And The Misinformation Begins....

[Lawspike]

Here we go. I received a phone call from my little brother this evening (he is 31). He called, cheerfully, to inform me that his wife knows several people with Celiac disease and they don't have to cut anything out of their diet. She eats out with them, they eat bread, blah blah blah... and I am sure you have heard the rest. I started to explain to him certain factual information, and he quickly refuted most of it. I can see how well this disease has gone mainstream...

BTW, I RETURNED the gluten-free Diet book today. Was most unimpressed, and decided after about 25 pages... decided it was not worth aggravating myself with it.

This is going to be a LONNNNNNNNNG process of elimination! I am just finishing day one ... and I hope tomorrow will be better. And so on.

[lizard00]

Here we go. I received a phone call from my little brother this evening (he is 31). He called, cheerfully, to inform me that his wife knows several people with Celiac disease and they don't have to cut anything out of their diet. She eats out with them, they eat bread, blah blah blah... and I am sure you have heard the rest. I started to explain to him certain factual information, and he quickly refuted most of it. I can see how well this disease has gone mainstream...

BTW, I RETURNED the gluten-free Diet book today. Was most unimpressed, and decided after about 25 pages... decided it was not worth aggravating myself with it.

This is going to be a LONNNNNNNNNG process of elimination! I am just finishing day one ... and I hope tomorrow will be better. And so on.

Hang in there! I just spent the weekend with my brother, who I'm SURE has celiac, he has even told me he wants to go gluten-free, but then he wants to tell me that barley malt in beer is ok... blah blah blah. He's in denial and is not ready to change, sounds like those celiac friends are the same.

Keep educating yourself! For better reading, get Celiac Disease: A Hidden Epidemic by Peter Green, or Gluten-Free for Dummies by Danna Korn. Very informative and the information is actually accurate...

[Darn210]

I hear ya . . . I found out that my daughter's friend's father has Celiac disease (did you follow that ). He was diagnosed when he was a kid and says it "flairs up" if he eats too much gluten. My daughter knows he has Celiac disease . . . has she seen him eating whatever he wants? I don't think he would ever offer her anything with gluten, but what about the example he is setting?

. . . and yes, tomorrow will be better. It's a steep learning curve and this site is a great resource. You'll do great.

[Mother of Jibril]

. . . and yes, tomorrow will be better. It's a steep learning curve and this site is a great resource. You'll do great.

...and you can be "that celiac" everyone knows who sets a good example by sticking to a gluten-free diet in both good times and bad

[mommida]

We have all heard some nonsense at some point.

Some one tried telling me that Girl Scout cookies should be OK because they saw some one with "those food allergies" eating them.

I should be getting an Oscar nomination for keeping a staight face during that!

[jerseyangel]

When I was first diagnosed, my husband's aunt told me that she has a friend with Celiac, and that after a while on the diet, I can "cheat once a month or so.....".

[ang1e0251]

Wasn't there another poster who's dr said they were a mild positive so they could eat gluten a few times a month? Ha...sometimes I wish people who insist they know more about your condition than you do could walk a mile in our shoes...spend a day in our bathroom...

[oceangirl]

I am BLOWN AWAY that anyone with gluten issues can or would "cheat"- they CLEARLY do NOT react the way I do because I am AFRAID of gluten, that is how sick it makes me and how much pain is involved- and I have lived through considerable pain before; kidney stones, scoliosis, giving natural birth to a 10 pound son with a head circumference of 12 inches and so on...

I admit I am a bit jealous of being able to "cheat" or to treat this as a minor inconvenience- lucky them! (Until they get cancer or something, of course...)

lisa

[jerseyangel]

I am BLOWN AWAY that anyone with gluten issues can or would "cheat"- they CLEARLY do NOT react the way I do because I am AFRAID of gluten, that is how sick it makes me and how much pain is involved

I am too, Lisa. I can't imagine ever wanting to "cheat" with gluten. With the way I react to accidental amounts of cross contamination, I shudder to think what a full blown portion of gluten would do to me.

I spent too many years sick to ever even consider such a thing.

[oceangirl]

Thanks, Patti- sometimes I wonder if I'm nuts! I'm glutened right now from some strange cc place I once again can't pinpoint and it feels like it's never going to stop! It must be very nice not to have this response to even miniscule amounts of gluten!

Take care,

lisa

[zero]

At least for me, I didn't have any obvious reactions to gluten prior to diagnosis (I have a lot of reaction now). I even asked my doctor why I couldn't ignore it. Only later did I connect the dots with depression and not feeling well which would come and go. And then I learned more about the consequences of not going gluten free with celiac.

Having celiac disease and eating gluteny foods because you don't have digestive problems is like having heart disease and eating high cholesterol foods because you don't feel heart burn.

[jerseyangel]

Thanks, Patti- sometimes I wonder if I'm nuts! I'm glutened right now from some strange cc place I once again can't pinpoint and it feels like it's never going to stop! It must be very nice not to have this response to even miniscule amounts of gluten!

Take care,

lisa

Lisa--You're not nuts! I'm going through the very same thing at the moment....I broke my own rule of not trying more than one "new" thing at once and I got caught!

[JillianLindsay]

A friend of mine rolled her eyes at me and said she has IBS and lactose intolerance and she just takes a pill and/or suffers the consequences ... I told her that before I got diagnosed I started having seizures due to the severe stress my body was under. Not quite the same as "a little upset stomach".

On a positive note, my soccer team wanted to go out to eat at an A&W for fast food after a game and another teammate advocated for me and said "let's go somewhere Jillian can eat too"! Very sweet

We have all heard some nonsense at some point.

