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Chopper

Glutened By Vapors

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I think the use of the terms psychosomatic and psychological were perhaps not the best to use.... your body reacted as if it had been glutened even though gluten did not acutally enter your body. This is not in your mind it has more to do with a complex system of sensory neurons. As to what was the stimuli that caused your body to react this way it could have been the vapors. But something did cause your body to detect a presence of gluten or wheat and so it reacted. The body can really be a difficult thing to understand at times.

Well thought out words, well seasoned with salt. Thank you very much!

The presentation of the posters here to portray me as simply being wrong or reacting psychosomatically did NOT sit well with me. I emailed my question to six celiac centers and/or physicians. The response I'm receiving does NOT agree with how the posters here have presented the situation. I'm not a 'told you so' kind of person, so I will simply recommend that anyone experiencing the same thing that I have should also consult with a professional and not a forum. Simply google "celiac research facilities physicians" and start emailing.

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I am sure no one here meant to upset you or deny your symptoms. They are just trying to provide correct information regarding Celiacs and/or gluten sensitivity.

This is exactly the case. I did not deny her symptoms at all.

I have reread this thread and no one called her a "psycho" as she has stated.

I tried to explain what the word psychosomatic meant in terms of the bodily response (it's the same explanation as yours) and I tried to provide a possible and reasonable explanation for what may have happened.

If Chopper has received different information regarding the presence of gluten in steam and vapors from 6 major celiac centers that clarifies this, I, personally, would be very grateful to see it.

I love reading research and learning more about the complexities of this disease. I tried to find information about gluten molecules in vapors, but came up empty.

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Chopper, I'm not gonna beat a dead horse here but if you do have evidence to support your theory, I wouldn't consider it an "I told you so", rather information that would benefit all of us. I'd be very interested to read what you have.

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Well thought out words, well seasoned with salt. Thank you very much!

The presentation of the posters here to portray me as simply being wrong or reacting psychosomatically did NOT sit well with me. I emailed my question to six celiac centers and/or physicians. The response I'm receiving does NOT agree with how the posters here have presented the situation. I'm not a 'told you so' kind of person, so I will simply recommend that anyone experiencing the same thing that I have should also consult with a professional and not a forum. Simply google "celiac research facilities physicians" and start emailing.

I am sorry that you seem so offended by a completely normal occurrence that happens to many people...myself included. If I thought the term psychosomatic was so bad, I certainly wouldn't use it to describe my experience but I am not an overly sensitive person...just one who seeks out and learns the truth.

That seems to be the problem here more than anything else. If you are so convinced that forum information is so wrong, then why come here? You posted incorrect information about a Celiac reaction and then get all indignant when a number of well informed members of this forum try to correct your information, for the benefit of those new to this disease.

I, too, would like to see all the information from the 6 different Celiac centers and or physicians you contacted because apparently, they know something the rest of the Celiac experts don't. You can believe what you want, whether it's correct or not. Just don't come on here acting all offended when you don't like the responses you read. I don't sugar coat things.....there's too much of that going on already.

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Some of us react to smaller amounts of gluten than others. Some things that are considered to not be present at all can be present in very small amounts. I am a chemist and routinely do distillations. They are not 100.0000000% perfect. I get spectroscopic analysis of my products. There can be other things in there in small amounts, even things with much different boiling points.

As stated above. Trust your reactions. If something makes you sick, don't do it. You don't need to justify avoiding something that will make you ill.

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I don't know that there have been any studies on gluten particles specifically, but there have been studies on various allergens and whether particles are present in the air after processes such as boiling, frying, etc.... So far, the evidence is that there are enough particulates aerosolized by cooking processes that an allergic person can respond.

Again, this is looking at those with allergies, not Celiac Disease. However, allergies are a reaction to proteins, and gluten involves proteins, so I'm just looking at these as examples of whether or not proteins can become airborne by some process of cooking.

I'll list a couple examples. One is primarily industrial, so not as useful to this discussion. I include it merely because it briefly discusses the fact that aerosolization during the cooking process is a known issue. The second is a study with allergic individuals in a closed room where food was cooked. That may be more relevant.

