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Sailing Girl

Profiting From My Misery?

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Hi folks,

This is my first post, even though I've been lurking for awhile (a pretty long while, actually). I've wanted to post an intro with the story of how I wound up gluten-free (and will soon), but I have a different story and a question for all of you and didn't want to wait until I had time to write the intro.

So, here goes:

I wound up going over to a friend's house tonight, and only realized at the last minute (after I'd left home) that it would be for dinner. Now, I've been glutened at this house before (gluten EVERYTHING, and I swear to God he ought to be tested ... but that's another issue). Had I known beforehand about the dinner, I would have fixed something to eat before I left home. But another friend assured me that he had made me a perfectly safe salad and was bringing it. Although this friend with the salad is fairly well-acquainted with gluten-free, I still had my doubts, but I already was on my way. Worst case, I thought, I'd skip the salad and go hungry.

I got there, and realized two things: 1) the salad had capers on it, and I didn't know what vinegar had been used in the jar with them, and 2) the salad itself was in a scratched Tupperware container of unknown history. In the past, I would have eaten it without asking questions, and knowingly (but quietly) risked getting sick. But I was just getting over a pretty bad glutening at *another* well-meaning (but not well educated enough) friend's place, and I simply didn't want to risk it again. So I started asking questions about the Tupperware and the capers and any possible cross-contamination with crackers or crumbs ... and they all jumped on me. Questioned the need to be *that* vigilant. Said I was holding them to a higher standard than the restaurants we frequent.

Now, that's true -- I use Celiac restaurant cards, but I don't go into restaurant kitchens and inspect for scratches in Tupperware. But I also almost always get CC'd at restaurants (not a bad reaction, but enough to notice -- mostly just a few spots of DH). And, since I'm getting tired of being CC'd (doing that over and over again can't be good), and I'm also a bit sick of making such a big production out of the whole thing, I'm eating out less and less, both at friends' homes and at restaurants.

I've accepted this (though not especially happily), but they haven't, which became clear as they basically attacked me. They told me they were sick of hearing me complain about the problem and not offer a solution (I didn't think I'd been complaining -- more like quietly suffering -- but I guess they'd know better than me). I said the only possible solution was vastly increased public awareness to the point where everyone in the United States knows how to cook a perfect gluten-free meal and prevent CC ... or, better yet, the complete elimination of gluten from every food product with the exception of actual gluten-y bread products ... but that I couldn't see how I could impact that on a broad enough scale to allow me to go out to eat with confidence, so I'd accepted that I'd go hungry a lot of the time, or just eat at home.

Well, that wasn't good enough. There were all sorts of suggestions about me flying to Italy to learn how they do things there (government funding for awareness and education, I would assume), and the evening devolved (with me practically in a fetal position in a corner of the couch) into a brainstorming session about how I could make huge piles of money changing the world into one that's absolutely safe for the gluten-intolerant.

Now, I don't have any ambition to change the world -- I just want to be left alone, raise my daughter and work on my boat. But it *would* be nice to be able to eat out safely ... well, mostly it would be nice to get my friends off my back. Which leads me to my question (the answers to which I may only use to shut them up, but who knows ...): Can any of you see any way to increase awareness of gluten intolerance while actually having fun and making money? Have any of you tried anything, and was it successful? Does this seem like an insurmountable problem to you? (It does to me, but they refused to accept that.)

Suggestions from my friends included: putting together a dog-and-pony show about symptoms of gluten intolerance, placing a notice in the local paper and charging admission for said dog-and-pony show; working with the local Food Lion (which will be adding a gluten-free section) to get them to pay me to offer free consults to customers; and working with local restaurants to help them add gluten-free menu items and inspecting/helping reorganize their kitchens to prevent CC if they do add gluten-free items. I've actually also considered some sort of blog (I write for a living, so blogging would be a natural), but I'm not sure I see how to make money and change the world with a blog.

What do you all think?

Jane

P.S. I did wind up eating some of the salad. It was probably fine (I'll know by tomorrow), and I maybe made too big a deal (did I?) out of the capers and the scratched Tupperware. My friend was really, really nice to think of me and bring it, and I really, really didn't want to risk hurting his feelings when he thought he was doing me a favor. But I'm so, so, so very sick of getting glutened everywhere (including from well-meaning friends). As I said before, it's better just not to eat it ... but it's no fun at all when the people I think are my friends get angry and defensive and refuse to accept the reasons I give for doubting the food's safety.