Some one tried telling me that Girl Scout cookies should be OK because they saw some one with "those food allergies" eating them.

I should be getting an Oscar nomination for keeping a staight face during that!

[tarnalberry]

A friend of mine rolled her eyes at me and said she has IBS and lactose intolerance and she just takes a pill and/or suffers the consequences ... I told her that before I got diagnosed I started having seizures due to the severe stress my body was under. Not quite the same as "a little upset stomach".

When someone tells me that, I respond with "well, if you want to be sick, that's up to you. I don't like to feel as sh!$$y as I do after eating gluten, so... I don't!"

[Puddy]

When I was first diagnosed and explained to my co-workers about being gluten free, they were very nice about being careful around me in the lunchroom and making sure there was something I could eat on special occasions. About 6 weeks later, another woman I work with said she also has Celiac Disease, but just a touch of it. Every Wednesday - Bagel Day - she sits down and eats one and then goes out to lunch for pizza....it's her day to 'cheat'. So now I have people coming to me and asking me why I have to be so careful if she doesn't have to, that maybe I'm just a tad paranoid. It's verrrrrrrrry frustrating!

[psawyer]

Puddy, you're not paranoid, but that co-worker of yours, well...

[Darn210]

When I was first diagnosed and explained to my co-workers about being gluten free, they were very nice about being careful around me in the lunchroom and making sure there was something I could eat on special occasions. About 6 weeks later, another woman I work with said she also has Celiac Disease, but just a touch of it. Every Wednesday - Bagel Day - she sits down and eats one and then goes out to lunch for pizza....it's her day to 'cheat'. So now I have people coming to me and asking me why I have to be so careful if she doesn't have to, that maybe I'm just a tad paranoid. It's verrrrrrrrry frustrating!

This is one of the worse case (public relations) scenarios in my opinion . . . The uninformed (face it, how much did you really know before you had to live it) public sees two extremely different interpretations of "living with Celiac Disease". How are they to know which is the right way? How many are going to go home and research just out of curiousity? . . . Grrrrrrrr.

[ang1e0251]

When I was first diagnosed and explained to my co-workers about being gluten free, they were very nice about being careful around me in the lunchroom and making sure there was something I could eat on special occasions. About 6 weeks later, another woman I work with said she also has Celiac Disease, but just a touch of it. Every Wednesday - Bagel Day - she sits down and eats one and then goes out to lunch for pizza....it's her day to 'cheat'. So now I have people coming to me and asking me why I have to be so careful if she doesn't have to, that maybe I'm just a tad paranoid. It's verrrrrrrrry frustrating!

Puddy,

Are these coworkers the same kind of people who make a scene about second hand smoke? They can't see if there is lung damage so why do they have to be so careful? Aren't they being just tad paranoid?

[shendler]

People really do not understand what it is to be celiac and before knowing I had celiac I had no idea either. Before I stopped eating gluten I was out to eat and this woman ordered a hamburger without a bun for her son. The burger came with a bun and she told them they would have to cook a new burger. I thought the woman was just being annoying that taking off the bun would be the same exact thing.

Since I've stopped eating gluten I've been asked if I will ever outgrow it. I've been bought cereal for people with diabetes (wheat is the first ingredient ). People just don't know anything about it because it's not mainstream in the media (nobody makes commercials for it, there aren't special cooking shows for it on tv, etc).

[Jestgar]

Well, I'm fairly obnoxious, so I would shrug and say "I react immediately, she'll react by dying of cancer in ten years, not my problem" and walk away.

[GFinDC]

Way to be subtle Jestgar!

On the misinfo front, a while back I ate with family at an IHOP. My sister and I (she's celiac also) thought it would at least be worthwhile to ask for Van's gluten-free waffles on the off chance they might have them. I asked the young waiter and got a blank stare. He wisely went back to the manager to double check before answering. When he returned he proudly informed us that all the IHOP pancakes are gluten free! No problem, order anything we want! We didn't order pancakes...

[Puddy]

LOL....don't worry, guys! I've set everyone straight. I've even tried talking to her...you know, the old there's no such thing as being a little bit pregnant, same holds true for Celiac Disease speech. She was very gracious about it and said she understood, but it was too hard to follow the diet. I do notice that she walks the other way when she sees me coming now .

[oceangirl]

Puddy,

Man, that must be absolutely miserable and frustrating.

Patti, I'm SO sorry! I hope you feel better soon- this CAN still be frustrating, that is FOR SURE!

Get well!

lisa

[Lawspike]

Well, I'm fairly obnoxious, so I would shrug and say "I react immediately, she'll react by dying of cancer in ten years, not my problem" and walk away.

That sounds exactly like what my response has been. Most of my close friends are really supportive and want to learn as much as possible... some of my less educated acquaintances can go for a loooong walk on a short pier. I am too busy trying to get well, and simply have little time to educate STUPID people!

[JillianLindsay]

My soccer team is sponsored by Boston Pizza and they happily informed me I could have french fries, cactus cut fries, chicken wings.... you get the idea. I had a bland salmon lol

Way to be subtle Jestgar!

On the misinfo front, a while back I ate with family at an IHOP. My sister and I (she's celiac also) thought it would at least be worthwhile to ask for Van's gluten-free waffles on the off chance they might have them. I asked the young waiter and got a blank stare. He wisely went back to the manager to double check before answering. When he returned he proudly informed us that all the IHOP pancakes are gluten free! No problem, order anything we want! We didn't order pancakes...