Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

And The Misinformation Begins....

Lawspike

Recommended Posts

Lawspike Rookie
Lawspike
Posted

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.

:(

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


lizard00 Enthusiast
lizard00
Posted
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... :lol:

Darn210 Enthusiast
Darn210
Posted

I hear ya . . . I found out that my daughter's friend's father has Celiac disease (did you follow that :P ). 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 Enthusiast
Mother of Jibril
Posted
. . . 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 Enthusiast
mommida
Posted

:rolleyes: 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 Proficient
jerseyangel
Posted

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 Contributor
ang1e0251
Posted

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...

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


oceangirl Collaborator
oceangirl
Posted

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 Proficient
jerseyangel
Posted
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 Collaborator
oceangirl
Posted

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 Newbie
zero
Posted

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 Proficient
jerseyangel
Posted
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! :angry::D

JillianLindsay Enthusiast
JillianLindsay
Posted

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 :)

:rolleyes: 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 Community Regular
tarnalberry
Posted
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 Explorer
Puddy
Posted

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 Proficient
psawyer
Posted

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

Darn210 Enthusiast
Darn210
Posted
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 Contributor
ang1e0251
Posted
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 Rookie
shendler
Posted

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 :huh:). 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 Rising Star
Jestgar
Posted

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 Veteran
GFinDC
Posted

Way to be subtle Jestgar! :D

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 Explorer
Puddy
Posted

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 Collaborator
oceangirl
Posted

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 Rookie
Lawspike
Posted
  • Author
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! :D

JillianLindsay Enthusiast
JillianLindsay
Posted

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! :D

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...

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Jsingh
      - Jsingh replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

      Hi, My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine...
    2. lizzie42
      - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin. He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her...
    3. trents
      - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified...
    4. trents
      - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you...
    5. Paulaannefthimiou
      - Paulaannefthimiou posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

      Are Bobresmill gluten free oats ok for sensitive celiacs?
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,858
    • Most Online (within 30 mins)
      7,748
    Beckyq
    Newest Member
    Beckyq
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Jsingh
      Son's legs shaking

      By Jsingh · Posted

      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
    • trents
      Bob red mill gluten free oats

      By trents · Posted

      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      Disaccharide deficient, confusing biopsy results, no blood test

      By trents · Posted

      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Bob red mill gluten free oats

      By Paulaannefthimiou · Posted

      Are Bobresmill gluten free oats ok for sensitive celiacs?
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.