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Celiac.com Sponsor (A8):

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Sounds like you need a quiet night out.....without the inquisition and preparing for a defense.

And I too would hold friends and family to a higher standard: because I can talk to them one on one -- that's not possible in a restaurant situation as hard as you try. In a restaurant there are still degrees of separation.

We've been involved in conversations where the attack starts then it deteriorates into how we can "change the world" blah, blah, blah. Sometimes you just want to have a quiet dinner and be left alone without having to think too much about the "angle." Everything has an "angle."


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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Sounds like you need a quiet night out.....without the inquisition and preparing for a defense.

And I too would hold friends and family to a higher standard: because I can talk to them one on one -- that's not possible in a restaurant situation as hard as you try. In a restaurant there are still degrees of separation.

We've been involved in conversations where the attack starts then it deteriorates into how we can "change the world" blah, blah, blah. Sometimes you just want to have a quiet dinner and be left alone without having to think too much about the "angle." Everything has an "angle."

Yup, that's what I need -- a quiet night out without an inquisition. Unfortunately, it would be alone -- these are pretty much my best friends.

You know, if I really thought I could change the world, I'd jump right in. The problem is, I don't think it's possible. I can't even change my friends' minds -- I've tried to persuade two of the three who were there last night to be tested, and they won't even consider it. In fact, I talk about this *all* the time, to friends and to complete strangers -- and NO ONE has taken it seriously yet. That doesn't seem like a good track record for a dog-and-pony show.

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Hello, Sailing Girl

Glad you signed in.

You know, I had a strong reaction to your story.

This first part of it seemed normal, though not necessarily optimal behavior, for non-celiacs. Non-celiacs really do have to sort things out and figure out why a celiac makes the demands s/he does. They often don't pick up what all goes into making a judgment call on a situation, for a celiac. This may have had a part to it where they were asking you why you acted differently (as far as they can see) in two different situations. That might be a teachable moment...

"So I started asking questions about the Tupperware and the capers and any possible cross-contamination with crackers or crumbs ... and they all jumped on me. Questioned the need to be *that* vigilant. Said I was holding them to a higher standard than the restaurants we frequent.
"

And I can see their reaction in the quote below. Food between friends and family members is so basic and daily, and it has customs and desires built into it often: that everyone like the food someone prepared, or that everyone eat, or not eat...and I'll bet that non-celiacs who are close to you do hit moments of overload, where they're tired of having to micro-worry things. This sounds like venting to me.

"They told me they were sick of hearing me complain about the problem and not offer a solution (I didn't think I'd been complaining -- more like quietly suffering -- but I guess they'd know better than me).

But THEN what you described they did really put me off a lot. It sounds like they ragged on you unmercifully for a long time.

To the point that I wondered what kind of friends these are? Some of the things that you wrote that they said to you sounded like mockery, and you kept saying "they" so the reading effect was that a bunch of people mocked you for a long time.

If that happened, that has NOTHING to do with celiac disease or with any disease. It has to do with basic respect of a person. No one deserves an evening of mockery. I think you need to have a meeting with yourself to decide a few things:

1) how to stick to your guns without asking these friends to cook or prepare food for you at this time

  • ...maybe that can happen later but not now; it's not a perfect solution...a perfect one would be that you could all eat together and ~~everyone~~ be at ease with the food; yes, of course you...that's such a natural desire! But them, too. Their eating counts in a friendship as much as yours does. Your friend who made the salad did try, didn't s/he? That salad sounds like it was being made with you in mind even without you asking, since you didn't know there was a meal at your other friend's house. That was a kind gesture.
  • But you were left with a real question about the preparation of it. It might be a kind gesture, as a separate conversation, to call and thank that person who made the salad, trying to take care of your needs, for her/his kindness, without getting into defending your checking the preparation (which you had to do).
  • Just take them out of the responsibility spot regarding your food. It's you who eat your food, so basically it's your responsibility, nobody else's. Take that responsibility completely back for now. Eat beforehand, bring your own or bite the bullet and skip food that you judge might be a danger to you, and eat when you get home. It sounds like both you and they are needing a period in which you just make your food decisions without much discussion. You can deal with asking people to take care of you later on, not now after this mocking session.