This doesn't address any issues about quantities released into the air vs. quantities required for most Celiacs to react, but it does address the possibility of aerosolization.

http://www.clinicalmolecularallergy.com/content/7/1/4#B3

"Processing of a food, such as boiling, steaming, or frying, can also release significant quantities of particulates into the air. This aerosolization has also been identified as a potential high risk factor for sensitization by inhalation..."

http://www.ncbi.nlm.nih.gov/pubmed/12121190

From the Abstract:

"Subjects were exposed for 20 min to the aerosolized form of the allergen and the symptoms and the lung function were monitored. Aerosolization was achieved by cooking the food in a small room. Where possible challenges were double-blinded....The implicated foods were fish, chickpea, milk, egg or buckwheat...Our data demonstrates that, as in the case of other aeroallergens, inhaled food allergens can produce both early- and late-phase asthmatic responses..."

Oh, and Irishheart? Just because you mentioned feeling sick from strong perfumes.:-) Am I recalling right that you have issues with sulfites? If that's correct, you might be interested to know that a lot of sulfite sensitive folks react to perfumes. Some have severe reactions, but most I've spoken to say their reactions are mild, often headaches, dizziness or nausea.

I've heard a lot of anecdotal reports re: sulfites in perfumes, but the closest to a 'source' I've found is 'A Consumer's Dictionary of Cosmetic Ingredients,' which said that sodium metabisulfite is used as an antifermentative in perfumes, so maybe your reaction isn't as psychosomatic as you may have thought. :)

Shauna

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Oh, and Irishheart? Just because you mentioned feeling sick from strong perfumes.:-) Am I recalling right that you have issues with sulfites? If that's correct, you might be interested to know that a lot of sulfite sensitive folks react to perfumes. Some have severe reactions, but most I've spoken to say their reactions are mild, often headaches, dizziness or nausea.

Thanks for your thoughts, TH! :)

I did have a reaction to all kinds of strong odors when I was very ill from the celiac--before DX .(smoke, perfume, candles, gasoline, truck or bus exhaust....those kinds of things...and holy moly when a skunk came through the property :blink: ). I have noticed I am less sensitive than I used to be, which gives credence to the theory that healing the gut may relieve those chemical sensitivities many of us suffer? I recently tried wine again and I did not have a problem (yaay!!) so maybe sulfites are less of an issue as well.

From what I understand, consumption of food with sulfites is generally harmless, unless you suffer from severe asthma or do not have the particular enzymes necessary to break down sulfites in your body.

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[oh and Irishheart? Just because you mentioned feeling sick from strong perfumes.:-) Am I recalling right that you have issues with sulfites? If that's correct, you might be interested to know that a lot of sulfite sensitive folks react to perfumes. Some have severe reactions, but most I've spoken to say their reactions are mild, often headaches, dizziness or nausea.

I've heard a lot of anecdotal reports re: sulfites in perfumes, but the closest to a 'source' I've found is 'A Consumer's Dictionary of Cosmetic Ingredients,' which said that sodium metabisulfite is used as an antifermentative in perfumes, so maybe your reaction isn't as psychosomatic as you may have thought. :)

Shauna

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I would suggest that we don't know anything like as much as we need to about the way the body recognises and reacts to a substance which triggers an auto-immune response.

Just because there isn't actually "gluten" per se in steam or vapour doesn't mean the body might not recognise the smell or some kind of similarity with what it used to know as the evil gluten that triggered an almighty defense.

I too would be quite insulted at terms like "psychosomatic". I am fairly sure I react to the smell of toast for example. And I know perfectly well that this isn't because there are large gluten protein molecules floating around in the air!

Best wishes to all,

Carolyn

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I too would be quite insulted at terms like "psychosomatic". I am fairly sure I react to the smell of toast for example. And I know perfectly well that this isn't because there are large gluten protein molecules floating around in the air!

