How Sensitive To Gluten Are You?

[T.H.]

I only got diagnosed last year, and I had kind of assumed that people would have the same sensitivity to gluten, if they had celiac disease. It's only been over the last few months, when I've been talking to other celiac folk in person, that I realized that a lot of other people do not seem to have to do what I'm doing.

I was following all the advice: scoured out my pans that were stainless steel, chucked the ones that were non-stick and scratched. Got rid of wood cooking implements or sanded them down, got rid of the plastics that I'd used with gluten, etc... We have a gluten free house, at the moment, from the soaps to the foods. I figured this was standard. I'd never shown ANY gut symptoms with celiac disease before, so I wasn't exactly expecting to have any after I went off gluten. That's one of the reasons I figured I'd be really good: if I can't tell if I've been glutened, I'd better be extra careful, yeah?

But now I've had a lot of people pooh-pooh the idea. I didn't really need to get rid of the pans - they'd used them and had no reaction whatsoever, or they'd eaten food made next to someone using flour, with no ill effects. Or they'd had foods that didn't say 'gluten-free' but simply didn't use gluten ingredients. And these were folks who HAD gut reactions to gluten.

So I tried this. I still had some of the pans lying around, so I used one. And now, it turns out, I have gut symptoms. I was so vilely ill, for days. Awful. I tried a different non-stick pan, thinking maybe it was something with the food, and had the same reaction. Same thing for eating a food that had no gluten ingredients, but wasn't specifically 'gluten free.'

So, I have 2 questions:

1. Do we celiacs really have such a wide range of sensitivity to gluten?

2. If we do, have any of you had to talk about it with other celiac disease folks who are LESS sensitive than you? Had any problems seeing eye to eye? How do you deal with it?

I was chatting with another gal with celiac disease, thinking it would be nice to be in a gluten-free-friendly discussion and it was almost MORE stressful. She wasn't as careful as I have to be, and was more aggressive in telling me that I was going way over the top, didn't have to worry about 'this and that,' etc...

But I know, from painful experience now, that I DO have to be this careful. Boiling peeled carrots in a pot of water doesn't leave a lot of room for contamination except from the scratched non-stick surface of the pot.

I suppose I'm feeling a little down about it. It's hard enough having to cope with family and friends who are trying to help, but still think you have to be 'wrong' about how you can get gluten. That you're, frankly, a bit of a nut now. It felt almost worse to talk with someone, when we have something that we could connect on, and encounter the same attitude. :-(

[Gemini]

I only got diagnosed last year, and I had kind of assumed that people would have the same sensitivity to gluten, if they had celiac disease. It's only been over the last few months, when I've been talking to other celiac folk in person, that I realized that a lot of other people do not seem to have to do what I'm doing.

I was following all the advice: scoured out my pans that were stainless steel, chucked the ones that were non-stick and scratched. Got rid of wood cooking implements or sanded them down, got rid of the plastics that I'd used with gluten, etc... We have a gluten free house, at the moment, from the soaps to the foods. I figured this was standard. I'd never shown ANY gut symptoms with celiac disease before, so I wasn't exactly expecting to have any after I went off gluten. That's one of the reasons I figured I'd be really good: if I can't tell if I've been glutened, I'd better be extra careful, yeah?

But now I've had a lot of people pooh-pooh the idea. I didn't really need to get rid of the pans - they'd used them and had no reaction whatsoever, or they'd eaten food made next to someone using flour, with no ill effects. Or they'd had foods that didn't say 'gluten-free' but simply didn't use gluten ingredients. And these were folks who HAD gut reactions to gluten.

So I tried this. I still had some of the pans lying around, so I used one. And now, it turns out, I have gut symptoms. I was so vilely ill, for days. Awful. I tried a different non-stick pan, thinking maybe it was something with the food, and had the same reaction. Same thing for eating a food that had no gluten ingredients, but wasn't specifically 'gluten free.'

So, I have 2 questions:

1. Do we celiacs really have such a wide range of sensitivity to gluten?

2. If we do, have any of you had to talk about it with other celiac disease folks who are LESS sensitive than you? Had any problems seeing eye to eye? How do you deal with it?

I was chatting with another gal with celiac disease, thinking it would be nice to be in a gluten-free-friendly discussion and it was almost MORE stressful. She wasn't as careful as I have to be, and was more aggressive in telling me that I was going way over the top, didn't have to worry about 'this and that,' etc...

