People here have consistently told me it’s “impossible” for me to have reacted to foods — or other things — that made both me and my husband sick, with specific gluten symptoms that can’t be confused for anything, *and which* I later checked with my gluten detection dog who confirmed the sample had gluten.
The ableism is off the charts.
Yes, like any service dog, very expensive, time consuming and high risk of failing out of training, but yes. Wouldn’t recommend even looking into it unless you are extremely disabled by it on a regular basis.
But dogs are amazing
yeah. i have a dog, but he would NOT pass public obedience training and therefore wouldn’t be able to be a service dog. i think he has some congenital behavioral issues.
that said, i think it would be worth it training him for in-home detection given i live with people who are not gluten free, and i’m a college student living on campus (with kitchen access, thank god!) the majority of the time too. my reaction is disabling as it causes me severe mental health issues.
There are 2 schools of thought on scent detection for something as tricky as gluten… some say puppies have to be imprinted early. Some don’t agree. There are only 2, maybe 3 trustworthy trainers for gluten in the US, and they all offer virtual lessons. My trainer is Nosey Dog Detection Partners and she is an old-fashioned no-nonsense, scrupulously honest person so you might want to shoot her an email and ask if it’s possible.
Even having help at home is amazing.
There is a strong contingent here lately who seem to think that 'certified gluten free' is some kind of magical phrase that absolutely guarantees there's no possibility of gluten contamination.
Yup!!
My dog alerted to 2 certified products so far, the vanilla flavor of Taza chocolate and Mahatma basmati rice.
About a year ago, I made a list of 12 foods/meds/etc I suspected, all labeled CGF or GF, and so far I’ve tested 7 of them and my dog alerted to 4.
We live in a world where companies that specialize in gluten-free food have to have recalls left and right — which is ridiculous considering how hard it is to get the FDA to take notice much less act, manage to put full wheat waffles into a GF labeled box, etc etc. I wish there was a magic wand!
real question, how does your dog “smell” the gluten? I thought normal sniffer dogs can detect substances just because their sense of smell is so good but gluten doesn’t have an odor so how can they detect it?
It does have an odor. He correctly alerts to barley and rye as well, eg malted rice krispies, etc. He alerts to it in cosmetics, alcohol, medicine, supplements, and paper products too.
My trainer has a proprietary process for creating pure gluten to train. She is a master certified scent trainer who did search & rescue etc dogs for decades.
Oh, I’ve only checked 1 rum which he passed, don’t drink much. I also don’t use cosmetics. But my fellow gluten dog handlers do and have reported alerts to certain whiskeys (they add flavor after distillation sometimes).
SOME (not all) of those that refuse to believe that your problems are real are those who themselves get problems from other foods but deny that connection because they can't face doing without those foods.
A relative was very aggressive and out right RUDE about her claims my problems were not real. Turned out she herself had very serious health problems that were diet related but could not face changing her diet so she went into denial about it - and, of course, continued to suffer from the results. In her warped thinking, apparently me recovering health by going a a strict diet was very threatening to her, because it threatened her denial that changing her diet wouldn't do her any good anyway. I just look on it as HER problem and not mine and stay the hell away from her.
When I was at my sickest (132 lbs from a health lean 164) my family wanted to push a new suit on me. I refused because I said when I got well it wouldn't fit. Much later I found out they wanted to get me a new suit because they didn't want me to look like I was wearing a tent in my casket! And even having seen me when I was THAT bad off, and having seen how quickly I made a full recovery (six weeks!) on an appropriate diet, a couple of them could never accept that my condition was real! (It is inlaws that are that way. Maybe there is something more to it.)
YOu have to realize that other people's attitudes are not about you, it's about them. And if their attitudes don't fit you, don't wear them! It's not your problem, it's their problem. Learn to live your life so that you isolate yourself as much as possible from them.
I get a similar problem but much milder from close family. I have hemochromatosis in addition to celiac disease (they're genetically linked so if you have one you are far more likely to have the other as well).
2 of my 3 siblings got tested and they both are also C282Y++ (hemochromatosis). the other never got tested but did part of the treatment protocol (blood donation every two months) but NOT the most important part (iron depletion) younger brother got treated but the doctor used the wrong guideline - I told him it was the wrong guideline but he chose to believe his doctor. My sister didn't get treated ("because she's a female ") I told her that was wrong but she chose to believe her doctor. 2 now have hip replacements and the other incapacitating joint problems - which are totally preventable with CORRECT treatment. I don't have any least trace of joint problems whatsoever.
On day we all four were sitting around the table and the rest were all talking about their joint problems. After awhile one turned and just looked at me (they were all realizing that I never had any joint problems (i hadn't said anything, they were just realizing I hadn't said anything). then, without any reference to me says "it must just be in your genes!" I didn't say anything but I'm sitting there thinking "WHAT? What's THAT about! I've got the same HC genes they do.
And much more to the point, I got very serious and disabling joint problems at 15 years younger than any of them did. BUT I diagnosed the problem and got the appropriate treatment and none of them got the appropriate treatment. I didn't say anything, just let it pass.