If you react to the smell of toast, and I would assume you mean wheat toast, then you most likely had a psychosomatic reaction. That's what happens with me around strong gluten smells. It happens for many different reasons to people and why anyone would be insulted is.....well..... :blink:

To the newly diagnosed and still in the learning process....do not fear the boiling pasta water! Just don't get it on your food!

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If you react to the smell of toast, and I would assume you mean wheat toast, then you most likely had a psychosomatic reaction. That's what happens with me around strong gluten smells. It happens for many different reasons to people and why anyone would be insulted is.....well..... :blink:

To the newly diagnosed and still in the learning process....do not fear the boiling pasta water! Just don't get it on your food!

No - the reason it isn't psychosomatic is that I don't react at the time - and indeed it's taken me ages to work out what I think the cause is. I react the next day - my system goes into overload and kicks everything out. And it's the same deal when sitting in a room with people eating sandwiches. If it were psychosomatic I would expect to feel ill when I were aware of being in a place of gluten. But actually that doesn't happen and it never occured to me that it might so it certainly wasn't something I was "expecting". I have had to try and work out why I keep getting a bad stomach - and have started to see a pattern of being exposed to (presumably) air-borne / smell of gluten triggers the previous day.

I have been ridiculously careful about avoiding gluten for a couple of years now and basically cook everything myself from scratch to avoid any potential for cross contamination. It's been extremely good for healing the gut, but I am with people who think they become more sensitive the more careful they are I have to say.

I have a degree in Experimental Psychology by the way, and I do know a lot about psychosomatic reactions, but this is not one of them!

Best wishes, Carolyn

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The body has many physiological responses, reflexes and defense mechanisms which are not always understood or even recognized. Physiological conditioned responses of the body are widely accepted due to Ivan Pavlov and his famous experiment of eliciting the secretion of the salivary glands in dogs by the ringing of a bell. Pavlov abandoned his former career and pursued a science one. He contributed to many areas of physiological and neurological science. He went on to perform experiments on digestion and eventually published "The Work of the Digestive Glands".

I mention Pavlov because it is interesting that both posters (Chopper and Carolynmay) had the same reaction of their digestive system emptying out the next day. And so possibly it could have been a conditioned bodily response...the body detected wheat in the nearby environment and reacted just as it would have to the actual ingestion of wheat even though wheat was not actually ingested.

If the response was truly due to a physiological cause such as a conditioned response then psychosomatic would not be the correct term to use. On the other hand, if a physiological conditioned response was the cause then "being glutened" would not be the correct term to use as a true Celiac reaction did not occur. Perhaps it would be better to say you had a "Celiac-like reaction".

I believe it is fairly common and usual for people to become upset in response to someone mentioning their physical symptoms are psychosomatic. And so I don't disregard your upsetment but ask you to let it pass and move forward. Upsetment only distracts you and hinders your ability to perform well and comprehend and understand information. Better to focus on your own well-being, identifying the situations that caused you a reaction and planning on how to avoid them in the future.

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I think we can all agree on this: if something makes you feel lousy, don't do it anymore.

I think we can all agree on this too: just because this reaction happened to the OP, it doesn't mean it will happen to all of us.

We could speculate all day long what caused her to feel ill, but we will never know the answer.

In regards to the technology in labs today that are available to detect small amounts of anything that may be present, well, I agree with that as well. The difficult part of all of this is---the world we live in is full of contaminants. If we really knew what was in our food and drink, we'd probably end up not eating or drinking anything. :ph34r:

At some point, we have to decide what works for us individually, based on the current understanding of gluten and how it affects the small intestine in a celiac--and how it affects the whole body--- as a result. I never could have imagined what this thing did to my body and brain.

With varying levels of sensitivity to gluten, this becomes a personal choice: what makes me feel bad should be avoided, but it does not mean everyone else will feel this way.

Case in point: I rarely eat at restaurants, but I did a few weeks ago as I was traveling and meeting up with family members.

3 of us are gluten-free. We all ordered the same dinner from the same gluten-free menu (beef tips, potato, broccoli) and I am the only one who got sick and had symptoms for 3 weeks.

