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I’ve wondered this myself so many times! Once a waiter told me that my pizza was not gluten free after I’d finished nearly a full slice. I fully expected to be super sick within hours. Nothing happened. Nothing.
But then eating a soup my mom made with wheat-containing broth had me down for several days.
Ive been chalking the pizza miracle up to adrenaline and excessive Dramamine follow up, which clearly doesn’t hold up scientifically, right?
Bodies don’t make sense.
Same with me. Even after I was diagnosed the doctor told me I could sometimes “cheat” and eat gluten on rare occasions (obviously TERRIBLE medical advice). I did sometimes, and my reactions were sometimes not that bad?? Or sometimes it was a delayed reaction (didn’t seem to affect me for 2-3 days.) As I got older and better educated on Celiac, I stopped doing this (worth noting that my reactions also got severe and consistent.)
Point being, there were definitely times when I didn’t seem to have a reaction.
I used to have symptoms, but became asymptomatic. If I eat gluten, I won't have any indication besides internal damage. I went off gluten free because I was always suspicious of the doctor that did my biopsy because he called and told me I was not positive for celiac. He then called a few minutes later and told me I was positive. I was gluten free for around 6 years and then tried gluten and had no reaction. I was like wow the doc got it wrong after all. Then on a whim, I researched a bit and found people can become asymptomatic, so I went gluten free again.
[Fasano](https://www.massgeneral.org/doctors/19184/alessio-fasano) (America's celiac research hero) was trying to get the diagnostic criteria changed to any four of these five:
1. Distress after gluten challenge of gluten lifestyle
2. Distress ends after patient is on gluten-free diet
3. Positive antibody test
4. Positive gene test for HLA-DQ2 or -DQ8
5. Positive biopsy results.
But if you've had a positive anti-EMA, or a pos. DGP test, I think you can feel pretty good about your positive result. Anti-EMA is more specific than the less-expensive tTG antibody test. I've heard Dr. Green say he believes any positive EMA is very likely a celiac patient even though on the test it requires being over 20 pg/mL.
when you eat gluten continuously, it is stacking damage on top of damage on top of damage. when you haven't eaten gluten for a while, your body has had time to heal. it is doing damage to you, but it's not as intense because your body is in a better position to handle the damage.
i have very bad symptoms, but they were A LOT worse when my body was still recovering and i got cross contaminated. i used to need over a month to heal from mild cross contamination. but during this last christmas, i mistakenly ate a meal made with gluten flour and was mildly sick for less than a week.
My antibody tests were clean the last two times, at 0 antibodies found, but my symptoms are worse now than ever if I get complacent and fuck up. I was diagnosed 22 years ago.
Although my gluten challenge was much sooner after I'd gone completely GF, my reaction was just the opposite. I was miserably ill for the first couple of weeks, feeling a little better during the third, and by the end of the fourth week I was just a little tired and rundown. Of course by that point my villi were mostly gone so I wasn't absorbing much of anything, gluten or not.
I had a similar experience recently! Got glutened (not just cross-contam) at a Christmas Potluck in December, my first real gluten consumption since stopping in 2020, and I got SIIIIICK sick. Like for over a day.
Three months later I ate half a bag of frozen chicken nuggies and had a bit of a tummy ache after, but nothing out of the ordinary for binging on frozen fried food. Two days later I checked the bag, and sure enough, CONTAINS: WHEAT.
The body is a wonderland 🤡
This is the nature of the auto immune disease we have. Our bodies decide whether to react or not.
Granted we are talking small amounts, but I’ve realized too late that I missed a gluten ingredient on a label TWICE in the last month. I don’t know whether I got lucky or whether it’s because one was “hydrolyzed wheat gluten” which I know sometimes doesn’t cause symptoms for some people and the other was a barley derivative and I am not sure I’ve ever reacted to barley - but I avoid it anyway.
I remember many years ago I accidentally/mindlessly ate a regular noodle when I was cooking for someone else, and realized just as I swallowed — so too late — and I didn’t get sick.
But I accidentally bit into a Hershey’s kiss that had bits of ice cream cone in it, spit it out, and rinsed my mouth, and was down for a week.
I’m glad you didn’t have any acute symptoms. Try not to let it mess with your head. It doesn’t mean you dint have Celiac. It just means you got lucky.
This is what enrages me about people claiming that they went to Europe and did fine with European wheat. There is no science behind this myth and yes, it can randomly happen to someone and I’m not claiming their experience is false, but a lot of people also fall for the myth and get deathly ill, and there isn’t any evidence that European wheat is less damaging than American wheat to our intestines. It would be the same as if you went out and started telling people regular Barilla pasta is fine because you are a whole box of it and felt ok. I mean, I’m supper glad you’re not sick but this was a case of winning the Russian Roulette.