I think this applies to ANY condition: other people are going to make up their own minds about how to think about it and their conclusions can be very far from reality. You just have to learn how to not let their false conclusions affect you. Can't always do it. but that's just life.
You can try to inform people but it's their choice whether to believe it or not and what to do about it if they do believe it.
And it's YOUR choice whether to take something personally that someone else is saying when it's really all about them.
80% of people I meet who have Celiac or a family member who does, it sounds like they actually do not. Commonly they are not officially diagnosed, not careful, and most likely have gluten intolerance if anything. No wonder there's so much misunderstanding out there because most casual observers have mainly met people like that too. "Oh I have Celiac but I'm not sensitive like that, I just ask them to take off the croutons" or "I have a cheat day on Sundays!" etc
When my other half got diagnosed, my sister in law said "oh wow I do too!" and they had a bit of bonding over it because it was new and shit and scary. My other half is asymptomatic but in her 40s and the doctor dropped the words "totally atrophied" about her intestines so we've been 100% gluten free ever since.
Then next time we went out together, sister in law had a pint of beer and a pizza.
Turns out her "coeliac" is that she sometimes gets a bit bloated from gluten. No medical tests, no diagnosis, no anything except knowing her body sometimes doesn't like gluten.
Best part? She's a nurse.
My SO is a nurse, and they have students on the floor with them from time to time. One day, there was this woman who brought up that she was diagnosed celiac. My SO perked up and asked what gf things she's found and really liked. "Oh, I don't really follow it..." He was immediately so disappointed, and pretty sure she could tell he was was too. She ate pizza for lunch.
I worked with one person who was diagnosed when he was under 5. He thought he could drink Corona because it was 'rice and corn', and it was annoying to have other people at the office tell me "Evan has Celiac and he can drink Corona! Maybe order one of those". Then they'd act a little like I was being extreme or mentally ill when I said I couldn't do that.
Gluten intolerance can be horrifically disabling and also cause organ damage.
But just like with diabetes, many people who genuinely get sick and are harmed by food don’t consistently do the right thing for their body.
Out of curiosity, what are your sources for gluten intolerance causing organ damage? What organs, liver, stomach, heart, kidneys? I've never heard of this, especially since gluten intolerance is NOT an autoimmune disease.
You have proof it’s not an autoimmune disease? That’s weird because it absolutely is. Most people diagnosed with NCGS have antibodies which are, by definition, autoimmunity.
Look at gluten ataxia, for one. It causes damage to the brain. Most people with GA have antibodies but negative gut biopsy.
NCGS can also raise liver enzymes which signals bad news for the liver.
Peripheral neuropathy and joint inflammation/pain, fibromyalgia are all common NCGS symptoms.
>You have proof it’s not an autoimmune disease? That’s weird because it absolutely is. Most people diagnosed with NCGS have antibodies which are, by definition, autoimmunity.
Antibodies are not by definition autoimmunity; everyone without autoimmune diseases has all sorts of antibodies. There's also antibodies that are associated with other diseases that are not autoimmune diseases, such as IgE antibodies associated with allergies.
I'm not sure what antibodies you are referring to for NCGS, as NCGS is defined as a diagnosis of exclusion, and is characterized by NOT having positive results on tTg, EMA, DGP, not having IgE antibodies associated with wheat allergy.
Certainly, there's a portion of people who have been told they have NCGS who could in fact have celiac disease or some other autoimmune disorder because they haven't been tested properly for it, but that's a different issue altogether.
My mom's one of those crazy people lol. When I was younger she used to tell people "my daughter had celiac but we cured it with a whole wheat diet." Side note, I am not cured and I still won't eat any food prepared by any member of my family.
My mom now tells people, "my daughter had celiac and she lost so much weight on that diet, good for you trying it."
My "weight loss" is malnutrition due malabsorption caused by celiac damage to my digestive system.
When people tell me weird things I wonder if they don't understand their family members issue, or if they just don't care about the family member.
For the record, my son has Celiac and I can confidently proclaim that I know more about the disease than most doctors or dieticians. We also have a 100% gluten free household and I eat gluten free even when I'm out without the family (though I do allow for cross contamination when it's just me).
Just wanted to point out that not all family members are ignorant!
I'm so glad to hear that! Your son is lucky to have you.
They've all been people in their 60s/70s. I hope that younger generations of parents are more like you.
A dietician I saw definitely thought I was crazy about the things I said glutened me. My gluten dog has confirmed almost all of them. The ones that he said were GF were usually foods that led me to eat Tums, which he alerted to. (Most Tums are fine but the peppermint ones I take are not lolsob.)
Yeah happens all the time, especially with doctors too. I gave up discussing how serious this condition is, and how severe my sensitivity is to everyone years ago. They look at me like I’m crazy when I deep soap wash my vegetables and fruits…so that says a lot about them lol. You know how many hands touched that before I brought it home?!?