Lucky me? <_< No, that's just my system--still sick from celiac and a gut still on the mend. Those are foods I eat regularly at home without issues. My doc's words? "Wow, you are very sensitive to trace cc".

Yes, thanks, Dr. G---I got that. :)

But, I do not rush to post something like : "beef tips, potato and broccoli" got me! as a result of my experience, nor do I say "you should not eat out --ever."

Because neither of those statements are universally applicable to everyone else that reads this forum, even those of us who are very sensitive.

The OP believes the gluten vapors got her. And that's fine!

But, if she emphatically states that leading celiac centers and doctors say "it can happen", it would be good of her to share this information with the rest of us sensitive types who have researched this thing to death and want to learn all we can.

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I got sick once from sitting in a pizza place with the guy tossing pizza in the air. Throwing flour on the board and then patting it out and tossing the dough up and all that fancy - schmancy pizzza stuff they do. I suppose it was the flour in the air thing that got me. I don't get sick walking through the bakery aisle at a grocery store though.

I did a little distillation when I was younger. Distilled spirits are not just alcohol. They contain flavor essences also. If you boil your mixture at just high enough temperature to get only the alcohol boiling off, you end up with grain alcohol. Not many people like to drink pure grain alcohol. So the common process is to raise the boiling temperature near the end of the cycle to get some of the flavorings airborne in the steam. That way you get whiskey or whatever you are making instead of just pure alcohol. With vodka they try to keep most of the flavorings out though. So I think that makes it clear that other things can be carried in steam, not just water vapor. Otherwise we would all have nothing but flavorless , plain alcohol beverages to drink. Or beer or wine, which aren't distilled.

I am not saying gluten can be carried in steam, but other things certainly can be. Maybe gluten is too heavy to be carried by steam, I don't know. But other things like flavorings are not.

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After reading all of the comments and being a member on this board for a few years I have a couple of comments for this post.

1. From my understanding Chopper was venting about their glutening and just wanted some support. This is a support group.

2. I understand why people reacted the way they did. If newbies come on this site and read vapors glutened someone they are going to assume the same can happen with them.

3. I myself know that I have over reacted to situations and have felt like I have been glutened but I wasnt.

4. I can see why Chopper felt attacked on this board.

Please remember people have feelings and even if they are not relevant to you they are to the poster.

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After reading all of the comments and being a member on this board for a few years I have a couple of comments for this post.

1. From my understanding Chopper was venting about their glutening and just wanted some support. This is a support group.

2. I understand why people reacted the way they did. If newbies come on this site and read vapors glutened someone they are going to assume the same can happen with them.

3. I myself know that I have over reacted to situations and have felt like I have been glutened but I wasnt.

4. I can see why Chopper felt attacked on this board.

Please remember people have feelings and even if they are not relevant to you they are to the poster.

Your analysis tries to look at all sides and is very gracious.

Number 3 may well be the most telling--as it supports what many have said to her.

Number 2 is the primary reason why many members responded.

The members acknowledged her reactions as being real.

The members offered rational reasons for why she may feel that way (CC from gluten exposure )

and the members gave her our best advice IN SUPPORT.

That's it.

She is the one who became defensive and lashed out saying someone called her psycho (no one said anything of the kind) and then, she said she can prove it is possible with evidence from leading celiac doctors. (she has not returned)

With all due respect, no one "attacked" chopper, however-- and using that word seems unfair and inflammatory.

IMHO

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I am glad I dont use this site for support anymore... Some come off as rude these days and not helpful.

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Sorry you feel that way. :(

I agree with you completely! Some people do come off as rude in their delivery and we do try to keep that in check.

But I guess I just do not agree with you that the OP was attacked.

That is a strong word ---and if it had happened, I would have been one of the first ones to have stepped in.

This is just my humble opinion, of course and is offered with respect for yours as well.

Best wishes,

IH

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I am glad I dont use this site for support anymore... Some come off as rude these days and not helpful.