2) what to do about the mockery

  • Good friends are hard to find, and if you've been with them for quite awhile, you'd think twice about becoming more remote from them or reducing contact with them, but for me that long session of ragging on you would be something that I'd be absolute about, that I wouldn't ever want to go through with this bunch again. If they're friends, and not people with whom you fill your time, I'd say tell them once (just once) clearly that you recognize their frustrations over the details of gluten free eating and appreciate their past efforts, but that their trying to make you a joke at their expense will have to stop, period. And then you'll have to stop it. It would be great, but don't expect them to stop. That kind of ganging up doesn't lead to miraculous conversions of heart over night.
  • For me, respect is the foundation of any longterm intimate relationship. Love depends on it. I would be extremely firm about your no tolerance for that behavior. I don't know what it will take for them not to do that to you again: firm "OK, you're doing it again; that's it, no more of this"...a "well you all are doing it again; that tells me the party's over for me; see you around" and then you leave...but take the matter in your own hand. If they're true friends, your insistence on courtesy will have its effect.

3) Your desire to change the world.

  • You said: "Now, I don't have any ambition to change the world" but on the other hand "Can any of you see any way to increase awareness of gluten intolerance ... I've actually also considered some sort of blog (I write for a living, so blogging would be a natural), but I'm not sure I see how to make money and change the world with a blog."
  • :) I'd say you're on what used to be called the "horns of a dilemma"...you don't and you do want to change people's mind about celiac disease who are not celiac or who are unaware of it. I'd say the first thing is to decide one or the other, and how much time, money and your life you're willing to put into it if you do decide you want to affect public opinion. As a rule of thumb, start up businesses don't pay, or don't pay significantly for awhile... I do believe the ideas for public awareness campaigns will come to you, but you'll have to work through the "yes I want to change the world/no I don't" dilemma, first, so that you put your effort where your true desire on the matter is.

By the way, have you hunted up any celiac groups in your area via this website or by local means, or made connections with celiacs in your area?

Glad you joined up, SG!

Much sympathy to you for just wanting a night out without worries. On my own learning curve about dealing with celiac disease, I'm about at the point of telling people who need to know (not ones around me who don't) "I have this need....I'll be doing this" and then doing it. If I were sharing a roof with someone, however, there'd definitely need to be change of habit, tolerance and communication between us.

It keeps crossing my mind that diabetics, people with food allergies and people losing weight all have the same social problems that we celiacs do, over food: they need (PERIOD!) to eat certain foods and not others, and would like a night out without worries or being hassled. It would help them if their family and friends were supportive and accepting of their different food needs. So socially it's not like we're creatures from Mars. Celiacs may be pulling a bit more of a social load because it hasn't come into popular culture to know that the disease exists.

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Hey Centra,

Thank you so much for your reply.

I had a couple of thoughts when reading it. The first was, they (there were three friends there, but really only two -- my two closest friends in this town -- taking part) weren't so much ragging on me or mocking me. They were frustrated and angry with me because they thought they saw an obvious solution (just go change the world, Jane!) and I wasn't buying it.

One of them (who's actually my best friend anywhere, and the one who brought me the salad) basically said, Either take one of my ideas to go change the world (i.e., run dog-and-pony shows or become a restaurant consultant) or stop complaining. I suspect he regrets saying that and will tell me so today. I sent him a long email early this morning about all of this. (aha -- he just now called. I sent him off to read his email and call me back.)

The second thought relates to the horns of the dilemma: To change the world or not. I make my living writing and I do it well, and if I thought for a minute I could start a blog or write a book and actually change the world (thereby making it possible for me, my daughter, and all of us here on this board to eat out safely in any restaurant anywhere), I'd do it in a heartbeat.

But I'm so frustrated and cynical about all of this. I've tried to persuade about 10 people (some of whom have huge, obvious symptoms) to get tested or try the diet -- and only one has done anything. The rest have basically rolled their eyes. So I feel as if changing the world isn't likely and I'm therefore not much motivated to try.

I'm definitely not motivated to try any of my friends' business ideas -- they just don't appeal to me. I'd rather just keep doing what I've been doing: trying to keep myself safe in restaurants and at friends' homes, talking to restaurants I like about making things safer for me, and talking to friends who might have a gluten problem about the issue.