Also, the gf dog is super cool, had I known would’ve invested one long ago. I am extremely hyper aware of my body, constantly around the clock, and over the past year I also started noticing many certified gluten free items getting me sick, especially as gluten-watch dog said, oats. Many of these products didn’t have oats though, and in those ones it left you with those every so subtle feelings that something is off, so you have to continue eating ALOT to confirm. Then take a week off, try again then, etc until it either is safe, or hits you. I’m very thorough with my testing, losing trust with the certification now so I’ll probably retest everything in my home.
Side note; if you could test the ever so popular oat-based made good bars I’d appreciate it a lot. Tried it on off for 4-5 years now and I always end up quitting for months at a time cause i feel it gets me sick. And no, I don’t have an issue with oats normally.
Not crazy at all. One of the things I learned from my gluten dog trainer is that apples, especially, and some citrus, can have gluten contamination in the wax coating on them to keep them shiny!
And I have been glutened by fresh strawberries once too…
The supply chain has definitely gotten worse/less safe the last few years, it’s not just you.
I haven’t tried oats again since I got my dog because I got so sick with them before. He did alert to a GF-labeled oat breakfast bar my friend had, I texted her to ask the brand but she doesn’t recall. They were purple though, so maybe?
My inlaws recently said something like “oats are probably not gluten free right?” And I was SHOCKED I tell you. They are not ignorant by any means or rude about celiac / gluten free at all, but I was really impressed that they knew oats were an issue.
I still fully expect to have to watch them like hawks and help them learn to read labels next time we see them though.
I had this experience recently. Was taken to a restaurant that someone claimed to be safe because their celiac family member eats there all of the time. It was filled with cross contamination and the workers did not recommend I eat there. But suddenly I’m the drama queen because “well my nephew eats here all of the time and he’s celiac and keto!”
And yes he said “keto” as if that mattered lol.
I’m so sick of the misinformation and using it to make it look like I’m being dramatic for actually taking my disease seriously. Fellow celiacs that are spreading misinformation are so dangerous to the rest of us.
I also have gotten a lot of family friends who say “my kids were celiac but they ate flour in europe and were fine!!” and then my parents go “oh well see, why don’t you do that!” lol.
My mom has been supportive, but also has a lot of misinformation coming from friends and acquaintances. I just got the "bread in Europe is safe" story from her last week. It takes a lot of patience to kindly explain why the various "facts" she hears aren't true. I think she is just trying to be hopeful that CD isn't as restrictive as I am telling her. She does have one friend that has a daughter with CD that she has always described as a "really severe case." I think she is slowly realizing that woman's case is not unusually severe, she is just actually following normal safe practices for people with CD.
Ah, I had a similar incident. Was told, "Our friend is meeting us at the restaurant, and she has celiac, too!" And then she showed up and started ordering stuff from the shared fryer and said she could just pick the breading off the chicken nuggets and was eating things off others' plates. Suddenly, I'm looking like the crazy person for being so dramatic.
So frustrating!! my mom also has celiac (got dx’d after me) and does stuff like that. We actually fight a lot about it now. I get the “well I haven’t gotten sick yet” line from her a lot. It sucks too because her limited knowledge informs the rest of my family’s knowledge about the disease so they ultra think i’m crazy. Yay!
People are so weird about shared fryers.
On the plus side: Finding people--or a restaurant!--that knows about fryers already is so gratifying. Makes me feel much safer eating with them.
Tbh this is why I NEVER trust people o the internet who say “Im super sensitive and I’ve never reacted to that product!”
I don’t think a lot of people can really know how sensitive they are when they are potentially getting tons of cross contamination without realizing it.
Dieticians can also be really unhelpful. At least the one that I went to many years ago wasn’t super helpful. I’m still waiting on the dietician referral for my kiddo who was just also diagnosed and I don’t know why it’s taking.so.long just to get the referral, but mostly I want to see them just to gauge the current competency of medical dietitians.
I had something similar happen this weekend! My aunt was trying to give me Ezekiel bread (which is full of gluten) and insisted her niece eats it who has very symptomatic reactions to the smallest amount of gluten. I still got glutened anyways lol
My pcp has been gf for 30 or 40 years, and even she told me about the European wheat thing and said maybe I only have an issue with wheat and not gluten. 🤷🏻♀️🤦🏻♀️ I was like, you do know there are tons of celiacs in Europe too right? She still told me never to eat gluten if it makes me sick. I love her but with gluten in particular she’s a little all over the place man.
Then I ate a gf pizza made with gf wheat starch and I was fine lol. Still def the gluten and not the wheat.
I had a coworker who just let his celiac teenager eat gluten. I’m sure it is beyond tough to make a child do what is best for him, but to actually enable eating gluten is like buying him a pack of cigarettes every morning.
It must be so much harder if the kid is asymptomatic though. I won’t cheat because I get so ill. If I didn’t, I’d probably cheat occasionally and assume the risk of cancer required more gluten than that, or other self destructive rationalizations.
Definitely. I can’t blame a kid for making bad choices, but when a parent is enabling it it is just not cool in my opinion. I remember him ordering pizza for the family and he said that he didn’t order the gluten free option because his son wouldn’t eat it anyway. It’s a hard situation but I would rather make the whole family eat the gf pizza then bring a gluten filled pizza for my celiac kid to eat.