But I know, from painful experience now, that I DO have to be this careful. Boiling peeled carrots in a pot of water doesn't leave a lot of room for contamination except from the scratched non-stick surface of the pot.

I suppose I'm feeling a little down about it. It's hard enough having to cope with family and friends who are trying to help, but still think you have to be 'wrong' about how you can get gluten. That you're, frankly, a bit of a nut now. It felt almost worse to talk with someone, when we have something that we could connect on, and encounter the same attitude. :-(

Welcome to the club!

It can be very hard at first dealing with Celiac related issues but, with time, you'll realize that the only person you have to worry about is yourself. I would recommend reading Dr. Peter Green's book entitled:

Celiac Disease: The Hidden Epidemic because the most important thing you can ever do is learn how this disease process works so you will know the right and wrong way of living gluten-free successfully.

To answer some of your questions....I am not really sure whether people have varying levels of sensitivity. As you heal and clean your body of this toxin, you will find you will become more sensitive to gluten exposure overall. This may be from the fact that once you rid yourself of it and feel better, you now will actually feel what it is doing to your body. You have a better reference of what healthy is. Plus, even those who say they were asymptomatic doesn't mean they are less sensitive. Their villi will still flatten the same as those who have massive GI issues.

I have been gluten-free 5 years and when first diagnosed, it seemed I had no problem with shared line foods that were labeled gluten-free. I was an end stage Celiac and 1 week away from having a feeding tube installed so that is how sick I was. I did fantastic on the diet and had a fairly fast turn around. I also was very strict about things so was not getting glutened on a regular basis at all. Fast forward 5 years and now I seem to not feel so good from some shared line foods....ones that never bothered me.

I have only one other food issue and that's with dairy so know soy and the other allergens are not an issue. But I can feel the most minute amounts of gluten now whereas when first diagnosed, it wasn't as much of a problem. You will find adjustments may have to be made as time goes on.

I replaced some of my pots and pans but not all needed to be. I use Le Creuset cookware and the ones that were in good shape as far as the enamelware was concerned, I kept. I use mainly stainless and coated cast iron so didn't have to throw away/replace too much. The wooden spoons went and so did any old plastic stuff. Use common sense and it seems you did.

One area I think is not as important, depending upon your habits, is topical products. I do not screen for gluten in anything but eye drops, lip stuff and hand cream. Gluten cannot be absorbed through the skin as the molecule is too large and I think that 100% correct. I was diagnosed via blood work and I failed all the tests with huge numbers so having repeat blood work is a good indicator for me of gluten exposure. If you are a hair chewer or put your hands in your mouth a lot, you may have to go entirely gluten-free but I have not had to. My latest blood work was fantastic so know this works for me. It may not work for others. It's a choice issue but you have to look at what your habits are and make a decision based on what you are comfortable with.

Lastly, I have had the "eye roll" from my freakin' family members when I tried to explain to the waiter that I needed them to pan sear my food in a clean pan and not slap it on the grill unless they cleaned it first. Thought I would be nice and give them the option of not having to clean the grill. At first, I was BS that they, my flesh and blood, would do that to me but over time, my attitude has changed. These are the same people who I suspect have a problem but refuse to deal with it or get tested. My attitude is such that now when they whine about their health problems which, funny enough, are symptoms of Celiac Disease, I show little to no sympathy. I look right at them and say that when they smarten up and stop eating gluten, maybe they will feel better. They get as annoyed at me now as when I let them annoy me in the beginning.

I guess you have to grow a thicker skin, over time, and not let what others say bother you as much. When your health returns fully and you feel better than everyone else that you know, it really goes a long way to making what they say roll right off. You'll get there and kudo's to you for doing things right from the beginning.....you'll never regret it!

[ciavyn]

Don't get down about it! We are all different, and some people accept some of their symptoms in order to avoid changing. That is on them, and their consequences.

I bought new pans, I don't eat things that have even touched gluteny items, and I'm pretty anal about ingredients. Not as anal as some on these boards, but at this point, I don't have to be. But if you need to to feel better...who's to argue with you? It's your body and your health.

At the same time, I refuse to stop living life. I'm going to get glutened sometimes, despite my best efforts. I'm working hard to avoid it, but now and again it's going to happen. So be it. But all in all, life is good on this road.

