Jump to content

Follow Us:  Twitter Facebook RSS Feed            




   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Celiac.com Sponsor:                                    


Photo
- - - - -

Do People Try To Make You Prove Your Intolerance?


  • Please log in to reply

35 replies to this topic

#16 bartfull

 
bartfull

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 2,604 posts
 

Posted 14 October 2013 - 04:15 PM

Karen is right. There are TONS of celiacs who eat corn and soy and dairy and yeast with no problems at all! SOME of us have additional intolerances, but even if these foods make us feel crappy, they are not true gluten reactions. I, for example, am intolerant to corn. But my reactions to corn are skin related, while gluten has me running to the nearest restroom. And dairy? I eat plenty of white cheddar and a big dish of ice cream every night. No problems at all.

 

There is a lot of misinformation out there on the internet. We all need to get our info from reputable sources, such as the ones Karen posted. Plus, think about it - why would any company risk its reputation and its sales by selling "gluten-free" foods that contain corn or yeast or soy or dairy, if it were going to make celiacs sick? Wouldn't make any sense, would it? They'd be out of business in a hurry.

 

Stick around and read some of our stories. Check out the sites Karen posted. You'll learn a lot, and maybe we can even help you figure out your other intolerances. Some of us lose foods for a while, but once we heal we get them back. I hope this is true for you and that you will soon be feeling better. :)


  • 0

gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


Celiac.com Sponsor:

#17 YouAreWhatYouFeat

 
YouAreWhatYouFeat

    New Community Member

  • Members
  • Pip
  • 5 posts
 

Posted 15 October 2013 - 01:25 AM

You really should understand that this man is not a doctor.

There is no validity to "cross-reactors" to gluten.

NONE.

 

And this is posted at the bottom of the page you reference on his website as "medical info" Check it out.

 

Disclaimer: The contents of this site are for educational purposes only. Nothing here should be construed as medical advice. Nothing here is a substitute for actual medical care. Consult a qualified healthcare professional.

All I am suggesting is that you keep an open mind about this before shutting it down. Have you researched this before you said it wasn't true? Have you tried eating corn, dairy, and yeast in one meal and documented any changes in how you feel? There are numerous sources of this information, not just from Dr.Clark. I am open minded to the fact that it isn't true, but let's make sure that it isn't before we shut it out. I am going to the gastroenterologist this week and will ask him. Here is another source of infor with the same thing. I will just keep finding more sources for you. There are foods that are cross confused with gluten. Here is a list of foods that can be confused:

 

http://www.examiner....-reactive-foods


  • 0

#18 Juliebove

 
Juliebove

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,650 posts
 

Posted 15 October 2013 - 02:09 AM

Weirdly enough, I ran into one on Saturday at the gluten-free Expo. I was checking out a shake which I shouldn't have bothered because they all have soy right? But I was like maybe one is in existence that doesn't and this is it and I can taste it for free and it won't taste like crap! Nope, soy.

 

Now, I'll explain quick what my problem is with soy. I have a condition called idiopathic intercranial hypertension. Part of my treatment is following a low tyramine diet and avoiding trigger foods that cause me to produce obscene amounts of cerebrospinal fluid (CSF) in a very short amount of time. One of those foods for me is soy. It's tricky for me because soy lecithin doesn't bother me, but soy oil does so regular allergen labeling is not accurate for me and I have to count on the actual ingredient list. (Soy oil is not required to be listed as an allergen which is terribly frustrating for me.) If an episode is triggered, I will get a blinding migraine, nerve pain beyond imagining down the left side of my body and will lose vision in my left eye. The key being the vision loss. My eye doctor has warned me that my blood vessels in my right eye are so intertwined and twisted around each other that if my condition ever starts affecting my right eye also it could be immediately and permanently catastrophic. (He didn't expound but I got the idea.) Without that complication, I am at risk of permanent vision loss in my left eye.