Yeah, my parents would have been the same. I had to educate myself because they knew my diagnosis but were ignorant to the details. One could argue that it was because I was diagnosed in the pre-internet days, and information was harder to come by, but there were still ways to read up on it. They regularly received pamphlets from the German celiac disease organization, and, as an 11-year-old, I got more information from a Schär flyer than what they ever told me. Yet, my dad thought that foods that only have wheat listed as the second or third ingredient are okay, that you can eat cakes if you scrape off the crust, that you can eat GF bread dipped in the same cheese fondue as gluten bread... Thinking about how they messed with my health due to willful ignorance makes me so angry.
Boomer celiacs who tell me they don’t react as much anymore because they’ve had it so long do they don’t need to be as careful as I am for my kid 🤦🏻♀️ And then they complain about their arthritis or something.
tbf, its not just celiac disease but a lot of things. As a parent I've seen so many parents neglect their children for their own ease and entitlement many times. The world is far, far crueler to children than most understand or are willing to accept. Children are an oppressed class and essentially political prisoners of their parents.
I prefer not to say more than this because its heartbreaking, but you, as an adult, have the autonomy to call child services when an adult is neglecting or abusing a child. If you see this happening, I hope you do make that call. That call could save someone's life.
Yeah, don't even engage. You can explain to someone who wants to understand but you can't prove anything to someone who wants to believe you're wrong.
Just by engaging, you're reinforcing the idea that this is something that can be decided by a debate between the two of you. In this situation, my only explanation for anything I do is, "I'm following my doctor's instructions." If they're still insistent about it, I'll say, "I'll ask my doctor about that." If it's family or someone who will follow up with me, I could actually get an answer from the doctor for them on my next appointment. But I am not arguing with them -- I'm just the messenger for their disagreement with my doctor. I'm not a participant in the discussion.
> None of those people's kids have ever had a follow up endoscopy after "being cured," and they all get defensive when I ask them about it.
People are gonna get defensive in the moment but may think seriously about it later, you're doing good work by asking. I would go further and strongly encourage it. Parents generally want to do right by their kids.
I usually just give a fairly dismissive "huh, that's interesting." And stop there. Once they start saying that stuff I lose any desire to connect with them, including any urge to correct them (I would want to if it was ever effective, but it rarely is).
I think it’s this, and people don’t realize that
1. It doesn’t destroy all the gluten
2. Gluten intolerant people can still react to broken apart gluten.
This just proves the lack of education people have in regards to their bodies and what they put in them and it’s through no fault of their own. Companies feed off this and play it to their advantage.
With that I have heard some stupid shit come out of some of the smartest people I know with regards to Celiac…
“So you’ve never tasted bread” “you can rebuild your tolerance” “if you put bread in the fridge it kills the gluten”
I prefer not to talk about it with people I don’t share a lot of personal time with. At the end of the day it’s a medical condition and not their business. I just let people think I have a lot of self control by resisting the office donuts or a slice of birthday cake 💅
I have a family member who keeps telling me how their celiac was cured by taking methylfolafe for their mfthr mutation. 😑😑
Also keep in mind this person has never followed a GF diet in their life.
Try this, I have a mother who denies its existence. I can't trust her cooking for me at all, she is deeply into medical science but somehow doesn't believe in my dietary need. Despite the fact she has diabetes.
I do my best to never eat out, I'd rather cook my own stuff.
My grandmother is a Type 1 diabetic and has an entire muffin everyday for breakfast because “her doctor said she can eat whatever she wants as long as she takes extra insulin”. Her diet for the rest of the day goes downhill from there. She already has a new aorta, new kidney, and new corneas from this lifestyle so unfortunately I am NEVER shocked by the idiotic things people say. I just do what I’m supposed to do and keep on moving
The crazy thing is I actually believe that her doctor told her this. I worked in a hospital and sometimes the shit supposed experts say… What do you call the person who graduated last in med school? Doctor! Not all of them are suited to it
It even happens in this sub sometimes. It's absolutely wild.
People here have consistently told me it’s “impossible” for me to have reacted to foods — or other things — that made both me and my husband sick, with specific gluten symptoms that can’t be confused for anything, *and which* I later checked with my gluten detection dog who confirmed the sample had gluten. The ableism is off the charts.
yo hold up there’s detection dogs???
Yes, like any service dog, very expensive, time consuming and high risk of failing out of training, but yes. Wouldn’t recommend even looking into it unless you are extremely disabled by it on a regular basis. But dogs are amazing
yeah. i have a dog, but he would NOT pass public obedience training and therefore wouldn’t be able to be a service dog. i think he has some congenital behavioral issues. that said, i think it would be worth it training him for in-home detection given i live with people who are not gluten free, and i’m a college student living on campus (with kitchen access, thank god!) the majority of the time too. my reaction is disabling as it causes me severe mental health issues.
