Explaining Gf As Lifestyle Choice.

[tarnalberry]

I know this isn't going to be a popular thing to say, but since you brought it up, I am kind of annoyed at the volume of people on this message board that don't have celiac disease.  What are you doing here?  If you just want to be gluten-free, great, good for you.  It's probably a healthy choice. 

But isn't this "Celiac.com" for people with a disease that renders gluten intake life-threatening?  Isn't it here that I can communicate and empathize with people who have suffered debilitating symptoms, then had made a drastic lifestyle change to save their lives?

<{POST_SNAPBACK}>

You make the assumptions that: 1) celiac diagnosis is clear cut, 2) accurate celiac diagnosis is readily available, and 3) celiacs all suffer debilitating symptoms. The research - even on biopsy proven celiacs disease, shows those assumptions to be false, noting that doctor information on celiac disease is severely lacking, accurate testing of at-risk groups is not being performed, lab tests are neither completely sensitive nor completely consistent, the symptoms (both external and internal) of celiacs disease varies WIDELY amonst those with it.

[skbird]

I am surprised to read a comment like this. One of the most amazing things about this forum is that everyone is so supportive. I was a little chicken to admit at first that I don't have the test results to firmly back up any gluten diagnosis for myself but I have gotten so much support from people here I have started to think people who are intolerant of gluten are special, very caring people. As a result I have also learned that Celiac is not the only end result of gluten intolerance, but many other destructive autoimmune disorders also stem from eating gluten if you are intolerant.

I'm not going to chronicle all the things in my life that have improved from my being gluten free (without a Celiac diagnosis) but I am going to stick up for myself and people like Dogear who started this thread, because we deserve support and community just like anyone else. The gluten-free lifestyle is not easy and without support groups like this one, many of us wouldn't have nearly the coping skills we have now, or knowledge about what we need to do to stay healthy.

The more people bringing awareness to gluten intolerance, the better for all of us. Don't condemn those who are on your team.

Stephanie

[debbiewil]

dogear,

There are many, many people who don't eat the "standard" diet through personal choice - for instance anyone who eats vegetarian, vegan, kosher, low carb, high carb, raw food, etc. etc. What you eat and why you eat it is your own personal choice. You don't have to explain it to anyone. A simple "I don't eat gluten" will do. If people persist, you can say you feel better without it, or that you don't like it, but you don't have to say anything. IT'S NOT THEIR BUSINESS! Now, it would be nice if you educated them on the dangers of grains, but you don't have to. If they persist, ask them if they would be as rude to a person who refused shellfish because it wasn't kosher? It's their personal choice to eat kosher; it's your personal choice to eat gluten-free. You don't have to justify it to anyone.

Debbie

[mookie03]

Dogear, just wanted to pipe in and agree with the general consensus here. This is the only forum i have come across with such a helpful, well-informed and caring group of people, celiac or not. I too am undiagnosed (stopped eating gluten before i was tested so got unclear results) but to me it is more important to stick to this diet so i can get through the day than to gluten myself for a period of time to get tested. Knowing whether or not i have celiac disease is immaterial to me at the moment b/c i know i would be doing the same thing as if it is an intolerance- avoiding gluten. There may be a time when i do choose to subject myself to the testing (and gluten myself up for it), but I dont think that that day will make me more or less worthy of visiting this site.

Sometimes it is easier to lie than to explain the ambiguity, but you should not feel ashamed to admit that you are not a diagnosed celiac. I recently met someone who vehemently did NOT believe that I couldnt eat gluten- he thought i was making it up. There are tons of ignorant people in this world, but i shrugged it off and moved on with my life. He had never heard of gluten or celiac disease, so he wouldnt have believed me regardless.

This site is amazing, and has really helped me through these past 5 months. This would be so much harder w/o you guys!!!!

-Stefi

[Lola]

I know this isn't going to be a popular thing to say, but since you brought it up, I am kind of annoyed at the volume of people on this message board that don't have celiac disease.  What are you doing here?  If you just want to be gluten-free, great, good for you.  It's probably a healthy choice. 

But isn't this "Celiac.com" for people with a disease that renders gluten intake life-threatening?  Isn't it here that I can communicate and empathize with people who have suffered debilitating symptoms, then had made a drastic lifestyle change to save their lives?

I don't fault anyone for needing support with a diet, but I don't think this is the place for dieting support... Maybe I'm in the wrong place.  I have a brother with a birth defect due to this disease and my mother is gone from an autoimmune disorder related to progressive celiac disease.

