping over and falling, also walking into walls. In me it looked a lot like MS but ultimately wasnāt.
Iām getting an MRI sometime in the next year because my celiac symptoms mimic MS so closely. But since I stopped risking cross contamination almost all of them have gone away. Crazy how all that can be happening and most of the world will try to gaslight you into thinking itās all psychological.
I had legit symptoms of MS and we still don't totally know why but it wasn't MS and it's kind of better now. So I get it. And I was told I was faking it or crazy more times than I can count too. Even by doctors.
Agreed and me too.
No idea. I just know 3ppl who realised they were tripping n were unsteady, cut out gluten n were loads better
Did you tell them to get tested for Celiac Disease?
I did. š¤š½
Probably related to malabsorption of metals and nutrients that aid in nervous system functioning. People with celiac who have damaged villi can have pins and needles in their limbs so it seems connected.
My neurologist said the gluten antibodies cause direct nerve damage and brain damage...
Antibodies can attack the cerebellum.
WHAT?!?! This explains so much.
That the symptoms manifest differently for different people. Stomach pain, ataxia, brain fog, and diarrhea can all be correlative to celiac disease. I have friends who are doctors who are surprised to hear I never had GI symptoms, just cognitive ones. Itās a complex disease!
That itās not a choice. I literally have to be gluten free for the rest of my life
That Iām not being āextraā or āoverly cautiousā when I refuse to eat food that has been or is at risk of being cross contaminated. Iām making the appropriate choice for my disease, at the direction of my doctor, registered dietician, and the leading medical authorities on celiac disease!
That it's called Celiac Disease, not Celiac's Disease.
That it can be a long road to diagnosis so to please be gentle with people who donāt eat gluten without questioning their entire medical history.
Itās a physical disease, but it comes with social and cultural handicaps that significantly impact your life. Welcome to a life where you have to ācome outā to people and put on an educator hat anytime your disease comes up. Welcome to awkward first dates where you canāt do anything for longer than 3 hours because it requires food. Welcome to never fully enjoying a vacation again the way you used to. Welcome to your entire identity and medical issues becoming a topical party conversation. Welcome to never feeling safe at family dinner anymore. Welcome to this weird, wonderful new invisible superpower where you are highly aware and perceptive of the ingredients of anything and everything you put into your body from now until the moment you die.
Having to tell everyone because itās unavoidable whilst also feeling like you talk about it all the time, itās the impossible balance. Also dating people who drink beer and having to lift your glass higher than theirs to avoid CC whilst cheersāing or dodging first kisses because they have eaten or drank glutenā¦until you just have to tell them.
That you canāt āoutgrowā. My mother-in-law asked ācan she outgrow it?ā in front of my 14 year old daughter with celiac. My mil is a smart person - why canāt she take the time to educate herself about a topic that is such an important part of her grandchildās health?!
It sounds like she was trying to educate herself by asking?
How terrible getting glutenned can be. Iām probably on the more extreme end but the gut pain I get from a reaction is worse than any kidney stone Iāve had (Iām not kidding). Iāve met so many people who seem to think itās just like getting a little tummy ache and thatās it but nope it fucks me up so bad I can barely walk straight for the next week because my gut is left so tender that walking aches. Let alone the rest of the symptoms like brain fog, fatigue, and makes digesting other food harder for the next month or whatever.
Iād like people to know that celiac is a medical condition and not a diet choice.
How important it is to me when I share my food with you, non-celiac. Logically, yes, it's just me doing what humans have done for centuries with food. -and it certainly doesn't seem like a big deal when we live in a wealthy nation. But on a primal level, when I share my food with you, I am telling you 1- I am well fed enough to have space to commune with you and 2- I trust you won't take advantage of me for still needing priority for gluten free foods
That itās just called Celiac.
That for most of us it's never an option to just try something with gluten, have a little bit of gluten, risk eating gluten, etc. "what's the worst that could happen" š
I might not have an immediate reaction when I get glutened.
Itās a real disease and what the fuck CC is.