There is a (somewhat) local GIG group and I can attend their Christmas meeting. As for the rest of it, I think I just need to rule the topic off-limits among these friends for awhile and tell them I'll be bringing my own food, period. And I do realize I need to get a less-sulky attitude about it, like last night when a dinner takes me by surprise and I didn't eat beforehand -- but it's so hard when you're hungry!

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I don't see this as your friends really wanting you to change the world, I see it as them using you as an excuse for their bad behavior. Honestly my friends would never do that. They don't totally "get" the gluten issues but they would never attack me and tell me to change the world. At restaurants they ask if food has gluten in it and they do it in a manner that says they are not messing around.

Ya know when someone attacks you for what you have as a serious health issue, they are defending their inablity to understand the health issue. There are a lot of people in the world that can treat you better.

Don't you dare feel like you should go change the world now or that you should be doing more. IF anything point out to them that they don't get it and they are your close friends. IF the people that care about you don't get it, why waste your time with the world that has no reason to care?

:angry: I am very angry actually that your "friends" treated you in this manner and have you questioning yourself. IF you had cancer or any other OBVIOUS disease would they rag on you for being so vigilant? :(

Shame on them.

Find your support group, they understand vigilant.


~Barb

Gluten Free October 18, 2007

YIPPEE for Gluten free

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Seems like you are trying to change the world one person at a time - starting with them. It's all about the grassroots movement! I agree that telling you to go do something bigger or stop complaining is not at all nice. If they can't handle the change, then how do they expect the world to? Do they think that if you educated everyone on the issues associated with celiac that all of a sudden it would be easy for them to cook you a guaranteed gluten-free, not-CCed meal?


Gluten-Free since September 15, 2005.

Peanut-Free since July 2006.

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Thanks, Barb! Part of the problem is I'm self-diagnosed. I had a long, long talk this morning with my best friend (the salad-maker in the story), and he told me that part of the problem he's having with all this is that I refuse to see a physician about this or to rule out any other problem. I have tremendous distrust of the medical profession (and he's well aware of that). I also come by that distrust honestly -- I'm a medical writer by trade and talk to physicians often as part of that work. I've been burned by conventional medicine before (as I think most of us have).

My argument against going to a physician is, there's nothing more they can do for me than I've done already for myself -- so why bother going to a doc if I'm only going to get into an argument with him/her? My friend says he's not questioning the fact that I'm gluten intolerant, just the part about being so very vigilant. He says he wants scientific proof that gluten can lurk in Tupperware and that I shouldn't be eating stuff that I previously ate (not gluten-y stuff, but stuff at restaurants that could be CC'd or has questionable sauces). I've been trying to be very, very careful over the past three months or so, which has sparked all these disputes.

The argument between my friend and me seems to be shifting from "you need to change the world" to "I need proof and your word isn't good enough for me, it has to come from a reputable source." I'm not sure how to handle the second argument, either -- or how to handle the friend. All I know is, when I eat at home or at places that *know* how to do gluten-free (such as Bonefish or Disney restaurants), I don't get sick. When I take chances at friends' homes or restaurants that don't understand gluten-free, I often do get sick. It's hard enough trying to find food I can eat without having to justify my choices to everyone around me, too.

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Have you tried, very humbly and simply, telling your friend what you wrote above: "All I know is, when I eat at home or at places that *know* how to do gluten-free (such as Bonefish or Disney restaurants), I don't get sick. When I take chances at friends' homes or restaurants that don't understand gluten-free, I often do get sick. It's hard enough trying to find food I can eat without having to justify my choices to everyone around me, too."

I'm self diagnosed as well, and I've found that if I'm very honest with people and tell them "I can't prove this, but this has been my won experience so far" that they are willing to give me the benefit of a doubt - or at least humor me.

Let go of the wish that your friends believe you totally... all they need to do is to do as you ask them to, out of friendship, even though they have doubts about the necessity.