[tictax707]

I think that Gemini's post was fantastic. For my answers to your two questions I would say the following:

1. I think it is possible for celiacs to have different manifestations of the symptoms, which would lead to one calling oneself sensitive or not sensitive. I think that symptoms are actually kind of subjective depending on how in tune you are with your body. Even so, I have read posts here where people describe their symptoms and what happens to them, and some are uncomfortable while others are bedridden. That says to me it's not entirely just how you perceive your body's reactions. The one thing that I think that is harder to tell is the connection between the symptoms that you feel and the damage that actually occurs in your body. I don't necessarily think that those that feel worse have more damage from a gluten incident, or that those that don't feel bad have less. There was a study done using a drug from Alba Therapeutics essentially looking at whether or not their drug could help protect against damage caused by "accidental" exposure to gluten (not like eating a gluten diet or anything). Ultimately I think they showed success in muting the immune response but patients did not report any improvements in symptoms associated with eating gluten. This does sort of boggle my mind a bit and let us know that the association between symptoms and damage is not all that clear. And thank you so so much to all who volunteered for that study because you could not pay me a million dollars to willingly ingest gluten.

2. I really don't come across many celiacs in person, but I have come across people who talk about how they "cheat." I am horrified and just feel sorry that they are harming themselves to such an extent. Nobody has ever told me that I should be less vigilant about anything... If they did I would certainly ignore them and keep doing my own thing. It does seem to be about a personal comfort level... Stick to your guns on what works for you - even if it seems nuts to someone else!

[Skylark]

Welcome to the club!

I have been gluten-free 5 years and when first diagnosed, it seemed I had no problem with shared line foods that were labeled gluten-free. I was an end stage Celiac and 1 week away from having a feeding tube installed so that is how sick I was. I did fantastic on the diet and had a fairly fast turn around. I also was very strict about things so was not getting glutened on a regular basis at all. Fast forward 5 years and now I seem to not feel so good from some shared line foods....ones that never bothered me.

Wild. I'm on the same timeline, having to suddenly pay attention to shared lines and trace gluten after 5 years gluten-free. I wasn't as sick as you, but gluten intolerant enough that I laughed at my doctor when he suggested I do a month-long wheat challenge for blood work and a clear diagnosis.

When you read the clinical studies, most celiacs don't react to 10mg/day of gluten. Only a few even report diarrhea. It takes more like 50-100 mg/day to trigger villous atrophy in most folks.

It seems to me like there is more going on in some of our bodies then only celiac disease. A lot of people around here (me included) are sensitive beyond what is observed in studies of biopsy-proven celiacs. You can't make any conclusions about how common hypersensitivity is because we're a self-selected group. People who don't notice occasional low levels of gluten aren't as likely to seek out an internet forum for help.

Anyway, listen to your body. Do what you must to stay healthy, even if it's eliminating traces of gluten that might not bother other celiacs. If you're getting the eyeroll, just explain that you react to trace gluten sort of like an allergy. (Which it very well may be.)

[ksymonds84]

I have been gluten free for almost 3 years now. I was very diligent the first couple of years with pans ect. I still am very careful but have relaxed a lot. With every Celiac you will hear different symptoms and levels of sensitivity ect. I have a celiac friend who if accidentally gets croutons on her salad, she will just pick them off and eat the same salad. Granted when she gets glutened she only suffers a backache. There's no way I could get away with that! As a previous poster said, do what is right for you and with time you will settle comfortably with what is normal for you.

[Pac]

I was chatting with another gal with celiac disease, thinking it would be nice to be in a gluten-free-friendly discussion and it was almost MORE stressful. She wasn't as careful as I have to be, and was more aggressive in telling me that I was going way over the top, didn't have to worry about 'this and that,' etc...

I have exactly the same experience with some celiacs and their friends. Just ignore those opinions. It's your body and your choice how strict your diet needs to be. I need to be on super-paranoid gluten-free diet in order not to get sick and honestly I prefer to be paranoid rather than sick. Most people who don't know about celiac/gluten intolerance are able to respect my choice, even if they think I'm over-reacting. But some celiacs who 'know' that a little bit of gluten won't hurt me react as if it was an unacceptable sin to be that strict.

Scientific studies find a wide range of sensitivity levels in both celiac and allergy, so less-sensitive celiacs don't have to be people ignorant of their symptoms but simply the lucky ones who aren't as sensitive as others.