 

Keeping that in mind, one of the guys at the shake booth asked me what my problem is with soy. I rattled off the name of my condition, that it is managed with diet and said in a quite sarcastic but joking and light tone that it's "fun." He said he wouldn't use that word to describe it, it was as if sarcasm and humor were things he didn't understand. He then went on to explain all the health benefits of their shakes and how they have helped so many people and that maybe if I just tried them I would find out that the soy in them wouldn't be a problem because somehow magically because it's in that particular shake it wouldn't make my day the most horrid day ever. I've rarely ever wanted to hit someone so much in all my life. Instead I smiled and nodded and walked away and didn't let him ruin my day.

 

But yes, apparently if you put soy in a shake it magically won't make me blind for a day or 3 or risk permanent injury to me... I just can't fathom how it is that of all the places in the world I could run into this kind of twit, I managed to find one there. Besides, what kind of jerk tries to talk someone into eating food that will make them sick? None of us go around trying to talk people into eating rat poison, because just a little taste won't make you that sick.

I avoid most forms of soy because I had a thyroid condition.  Although I still have a goiter, I am not hypo or hyper like I used to be.  I used to eat a lot of soy too. 

 

Some lady handing out samples of something tried to give me one.  Can't remember for sure now what it was, but I do think it was shake which I wouldn't have taken even if I could have it because I don't like the texture of shakes. 

 

When I told her that I couldn't have soy, she asked why and then gave me a skeptical look and said that she didn't know of a connection between soy and thyroid.  And apparently it is a rather complicated one.  All I know is once I stopped the Tiger's Milk bars, the roasted soybeans, Boca burgers and soy bacon, my hypo and hyper problems went away.


  • 0

#19 Juliebove

 
Juliebove

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,650 posts
 

Posted 15 October 2013 - 02:11 AM

I  do get bothered when people question me in detail about my limitations, because they doubt them.  There is also the ones that give you dirty looks or out and out gasps when you need to ask about the ingredients in the foods!  Often, I think it does stem out of a honest concern for me.  Yesterday, I realized someone knew that I couldn't have grain.   He thought of a 10 grain cereal recipe and began with several grains.  I shook my head as he went down the list and in the end I could have flax and sesame.  He didn't have a malicious intent, I think it didn't register or he didn't understand it.  That is what I usually try to think when people make mistakes such as this.  They don't understand, so if I can drop the subject, I do.

 

 I have been thinking about this quite a bit lately and figure that I have been too concerned about what others feel about my reactions.  I think that I am the "expert" on my own reactions; I know when I have them.   I may not always understand them or where they come from, but nobody can tell me whether I had a reaction or not.  I can't afford to worry about whether people will trust me about it.  I need to make the decisions that make my healing possible.  It is working, so I can just trust my judgment!  When hearing about other people's strange reaction I just trust what they say and feel compassion or try to tell remedies that have worked for me.  Sometimes, a pat on the back or to know another has felt the same is all they need.

 

.

That multi grain thing really gets me!  I can't have rye or oats and daughter can't have flax.  If it's multi grain, chances are those things are going to be in there.  People also don't get that we won't eat things if we don't know what is in them.


  • 0

#20 Juliebove

 
Juliebove

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,650 posts
 

Posted 15 October 2013 - 02:14 AM

"Are you sure you can't have dairy? Why don't you try it again! Who diagnosed you? Oh! That's not a *real* Dr. They did the wrong test! That test is not legitimate! Sorry to tell you this but you just wasted your money! You can't believe those test results. Too many false positives! On and on and on like that. Have even seen people attack other people for their symptoms and try to tell them that they are psychological and can't be related to food!"

 

If anyone said any of those things to me they would be shown the door. RIGHT NOW!

Thankfully I don't get a lot of that in real life.  I do get some. But I have seen it a lot on the Internet.  I don't care if they don't believe in the testing methods I used.  I only know that since I stopped eating the various foods, I am no longer sick all the time.  Lots of maladies cleared up.  So clearly to me, I can't have those foods.


  • 1

#21 Juliebove

 
Juliebove

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,650 posts
 

Posted 15 October 2013 - 02:16 AM

Funny you should bring this up.  I am going through "an issue" with my mother in law right now.  I've been gluten-free for 2 years.  She knows this.  But lately she's been having issues with it.  Unfortunately we both have strong personalities and I have a feeling the whole situation will come to a head soon with a large fight.