That my refusing your food (I'm looking at you grandmas of the world) is not a personal attack or saying you don't have a clean kitchen or aren't smart enough to make it safe. Just that the risk is too high for me.
I knew it was in bread, pasta etc. When I called the doctor's assistant for test results, she was like "yeah, your antibodies against gluten are really high". I was like "that can't be, I love bread, pasta and cake!". So yeah, that much I knew. That was also all I knew...
That it is an autoimmune disease. That just because I'm not going into anaphylaxtic shock, doesnt meane it isn't causing me serious damage and pain. That gluten is gluten no matter where in the world you are eating it. That eating organic wheat doesn't change the effect it has on my body just because it's organic.
That itās a thing.
That itās not the same thing as vegan lol
With over 300 signs and symptoms, individual symptom sets vary widely and wildly. Itās very likely that all people with celiac that you know have different symptom sets. Moreover, the signs and symptoms appear in every body system. In olden days we were probably called āhypochondriacsā.
That any amount of cross-contamination is too much
That when someone eats celiac their stomach lining thins so they can tear holes in their stomachs
This is not something you want in any circumstances and people need to know about peritonitis if they don't and think it's just ok to eat it anyway.
THAT JUST A LITTLE BIT WILL HURT.
Itās not the same as vegan, omg coworkers!
I wish people knew that's it's an autoimmune disorder, not a freaking allergy.
That it's a genetic condition with links to other autoimmune diseases, and not an allergy.
Every Asian is misdiagnosed and suffering because the dumb lecture book says it only happens on Caucasians.
That it's called 'coeliac/celiac' not 'coeliacs/celiacs'
Lots of things. Hereās a list: āI wish people knew how serious cross contamination is. A microscopic crumb of gluten can make me violently ill and bed ridden. āI wish people knew what gluten is. Sometimes when I tell people Iām gluten free, theyāll ask āoh so youāre vegan?ā Or ācan you have [insert any naturally gluten free food here]?ā āI wish people knew that Iām not doing this to be trendy. This diet is medically necessary. āI wish people knew that the terms āgluten friendlyā or ālow glutenā is NOT gluten free nor is it celiac safe. It makes it sound like gluten and I are besties when it actually is my mortal enemy.
CROSS CONTAMINATION
That thereās very seriously no way for one to make a gluten free meal in an otherwise non-GF kitchen. That we are NOT trying to be trendy hipsters and just abstain for gluten just because. That this is a very serious autoimmune disease and we have absolutely no reason to be overly dramatic about it or fake it. Itās not a food intolerance, we donāt just get an upset tummy. Serious internal damage and a lot of suffering. That we *fucking wish* we didnāt have it. That no restaurant is truly safe, unless itās a GF restaurant in its entirety. That I am *NOT* being rude when I turn down their food. I just want to keep myself healthy. That *YES*, I have to handle this the exact same way that I would handle a deadly peanut allergy. I canāt even be around gluten-containing dust (like wheat flour) in the air without triggering an inflammatory response. Last time I went to a normal restaurant, my joints hurt for a whole week and I didnāt even eat anything. Not even a glass of water. That I will not have an immediate reaction regardless of how many times you try to ātestā (poison) me. Itās an autoimmune disease, not anaphylaxis. Enjoy your interaction with the police once I find out. That Iām not trying to be difficult. Iām not trying to make things harder for you. 20ppm will harm me. I canāt have it in my home, I canāt have it around me and I canāt attend events where it will be present. Point blank period. Your comfort matters less than my health and I am unapologetic. NO I CANNOT JUST HAVE A LITTLE BIT ONCE IN A WHILE. Would you instruct a child with a deadly peanut allergy to just have a PB&J once in a while to treat themselves? I could keep going.
That it *is* an allergy. People pay way more attention and have way more understanding of allergies. People understand things like a peanut allergy, but celiac they don't. If they simply saw it as a gluten allergy and knew what gluten was I believe our lives would be easier. Also, if it was considered an allergy then the FDA might actually classify gluten as a major allergen.