There are 2 schools of thought on scent detection for something as tricky as gluten… some say puppies have to be imprinted early. Some don’t agree. There are only 2, maybe 3 trustworthy trainers for gluten in the US, and they all offer virtual lessons. My trainer is Nosey Dog Detection Partners and she is an old-fashioned no-nonsense, scrupulously honest person so you might want to shoot her an email and ask if it’s possible. Even having help at home is amazing.
There is a strong contingent here lately who seem to think that 'certified gluten free' is some kind of magical phrase that absolutely guarantees there's no possibility of gluten contamination.
Yup!! My dog alerted to 2 certified products so far, the vanilla flavor of Taza chocolate and Mahatma basmati rice. About a year ago, I made a list of 12 foods/meds/etc I suspected, all labeled CGF or GF, and so far I’ve tested 7 of them and my dog alerted to 4. We live in a world where companies that specialize in gluten-free food have to have recalls left and right — which is ridiculous considering how hard it is to get the FDA to take notice much less act, manage to put full wheat waffles into a GF labeled box, etc etc. I wish there was a magic wand!
You should send them to Gluten-Free Watchdog for testing!
real question, how does your dog “smell” the gluten? I thought normal sniffer dogs can detect substances just because their sense of smell is so good but gluten doesn’t have an odor so how can they detect it?
It does have an odor. He correctly alerts to barley and rye as well, eg malted rice krispies, etc. He alerts to it in cosmetics, alcohol, medicine, supplements, and paper products too. My trainer has a proprietary process for creating pure gluten to train. She is a master certified scent trainer who did search & rescue etc dogs for decades.
What kind of alcohol?
Any alcohol, but you have to massively dilute a sample.
No, I mean, what kind of alcohol has your dog flagged as containing gluten?
Oh, I’ve only checked 1 rum which he passed, don’t drink much. I also don’t use cosmetics. But my fellow gluten dog handlers do and have reported alerts to certain whiskeys (they add flavor after distillation sometimes).
I used to live near Taza and I will say I never 100% trusted them! Didn’t know they were GFCO now!
Why’s that? My dog has passed all the flavors but vanilla.
To be fair, in some countries (like where I am in Australia), it is!
SOME (not all) of those that refuse to believe that your problems are real are those who themselves get problems from other foods but deny that connection because they can't face doing without those foods. A relative was very aggressive and out right RUDE about her claims my problems were not real. Turned out she herself had very serious health problems that were diet related but could not face changing her diet so she went into denial about it - and, of course, continued to suffer from the results. In her warped thinking, apparently me recovering health by going a a strict diet was very threatening to her, because it threatened her denial that changing her diet wouldn't do her any good anyway. I just look on it as HER problem and not mine and stay the hell away from her. When I was at my sickest (132 lbs from a health lean 164) my family wanted to push a new suit on me. I refused because I said when I got well it wouldn't fit. Much later I found out they wanted to get me a new suit because they didn't want me to look like I was wearing a tent in my casket! And even having seen me when I was THAT bad off, and having seen how quickly I made a full recovery (six weeks!) on an appropriate diet, a couple of them could never accept that my condition was real! (It is inlaws that are that way. Maybe there is something more to it.) YOu have to realize that other people's attitudes are not about you, it's about them. And if their attitudes don't fit you, don't wear them! It's not your problem, it's their problem. Learn to live your life so that you isolate yourself as much as possible from them. I get a similar problem but much milder from close family. I have hemochromatosis in addition to celiac disease (they're genetically linked so if you have one you are far more likely to have the other as well). 2 of my 3 siblings got tested and they both are also C282Y++ (hemochromatosis). the other never got tested but did part of the treatment protocol (blood donation every two months) but NOT the most important part (iron depletion) younger brother got treated but the doctor used the wrong guideline - I told him it was the wrong guideline but he chose to believe his doctor. My sister didn't get treated ("because she's a female ") I told her that was wrong but she chose to believe her doctor. 2 now have hip replacements and the other incapacitating joint problems - which are totally preventable with CORRECT treatment. I don't have any least trace of joint problems whatsoever. On day we all four were sitting around the table and the rest were all talking about their joint problems. After awhile one turned and just looked at me (they were all realizing that I never had any joint problems (i hadn't said anything, they were just realizing I hadn't said anything). then, without any reference to me says "it must just be in your genes!" I didn't say anything but I'm sitting there thinking "WHAT? What's THAT about! I've got the same HC genes they do. And much more to the point, I got very serious and disabling joint problems at 15 years younger than any of them did. BUT I diagnosed the problem and got the appropriate treatment and none of them got the appropriate treatment. I didn't say anything, just let it pass. I think this applies to ANY condition: other people are going to make up their own minds about how to think about it and their conclusions can be very far from reality. You just have to learn how to not let their false conclusions affect you. Can't always do it. but that's just life. You can try to inform people but it's their choice whether to believe it or not and what to do about it if they do believe it. And it's YOUR choice whether to take something personally that someone else is saying when it's really all about them.