Pauliina

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I'd have to agree with everyone, how can people ask you to go out and change the world (as if that will keep the wheat flour out of their kitchens!) when you can't change even their actions regarding you? Also, I'd recommend that if he really wants to know WHY you have to be so careful, then he BE a best friend and GET HIS BUTT ONLINE and read this forum! I'll tell him all about how I have a valid diagnosis (not from a doctor, but I got the rash that only Celiacs can get) and that a bit of gluten makes me sick for a month, and that it gets worse and worse every time I get glutened! And then I'll tell him to stick in his hat and take his aggression issues to a cardio-kickboxing class WHERE THEY BELONG!


If you're going through hell, keep going. ~Winston Churchill

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Thanks, Barb! Part of the problem is I'm self-diagnosed. I had a long, long talk this morning with my best friend (the salad-maker in the story), and he told me that part of the problem he's having with all this is that I refuse to see a physician about this or to rule out any other problem. I have tremendous distrust of the medical profession (and he's well aware of that). I also come by that distrust honestly -- I'm a medical writer by trade and talk to physicians often as part of that work. I've been burned by conventional medicine before (as I think most of us have).

My argument against going to a physician is, there's nothing more they can do for me than I've done already for myself -- so why bother going to a doc if I'm only going to get into an argument with him/her? My friend says he's not questioning the fact that I'm gluten intolerant, just the part about being so very vigilant. He says he wants scientific proof that gluten can lurk in Tupperware and that I shouldn't be eating stuff that I previously ate (not gluten-y stuff, but stuff at restaurants that could be CC'd or has questionable sauces). I've been trying to be very, very careful over the past three months or so, which has sparked all these disputes.

The argument between my friend and me seems to be shifting from "you need to change the world" to "I need proof and your word isn't good enough for me, it has to come from a reputable source." I'm not sure how to handle the second argument, either -- or how to handle the friend. All I know is, when I eat at home or at places that *know* how to do gluten-free (such as Bonefish or Disney restaurants), I don't get sick. When I take chances at friends' homes or restaurants that don't understand gluten-free, I often do get sick. It's hard enough trying to find food I can eat without having to justify my choices to everyone around me, too.

Oh dear, you too. I too am self diagnosed and my family supports me either way. I cannot go to the Dr with no insurance but I have been for years asking them what is wrong with me and they never ever came up with an answer. I too don't have the greatest trust for the medical profession. My son almost died because of the profession. It wasn't just one dr. or nurse it was a lot of them. I was a young mother and they didn't take me serious, they brushed my concerns aside. He was starving to death and by 2 months he was looked like a child from another country. Ya know the ones they use in the ads, skin and bones with distended belly. So ya I have a hard time with Drs. Of course I will admit the right dr saved him!

Yes I think your friend if he is such a good friend needs to research for himself. I also agree with the person that said you should say to him what you said to us. That you get sick when you eat somewhere that isn't vigilant. You could ask him to come hold your hand when you get sick. Maybe if he sees the results he will get the idea.

It still burns my shorts :angry: that you have to defend yourself. It is one thing for someone to not understand but be caring it is another to make you defend yourself. ARGH If we lived in the same area you could come to my house and eat!

My family is not gluten-free by any means. BUT I am the one that does the most cooking (ok all of it). All they ever do is reheat or make a sandwhich. When I prepare food it is on a surface that never has gluten anything on it. Thing is I also never used flour in my everyday cooking much or breads for that matter so there isn't gluten lurking around. I am not getting sick from eating at home only out.

Maybe you should take him to kickboxing yourself! Sorry but this is a friend. Tell him to act like one. Friends support each other, they are there for each other.


~Barb

Gluten Free October 18, 2007

YIPPEE for Gluten free

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;) Hi Jane and welcome.

Illness changes everything and sadly it sometimes reveals the weaknesses in friendships. I recall a friend suggesting I was on a "food trip" after I literally melted, lost 40 pounds in just a few months and found that only by limiting my diet severely was I able to function at all. Or my mother being so pleased at my weight loss :o as she would much rather have a thin dying daughter than one middle aged round. Or a friend suggesting that all illness is rooted in emotion .......

I tend to think that we are the canaries in this increasingly toxic planet and that we are fortunate because our stomachs are communicating this to us.

I take my own food with me whenever I can and I sympathize with your need to ask questions.

While on holidays recently I was shocked to discover that an old friend wouldn't even concede the possiblility that a particular restaurant would do something gluten free for me. It was clear to me that she was uncomfortable with my even asking and since it was a regular haunt for her we never went.