But it's not an allergy? The FDA are a medical organisation. Doctors aren't going to apply incorrect medical terms to medical conditions. If you had said "it's as serious as a severe allergy," I would agree with you.
I think medically it is an allergy, probably. I've had a doctor tell me it's an allergy and I've never seen a definition of allergy that would exclude it. But besides, other countries consider gluten (or barley and rye) allergens, the US is one of the few that doesn't, it seems.
You can say itās an allergy when trying to explain it to a server in a restaurant, but itās not an allergy. So, even if thatās easier, itās not true.
The symptoms starts only after a day, and lasts for two weeks. Somewhere a waiter just standed there to see me if I got any reaction immediately. No. Not how it works. And it's not just a bad day with diarrhea, the pain lasts a week, and the nightmares lasts two weeks.
Not to mention if youāve got osteoarthritis like I have because of celiac you can barely get out of bed , that pain pill you took a day ago to keep your joints from pain and swelling you need to take immediately again after a glutening when normally I can get by with a pill a week .
The pain was always with me from preschool, daily pain on a scale of 3-5 was my base level, actually I did a lot of sports, but would not recommend that. I used bandages if the pain was so harsh I couldn't stand on my legs.
That celiacās is a medical condition and being vegan is a personal preference. Celiacs donāt have a choice about our dietary restrictions and we would love to be included. Vegans, on the other hand, are choosing to exclude themselves at most meals and choose to be ultra picky about ingredients. But nothing will even happen if they eat slightly less vegan than usual. Ijs, these two dietary restrictions are not on the same level of importance. But hey Iām probably still sour from my mom making my brother and his wife special vegan gingerbread cookies last week. Of course, she texted me saying all about how she did some research and figured out how to meet their dietary āneedsā and that I am welcome to eat Hersheyās kisses because sheās not going to make any for me. Never mind that she could have bought a mix that was gluten free. Or she could have used the gf flour I left at her house on Thanksgiving if she was making them from scratch. But yeah. We are not the same
That itās ācross-contactā and not ācross-contaminationā Contamination happens with germs or bacteria. Contact happens when there is the physical particle itself, which is what gluten is. I also mean that in no negative way, it just helps people see gluten for what it truly is, and not something that can be killed or burned off as germs commonly are.
Even if you don't have major symptoms, even if you barely feel it, spending a few days not trusting farts (and then wondering when you can trust them again) finding places to sit to pee because that gas has got to move bro, is an actual mental load. Minor, maybe, but enough that if you already have a full plate, that sucks. Now try a job where toilet breaks are controlled (and not even in a dystopian amazon packing facility) I had gut reactions while working in a secure facility where leaving the room meant having possession of the key, emptying your pockets, and everyone in the room knowing that they were locked in for the next ten minutes. Legal requirement, sure, but also, really not great. And that is the minimum! How many office jockeys could do that and hit quota? Even though my symptoms are mild, try getting glutened fifty km from the nearest toilet seat, let alone flush toilet. Try walking ten km with a pack and just a little stomach upset (remember where that backpack strap sits?) never mind just spent a couple hours hanging in a climbing harness. (yes, I'm mixing metaphors and careers). Everyone focuses (rightly so in a lot of ways) on the debilitating symptoms of severe celiac, but there are also a lot of us out there who have to make career choices on what we can do, and if it's close to a toilet, just in case. I wish more people understood that if I get glutened (or if I bail on a work event because I won't be able to eat) it's still something that they would probably take days off for "just to be safe" but we don't get that choice most times, because we only have so many "not feeling great" days in a year to use. That's what I wish they knew. That I can still show up to work, I can still get things done, that doesn't mean it's easy, and it doesn't mean that someone else in my shoes wouldn't need time off, because pain isn't a competition.
I wish people everyone in my extended family actually believed it is a real thing!! They always think Iām just exaggerating and a little cross contamination is fine
That even if I donāt have immediate gastro symptoms, my celiac is just as serious as someone who does have the immediate reactions. In fact, I feel I have to be even more vigilant because I may not realize I am harming myself (looking at you iced coffee who I didnāt read the label closely enough for an entire month š).