 

Our house is semi-gluten free.  We only have bread and beer in the house and my family knows to be careful with both.  They don't mess with my peanut butter or my butter dish.  And if they want a sandwich, they have to make it themselves.  And they also know that anything I am cooking for the family will be gluten free.

 

I just got back from a week at the beach with my entire family. My son is seven.  At home when he wants a pb&j, either his father makes it for him or he makes it himself.  My husband had to leave early from vacation, so when DS wanted a sandwich, he had to make it himself.  He knows how.   My MIL threw a fit and acted like I was abusing the boy because I was making him fix his own sandwich.  And she doesn't get it why I don't want to touch bread in any way, shape or form.  I'd ask my husband to grab a bun for DS's hot dog and MIL will make snarky little comments like, "We need to go buy you some wipes so that you can touch the bread and then wipe your hands."  Ugh, like I would want to touch poison and "just use some wipes afterwards" to get it all off.  And hubby could care less about fixing sandwiches or grabbing buns.  He doesn't mind.  DS even knows to wash his hands afterwards and to try and not get me sick.

 

She also kept making little comments about what I was eating.  I brought a bunch of my own food with me, so I wouldn't have to worry about being cross-contaminated by the 5 gluten-eating kids who were there, plus all the adults.  So she would fix spaghetti and say, "I know you don't want any of this."  Ummm...no, I really don't because I'd rather not be sick for 6 weeks.  My SIL was watching all this go down.  We were in the car by ourselves one night and she said to me, "It seems like mom is testing  you about the gluten thing.  It's almost like she doesn't really believe that you can't eat stuff and have to be as careful as you are."   You would think after two years of watching me bring my own food with me, turn down food from people, asking about gluten free items every time we go out to eat, changing my eating habits, etc, you would think she would finally get it. 

 

But I also think part of the problem is that she glutened me one time and really hasn't gotten over that.  She was making her traditional Christmas eve dinner of shrimp.  It's naturally gluten free, but she served it in a bowl that she had used to make bread in before and I got sick on the way home from her house.  I can't remember if I mentioned it to her or if my husband did, but ever since then she's been a little crazy about the gluten thing.  Almost like she doesn't believe I got sick at her house.

Oh yes!  I get that too.  "It won't hurt you to TOUCH it!"  Well, yes.  I get a rash.  So I won't.


  • 0

#22 Juliebove

 
Juliebove

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,650 posts
 

Posted 15 October 2013 - 02:18 AM

I have been diagnosed with Latent Celiac Disease and I had Leaky gut Syndrome. When I told everyone, I recieved comments like, "That's not even real....Iv'e never heard of it" and "Wow, a little won't kill you....you have had gluten for how many years?" Then I was in the store looking for yeast free bread since the protein in yeast is so similar to that in gluten that your body reacts the same way to it. My boyfriend of over 5 years said to me, "Oh god, this is just another little phase of yours." I think the problem is that there isn't enough education on Celiac or how gluten effects your body. This way, all of us with real isssues don't feel like we are making up a problem or something. Thankfully, my boyfriend and others around me have been alot more supportive recently! I guess the 6months pregnant look, gas, and other not so pretty symptoms finally proved to them why I need to be very careful about what I eat.

Oh yes, the kill you thing!  Lots of things won't kill you.  But they are not pleasant.  I suppose I could stick needles in my eye.  That problably won't kill me either.  Why do people have to be so extreme?


  • 0

#23 IrishHeart

 
IrishHeart

    Warrior Princess

  • Advanced Members
  • PipPipPipPipPipPip
  • 10,558 posts
 

Posted 15 October 2013 - 05:30 AM

All I am suggesting is that you keep an open mind about this before shutting it down. Have you researched this before you said it wasn't true?

 

That's all I do is research, hon. :)

I have told you there is no evidence of foods "cross-reacting" like gluten. The leading celiac researchers have made this clear as well..

 

If you feel those foods bother you, don't eat them. 

But to say they are "cross-reactors with gluten" so celiacs cannot eat them--- is just plain incorrect.

 

Karen has provided the links for you to read.

If you wish to believe random blogs on the internet, that's your choice, of course.

 

I wish you all the very best as you heal.


  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#24 kareng

 
kareng

    HO! HO! HO!