Being a brat, when I was out one day I stopped and asked if they would do gluten free and they said YES happily and they understood about cross contamination. I never pushed it after that though because I felt like she did not want to eat there with me asking for gluten free food.

Like I said, illness changes everything.

Thanks, Barb! Part of the problem is I'm self-diagnosed. I had a long, long talk this morning with my best friend (the salad-maker in the story), and he told me that part of the problem he's having with all this is that I refuse to see a physician about this or to rule out any other problem. I have tremendous distrust of the medical profession (and he's well aware of that). I also come by that distrust honestly -- I'm a medical writer by trade and talk to physicians often as part of that work. I've been burned by conventional medicine before (as I think most of us have).

My argument against going to a physician is, there's nothing more they can do for me than I've done already for myself -- so why bother going to a doc if I'm only going to get into an argument with him/her? My friend says he's not questioning the fact that I'm gluten intolerant, just the part about being so very vigilant. He says he wants scientific proof that gluten can lurk in Tupperware and that I shouldn't be eating stuff that I previously ate (not gluten-y stuff, but stuff at restaurants that could be CC'd or has questionable sauces). I've been trying to be very, very careful over the past three months or so, which has sparked all these disputes.

The argument between my friend and me seems to be shifting from "you need to change the world" to "I need proof and your word isn't good enough for me, it has to come from a reputable source." I'm not sure how to handle the second argument, either -- or how to handle the friend. All I know is, when I eat at home or at places that *know* how to do gluten-free (such as Bonefish or Disney restaurants), I don't get sick. When I take chances at friends' homes or restaurants that don't understand gluten-free, I often do get sick. It's hard enough trying to find food I can eat without having to justify my choices to everyone around me, too.

I hear you.

I don't trust the medical profession, in fact I am convinced that if I had allowed them to do the tests they wanted I would be in even worse shape than I am now. I am convinced that the reason I am getting well is because I don't trust them. :lol::lol::lol:

This board, Racheville in particular (the OMG thread of thousands of pages), has been a life saver, literally, a place to make new friends who do get it, who don't second guess your illness, who believe you and who know how to laugh in the midst of it.

As to business and changing the world......................mmmmmmmmmmmmm.......................I liked many of your ideas and have thought of some of them myself. I think the education thing is a bust though, I don't think there is a sufficient market for it yet, maybe in a few years when half the population is going gluten free out of desperation to feel better. :lol:

I've invented a new frozen food confection category and am working towards bringing it to the market place. They are so good celiacs will be hiding them from their gluten guzzling friends. :lol:


A family with Celiac disease, two brothers and two sisters.

Lyme Disease, Diagnosis October 19, 2006

May 2006 - December 2008 Gluten and Dairy Free

December 2008, while seeing improvement on the gluten free diet, I did not recover and so in December of 2008 began the SCD and now have hope for recovery.

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Illness changes everything and sadly it sometimes reveals the weaknesses in friendships.
Boy that can be the truth. I think a lot of people don't know how to handle illness. Others do, or just don't care whether you're sick or well, you're their friend. I think physical impediments and illness make some people nervous...and I think I've seen irritation at being inconvenienced themselves. It's been a mixed bag for me, but I'd just as soon find out who my friends are in tough times...it makes the good times sweeter.

I recall a friend suggesting I was on a "food trip" after I literally melted, lost 40 pounds in just a few months and found that only by limiting my diet severely was I able to function at all. Or my mother being so pleased at my weight loss :o as she would much rather have a thin dying daughter than one middle aged round. Or a friend suggesting that all illness is rooted in emotion .......
That's terrible, rinne. Overall people in my life have been OK, but I've had a couple or three lulus. The husband of one of my friends was convinced it was all in my head. And then there was my brother, who seemed to have preferred to think of me as sick...he actually refused the news that I had found the key to things and was returning to health.

I tend to think that we are the canaries in this increasingly toxic planet and that we are fortunate because our stomachs are communicating this to us.
I do, too. This is very close to the way I think about it.