I don't think you should lie about it, that's ridiculous.  That's mocking someone's illness... like saying you have cancer when you don't.  If you just don't eat gluten, just say that: "I don't eat gluten because it's not good for me".  The end.

<{POST_SNAPBACK}>

This is a public forum so I suppose that people that live gluten-free without celiac disease have just as much right to post here as people with celiac disease. Perhaps they are here to make new friends who are gluten-free and share knowledge on cooking, lifestyle and purchasing gluten-free products...

All though the link to this forum is through celiac.com - ironically if you look at your web-browser - we are actually on glutenfreeforum.com, not celiac.com.

I'm happy to say that so far, everyone I've talked to has been most welcoming to my questions and concerns.

[kevsmom]

After about a year, I've gotten comfortable about admitting to a few close friends, but no relatives yet, that I'm gluten free. I told one friend of mine who actually has celiac disease, expecting that he would be furious and immediately terminate the friendship and never want to speak with me again. But that didn't happen. In fact, he was of the "gluten isn't good for anyone" school.

     I've told a few waiters and people in contexts where nobody I knew was listening, "I don't eat wheat.", and left it at that. Once I even worked up the nerve to ask an herbalist if his supplements were gluten free or not. When he asked me if I was celiac, I told him that I was not but felt notably better gluten free. He said something to the effect of "there seem to be a lot of people like that", which makes me feel like less of a freak.

    Sometimes even buying Ener-G crackers or the gluten free cookies from Midel, makes me feel like I'm doing something bad. Like I'm taking an incorrect antiobiotic or buying drugs illegally. I often will go out of my way, or even go without specifically gluten-free products to avoid an item where it specifically uses the term celiac or in the case of Ener-G crackers "gluten sensitive enteropathies" on the box or package. It makes me feel like I'm doing something very wrong, and just plain shouldn't be on this diet. It makes me feel obligated to just go buy a bread roll and eat it right there, even if I'm not hungry and have plenty of gluten-free food at home and with me.

     Although nobody reacted badly to the whole thing yet, I can't shake the feeling that I'm a weirdo for having a gluten-free lifestyle but no diagnosis to call for it. And yes, I did feel better on the diet, but the fact I wanted it for years without expecting any health benefits still makes me feel really weird about the whole thing.

     I'm often ashamed of myself when celiacs speak of the foods they miss, while I have an extremely strong emotional aversion to ever eating them again.

    Am I going crazy?

<{POST_SNAPBACK}>

Don't be ashamed - Diabetics tell people all the time that they can't eat something.

It is very important to tell people about Celiac - it is a good chance to educate them. It is especially important to explain when you go to a restaurant or eat at someone elses house. Telling them that you don't eat wheat is not enough. You are putting yourself at too much of a risk for getting sick.

The more people know the better it is - not just for you, but for all Celiacs!

This forum is a great place to help - Good luck

[Felidae]

You know, I don't have a celiac diagnosis, but my quality of life has improved significantly since going gluten-free. I just saw my doctor the other day, and she is very happy with the improvements to my health. She doesn't think it would be a good idea to eat gluten again just to get the endoscopy done, which may end up being inconclusive anyways. Where else are supposed to go? This forum has been so helpful to those of us diagnosed or not. I for one am not on a fad diet and I'm sure most people here are not on one either. When I was born celiac was not as understood as it is now. I think your statement discriminates against the non-diagnosed and inconclusively-diagnosed people. But everyone is entitled to their opinion.

[Rachel--24]

I know this isn't going to be a popular thing to say, but since you brought it up, I am kind of annoyed at the volume of people on this message board that don't have celiac disease.  What are you doing here?  If you just want to be gluten-free, great, good for you.  It's probably a healthy choice. 

<{POST_SNAPBACK}>

Personally, I think this is a rather selfish statement. If only those who had "official" Celiac diagnoses were allowed on this forum...the amount of caring, supportive and informed people here would be greatly diminished.

Instead of taking your frusteration out on those of us who were not properly tested or even informed about celiac disease by our doctors...why not take that frusteration to the doctors and let them know that they are not doing their jobs? If the world was more aware of celiac or gluten sensitivity and the doctors were testing people for it there would be alot less self-diagnosed people on here and maybe that would somehow make you feel better about your own situation???