  • Moderators
  • PipPipPipPipPipPip
  • 14,310 posts
 

Posted 15 October 2013 - 05:58 AM

All I am suggesting is that you keep an open mind about this before shutting it down. Have you researched this before you said it wasn't true? Have you tried eating corn, dairy, and yeast in one meal and documented any changes in how you feel? There are numerous sources of this information, not just from Dr.Clark. I am open minded to the fact that it isn't true, but let's make sure that it isn't before we shut it out. I am going to the gastroenterologist this week and will ask him. Here is another source of infor with the same thing. I will just keep finding more sources for you. There are foods that are cross confused with gluten. Here is a list of foods that can be confused:

 

http://www.examiner....-reactive-foods

 

 

Yes.  I have eaten all those things in one meal and by  themselves.  No problem. 

 

On this Forum, we ask that you provide reliable research to back up any claims that are not widely accepted.  Posting random blogs and websites that sell a product are not medical or scientific proof.   I went to the International Celiac Disease Symposium because I wanted to learn more about my disease.  If you were there, you heard many times the doctors and researchers saying there is no valid scientific evidence for "cross-reactivity" in Celiac Disease.


  • 0

santa-dance.gif

 

Once again, we come to the Holiday Season, a deeply religious time that each of us observes, in his own way, by going to the mall of his choice. - Dave Barry
 
“The main reason Santa is so jolly is because he knows where all the bad girls live.”  - George Carlin
 
“One can never have enough socks," said Dumbledore. "Another Christmas has come and gone and I didn't get a single pair. People will insist on giving me books.”  - J.K. Rowling, Harry Potter and The Sorcerer's Stone
 
 
 
 
 

 


#25 Celtic Queen

 
Celtic Queen

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 286 posts
 

Posted 15 October 2013 - 07:49 AM

 

Your MIL sounds like a real winner. (I may have a lot of pent up MIL hate atm and am willing to aim it at any moderately apt target.)

Adalaide, sounds like we need to get together over a few gluten-free glasses of wine and swap MIL stories :D 


  • 0

Blood tested 8-11 positive, Biopsy 9-11 negative (long story, most gastro drs. are morons)

gluten-free 7-11, Dairy Free (mostly) 8-13 - Everything but butter.  Can't live life without butter....
 

DS - negative blood test, just diagnosed with ADD and other learning disorders, DNA test positive - high risk

Issues related to gluten: depression, low iron, hair loss, positive ana test for lupus, low vitamin D, headache, sinusitis, environmental allergies, brain fog, GI problems, weight gain....the list goes on....


#26 Adalaide

 
Adalaide

    It needs to be about 20% cooler.

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,449 posts
 

Posted 15 October 2013 - 08:36 AM

Adalaide, sounds like we need to get together over a few gluten-free glasses of wine and swap MIL stories :D 

 

My guess is we could both end up drunk in an hour. :lol: We'd probably both cry, and laugh til we cry.

 

Just keep telling yourself "it's child abuse for him to make his own PB&J!!!" every time he does it and try not to crack up like a crazy woman. :P


  • 0

"You don't look sick or anything"

"Well you don't look stupid, looks can be deceiving."

 

Celiac DX Dec 2012

CRPS DX March 2014


#27 Adalaide

 
Adalaide

    It needs to be about 20% cooler.

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,449 posts
 

Posted 15 October 2013 - 08:47 AM

All I am suggesting is that you keep an open mind about this before shutting it down. Have you researched this before you said it wasn't true? Have you tried eating corn, dairy, and yeast in one meal and documented any changes in how you feel? There are numerous sources of this information, not just from Dr.Clark. I am open minded to the fact that it isn't true, but let's make sure that it isn't before we shut it out. I am going to the gastroenterologist this week and will ask him. Here is another source of infor with the same thing. I will just keep finding more sources for you. There are foods that are cross confused with gluten. Here is a list of foods that can be confused:

 

http://www.examiner....-reactive-foods

 

What IH and Karen have been pointing out is that there is irrefutable, scientific evidence that cross-reactivity simple does not exist. If every expert in the field who has published peer reviewed studies says so, and the experts speaking at an international symposium on celiac says so it removes all doubt. There is no reason left to keep an open mind.