While on holidays recently I was shocked to discover that an old friend wouldn't even concede the possiblility that a particular restaurant would do something gluten free for me. It was clear to me that she was uncomfortable with my even asking and since it was a regular haunt for her we never went.
That's stinky...back to your first sentence quoted at the top of this post

As to business and changing the world......................mmmmmmmmmmmmm.......................I liked many of your ideas and have thought of some of them myself. I think the education thing is a bust though, I don't think there is a sufficient market for it yet, maybe in a few years when half the population is going gluten free out of desperation to feel better. :lol:

I've invented a new frozen food confection category and am working towards bringing it to the market place. They are so good celiacs will be hiding them from their gluten guzzling friends. :lol:

Good for YOU, Rinne...how about setting up a site with a secret password with the info about how to get it, and put the password in your profile here at the site.

Seeing the partial response (which surprised me, but it's happening) of restaurants to people who want to eat gluten free, and taking a good look at the gluten free products, you know, I think public opinion is going to change through consumer power. That's not a very high minded conclusion, but I bet celiacs buying and demanding products will be the thing...I only read the medical journal articles from time to time, when I'm going to find out something specific, but I get the impression that the Western medical profession is behind the curve on "getting" celiac disease. Celiacs, because they suffer the effects, HAVE to find out what works and what doesn't. There are tons of things the medical establishment hasn't studied yet. I don't think it's been studied and demonstrated, and then taught in medical school what the compound effects of celiac are...let alone the relation of it to all the toxins rinne mentioned.

An excellent quality product that hits the tastebuds of celiacs and non celiacs will be a winner, I think.

Rinne, when you get it ready, let us know, and we can fan out all over various continents and demand that our greengrocers stock it! We could picket their email inboxes... Not a bad dream...

Sailing Girl, how about a product profile blog? Product, it's history, maybe pictures of how it's produced (educating your readers on CC at the factory), recipes, testimonials...your tuppence everywhere throughout...

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These posts made me remember that when my husband first got sick his closest friends abandoned him.

The story about the guy who wants confirmation of the CC of the Tupperware is disturbing to me. What's that expression? If you're really a friend you don't need an explanation, or something like that.

This is not an original thought...someone on this Board years ago said this one and I am loosely using it for this situation:

To the skeptic about CC in Tuperware: Ok, fill Tupperware with rat poison and let it stay in there a day or two, then empty out and wash. Then fill it with great tasting food. Would Mr. Skeptic be willing to eat the food out of this piece of Tupperware?


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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To the skeptic about CC in Tuperware: Ok, fill Tupperware with rat poison and let it stay in there a day or two, then empty out and wash. Then fill it with great tasting food. Would Mr. Skeptic be willing to eat the food out of this piece of Tupperware?

That is an AWESOME analogy! I'm so using that (if you don't mind....)


If you're going through hell, keep going. ~Winston Churchill

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LOVE the rat poison analogy!

I think a problem I'm having with my two friends is that I didn't go absolutely gluten-free instantly -- it's been more of a process that's taken several years (one I'll detail in the intro thread I swear I'll write soon!). And they never really realized gluten's full effects on me. So they haven't always been as supportive as I'd like them to be. Now that I've calmed down, I prefer to think of them as uninformed rather than mean -- and they both have gone to bat for me on this, too, with stores and restaurants. So while on Monday night I was strongly tempted to walk out and find some new friends, I'm gradually warming to the idea of keeping them around (on probation, of course), for awhile longer and see how it all goes.

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......It's been a mixed bag for me, but I'd just as soon find out who my friends are in tough times...it makes the good times sweeter.

.......

Rinne, when you get it ready, let us know, and we can fan out all over various continents and demand that our greengrocers stock it! We could picket their email inboxes... Not a bad dream...

....

Thanks for your response and I completely agree with you about the mixed bag. :)

Overall though I would have to say that I am grateful and that I suspect my life will be healthier and I will live longer for having to pay attention to these intolerances. I see lots of people around me that don't look all that healthy who think they can eat everything!!!!

I love the image of you all fanning out across the globe demanding "rinnebars". :lol: Thanks.

That is an AWESOME analogy! I'm so using that (if you don't mind....)

I agree. I often use peanut allergies to illustrate my point about the quantities of gluten that can make me ill but I think rat poison is a better example.


A family with Celiac disease, two brothers and two sisters.

Lyme Disease, Diagnosis October 19, 2006

May 2006 - December 2008 Gluten and Dairy Free

December 2008, while seeing improvement on the gluten free diet, I did not recover and so in December of 2008 began the SCD and now have hope for recovery.

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