Also non-celiac gluten sensitivity can be life-threatening as well. Developing autoimmune diseases, ataxia, osteoporosis, neurological disorders, etc...I don't know about you but I don't think those are conditions I'd want to live with as a result of eating gluten with or without a celiac diagnosis.

I was off work on disability for 2 years because no doctor could figure anything out. Celiac was never mentioned. I discovered it on my own and I started the diet before testing. I am able to function again and I'm working again...thanks to the diet and those on this board who helped guide me in the right direction.

All I have now are my positive Enterolab results, the support of my friends and family (who have noticed a tremendous amount of improvement since I went gluten-free) and the support from people on this board. Thats good enough for me...why its not good enough for you, I have no idea. Like Stephanie said...We are all on the same team here.

Its unfortunate we cant all have an "official" diagnosis but its great that we *can* regain our health w/out the help of doctors and by simply learning the diet and implementing it. Without a supportive place like this message board I'm sure the transition would have been much more difficult on me.

[ianm]

I went to dozens of doctors and not one of them even mentioned celiac. All they could think to do was write prescriptions. I am self-diagnosed because I had no other option. Once I quite eating gluten the turnaround in my health was so dramatic that there just isn't any question as to what the problem is. The test for celiac disease just aren't all that accurate so it is still possible for the test to be negative and still have celiac disease.

[Rusla]

I went to dozens of doctors and not one of them even mentioned celiac. All they could think to do was write prescriptions. I am self-diagnosed because I had no other option. Once I quite eating gluten the turnaround in my health was so dramatic that there just isn't any question as to what the problem is. The test for celiac disease just aren't all that accurate so it is still possible for the test to be negative and still have celiac disease.

<{POST_SNAPBACK}>

So true with so many tests. Especially true of thyroidism and now I know how subjective thisthe tests for celiac disease are also. The only reason a person who has no one who has celiac disease, or celiac disease like sympton, family or friends with these problems is on here would be for a fact finding mission. They may be gathering information so that they are better informed and it would be a darn good idead if medical students would get on these boards. Maybe they would learn not to rely on technology and to rely on symptoms and good old common sense.

[jmarie]

My issue was, of course, not with people who have not been "officially" diagnosed, since my understanding is that many diagnoses stem solely from a positive response to a gluten-free diet. It just doesn't make any sense that I would have been offended by people who are here for any kind of support relative to survival.

My offense stemmed from someone suggesting that they might benefit from pretending to have celiac disease for any reason, even to make their gluten-free lifestyle better understood. I can't imagine doing that, even during the many years that I was undiagnosed and suffering from a myriad of symptoms.

A few times since I was diagnosed six months ago, I have run into people in local health food stores who are shopping for gluten-free food and chatting about it with me when I realize they are doing it for diet reasons, like Atkins. I guess that makes me resentful, because I wish that it were an option for me (I'd opt out).

I was not trying to be selfish, I was expressing my thoughts to better understand the forum. Apparently that is discouraged unless my thoughts jive with the mainstream. I must have expected a gentler response, but I don't know why.

I am sorry if my comment was hurtful or "selfish", but I think I am entitled to my worry, anger and frustration (and consequent venting) just like everyone else. It is hard for me to feel like gluten is hanging over my head like a sword of Damocles, especially since I have recently been diagnosed with "unresponsive celiac disease", meaning that my intestines are not healing well even gluten free.

[Matilda]

...

[Rachel--24]

Marie,

I'm sorry if your post was misunderstood. I don't know of any members on here who are on a "fad" diet. As far as I know the majority of people here had serious health problems. When you mentioned that alot of people on here don't have Celiac....I assumed you were referring to those who don't have an official celiac diagnosis.

I understand how Dogear feels in a way. I consider myself to be a very honest person and there have been times I've felt guilty for saying I have celiac w/out a confirmed diagnosis. In a way its a lie...but the truth is that I cant ever know *for sure* without doing a gluten challenge. I'm not willing to be sick again for the tests and I cant afford to be off work while I put myself through something like that. Its hard to explain to someone why I was off work for 2 years and why I lost so much weight. Sometimes its just easier to say celiac disease rather than try to explain the whole situation. I don't feel guilty for buying gluten-free foods because I obviously need to. I don't think Dogear should feel guilty either...whether she's doing it for her health or simply because it makes her happy. Its her choice.

The food is not exclusively made for Celiac/gluten sensitive people. Anyone can buy it and eat it. I would love it if *everyone* decided to go gluten-free....it would certainly make eating out less risky and the cost of gluten-free foods would have to come down. I cant complain about that.

