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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Glutened By Vapors
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51 posts in this topic

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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A second upper endoscopy with biopsies was scheduled, but this time I was told to eat a moderate amount of gluten everyday before the procedure. I ate about two slices of bread per day, which is more than I normally would. I was normal for the first two-three weeks of the gluten plus diet, but then I became really sick. I started getting the normal celiac symptoms, like diarrhea and extreme tiredness. Near the end, I had debilitating stomach pain and I was 2 times more asleep than awake each day. I couldn't do the 2 pieces of bread a day some days, but the pain was still there. I knew that I wouldn't ever have to force myself to eat bread for a test ever again. I was called a few days before my endoscopy telling me that a kid in a worse state than me had to take the OR during my time. I forced myself to eat more bread for another month and a half. The day finally came. I was diagnosed celiac, which I have concluded to be initiated by (1) the steroids/poison ivy and (2) the gluten binge fest.  AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA Celiac Disease isn't completely understood yet. Most of the time if you weren't showing symptoms when you were a baby (so your case) it means that celiac was/could be triggered by an event in your life that causes stress on the body (like stress, physical injury, etc.).  The positive result that you got from the blood test doesn't automatically mean celiac, but it could. Here's some options: Talk to your doctor (or a different doctor) or even a specialist gastroenterologist (you can get a referral from a family doctor (general physician)) and see if you can do the blood test again, you have to have some kind of gluten for this to work in advance, so if you don't want to break your gluten-free streak, than don't really invest in this option. If you feel comfortable, you could even ask to do this test under a few scenarios (no gluten (now) and after a gluten binge, compare results). If you do this test and your indication is low off gluten and then high after gluten, I'd probably skip the biopsy. That's a strong enough sign that you don't need to put yourself through the painful-gluten binge. Maybe this is what that first doctor just assumed. But having that test when you haven't had any gluten could make the difference - it acts as a control. Go straight to the biopsy. You could do this, but I'd probably do the blood test first. I went through a lot of stress with the gluten-binge that you have to do to get an accurate result, you would also be breaking your gluten-free diet that may/may not be helping you right now. Do nothing, stay on your gluten free diet hoping that it is helping you. But if you are not celiac or gluten-sensitive (celiac before it starts to wreck your small intestine), going gluten free isn't healthy - you can do some research on this if it interests you. If you feel bad/unhealthy after going gluten free it's probably a sign. Good luck, also know that you might come to a point of stress in your life that can start celiac's destructive path. Ultimately, it is your body, and you should not feel forced or hesitate to act on health issues that impact you.
    • I'm sorry that life is so hard right now. Really.  I can't imagine working 3 jobs and trying to manage this terrible illness.  I think about American society and their obsession with food often.  Whenever you look at the internet, there are all these fabulous gluten-free recipes, but when you don't have time or money to cook these things, a simple gluten-free lifestyle is just that - simple. There isn't a lot of variety, so it's kind of boring. But, I guess I have gotten used to being boring. I just eat corn chex and fruit or yogurt for breakfast. I eat a lot of eggs, beans, rice, corn tortillas, nuts, chicken, fruit and veggies.  A loaf of gluten-free bread will last me 4-6 months in the freezer.  I buy a bag of dried beans for $1.29, I soak them overnight, and put them in the crockpot the next day. I add different spices, sometimes chicken and Voila! - dinner is ready when I get home from a long day. Family gatherings are miserable and I haven't quite figured out the best way to deal yet. If my grandmother were still alive, I imagine she would be a lot like yours - well-meaning but not really able to understand the nitty-gritty.   I just reassure my family that I am fine and that they really shouldn't do anything special for me. I bring a bag of Hershey's kisses or other gluten-free candy I can nibble on along with my meal and then I try to treat myself to a nicer home cooked meal later in the week when I have time to cook - because who has time to cook during Christmas???? And, I agree with knitty knitty. If someone else in your family/friends were gluten-free for medical reasons, it would make socializing a bit easier. One of my husband's good friends is NCGS. When we get together as a group, we can make each other special dishes and it helps to feel less isolated.  Good luck!  
    • Hi!  Um, please forgive my quirky sense of humor..... Celiac Disease is genetic... All first degree relatives of people diagnosed with Celiac Disease should be tested for the disease, too.  Gall bladder problems are often associated with Celiac Disease.  Your diagnosis might save your whole family from further medical problems as they age and the disease progresses... You need to set a good example if relatives are similarly diagnosed.... and then everybody will have to eat gluten free at family gatherings....  
    • That's what I thought!  My father has gluten sensitivity and I almost regret telling the doctor that because I feel that made her jump to conclusions because of that.  He never had the biopsy either.  I feel like doctors think it's just easier to say it's celiac when they show a gluten sensitivity to avoid additional testing, even if that diagnosis doesn't make any sense at all.  My doctor didn't even offer the biopsy, and said the blood work was enough.  Should I seek a third opinion?  I mean, I've been gluten free for 9 months...
    • It will prolong your life....celiac is a autoimmune disease that  causes your own immune system to attack you. The longer your eating gluten the worse it gets, I mean all kinds of other autoimmune disease, food allergies, food intolances. One day you could lose the ablity to eat carbs, or sugars, or become randomly allergic to tomatoes or corn all cause you decided not to be on road to healing I am not kidding here. I am allergic to corn, can not process meats, have another autoimmune disease that makes it so I can not eat dairy or CARBS/SUGARS.   I wish I could go back in time and go on a gluten-free diet a decade ago. Worse that could happen you could develop cancer or other complications and yes we have had this happen to a member before on our forums. Think of it like this your just changing brand here I will give you some links to some gluten-free foods, and how to order them, You can even order alot of them online this should help simplify it for you. I suggest thrive, amazon, or one of hte other links from there, Many you can order from the manufacture. https://www.celiac.com/gluten-free/topic/117090-gluten-free-food-alternatives-list/  
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