There will always be a certain segment of the population who, unfortunately, are offended by everything. You can choose whether to come here or not but your feelings are in the VAST minority. I am the one who you posted about because my comment of it possibly being a psychosomatic reaction was taken entirely out of context by the overly sensitive (and I'm not referring to gluten here). No one was rude or needs to apologize to the OP. I always strive to post accurate information so those in need of a Celiac education will get the correct info. That is much more important than not posting something because it might offend someone.

After doing this for almost 8 years (being Celiac, that is), good luck finding another site that has more compassionate, caring and smart Celiacs than this site does.

Not going to happen. Many have inaccurate and false information on the Celiac lifestyle. This one rocks so the choice is yours.

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I just wanted to point out that msmini14 never said that anyone on this board "attacked" anyone.

She just said that she could see why the OP might have felt attacked.

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Really? None of us can know how someone actually feels

and you are just playing semantics here.

I have tried to help everyone see all sides and many of us have tried to help the OP figure out what reasonably may have made her ill so she could avoid it in the future. That's what motivates me to reply in threads, to try and help, not to attack or argue over how we "think" someone "may feel".

My advice is almost always: "if it makes you feel bad, don't do it anymore."

But, as another member said earlier in the thread (and I wish I had just exited when she did because it was very wise),

I tried my best ---and now, I'm done here. No point in belaboring it.

Best wishes to all.

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Gemini and Irishheart. I did not respond to this post to stir up everyone

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Irishheart. I did not respond to this post to stir up everyone’s opinions. I simply felt the need to stand up for someone who had feelings. She had valid feelings about having issues with the vapors. Who knows, maybe being around that aroma all day caused her to have a headache the following day. Regardless if she was right or wrong they were her feelings.

Please don’t forget how it was for you going gluten-free years ago. Sometimes we have gotten so sick we grasp for straws and try to figure out what caused it.

I ALWAYS stand up for people on this site. :o

Do you even know me?

Then you would know this for sure!

I validated her feelings, hon...over and over.

I said she had "real symptoms".. ..didn't I?

Please read what I said carefully.

The very reason why we are sick and grasp for "straws"-- is the very reason why we come to this site. TO GET REAL ANSWERS.

This is what she was given.

I have given her all the possible reasons why it happened so she could avoid it in the future and spare her this misery.

And to answer you--NO, I NEVER forget what this thing did to me because I suffer the consequences every single day.

I said I "was done" here on this thread, but when you question me and what I do on here because I DO care so much, well, I had to respond.

You also said:

"And like I said before any newbie reading this post could think, “I can be affected by vapors” so again I understand why people said this was a mental issue."

I am not quite sure what you mean here, hon so, please clarify ---

because NO ONE said it was a "mental issue".

This whole discussion has become negative and controversial--when all anyone tried to do was help.

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My husband took up a new hobby, brewing beer. After he made it two different times, the next day I got sick. (I'm always sick the next day when I'm glutened.) He didn't believe me when I blamed it on the boiling brew. I volunteered to help at the fire department for their chicken bbq, and I was working in the kitchen with the boiling macaroni. Sure enough, next day I got sick. Even when he tried to make it when I wasn't home for a third time, I still got sick the next day. This tells me I've moved into the super sensitive arena. But I have to believe that's because I've done such a good job of avoiding gluten, that when I get a little bit, I'm not used to it and react stronger. So be aware of vapors!!!

It's been a long thread and some discussions went astray .. Have you reached a conclusion? Have you found an answer? :)

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    Celiac.com 07/14/2018 - If you’re looking for a simple, nutritious and exciting alternative to standard spaghetti and tomato sauce, look no further than this delicious version that blends ripe plum tomatoes, garlic, olive oil, basil, and firm sliced ricotta to deliver a tasty, memorable dish.
    Ingredients:
    12 ounces gluten-free spaghetti 5 or 6 ripe plum tomatoes ¼ cup extra virgin olive oil 2 cloves garlic, crushed ¾ teaspoons crushed red pepper ¼ cup chopped fresh basil 2 tablespoons chopped fresh parsley Kosher salt and black pepper ⅓ cup pecorino Romano cheese, grated ½ cup firm ricotta, shaved with peeler Directions:
    Finely chop all but one of the tomatoes; transfer to large bowl with olive oil and ¼ teaspoon salt.
    Cook spaghetti until al dente or desired firmness, and drain, reserving ¼ cup cooking water. 
    Meanwhile, chop remaining tomato, and place in food processor along with garlic, red pepper, and ½ teaspoon salt; puree until smooth. 
    Gently stir mixture into the bowl of chopped tomatoes.
    Add cooked spaghetti, basil and parsley to a large bowl.
    Toss in tomato mixture, adding some reserved pasta water, if needed. 
    Spoon pasta into bowls and top with Romano cheese, as desired.