Before the gluten-free diet, everybody was telling me that my symptoms are normal - everybody gets tired, everybody has headaches, everybody is depressed sometimes, everybody gets sick sometimes, etc. 'Suddenly' I don't get nothing near as tired as I was when I felt good before, I have no headaches, no asthma, ekzema, allergies, I don't get tired and sleepy after each meal and I'm off all the medication and vitamin supplements while others are whining about their backaches, migrains and side-effects of their meds. I always needed much more sleep than others, now my boyfriend complains about my getting up too early. I don't care what others think of it, I will keep my diet as strict as it's needed to feel as GREAT as I do now.

[AlysounRI]

Hi:

I've got a friend who is made sick by red meat.

Cannot stomach it.

Gives her intestinal problems and stomach problems.

It also matters very much whether a spoon that was used to stir something with meat in it gets used for veggies.

That little contact will make her sick.

It does to her what gluten does to me!!

I respect her intolerances and she respects mine and we meet in the middle somewhere.

And it mostly works out

How do you explain that to someone without them denigrating your condition? It's just as hard as explaining how careful you have to be with gluten.

There are other people who have to be just as careful with other substances.

Don't let the celiac or the gluten intolerance run your life but always remember that a lot of your symptoms cleared up on the gluten-free diet and think of how utterly liberating that is!! Then remember it's YOUR body and YOUR health, and if you don't look after it, no one else will. And remember what it was like to be so sick. And know that you are never knowingly going to go back there again.

~Allison

[Traveller]

So, I have 2 questions:

1. Do we celiacs really have such a wide range of sensitivity to gluten?

2. If we do, have any of you had to talk about it with other celiac disease folks who are LESS sensitive than you? Had any problems seeing eye to eye? How do you deal with it?

I don't think medical science understands the body's reaction to gluten sufficiently to answer your questions.

What science apparently does know is that the reaction to gluten isn't entirely in the gut. The result of the test spoken of above where a drug was used to regulate zonulin is entirely consistent with the view that the reaction isn't entirely in the gut. The Lancet recently indicated that a neurological reaction may be entirely divorced from a gut reaction when it addressed neurological reactions and said "...the concept of extraintestinal presentations without enteropathy has only recently become accepted." Other studies show a correlation between stuttering and gluten, point to damage in the part of the brain that normally controls speech and the problem area, and speculate that gluten damages that area of the brain.

Given that different people's brains are so different, it's entirely possible that different people have different reactions because the neurological manifestations are different. It's also entirely possible that the differing sensitivity celiacs and the gluten intolerant feel over time is a function of the brain healing. But that is speculation. Science doesn't have the answer to why celiacs and the gluten intolerant have different sensitivities.

Note: the Lancet article referred to above is entitled "Gluten Sensitivity: From Gut to Brain". It's a good read. Apparently TG2 is the marker for an autoimmune reaction to gluten in the gut, TG3 for the skin (DH), and TG6 for the brain. All are autoimmune reactions, but have different markers for different areas of the body.

[Jestgar]

So, I have 2 questions:

1. Do we celiacs really have such a wide range of sensitivity to gluten?

2. If we do, have any of you had to talk about it with other celiac disease folks who are LESS sensitive than you? Had any problems seeing eye to eye? How do you deal with it?

People react differently to different stimuli. Why is one person in bed for a week with a 'cold' virus and one person has only the sniffles?

If someone disses my actions, I always wonder if it's because they know they should be doing the same thing but are unwilling to admit it. Why would anyone feel they have the right to judge your actions, unless they were trying to justify their own?

[dilettantesteph]

I am very sensitive. I have pretty well cut out all processed foods. I also have to be careful about food grown on straw and coatings used on produce. I wash everything else very carefully. The steps I have to take to be gluten free seem crazy. I think that I am to an average celiac, what an average celiac is to a person who does not have celiac disease. It was very difficult in the beginning when I was first figuring it out. I would think that I had reacted to something and then I would read about how it was safe etc. Once I learned about different levels of sensitivity to trace gluten things started making more sense. It took quite awhile to get my diet figured out, but I am finally having more and more healthy days.

[Black Sheep]

Um...non-stick pans and plastic utensils? I knew that gluten couldn't be gotten out of the wooden stuff, but non-stick and plastic? Oh no...do all celiacs have to throw them away, or only the folks who are really sensitive? But then I guess this goes back to how much damage is really going on despite a person's sensitivity. Oh, great.