I think because of the fact that I was so ill and scared of what could be wrong with me...I am happy to know its treatable with only dietary changes. I have no resentment about this condition and in fact I'm proud in a way. I'm sure if I could talk the whole world into going gluten-free I would. My diet is extremely limited right now but I can honestly say even though its frusterating at times I have never cried over the foods that made me so sick. I can definately live without them.

Eating gluten-free is healthy regardless....so why be upset if someone wants to live a healthier lifestyle because it makes them feel good? Maybe if you look at it in this way instead of as a horrible punishment you will have a better attitude about being on the diet. A positive attitude can do wonders for healing. I'm sorry you havent had alot of healing yet but don't give up hope.

Feel free to vent if you wish...thanks for explaining your post.

[Rusla]

My issue was, of course, not with people who have not been "officially" diagnosed, since my understanding is that many diagnoses stem solely from a positive response to a gluten-free diet.  It just doesn't make any sense that I would have been offended by people who are here for any kind of support relative to survival.

My offense stemmed from someone suggesting that they might benefit from pretending to have celiac disease for any reason, even to make their gluten-free lifestyle better understood.  I can't imagine doing that, even during the many years that I was undiagnosed and suffering from a myriad of symptoms.

A few times since I was diagnosed six months ago, I have run into people in local health food stores who are shopping for gluten-free food and chatting about it with me when I realize they are doing it for diet reasons, like Atkins.  I guess that makes me resentful, because I wish that it were an option for me (I'd opt out).

I was not trying to be selfish, I was expressing my thoughts to better understand the forum.  Apparently that is discouraged unless my thoughts jive with the mainstream.  I must have expected a gentler response, but I don't know why.

I am sorry if my comment was hurtful or "selfish", but I think I am entitled to my worry, anger and frustration (and consequent venting) just like everyone else.  It is hard for me to feel like gluten is hanging over my head like a sword of Damocles, especially since I have recently been diagnosed with "unresponsive celiac disease", meaning that my intestines are not healing well even gluten free.

<{POST_SNAPBACK}>

Jmarie,

Unfortunately it seems that I was not the only one who thought you were attacking all who were not "cast in stone" diagnosed as Celiac. However, because some of us have tried the "ER4yt Diet" which I had originally done for health reasons to see if it made me feel better. That was because it did not have any gluten in it and long before my test, which now I find was not done right because I was not supposed to be gluten-free when doing the test. Everyone on here that I know of has a family, friend or themselves show gluten intolerance or confirmed Celiac. Because we all don't feel well, and this is tough to deal with when people snicker when you ask if a cosmetic is gluten-free they think you are being silly or frivolous. I did not know Atkins was subscribing to gluten-free. That as I have heard and seen people get really sick from that diet is what has been deemed "a dangerous diet."

I can understand why it would upset you when people are doing it "just as the in thing to do." It would be a great deal better if some people would understand what we go through instead. It is amazing how much stuff put into our foods is dangerous to so many people. I would definitely like to see MSG made illegal. We who are not fully confirmed yet are definitely do this for fad sake. Most of us can't even get doctors to pay attention.

[kevsmom]

After about a year, I've gotten comfortable about admitting to a few close friends, but no relatives yet, that I'm gluten free. I told one friend of mine who actually has celiac disease, expecting that he would be furious and immediately terminate the friendship and never want to speak with me again. But that didn't happen. In fact, he was of the "gluten isn't good for anyone" school.

    I've told a few waiters and people in contexts where nobody I knew was listening, "I don't eat wheat.", and left it at that. Once I even worked up the nerve to ask an herbalist if his supplements were gluten free or not. When he asked me if I was celiac, I told him that I was not but felt notably better gluten free. He said something to the effect of "there seem to be a lot of people like that", which makes me feel like less of a freak.

    Sometimes even buying Ener-G crackers or the gluten free cookies from Midel, makes me feel like I'm doing something bad. Like I'm taking an incorrect antiobiotic or buying drugs illegally. I often will go out of my way, or even go without specifically gluten-free products to avoid an item where it specifically uses the term celiac or in the case of Ener-G crackers "gluten sensitive enteropathies" on the box or package. It makes me feel like I'm doing something very wrong, and just plain shouldn't be on this diet. It makes me feel obligated to just go buy a bread roll and eat it right there, even if I'm not hungry and have plenty of gluten-free food at home and with me.