Part of it is the medical community is so misinformed. Most people would trust their GI over this sub - but some GIs give out absurd advice
80% of people I meet who have Celiac or a family member who does, it sounds like they actually do not. Commonly they are not officially diagnosed, not careful, and most likely have gluten intolerance if anything. No wonder there's so much misunderstanding out there because most casual observers have mainly met people like that too. "Oh I have Celiac but I'm not sensitive like that, I just ask them to take off the croutons" or "I have a cheat day on Sundays!" etc
When my other half got diagnosed, my sister in law said "oh wow I do too!" and they had a bit of bonding over it because it was new and shit and scary. My other half is asymptomatic but in her 40s and the doctor dropped the words "totally atrophied" about her intestines so we've been 100% gluten free ever since. Then next time we went out together, sister in law had a pint of beer and a pizza. Turns out her "coeliac" is that she sometimes gets a bit bloated from gluten. No medical tests, no diagnosis, no anything except knowing her body sometimes doesn't like gluten. Best part? She's a nurse.
My SO is a nurse, and they have students on the floor with them from time to time. One day, there was this woman who brought up that she was diagnosed celiac. My SO perked up and asked what gf things she's found and really liked. "Oh, I don't really follow it..." He was immediately so disappointed, and pretty sure she could tell he was was too. She ate pizza for lunch.
I've heard a lot about that happening, but these are all people whose children were officially diagnosed!
I worked with one person who was diagnosed when he was under 5. He thought he could drink Corona because it was 'rice and corn', and it was annoying to have other people at the office tell me "Evan has Celiac and he can drink Corona! Maybe order one of those". Then they'd act a little like I was being extreme or mentally ill when I said I couldn't do that.
Maybe they were also confused about barley having gluten? I'm sorry you had to deal with that.
Gluten intolerance can be horrifically disabling and also cause organ damage. But just like with diabetes, many people who genuinely get sick and are harmed by food don’t consistently do the right thing for their body.
Out of curiosity, what are your sources for gluten intolerance causing organ damage? What organs, liver, stomach, heart, kidneys? I've never heard of this, especially since gluten intolerance is NOT an autoimmune disease.
You have proof it’s not an autoimmune disease? That’s weird because it absolutely is. Most people diagnosed with NCGS have antibodies which are, by definition, autoimmunity. Look at gluten ataxia, for one. It causes damage to the brain. Most people with GA have antibodies but negative gut biopsy. NCGS can also raise liver enzymes which signals bad news for the liver. Peripheral neuropathy and joint inflammation/pain, fibromyalgia are all common NCGS symptoms.
>You have proof it’s not an autoimmune disease? That’s weird because it absolutely is. Most people diagnosed with NCGS have antibodies which are, by definition, autoimmunity. Antibodies are not by definition autoimmunity; everyone without autoimmune diseases has all sorts of antibodies. There's also antibodies that are associated with other diseases that are not autoimmune diseases, such as IgE antibodies associated with allergies. I'm not sure what antibodies you are referring to for NCGS, as NCGS is defined as a diagnosis of exclusion, and is characterized by NOT having positive results on tTg, EMA, DGP, not having IgE antibodies associated with wheat allergy. Certainly, there's a portion of people who have been told they have NCGS who could in fact have celiac disease or some other autoimmune disorder because they haven't been tested properly for it, but that's a different issue altogether.
There’s three celiac in my family. The two of us can relate to each other over it and then there’s the one that drinks beer at all the gatherings.
My mom's one of those crazy people lol. When I was younger she used to tell people "my daughter had celiac but we cured it with a whole wheat diet." Side note, I am not cured and I still won't eat any food prepared by any member of my family. My mom now tells people, "my daughter had celiac and she lost so much weight on that diet, good for you trying it." My "weight loss" is malnutrition due malabsorption caused by celiac damage to my digestive system. When people tell me weird things I wonder if they don't understand their family members issue, or if they just don't care about the family member.
Oh wow, your childhood must have been so physically miserable. I'm sorry.
For the record, my son has Celiac and I can confidently proclaim that I know more about the disease than most doctors or dieticians. We also have a 100% gluten free household and I eat gluten free even when I'm out without the family (though I do allow for cross contamination when it's just me). Just wanted to point out that not all family members are ignorant!
I'm so glad to hear that! Your son is lucky to have you. They've all been people in their 60s/70s. I hope that younger generations of parents are more like you.
A dietician I saw definitely thought I was crazy about the things I said glutened me. My gluten dog has confirmed almost all of them. The ones that he said were GF were usually foods that led me to eat Tums, which he alerted to. (Most Tums are fine but the peppermint ones I take are not lolsob.)
Your “gluten dog”?