I had the funny looks and rolled eyes from my family on Mother's Day. I had explained to the restaurant's co-owner/waitress about gluten (I was having the prime rib dinner), and told her I absolutely couldn't have the bread that came with it, croutons on the salad, etc. We discussed together the different dressing options, and I explained to her that I already knew from a previous visit that their Ranch contained gluten, as one of their other waitresses (who doesn't eat gluten) had checked. I thought she understood. So, here comes my prime rib...beautiful....except for the 4 huge onion rings, artfully piled on the top. I just sort of did this for a moment and stared, before explaining that the menu said nothing about the food coming with onion rings, if it had, I would have certainly asked that none be put on mine! And that onion rings, being breaded, contain GLUTEN! She apologized profusely and took it back, saying she'd take care of it. My family was saying things like, "So what, you didn't have to eat them--just take them off," and "They can't possibly hurt you just because they touched the meat!" I tried to explain. Then the lady returned with what I thought was another plate of food, and enthusiastically informed me that the onion rings had been taken off! Yay! Again I sort of went, . Like, are you kidding me? Once again, I patiently explained the facts to her. She looked kind of bummed out (she really is a dear, sweet, lady who only wants to help people, and I think she really was sad that she "let me down" or something) and said that they'd cook me a whole new meal, which they did, and I was fine (as far as I know!). But again I got those comments from my family, a bit of eye-rolling, but not in a mean way, and we all just laughed it off and got on with our meals.

Well, they got on with theirs. By the time I got my new meal they were all done. And btw, we went at 3:30 when there was almost no one in the place.

[juppygirl]

I am super sensitive and get glutened even when I'm trying to be ultra careful.... I had to get all new stuff - you are not paranoid at all and ignore others who say you are - my Mum thinks I am!! I have extra reason to be 'good' because I also have dermatitis Herpetiformis head to foot if I get glutened as well as tummy trouble. Its not worth the risk

[tictax707]

Um...non-stick pans and plastic utensils? I knew that gluten couldn't be gotten out of the wooden stuff, but non-stick and plastic? Oh no...do all celiacs have to throw them away, or only the folks who are really sensitive? But then I guess this goes back to how much damage is really going on despite a person's sensitivity. Oh, great.

I had the funny looks and rolled eyes from my family on Mother's Day. I had explained to the restaurant's co-owner/waitress about gluten (I was having the prime rib dinner), and told her I absolutely couldn't have the bread that came with it, croutons on the salad, etc. We discussed together the different dressing options, and I explained to her that I already knew from a previous visit that their Ranch contained gluten, as one of their other waitresses (who doesn't eat gluten) had checked. I thought she understood. So, here comes my prime rib...beautiful....except for the 4 huge onion rings, artfully piled on the top. I just sort of did this for a moment and stared, before explaining that the menu said nothing about the food coming with onion rings, if it had, I would have certainly asked that none be put on mine! And that onion rings, being breaded, contain GLUTEN! She apologized profusely and took it back, saying she'd take care of it. My family was saying things like, "So what, you didn't have to eat them--just take them off," and "They can't possibly hurt you just because they touched the meat!" I tried to explain. Then the lady returned with what I thought was another plate of food, and enthusiastically informed me that the onion rings had been taken off! Yay! Again I sort of went, . Like, are you kidding me? Once again, I patiently explained the facts to her. She looked kind of bummed out (she really is a dear, sweet, lady who only wants to help people, and I think she really was sad that she "let me down" or something) and said that they'd cook me a whole new meal, which they did, and I was fine (as far as I know!). But again I got those comments from my family, a bit of eye-rolling, but not in a mean way, and we all just laughed it off and got on with our meals.

Well, they got on with theirs. By the time I got my new meal they were all done. And btw, we went at 3:30 when there was almost no one in the place.

I had almost the exact same thing happen to me at Claimjumper. It should SAY on the menu that the dish comes with onion rings. It didn't when it happened to me either. I've started using other utensils on the table to alter the food if I have to send it back, that way I know whether or not I am getting the same dish with the gluten removed or an entirely new dish. So, I feel your pain. (sigh)

[K8ling]

Knock on wood, I am not SUPER sensitive, but I am sensitive enough that we went and got a new toaster and cutting board, and if something gluteny touches my food I will dump it and get fresh food. It's very different for me than other people (although I have had a slight upset stomach all week and i am 99% sure that my husband glutened by kissing...like *blushes* REALLY kissing me when he walked in the door one day). Still, that being said, I have met ppl who cant even breathe flour in, the degree of sensitivity is just that great.