    Although nobody reacted badly to the whole thing yet, I can't shake the feeling that I'm a weirdo for having a gluten-free lifestyle but no diagnosis to call for it. And yes, I did feel better on the diet, but the fact I wanted it for years without expecting any health benefits still makes me feel really weird about the whole thing.

    I'm often ashamed of myself when celiacs speak of the foods they miss, while I have an extremely strong emotional aversion to ever eating them again.

    Am I going crazy?

<{POST_SNAPBACK}>

[kevsmom]

dogear -

It seems that this has totally gotten away from the original questions. I hope that in the future, you find more fellowship in this forum. There is so much information here, and usually a lot of support.

[skbird]

Marie -

I can understand your upset with fad dieters:

A few times since I was diagnosed six months ago, I have run into people in local health food stores who are shopping for gluten-free food and chatting about it with me when I realize they are doing it for diet reasons, like Atkins. I guess that makes me resentful, because I wish that it were an option for me (I'd opt out).

These people in the health food store are the ones you should be expressing your upset with, though. I don't know of anyone on this forum who is using gluten free as a fad diet, to lose weight, or whatever. Everyone on here is following for health reasons. Dogear's message initially looks like that is what he is doing, but if you read his post, he indicates that he feels better as a result of the diet. When I first started the diet, I didn't have a diagnosis, and I didn't feel all that secure or justified in my decision to follow it. But I kept feeling better and then I talked with my doctor and he affirmed my decision, then I got some labs from EnteroLab done that helped back up what I already knew to be true. Dogear hasn't done all that though, so what he needs at this point is support.

Anyway, I agree about fads. I watch people avoid certain foods at times just because and I think what is their problem? There are SO many things I can't eat, it just bums me out to think anyone would just play with avoidance for fun.

I hope you find this forum as informative as I have.

Stephanie

[Jnkmnky]

What's the big deal? I read Dangerous Grains to further my understanding for the sake of my son -who has Celiac Disease. As a result I'm gluten free. So are my two other non-celiac children. Who cares? Maybe if you fortify yourself with knowledge about the dangerous, toxic effects of gluten on the human body, you can rely on that defense when you feel *attacked* for making a lifestyle choice. This is kind of a ridiculous, overly sensitive, personalization of a diet choice- imo. I couldn't care less what anyone else on the planet is eating. No one cares what I'm eating. Do you really imagine yourself and your personal dietary choices so powerful to the rest of the world that individuals who are made aware of your diet will have their lives rocked? I think you need to address your narcissim.

[Rachel--24]

I couldn't care less what anyone else on the planet is eating.  No one cares what I'm eating. 

<{POST_SNAPBACK}>

I agree....who cares?? Let people eat what they want and for whatever reason they want. Sheeesh. Nobodys gonna tell me where to live, what car to drive, or what clothes to buy and they certainly arent gonna tell me what to eat.

I work at a grocery store and people buy groceries...I would never think to wonder why a person was buying a certain food. If they want sugar-free...do we question whether they are diabetic....do we *need* to know why they dont eat sugar. I think not and again...who cares???

[darlindeb25]

Marie, I appologize for misunderstanding your statement. I am an undiagnosed celiac and I doctored for many, many years and got no where. The doctor I am seeing now told me he would not ever ask me to do a gluten challenge just to prove I have it--he is 99% sure I am celiac, just from the symptoms I had for at least 20 years previous to going gluten free. I also have neuropathy now because of the malabsorption from celiac and we have proof of the neuropathy. I was very sick with celiacs and no one knew what it was. My sister was equally as ill and just happened across celiacs. She asked to be tested and was told she didnt have it, but that doctor was wrong and admitted he was.

I went gluten-free for a reason and believe me, I still have days were I say "why me?" I have days were it just doesnt seem fair. Basically I am a happy person and it doesnt bother me to have people eat in front of me. Just somedays I cant understand why I have to be celiac and intolerant of soy and corn too. We each have to deal with this the best we can. Deb

[Rusla]

Marie, I appologize for misunderstanding your statement.  I am an undiagnosed celiac and I doctored for many, many years and got no where.  The doctor I am seeing now told me he would not ever ask me to do a gluten challenge just to prove I have it--he is 99% sure I am celiac, just from the symptoms I had for at least 20 years previous to going gluten free.  I also have neuropathy now because of the malabsorption from celiac and we have proof of the neuropathy.  I was very sick with celiacs and no one knew what it was.  My sister was equally as ill and just happened across celiacs.  She asked to be tested and was told she didnt have it, but that doctor was wrong and admitted he was.