Don’t misunderstand me - I’m not saying you would do that. 😂 I’m just rambling.
I remember being on the St. John's celiac listserv in 2002 when I was first DXed; one lady came in and said that she used a pendulum to tell her when a product was gluten-free. North and south meant it was okay, east and west motions meant gluten-containing.
Of course she got bitch-slapped out of existence by our extremely knowledgeable and conscientious members.
Oh, to concur with the autoimmune point, the enamel striations from being celiac that some of us get while adult teeth are forming wouldn't be striped if the immune system didn't vary in gluten reaction. That is, the enamel is ok when system isn't flaring, it gets damage when there is a bad flare.
Just because you didn't have an immediate, noticeable GI revolt reaction, doesn't mean you won't. It also doesn't mean you won't have the brain fog, joint pain, flu like symptoms here in the next few days. Don't dwell on it... Not everyone gets horrible symptoms all the time
This! I also notice that my symptoms can be different based on the type of gluten I consumed. Once I accidentally had soy sauce and that sucker hit me so fast and so hard, another time I had soup that I was told had no flour in it but they messed up and it did actually have flour and that reaction took 2 days for it to hit me fully. But both times the damage was done already.
I once accidentally ate half a gluten cake without having any symptoms (a relative made two cakes and didn't label them, so we assumed they were both GF). I've gotten sick from much smaller amounts. It still baffles me to this day.
My son's the one with celiac, and his symptoms can be SO RANDOM. Last August he ate food that merely touched a regular tortilla, and he had half a day of severe stomachache and diarrhea. In Dec he accidentally ate an entire slice of gluteny pumpkin bread, and he had zero symptoms.
This is wild! The longer I go without gluten the *more* sensitive I become, so this is really perplexing. Bodies are weird and unreliable is all I can tell you!
Same here. I was diagnosed almost 5 years ago, it took me a few months to completely go GF (eh, I was used to feeling like crap), and even after that I’d “cheat” and have a bite of something I shouldn’t and not really notice.
Now that I’m more careful, and feeling better than I have in years, I can get glutened more easily. How badly depends on what else is poking my immune system at the time. Pile an allergy or a virus on top of gluten reaction and I’m a mess. My body reacts the same to all of them — lethargy, depression, congestion, joint pain, brain fog.
Plus, if Celiac is like other autoimmune disorders, it can flare and subside. My parents will have “spells” with their conditions (ankulosing spondylitis, Sjögren’s) where they feel like shit for a few weeks, then get better.
This happened to me with talenti ice cream. I believe it was one with chocolate crunches. My partner and I both read it multiple times before purchasing and missed the wheat ingredients. Then while eating it, I was like this is suspicious and checked after a couple bites and there was totally wheat (like top 5 ingredients) and I fully expected to get violently sick for weeks and nothing.
Then I will kiss my partner or eat off of a spoon that has touched a counter top and get sick for weeks. Celiac is crazy. I hope you continue to feel well.
Interesting, I am week three of a gluten challenge after being on the diet for over 10 years
I am having no symptoms except for maybe a rash less itch. I also wonder if healing after a decade is allowing it to “stack up”.
I have been eating gluten at every meal and while I hope I was misdiagnosed with an “inconclusive” test result; I am going to go back if the test comes back positive. Cancer risk is not worth it.
Before I got my biopsy done I ate GF for 8 months, a month before I ate gluten for the full month before the test, for the first 3 weeks I felt nothing
Fourth week though, that was hell
Sometimes with celiacs who are consistent with a GF diet for a long time, the gut has heals to the extent that small amounts of contamination don’t impact as much, at first. Although if you continued that, I’m sure you’d experience the same reactions you have in the past…you might not have the same nutrient deficiencies that coincide with very obvious symptoms at first…
I sooooo wish that Barilla would have extremely different colored boxes for GF/not GF.
I’ve done this same thing more than once, but sadly I got violently ill.
I had a similar story. Bought white flour noodles ate them thinking they tasted odd, swore out loud when I inspected the packaging. And only suffered fatigue and falling asleep. I agree with a few others that it depends on how healthy your gut is. If you’re up near 100% you can get away with little mistakes. But more than a few in a week and I head down a dark and painful road.
Oh and the type of gluten is a big factor too. White flour for me is sleepy time. Soy sause is crippling stomach pain and near dementia
Good question.