    Jean Duane
    Celiac.com 07/13/2018 - I went to a friend’s home for dinner.  A few days before, she called and asked me what I could eat.  I asked her what she was planning to make, and she said she was grilling meats with side dishes.  I said, “Great.  Please just grill a piece of chicken for me with salt and pepper, and I’ll be happy to bring a side.” She said, “No need to bring a side.  I’ve got this.” When I arrived, she greeted me and said, “I spent all day cooking tonight’s dinner so you can eat it. Hey would you just check this salad dressing to see if it is OK for you?” I looked at the ingredients and it contained gluten and dairy, both of which I cannot eat.  Then I glanced around the kitchen and saw evidence of wheat cross-contamination, including buns being toasted on the grill, and gluten-containing barbeque sauce spilling on the grill where my “clean” chicken was cooking. She had other guests to tend to, and I couldn’t offer instruction or read the ingredients of everything she used in the meal. 
    At social gatherings, I’ve been challenged too by those who ask if I am really “allergic,” or just eating gluten free as a “fad.” I’ve been told many times by hosts and hostesses that, “a little won’t hurt you,” or “everything in moderation,” or “if it is made with loving hands, it is good for you to eat.”  Of course, all of this is bunk for those with food allergies or celiac disease.  A little bit may kill us, and whether made with loving hands or not, it will certainly make us sick. 
    Those of us with food allergies and/or celiac disease walk a tightrope with friends and relatives. The old rules of etiquette just don’t work anymore.  We don’t want to insult anybody, we don’t want to be isolated, and we also don’t want to risk our health by eating foods that may contain ingredients we cannot tolerate.  So what do we do? 
    Etiquette books advise us to eat what is put in front of us when we are guests in someone’s home. They caution us at all costs not to insult our hostess. Rather, we are instructed to compliment the hostess on her good cooking, flavor combinations, and food choices.  But when foods are prepared in a cross-contaminated environment with ingredients we are allergic to, we cannot follow the old social constructs that do not serve us.  We need to work together to rewrite the rules, so that we can be included in social gatherings without fear of cross-contamination, and without offending anyone.
    Let’s figure out how to surmount these social situations together.  
    Each edition of this column will present a scenario, and together, we’ll determine appropriate, polite, and most importantly, safe ways to navigate this tricky gluten-free/food allergies lifestyle in a graceful way.  If someone disagrees with our new behavior patterns, we can refer them to this column and say, “Here are the new rules for those of us with food allergies or celiac disease.”  When we are guests in someone’s home, we can give them links to this column so they understand the plight we are faced with, bite after bite. Perhaps this will help those of us living with us to understand, be more compassionate, and accepting of our adaptations to keep ourselves safe. 
    This column will present a scenario such as the one above, and ask that you comment on how you would navigate it. Let’s talk about it. Let’s share ideas.  Using the example above, here’s the scenario for this issue:
    What would you do?
    Your kind-hearted friend invites you to dinner and insists on cooking for you.  You arrive and the first thing she says is, “I’ve spent all day making this for you. Oh, I bought this salad dressing for you, but you might want to read the ingredients first.”  You do, and it contains malt vinegar.  You look around the kitchen and notice evidence of cross-contamination in the rest of the meal.  What do you do? 
    Please comment below and feel free to share the tricky scenarios that you’ve encountered too.  Let’s discuss how to surmount these social situations.  What would you do?