I say whatever works for you works for you. If I have to dump my revereware because it's been compromised, I will do it (I will cry, but I will do it).

[DownWithGluten]

I have a celiac friend who if accidentally gets croutons on her salad, she will just pick them off and eat the same salad. Granted when she gets glutened she only suffers a backache.

Haha, maybe that's the difference. I'm not one that just gets a foggy brain or stomache ache...I get what I call "gluten attacks" that I hate with a passion. So I don't want to take the risk.

At the end of the day, I'm not sure how sensitive I am. Because I am afraid to risk. I do go to Chipotle and never ask them to change gloves (even if they touch the burritos before mine) and have not gotten sick.

So...maybe it takes more solid ingestion of gluten for me to have an "attack." But generally I don't want to risk it. I wouldn't dream of just picking croutons off a salad. Maybe I wouldn't react...but I don't want to find out.

Plus, even if I don't react, it might still be getting in. Which, I know...means I should probably be more careful with Chipotle

[Black Sheep]

I've started using other utensils on the table to alter the food if I have to send it back, that way I know whether or not I am getting the same dish with the gluten removed or an entirely new dish.

That's a great idea! My dad even made a joke about that when I sent it back, too.

[Shannonlass]

I am a recently diagnosed celiac so I am still trying to find my way with the diet and recognise when I have possibly been glutened. For me I used to think my most reliable indicator is flatulence and bowel movements but now I am not so sure. I eat gluten-free cereal for breakfast and for lunch I have a fruit salad and plain yogurt. The same thing 5 days a week yet some days I get flatulence in the hours after lunch. I am thinking now that it's a reaction to one of the fruits as there are different ones in my lunch every day. Yesterday I had the usual and I had mild diarrhea in the afternoon. Only things I had that were different were giant chocolate buttons (that are definitely gluten-free) and a full orange (which I would rarely have). I am thinking it was the orange.

I went out for dinner last night and I suspect I might have gotten gluten.Just have doubts that the staff TRULY understood my needs. 15 hours later no pains, no cramping, nothing. Slightly loose bowels (but that seems to happen me when I have alcohol anyway!)I think I am going to have to start monitoring my reactions more closely. I REALLY want to get this right.

[Skylark]

Some people do not absorb fructose well and they get flatulence and sometimes cramping or diarrhea from it. It's called fructose malabsorption and is very much like lactose intolerance. The flatulence and cramping is from intestinal bacteria using the fructose instead of your body and releasing hydrogen. You might try eating salad greens a couple days instead of fruit. There's hardly any fructose in lettuce.

[elle's mom]

Other studies show a correlation between stuttering and gluten, point to damage in the part of the brain that normally controls speech and the problem area, and speculate that gluten damages that area of the brain.

Could you point me to this reference of "other studies"? I have been looking for something like this, thanks.

[psipsina]

Um...non-stick pans and plastic utensils? I knew that gluten couldn't be gotten out of the wooden stuff, but non-stick and plastic? Oh no...do all celiacs have to throw them away, or only the folks who are really sensitive? But then I guess this goes back to how much damage is really going on despite a person's sensitivity. Oh, great.

I had the funny looks and rolled eyes from my family on Mother's Day. I had explained to the restaurant's co-owner/waitress about gluten (I was having the prime rib dinner), and told her I absolutely couldn't have the bread that came with it, croutons on the salad, etc. We discussed together the different dressing options, and I explained to her that I already knew from a previous visit that their Ranch contained gluten, as one of their other waitresses (who doesn't eat gluten) had checked. I thought she understood. So, here comes my prime rib...beautiful....except for the 4 huge onion rings, artfully piled on the top. I just sort of did this for a moment and stared, before explaining that the menu said nothing about the food coming with onion rings, if it had, I would have certainly asked that none be put on mine! And that onion rings, being breaded, contain GLUTEN! She apologized profusely and took it back, saying she'd take care of it. My family was saying things like, "So what, you didn't have to eat them--just take them off," and "They can't possibly hurt you just because they touched the meat!" I tried to explain. Then the lady returned with what I thought was another plate of food, and enthusiastically informed me that the onion rings had been taken off! Yay! Again I sort of went, . Like, are you kidding me? Once again, I patiently explained the facts to her. She looked kind of bummed out (she really is a dear, sweet, lady who only wants to help people, and I think she really was sad that she "let me down" or something) and said that they'd cook me a whole new meal, which they did, and I was fine (as far as I know!). But again I got those comments from my family, a bit of eye-rolling, but not in a mean way, and we all just laughed it off and got on with our meals.