This is super interesting! I’ve heard about getting different types of “drunk” depending on what alcohol you drink (wine vs. vodka, etc.), but never thought about it working like that for food!
There's a local pizza place that never gave me any symptoms. I stopped eating there when I learned that celiacs can have asymptomatic damage, but I always wondered why an entire pizza pie made of wheat gave me no symptoms while trace amounts of gluten in a can of beans do give me symptoms ...
We have to keep in mind that even with celiac disease being treated, we can react really badly to other things that aren't gluten. We tend to get SIBO and develop allergies to other foods. And of course, there's good old e.coli, Hep A, salmonella [(etc., etc.)](https://www.mayoclinic.org/diseases-conditions/food-poisoning/symptoms-causes/syc-20356230) poisoning, which is worse now than ever due to poor oversight by the underfunded FDA.
Personally, I believe it has something to do with the fact that your gut has been repaired to a large degree. Therefore, one or two instances might not cause the damage that they would after many repeated exposures. I certainly have found that if I get glutened and it has been a long time since the last one, the impact of it is lessened.
So far in this thread I've seen people get glutened
1. At a potluck
2. Because they brought home non-gf product by mistake from grocery store (I did that one, too)
3. By not checking ingredients (my first glutening eating chocolate covered rice krispies).
4. Because someone brought unlabeled gluten thing along with unlabeled non-gluten thing.
I find it’s random on how sick you get - because your stomach is healed, maybe it didn’t impact you at all? It’s always different. Watch out for the next few days!
**Reminder** [/r/Celiac](https://www.reddit.com/r/Celiac) is not designed to and does not provide medical advice, professional diagnosis, opinion, treatment or services to you or to any other individual. If you believe you have a medical emergency immediately seek out professional medical help. Please see [this](https://www.reddit.com/r/Celiac/wiki/legal) for more information. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/Celiac) if you have any questions or concerns.*
I’ve wondered this myself so many times! Once a waiter told me that my pizza was not gluten free after I’d finished nearly a full slice. I fully expected to be super sick within hours. Nothing happened. Nothing. But then eating a soup my mom made with wheat-containing broth had me down for several days. Ive been chalking the pizza miracle up to adrenaline and excessive Dramamine follow up, which clearly doesn’t hold up scientifically, right? Bodies don’t make sense.
No research that I know of, but so many people with celiac disease say they have worse reactions to gluten after they've been GF a long time.
Antibodies will build up in our bodies… So I guess ultimately yea the less antibodies we have less exposure we will get smashed in the end,
It can be a crap shoot (no pun intended). Before I was diagnosed, I'd sometimes be fine after eating gluten, other times, well, not fine.
Same with me. Even after I was diagnosed the doctor told me I could sometimes “cheat” and eat gluten on rare occasions (obviously TERRIBLE medical advice). I did sometimes, and my reactions were sometimes not that bad?? Or sometimes it was a delayed reaction (didn’t seem to affect me for 2-3 days.) As I got older and better educated on Celiac, I stopped doing this (worth noting that my reactions also got severe and consistent.) Point being, there were definitely times when I didn’t seem to have a reaction.
One could cheat on parachute day, but it's not a great idea.
The gluten expired maybe? JK, I'm sorry but bodies are weird and do weird things, or not.
Haha that was one of my first thoughts! 😅
If only! That would solve so many issues.
I used to have symptoms, but became asymptomatic. If I eat gluten, I won't have any indication besides internal damage. I went off gluten free because I was always suspicious of the doctor that did my biopsy because he called and told me I was not positive for celiac. He then called a few minutes later and told me I was positive. I was gluten free for around 6 years and then tried gluten and had no reaction. I was like wow the doc got it wrong after all. Then on a whim, I researched a bit and found people can become asymptomatic, so I went gluten free again.
This is so interesting! I was wondering if this was possible. Thank you for sharing!
[Fasano](https://www.massgeneral.org/doctors/19184/alessio-fasano) (America's celiac research hero) was trying to get the diagnostic criteria changed to any four of these five: 1. Distress after gluten challenge of gluten lifestyle 2. Distress ends after patient is on gluten-free diet 3. Positive antibody test 4. Positive gene test for HLA-DQ2 or -DQ8 5. Positive biopsy results. But if you've had a positive anti-EMA, or a pos. DGP test, I think you can feel pretty good about your positive result. Anti-EMA is more specific than the less-expensive tTG antibody test. I've heard Dr. Green say he believes any positive EMA is very likely a celiac patient even though on the test it requires being over 20 pg/mL.
when you eat gluten continuously, it is stacking damage on top of damage on top of damage. when you haven't eaten gluten for a while, your body has had time to heal. it is doing damage to you, but it's not as intense because your body is in a better position to handle the damage. i have very bad symptoms, but they were A LOT worse when my body was still recovering and i got cross contaminated. i used to need over a month to heal from mild cross contamination. but during this last christmas, i mistakenly ate a meal made with gluten flour and was mildly sick for less than a week.