I went gluten-free for a reason and believe me, I still have days were I say "why me?"  I have days were it just doesnt seem fair.  Basically I am a happy person and it doesnt bother me to have people eat in front of me.  Just somedays I cant understand why I have to be celiac and intolerant of soy and corn too.  We each have to deal with this the best we can.  Deb

<{POST_SNAPBACK}>

I have to admit, my family doctor believes me and my dentist was the one who encouraged the test. My family doctor and I have no faith in specialists who never do anything when you do prove you have something. I personally believe it is wrong for one person not to honour another's either food choices or food necessities. I would think I would not be too far off the mark saying that I would bet that the greater percentage of people do not know what is Celiac or gluten intolerant. Now instead of taking it as an insult or a pain when they ask why I don't want gluten to touch anything etc. I personally accept it as my chance to inform the uninformed of some of the perils of Celiac and gluten intolerance. If they are that curious to want to know what I am eating then I will tell them and why. That way the more people we inform the better it is for us.It could only boost peoples awareness and perhaps open up more restaurants to doing gluten free meals.

[dogear]

Marie -

I can understand your upset with fad dieters:

These people in the health food store are the ones you should be expressing your upset with, though. I don't know of anyone on this forum who is using gluten free as a fad diet, to lose weight, or whatever. Everyone on here is following for health reasons. Dogear's message initially looks like that is what he is doing, but if you read his post, he indicates that he feels better as a result of the diet. When I first started the diet, I didn't have a diagnosis, and I didn't feel all that secure or justified in my decision to follow it. But I kept feeling better and then I talked with my doctor and he affirmed my decision, then I got some labs from EnteroLab done that helped back up what I already knew to be true. Dogear hasn't done all that though, so what he needs at this point is support.

Anyway, I agree about fads. I watch people avoid certain foods at times just because and I think what is their problem? There are SO many things I can't eat, it just bums me out to think anyone would just play with avoidance for fun.

Stephanie

<{POST_SNAPBACK}>

Truth be told, I initially got into gluten-free by accident. Long story really. But I had no idea that it was a "fad" diet, in some circles. That was certainly not my intent. No what initially happened, was that I ended using advice from celiac oriented books, to deal with some more obvious problems I had with food additives-basically I was adapting the advice, to the "no-no" list I was given. It was basically a combination of my using those advice sources and the fact that *most* of the foods out there without these additives are gluten-free as well. (I was partly inspired to look at celiac oriented advice, because one of my friends has celiac.)

So basically I got into the gluten-free diet purely by accident, strange as that may sound. I had no idea that it was anyone's idea of a fad diet. I didn't really know much about, or subscribe to, the eat right for your type. And I sure as blazes take a pretty dim view of the Atkins. At first I was thoroughly convinced that I was probably the only person without a biopsy case of celiac to be gluten-free, and that jmarie's attitude would be everybody's.

I also once took a dim view of people who didn't eat particular foods, although I didn't say anything.

But I think even people who try fad diets aren't doing it "just because". I think most of those people do feel that there's something wrong with the way they are eating, but haven't yet been able to pin down what it is. This can be the result of them being overweight (which believe me is a real problem and not just lack of willpower for many of these people-most of them have a struggle that is very hard for people who've always been thin to understand), the result of high blood pressure, cholesterol, diabetes, stomach problems, or other health problem, or it can just be a very vague and elusive feeling that there is something profoundly unhwholesome about they way they are eating. The last of those things will rarely be listened to by doctors, will be written off by others as hypochondriasis or just countered with vague advice. But it doesn't go away, and it can over time start to both eat at you and cause some people to disregard their health in other ways. This can show up in things as serious as drug abuse, alcoholism, or eating disorders, or it can be as subtle as neglecting one's annual physical, not taking a basic multi-vitamin, neglecting one's personal safety, and such. In my case it was mostly the sublte things. Both really boil down the feeling that (My health is pretty screwed anyhow. I'm just going to get cancer/heart disease/diabetes at a young age anyhow so what's the point?).

The symptoms I got rid of being gluten-free mostly weren't that dramatic. And to a certain extent it is not easy to seperate what to attribute to the lack of gluten, and what to attribute to a lack of the food additives. But could they have been a harbinger of something worse in the future? I don't know.