Well, they got on with theirs. By the time I got my new meal they were all done. And btw, we went at 3:30 when there was almost no one in the place.

I had an awful experience out with a friends family. I was trying to explain basics to this poor waiter at a non-gluten free restaurant, and it was his second day waiting tables And he's all panicked and comes back confused after talking to his manager. So I'm trying to clarify what types of cooking is ok for my meat and veg and my friends dad, who is another physician, starts saying "oh its not that big a deal if she gets some gluten, she'll just have an upset stomach, its not like she's going to die". Uhhhh, yeah buddy, I'll only feel awful for 1-2 weeks and my hand joints will all swell up . . . no biggie at all. I guess I expect a little ignorance from regular people but it made me made that he was so sure of himself because he's a physician and clearly didn't know enough about celiac to be that sure of himself!!!

BTW I'm super super sensitive and react to shared lines, shared cookware etc. I actually think its a good thing, I feel like my "alarm system" is better.

[Black Sheep]

So I'm trying to clarify what types of cooking is ok for my meat and veg and my friends dad, who is another physician, starts saying "oh its not that big a deal if she gets some gluten, she'll just have an upset stomach, its not like she's going to die".

Un. be. lievable. Some drs. can be soooo arrogant, and think they know all there is to know when it comes to medical issues simply because....well I think pretty much what it boils down to is, "I'm a dr. and you're not!" Sheesh. I hope you set the waiter straight on that one.

[DownWithGluten]

I had an awful experience out with a friends family. I was trying to explain basics to this poor waiter at a non-gluten free restaurant, and it was his second day waiting tables And he's all panicked and comes back confused after talking to his manager. So I'm trying to clarify what types of cooking is ok for my meat and veg and my friends dad, who is another physician, starts saying "oh its not that big a deal if she gets some gluten, she'll just have an upset stomach, its not like she's going to die". Uhhhh, yeah buddy, I'll only feel awful for 1-2 weeks and my hand joints will all swell up . . . no biggie at all. I guess I expect a little ignorance from regular people but it made me made that he was so sure of himself because he's a physician and clearly didn't know enough about celiac to be that sure of himself!!!

BTW I'm super super sensitive and react to shared lines, shared cookware etc. I actually think its a good thing, I feel like my "alarm system" is better.

Um, that's pretty bad. Because who's the waiter going to believe at the end of the day - you a 'lay' person, or an almighty doctor? That was just uncalled for for that doc to undermine you like that. No, it's not like a peanut allergy in that I'll DIE and have my throat swell up if I eat gluten. But my symptoms are wretched and if I can help it, I do NOT want that.

[Black Sheep]

So back on page 1 at the beginning of the thread, there was talk about ditching non-stick pans and plastic utensils. Which made me panic lol, and I asked about that but no one really said anything. So, does anyone know for an undisputed fact that gluten cannot be gotten out of these things, or are those of you who've gotten rid of them just trying to be extra careful, because you're extra sensitive?

Or maybe I should ask---are there any of you who did not get rid of your non-stick and plastic, and you're doing just fine?

[kareng]

So back on page 1 at the beginning of the thread, there was talk about ditching non-stick pans and plastic utensils. Which made me panic lol, and I asked about that but no one really said anything. So, does anyone know for an undisputed fact that gluten cannot be gotten out of these things, or are those of you who've gotten rid of them just trying to be extra careful, because you're extra sensitive?

Or maybe I should ask---are there any of you who did not get rid of your non-stick and plastic, and you're doing just fine?

The point of getting rid of the non-stick or plastic is that they get scratches that might harbor crumbs and germs. Also, once the non-stick has scratches, little bits of teflon are flaking off into your food. You can find a lot of info on the web about that.

I can't believe the people who were actually diagnosed as Celiac who I see still eating gluten. We had pasta at a school banquet. I brought some gluten-free with a nice gluten-free turkey sausage & melted cheeses on top. I made enough for the other person I knew was diagnosed but she said she would just eat a little of the regular pasta. WTF?