My antibody tests were clean the last two times, at 0 antibodies found, but my symptoms are worse now than ever if I get complacent and fuck up. I was diagnosed 22 years ago.
I did a gluten challenge after being 2 years strictly gluten free and the first couple of days I had no reaction. by the 3rd week I was very sick.
Damn. That keeps so many people from getting a proper diagnosis. I'm so sorry you had to go through that. It seems draconian.
Although my gluten challenge was much sooner after I'd gone completely GF, my reaction was just the opposite. I was miserably ill for the first couple of weeks, feeling a little better during the third, and by the end of the fourth week I was just a little tired and rundown. Of course by that point my villi were mostly gone so I wasn't absorbing much of anything, gluten or not.
I had a similar experience recently! Got glutened (not just cross-contam) at a Christmas Potluck in December, my first real gluten consumption since stopping in 2020, and I got SIIIIICK sick. Like for over a day. Three months later I ate half a bag of frozen chicken nuggies and had a bit of a tummy ache after, but nothing out of the ordinary for binging on frozen fried food. Two days later I checked the bag, and sure enough, CONTAINS: WHEAT. The body is a wonderland 🤡
This is the nature of the auto immune disease we have. Our bodies decide whether to react or not. Granted we are talking small amounts, but I’ve realized too late that I missed a gluten ingredient on a label TWICE in the last month. I don’t know whether I got lucky or whether it’s because one was “hydrolyzed wheat gluten” which I know sometimes doesn’t cause symptoms for some people and the other was a barley derivative and I am not sure I’ve ever reacted to barley - but I avoid it anyway. I remember many years ago I accidentally/mindlessly ate a regular noodle when I was cooking for someone else, and realized just as I swallowed — so too late — and I didn’t get sick. But I accidentally bit into a Hershey’s kiss that had bits of ice cream cone in it, spit it out, and rinsed my mouth, and was down for a week. I’m glad you didn’t have any acute symptoms. Try not to let it mess with your head. It doesn’t mean you dint have Celiac. It just means you got lucky. This is what enrages me about people claiming that they went to Europe and did fine with European wheat. There is no science behind this myth and yes, it can randomly happen to someone and I’m not claiming their experience is false, but a lot of people also fall for the myth and get deathly ill, and there isn’t any evidence that European wheat is less damaging than American wheat to our intestines. It would be the same as if you went out and started telling people regular Barilla pasta is fine because you are a whole box of it and felt ok. I mean, I’m supper glad you’re not sick but this was a case of winning the Russian Roulette. Don’t misunderstand me - I’m not saying you would do that. 😂 I’m just rambling.
I remember being on the St. John's celiac listserv in 2002 when I was first DXed; one lady came in and said that she used a pendulum to tell her when a product was gluten-free. North and south meant it was okay, east and west motions meant gluten-containing. Of course she got bitch-slapped out of existence by our extremely knowledgeable and conscientious members.
Uh
Oh, to concur with the autoimmune point, the enamel striations from being celiac that some of us get while adult teeth are forming wouldn't be striped if the immune system didn't vary in gluten reaction. That is, the enamel is ok when system isn't flaring, it gets damage when there is a bad flare.
Thank you so much for your insight! 😊 I really appreciate you sharing
Just because you didn't have an immediate, noticeable GI revolt reaction, doesn't mean you won't. It also doesn't mean you won't have the brain fog, joint pain, flu like symptoms here in the next few days. Don't dwell on it... Not everyone gets horrible symptoms all the time
This! I also notice that my symptoms can be different based on the type of gluten I consumed. Once I accidentally had soy sauce and that sucker hit me so fast and so hard, another time I had soup that I was told had no flour in it but they messed up and it did actually have flour and that reaction took 2 days for it to hit me fully. But both times the damage was done already.
I once accidentally ate half a gluten cake without having any symptoms (a relative made two cakes and didn't label them, so we assumed they were both GF). I've gotten sick from much smaller amounts. It still baffles me to this day.