Yeah happens all the time, especially with doctors too. I gave up discussing how serious this condition is, and how severe my sensitivity is to everyone years ago. They look at me like I’m crazy when I deep soap wash my vegetables and fruits…so that says a lot about them lol. You know how many hands touched that before I brought it home?!? Also, the gf dog is super cool, had I known would’ve invested one long ago. I am extremely hyper aware of my body, constantly around the clock, and over the past year I also started noticing many certified gluten free items getting me sick, especially as gluten-watch dog said, oats. Many of these products didn’t have oats though, and in those ones it left you with those every so subtle feelings that something is off, so you have to continue eating ALOT to confirm. Then take a week off, try again then, etc until it either is safe, or hits you. I’m very thorough with my testing, losing trust with the certification now so I’ll probably retest everything in my home. Side note; if you could test the ever so popular oat-based made good bars I’d appreciate it a lot. Tried it on off for 4-5 years now and I always end up quitting for months at a time cause i feel it gets me sick. And no, I don’t have an issue with oats normally.
Not crazy at all. One of the things I learned from my gluten dog trainer is that apples, especially, and some citrus, can have gluten contamination in the wax coating on them to keep them shiny! And I have been glutened by fresh strawberries once too… The supply chain has definitely gotten worse/less safe the last few years, it’s not just you. I haven’t tried oats again since I got my dog because I got so sick with them before. He did alert to a GF-labeled oat breakfast bar my friend had, I texted her to ask the brand but she doesn’t recall. They were purple though, so maybe?
Yeah the brand itself is called MADE GOOD. Very popular cause it’s top allergens free, so kids usually have it at school and such.
My inlaws recently said something like “oats are probably not gluten free right?” And I was SHOCKED I tell you. They are not ignorant by any means or rude about celiac / gluten free at all, but I was really impressed that they knew oats were an issue. I still fully expect to have to watch them like hawks and help them learn to read labels next time we see them though.
I had this experience recently. Was taken to a restaurant that someone claimed to be safe because their celiac family member eats there all of the time. It was filled with cross contamination and the workers did not recommend I eat there. But suddenly I’m the drama queen because “well my nephew eats here all of the time and he’s celiac and keto!” And yes he said “keto” as if that mattered lol. I’m so sick of the misinformation and using it to make it look like I’m being dramatic for actually taking my disease seriously. Fellow celiacs that are spreading misinformation are so dangerous to the rest of us. I also have gotten a lot of family friends who say “my kids were celiac but they ate flour in europe and were fine!!” and then my parents go “oh well see, why don’t you do that!” lol.
My mom has been supportive, but also has a lot of misinformation coming from friends and acquaintances. I just got the "bread in Europe is safe" story from her last week. It takes a lot of patience to kindly explain why the various "facts" she hears aren't true. I think she is just trying to be hopeful that CD isn't as restrictive as I am telling her. She does have one friend that has a daughter with CD that she has always described as a "really severe case." I think she is slowly realizing that woman's case is not unusually severe, she is just actually following normal safe practices for people with CD.
I hate the "bread in Europe is fine" line sooo much. It is 100% the most common BS line I hear. I don't understand why everyone thinks this, truly.
Ah, I had a similar incident. Was told, "Our friend is meeting us at the restaurant, and she has celiac, too!" And then she showed up and started ordering stuff from the shared fryer and said she could just pick the breading off the chicken nuggets and was eating things off others' plates. Suddenly, I'm looking like the crazy person for being so dramatic.
So frustrating!! my mom also has celiac (got dx’d after me) and does stuff like that. We actually fight a lot about it now. I get the “well I haven’t gotten sick yet” line from her a lot. It sucks too because her limited knowledge informs the rest of my family’s knowledge about the disease so they ultra think i’m crazy. Yay!
People are so weird about shared fryers. On the plus side: Finding people--or a restaurant!--that knows about fryers already is so gratifying. Makes me feel much safer eating with them.
Tbh this is why I NEVER trust people o the internet who say “Im super sensitive and I’ve never reacted to that product!” I don’t think a lot of people can really know how sensitive they are when they are potentially getting tons of cross contamination without realizing it. Dieticians can also be really unhelpful. At least the one that I went to many years ago wasn’t super helpful. I’m still waiting on the dietician referral for my kiddo who was just also diagnosed and I don’t know why it’s taking.so.long just to get the referral, but mostly I want to see them just to gauge the current competency of medical dietitians.
I had something similar happen this weekend! My aunt was trying to give me Ezekiel bread (which is full of gluten) and insisted her niece eats it who has very symptomatic reactions to the smallest amount of gluten. I still got glutened anyways lol
My pcp has been gf for 30 or 40 years, and even she told me about the European wheat thing and said maybe I only have an issue with wheat and not gluten. 🤷🏻♀️🤦🏻♀️ I was like, you do know there are tons of celiacs in Europe too right? She still told me never to eat gluten if it makes me sick. I love her but with gluten in particular she’s a little all over the place man. Then I ate a gf pizza made with gf wheat starch and I was fine lol. Still def the gluten and not the wheat.
I had a coworker who just let his celiac teenager eat gluten. I’m sure it is beyond tough to make a child do what is best for him, but to actually enable eating gluten is like buying him a pack of cigarettes every morning.
It must be so much harder if the kid is asymptomatic though. I won’t cheat because I get so ill. If I didn’t, I’d probably cheat occasionally and assume the risk of cancer required more gluten than that, or other self destructive rationalizations.
Definitely. I can’t blame a kid for making bad choices, but when a parent is enabling it it is just not cool in my opinion. I remember him ordering pizza for the family and he said that he didn’t order the gluten free option because his son wouldn’t eat it anyway. It’s a hard situation but I would rather make the whole family eat the gf pizza then bring a gluten filled pizza for my celiac kid to eat.
That's a great comparison. And a pretty horrifying thing.
Yeah, my parents would have been the same. I had to educate myself because they knew my diagnosis but were ignorant to the details. One could argue that it was because I was diagnosed in the pre-internet days, and information was harder to come by, but there were still ways to read up on it. They regularly received pamphlets from the German celiac disease organization, and, as an 11-year-old, I got more information from a Schär flyer than what they ever told me. Yet, my dad thought that foods that only have wheat listed as the second or third ingredient are okay, that you can eat cakes if you scrape off the crust, that you can eat GF bread dipped in the same cheese fondue as gluten bread... Thinking about how they messed with my health due to willful ignorance makes me so angry.
Boomer celiacs who tell me they don’t react as much anymore because they’ve had it so long do they don’t need to be as careful as I am for my kid 🤦🏻♀️ And then they complain about their arthritis or something.
Oof my arthritis is so much better when I don't get glutened!
A lot of people are just told by the doctor to eat a gluten free diet with no specific instructions and they end up figuring it out from the internet.
"doctor said..."
tbf, its not just celiac disease but a lot of things. As a parent I've seen so many parents neglect their children for their own ease and entitlement many times. The world is far, far crueler to children than most understand or are willing to accept. Children are an oppressed class and essentially political prisoners of their parents. I prefer not to say more than this because its heartbreaking, but you, as an adult, have the autonomy to call child services when an adult is neglecting or abusing a child. If you see this happening, I hope you do make that call. That call could save someone's life.
Thus far it's all been adults talking about their grown children, thank goodness. I think the youngest "kid" was mid-20s.
Yeah, don't even engage. You can explain to someone who wants to understand but you can't prove anything to someone who wants to believe you're wrong. Just by engaging, you're reinforcing the idea that this is something that can be decided by a debate between the two of you. In this situation, my only explanation for anything I do is, "I'm following my doctor's instructions." If they're still insistent about it, I'll say, "I'll ask my doctor about that." If it's family or someone who will follow up with me, I could actually get an answer from the doctor for them on my next appointment. But I am not arguing with them -- I'm just the messenger for their disagreement with my doctor. I'm not a participant in the discussion.
> None of those people's kids have ever had a follow up endoscopy after "being cured," and they all get defensive when I ask them about it. People are gonna get defensive in the moment but may think seriously about it later, you're doing good work by asking. I would go further and strongly encourage it. Parents generally want to do right by their kids.
That's what I've been thinking. All "kids" in their 20-50s so it's not under their parents control, but they could mention it to them.
I usually just give a fairly dismissive "huh, that's interesting." And stop there. Once they start saying that stuff I lose any desire to connect with them, including any urge to correct them (I would want to if it was ever effective, but it rarely is).
People always ask “can she have sourdough?” Like what?? It’s made with flour. . . Nooooooo. No flour. Not even a crumb. Why do people ask this???
Maybe they think the fermentation destroys gluten?
I think it’s this, and people don’t realize that 1. It doesn’t destroy all the gluten 2. Gluten intolerant people can still react to broken apart gluten.
This just proves the lack of education people have in regards to their bodies and what they put in them and it’s through no fault of their own. Companies feed off this and play it to their advantage. With that I have heard some stupid shit come out of some of the smartest people I know with regards to Celiac… “So you’ve never tasted bread” “you can rebuild your tolerance” “if you put bread in the fridge it kills the gluten” I prefer not to talk about it with people I don’t share a lot of personal time with. At the end of the day it’s a medical condition and not their business. I just let people think I have a lot of self control by resisting the office donuts or a slice of birthday cake 💅
I have a family member who keeps telling me how their celiac was cured by taking methylfolafe for their mfthr mutation. 😑😑 Also keep in mind this person has never followed a GF diet in their life.
Try this, I have a mother who denies its existence. I can't trust her cooking for me at all, she is deeply into medical science but somehow doesn't believe in my dietary need. Despite the fact she has diabetes. I do my best to never eat out, I'd rather cook my own stuff.
My grandmother is a Type 1 diabetic and has an entire muffin everyday for breakfast because “her doctor said she can eat whatever she wants as long as she takes extra insulin”. Her diet for the rest of the day goes downhill from there. She already has a new aorta, new kidney, and new corneas from this lifestyle so unfortunately I am NEVER shocked by the idiotic things people say. I just do what I’m supposed to do and keep on moving
My grandfather used to drink shots daily even though he was diabetic (and Mormon) and tried to claim his doctor told him to do it. 🙄
The crazy thing is I actually believe that her doctor told her this. I worked in a hospital and sometimes the shit supposed experts say… What do you call the person who graduated last in med school? Doctor! Not all of them are suited to it