I admit to having tried my share of "fad" things, but gluten-free was ironically the last thing I would have considered intentionally.

[dogear]

A few times since I was diagnosed six months ago, I have run into people in local health food stores who are shopping for gluten-free food and chatting about it with me when I realize they are doing it for diet reasons, like Atkins.  I guess that makes me resentful, because I wish that it were an option for me (I'd opt out).

<{POST_SNAPBACK}>

Unresponsive celiac is a pretty harsh diagnosis no question. I'm sorry.

But you don't know what exactly might be the case for the people at the health food store or what the future may hold for them.

I think it's extremely likely that these people actually do sense something profoundly wrong with the way they are eating. I might be just driven by the idea that such diets are "in", but often it isn't. People as a rule of thumb don't change the way they eat, unless they feel something is not right. And chances, are that if and when, they find out what is wrong, they probably won't feel it is something they can opt out of either-the main reason most people never stick with these fads is because they end up missing the mark.

If these people are lucky, they may figure it out, before any permanent damage is done to them. If they aren't lucky the diagnosis could certainly be cancer, diabetes, alcoholism or worse addiction, the need for a triple bypass, a neurological disease such as MS, or lupus with still no clue as to what might have been wrong with what they were eating-or something else in their bodies or lifestyle that might not be attributable to diet. And the problem could be gluten or it could be something else entirely. Or it could be a combination of gluten and something else. (They might have some equally dangerous reaction to soy that medicine doesn't understand yet, for example.) And like I said before, for at least some of them they may be in more distress for not knowing than is apparent.

Furthermore, I'd add that part of my concern about what to tell people, is that I didn't want people to think it was a fad diet on my part. Partly, because I'd find it embarassing personally for people to think that. But partly, because I didn't want to plant that impression in a waiter's mind for the next person asking for a gluten-free meal or store item.

[Rachel--24]

Dogear,

You don't have to explain to anyone why you eat gluten-free. Gluten is bad for us...period. If you were one of the smart ones who figured that out without having to suffer for years while being shuffled from doctor to doctor with no answers....well then I applaud you for that. Why wait until gluten actually does damage to your body to go gluten-free? Trust your instinct and the next time you go shopping don't be ashamed about buying gluten-free food...feel proud cuz the other people walking around with cartfuls of gluten-filled food are eating something that is toxic and you are eating healthy. If everyone chose to live gluten-free there would be alot less sick people out there....I can guarantee that. After reading Dangerous Grains I'm convinced.

I think Jmarie should read this book and maybe understand that those who are eating gluten-free without having Celiac are doing themselves a favor and maybe they are aware of that fact. I doubt that they are on a "fad" diet...especially for weightloss since gluten-free foods are quite fattening....and who would want to pay that hefty price for gluten-free foods for no good reason?? I don't think anyone eating gluten-free is on a "fad" diet..it really doesnt make sense. People choose to eat gluten-free because they were either so sick they learned they HAD to or they are aware of the damage gluten can cause and don't want to take chances. If you think about it something like 43% of the population has celiac genes...the gene can be activated at any time if you have it...you could also suffer damage with no outward symptoms...why take that risk? Then there is that larger group of people with gluten sensitivity genes...gluten causes damage to these people as well.

Nobody should make an assumption as to why an individual chooses to eat something if they don't *need* to...maybe they are just smarter than us. I never knew about gluten and I was unable to get out of bed and still stuffing my face with gluten wondering why I was losing so much weight and unable to function or think clearly. If I would have been able to see the future...I would have went gluten-free before all this happened to me.

[darlindeb25]

I agree totally with Rachel. I was very sick too and having a difficult time dealing with daily life. My comfort food was TOAST, yeah, one of the worse things I could have been eating. When you read threads asking, "What is the one food you miss now that you are gluten-free?", you will find that most celiac's favorite foods were full of gluten. Mine were bread and noodles--both full of gluten. I agree that everyone would be better off gluten-free and that would make it so much easier for us. BUT, that isnt going to happen! There is always going to be gluten in our world and we will always have to face the fact that we can be glutened by accident at anytime, always vigilant, always on top of everything. I'm afraid to eat out, not because I worry what my friends will think, but because I am afraid of getting something other then gluten that I am also intolerant of. When gluten is removed from foods, more often then not, soy or corn is added and I cant do either--so I just dont eat out. In time your friends accept you as you are and they quit asking you to try things they know you cant have. Deb