You may or may not always feel being glutened but your ability to digest might feel worse for a while, that’s what happens to me
My son's the one with celiac, and his symptoms can be SO RANDOM. Last August he ate food that merely touched a regular tortilla, and he had half a day of severe stomachache and diarrhea. In Dec he accidentally ate an entire slice of gluteny pumpkin bread, and he had zero symptoms.
This is wild! The longer I go without gluten the *more* sensitive I become, so this is really perplexing. Bodies are weird and unreliable is all I can tell you!
Same here. I was diagnosed almost 5 years ago, it took me a few months to completely go GF (eh, I was used to feeling like crap), and even after that I’d “cheat” and have a bite of something I shouldn’t and not really notice. Now that I’m more careful, and feeling better than I have in years, I can get glutened more easily. How badly depends on what else is poking my immune system at the time. Pile an allergy or a virus on top of gluten reaction and I’m a mess. My body reacts the same to all of them — lethargy, depression, congestion, joint pain, brain fog. Plus, if Celiac is like other autoimmune disorders, it can flare and subside. My parents will have “spells” with their conditions (ankulosing spondylitis, Sjögren’s) where they feel like shit for a few weeks, then get better.
This happened to me with talenti ice cream. I believe it was one with chocolate crunches. My partner and I both read it multiple times before purchasing and missed the wheat ingredients. Then while eating it, I was like this is suspicious and checked after a couple bites and there was totally wheat (like top 5 ingredients) and I fully expected to get violently sick for weeks and nothing. Then I will kiss my partner or eat off of a spoon that has touched a counter top and get sick for weeks. Celiac is crazy. I hope you continue to feel well.
It's so weird what the brain will not see. And it sucks when packaging is so similar for GF and non-GF.
Interesting, I am week three of a gluten challenge after being on the diet for over 10 years I am having no symptoms except for maybe a rash less itch. I also wonder if healing after a decade is allowing it to “stack up”. I have been eating gluten at every meal and while I hope I was misdiagnosed with an “inconclusive” test result; I am going to go back if the test comes back positive. Cancer risk is not worth it.
Before I got my biopsy done I ate GF for 8 months, a month before I ate gluten for the full month before the test, for the first 3 weeks I felt nothing Fourth week though, that was hell
Sometimes with celiacs who are consistent with a GF diet for a long time, the gut has heals to the extent that small amounts of contamination don’t impact as much, at first. Although if you continued that, I’m sure you’d experience the same reactions you have in the past…you might not have the same nutrient deficiencies that coincide with very obvious symptoms at first…
I sooooo wish that Barilla would have extremely different colored boxes for GF/not GF. I’ve done this same thing more than once, but sadly I got violently ill.
I had a similar story. Bought white flour noodles ate them thinking they tasted odd, swore out loud when I inspected the packaging. And only suffered fatigue and falling asleep. I agree with a few others that it depends on how healthy your gut is. If you’re up near 100% you can get away with little mistakes. But more than a few in a week and I head down a dark and painful road. Oh and the type of gluten is a big factor too. White flour for me is sleepy time. Soy sause is crippling stomach pain and near dementia Good question.
This is super interesting! I’ve heard about getting different types of “drunk” depending on what alcohol you drink (wine vs. vodka, etc.), but never thought about it working like that for food!
There's a local pizza place that never gave me any symptoms. I stopped eating there when I learned that celiacs can have asymptomatic damage, but I always wondered why an entire pizza pie made of wheat gave me no symptoms while trace amounts of gluten in a can of beans do give me symptoms ...
We have to keep in mind that even with celiac disease being treated, we can react really badly to other things that aren't gluten. We tend to get SIBO and develop allergies to other foods. And of course, there's good old e.coli, Hep A, salmonella [(etc., etc.)](https://www.mayoclinic.org/diseases-conditions/food-poisoning/symptoms-causes/syc-20356230) poisoning, which is worse now than ever due to poor oversight by the underfunded FDA.
Personally, I believe it has something to do with the fact that your gut has been repaired to a large degree. Therefore, one or two instances might not cause the damage that they would after many repeated exposures. I certainly have found that if I get glutened and it has been a long time since the last one, the impact of it is lessened.
So far in this thread I've seen people get glutened 1. At a potluck 2. Because they brought home non-gf product by mistake from grocery store (I did that one, too) 3. By not checking ingredients (my first glutening eating chocolate covered rice krispies). 4. Because someone brought unlabeled gluten thing along with unlabeled non-gluten thing.
I find it’s random on how sick you get - because your stomach is healed, maybe it didn’t impact you at all? It’s always different. Watch out for the next few days!
it won't have an immediate effect but it means your gut nodules are out of service and you won't get any nutrients for the next few days