 

Something I'd like to suggest you keep in mind when you look for information on the internet. When finding information, find out if the person you are getting it from is an actual doctor with a medical degree or only calls themselves doctor. Find out if they are an actual doctor if they have published peer reviewed studies, if they don't publish their studies for peer review that means they are possibly afraid that experts will refute the evidence. Find out if the person is selling anything. Everyone selling something will always put forth information in support of what they are selling, this information is rarely trustworthy unless it can be found available from a second reputable (medical) source. Some sites will have a lot of information and be selling something but will list sources for their information at the bottom of their site, much like a research paper you wrote in school. Dig a little, find out who they are sourcing, are those sources reputable?

 

What I'm saying is, just because someone calls themselves a doctor doesn't make them one and doesn't make them trustworthy. Look into things and find accurate information. It is quite possible that yeast can make you sick, but that is because you are reacting to the yeast and nothing else. Cross-reactivity is simply a made up thing by someone trying to make a quick buck to scam people.


  • 0

"You don't look sick or anything"

"Well you don't look stupid, looks can be deceiving."

 

Celiac DX Dec 2012

CRPS DX March 2014


#28 kareng

 
kareng

    HO! HO! HO!

  • Moderators
  • PipPipPipPipPipPip
  • 14,310 posts
 

Posted 15 October 2013 - 09:01 AM

My guess is we could both end up drunk in an hour. :lol: We'd probably both cry, and laugh til we cry.
 
Just keep telling yourself "it's child abuse for him to make his own PB&J!!!" every time he does it and try not to crack up like a crazy woman. :P



My 20 yr old son still tries that on me! It didn't work at 6 is isn't working at 20! And they helped with their laundry - one started at 4 & the other at 2 and were completely doing their own laundry by 10/11. How did Child protective Services let this happen?
  • 1

santa-dance.gif

 

Once again, we come to the Holiday Season, a deeply religious time that each of us observes, in his own way, by going to the mall of his choice. - Dave Barry
 
“The main reason Santa is so jolly is because he knows where all the bad girls live.”  - George Carlin
 
“One can never have enough socks," said Dumbledore. "Another Christmas has come and gone and I didn't get a single pair. People will insist on giving me books.”  - J.K. Rowling, Harry Potter and The Sorcerer's Stone
 
 
 
 
 

 


#29 Adalaide

 
Adalaide

    It needs to be about 20% cooler.

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,449 posts
 

Posted 15 October 2013 - 09:10 AM

My 20 yr old son still tries that on me! It didn't work at 6 is isn't working at 20! And they helped with their laundry - one started at 4 & the other at 2 and were completely doing their own laundry by 10/11. How did Child protective Services let this happen?

 

My mom did that to me!!! By the time I was old enough to undress myself I was expected to be able to put my clothes in a small basket and drag it down the hall to the washer on laundry day. I also had to go outside with her and hand her pieces of laundry, one at a time to hang on the line. She was positively evil!

 

Oh... and by the time I was 2 I was helping to bake. I had my own little Tupperware baking set. (Does anyone remember those?) And when my mother or grammy were baking I got dough to play with and mine got baked too. I was always so proud of myself. Yes, positively abusive to teach kids self-sufficiency. :lol:


  • 0

"You don't look sick or anything"

"Well you don't look stupid, looks can be deceiving."

 

Celiac DX Dec 2012

CRPS DX March 2014


#30 Juliebove

 
Juliebove

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,650 posts
 

Posted 15 October 2013 - 09:41 PM

My mom did that to me!!! By the time I was old enough to undress myself I was expected to be able to put my clothes in a small basket and drag it down the hall to the washer on laundry day. I also had to go outside with her and hand her pieces of laundry, one at a time to hang on the line. She was positively evil!

 

Oh... and by the time I was 2 I was helping to bake. I had my own little Tupperware baking set. (Does anyone remember those?) And when my mother or grammy were baking I got dough to play with and mine got baked too. I was always so proud of myself. Yes, positively abusive to teach kids self-sufficiency. :lol:

At 2 I could make my own toast.  At 3 I made scrambled eggs.  By 8 I was making my own frosting roses for the cakes that I baked.  At 12, my mom turned the cooking over to me.


  • 0




0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: