Jump to content

Follow Us:  Twitter Facebook RSS Feed            




   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Ads by Google:
Celiac.com Sponsor:                                    


Photo
- - - - -

Do People Try To Make You Prove Your Intolerance?


  • Please log in to reply

35 replies to this topic

#1 Juliebove

 
Juliebove

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,650 posts
 

Posted 13 October 2013 - 10:52 PM

I have not seen this too much here, thankfully.  But I sure have on other forums elsewhere and sometimes even in real life.  Things like...

 

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! 

 

This whole thing rather sickens and saddens me.

 

Sometimes we don't know the hows and whys of why something makes us sick.  We just know that it does.  Like me, with garlic.  I can handle a small amount of it.  I generally don't cook with it unless I am making something for my garlic loving Italian husband and often when I do it is just for him.  I am taking deodorized garlic capsules again.  Tried them years ago but can't remember why.  But after discovering bleeding in my eyes due to diabetes am trying anything and everything purported to strengthen the veins.  And so far so good in the stomach department.  But if I eat too much garlic, I get bad stomach pains.  It isn't an allergy and it isn't an intolerance.  I just know that I can't eat a lot of it.

 

But if a person tells me that a certain food doesn't agree with them, the reason why doesn't really matter to me.  Oh, I will listen if they want to tell me why.  Because stuff like this is of interest to me.  But I would never tell someone something like...  Oh but if you eat that, at least it won't *kill* you like *my* legitmate allergy would do to *me*!  Note that I am just repeating what I've heard others say or have seen written.  I myself do not have actual IgE allergies to food.  It just annoys me that some of these people think they are either better than *we* are because they have no food issues.  Or that their food issues are more serious than ours are.  And yes, I know that celiac does cause damage.  Celiac is not my issue.  In no way do I want to demean it.  I just think that for the rest of us with food issues, our food issues are just as real and serious to us (and by serious I do not mean necessarily damaging or life threatening but to be taken seriously) as yours are to you!  If you know what I mean.

 

Have you ever run across people like this?  They drive me nuts!


  • 0

Celiac.com Sponsor:

#2 Adalaide

 
Adalaide

    It needs to be about 20% cooler.

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,449 posts
 

Posted 14 October 2013 - 12:12 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.


  • 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


#3 1desperateladysaved

 
1desperateladysaved

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 2,201 posts
 

Posted 14 October 2013 - 04:01 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.

 

.


  • 0

#4 StephanieL

 
StephanieL

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 927 posts
 

Posted 14 October 2013 - 05:55 AM

I think people think it's all or nothing is the thing. They don't get that there is a "spectrum" of food issues so to speak.  

That said, standard AND alternative testing for allergies and intolerances is really really really scientifically sketchy at best and quackery at worst.  I would trust someone saying "it doesn't agree with me" over some of the alternative testing because of my research on things but if they did the testing BECAUSE of how they were feeling, I would trust that. I *do* get frustrated that the words get muddled and lose meaning though.  Having a child who does suffer from several life threatening food allergies,when someone says they "get it" because they are lactose intolerant it's really frustrating.  It is NOT the same thing so please, don't suggest that it is.  My vegan in-laws pull this. I'm sorry but your lifestyle choice doesn't make me feel bad for you when you can't eat something when you are out. It's unfortunate there isn't an option but that is your CHOICE.  Obviously things like allergies, intolerances and other medical conditions are not the same but they do vary in severity.


  • 0

#5 IrishHeart

 
IrishHeart

    Warrior Princess

  • Advanced Members
  • PipPipPipPipPipPip
  • 10,558 posts
 

Posted 14 October 2013 - 06:58 AM

Having developed a problem with high histamine foods, soy, MSG, food dyes and other chemicals in foods  along with celiac, I can say that I do understand how difficult it is to try and explain things to people, especially when I have already explained what celiac is, what gluten is and why I simply cannot just "try something" they want me to try---when I do not know the source.

 

If the person seems interested, I will explain it briefly.

 

If the person is already yawning when I start my first sentence....I simply say

"I really can't try (fill in the blank) because it gives me grief .....but thanks anyway."

 

I really do not think any of us with health issues (or our children with health issues) owe anyone any explanations for why we

eat the way we do or why we turn down things offered to us.

 

We do it because we have to. As Stephanie points out, it's not a choice. 


  • 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


#6 bartfull

 
bartfull

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 2,557 posts
 

Posted 14 October 2013 - 07:43 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!


  • 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!

 


#7 LauraTX

 
LauraTX

    Advanced Community Member

  • Moderators
  • PipPipPipPipPipPip
  • 1,298 posts
 

Posted 14 October 2013 - 09:28 AM

With my myriad of health problems, I generally don't talk about them to strangers when I don't have to other than "I lack part of my immune system don't be sick around me."  People always read something on the internet or see a commercial on TV and that makes them an expert.  Their sister/friend/grandma/cat had that and they cured it with this magical treatment!  

 

People do this with every ailment.  My dad, bless his soul, passed away from ALS (Amyotrophic Lateral Sclerosis AKA Lou Gehrigs disease) a few years ago.  Before he looked visibly sickly and had to use a wheelchair, he would tell people what he had, saying it was a fatal illness with no cure or effective treatment.  Then people will say things like "Oh yeah I have weakness in one arm, too, I know how it feels."  You can really tell if people are actually listening or not due to some of their responses.  He couldn't comprehend how people can compare anything to his death sentence.

 

If you are in my house, you will respect the fact that you cannot have gluten, you will not smoke on my property because even the smell on you when you walk inside makes my asthma go off, and you need to wash your nasty hands so you don't get me sick, because a 2 day cold to you is 4 weeks of suffering to me.  I don't mind inquiries and dumb questions, I try to be patient, but if you are disrespectful of things I need to do for my health, I would show anyone the door, I don't care who it is.  Outside there is more I will tolerate, but when people start telling you their expert medical opinion I just tell them, I have it handled, I only take medical advice from professionals.  Usually that makes them hush.


  • 0
I am my husband's "Silly Yak Girl" :)
I was diagnosed with Celiac Disease in January 2013. I also have Lupus and Common Variable Immunodeficiency(CVID) for which I am on IVIG.

Celiac.com - Celiac Disease Board Moderator

#8 Celtic Queen

 
Celtic Queen

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 286 posts
 

Posted 14 October 2013 - 12:38 PM

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.


  • 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....


#9 YouAreWhatYouFeat

 
YouAreWhatYouFeat

    New Community Member

  • Members
  • Pip
  • 5 posts
 

Posted 14 October 2013 - 02:23 PM

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.


  • 0

#10 bartfull

 
bartfull

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 2,557 posts
 

Posted 14 October 2013 - 02:44 PM

"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."

 

Actually, that is not true. You may, because of the leaky gut, have trouble with yeast but I assure you, many if not most celiacs can eat yeast with no problems.


  • 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!

 


#11 Adalaide

 
Adalaide

    It needs to be about 20% cooler.

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,449 posts
 

Posted 14 October 2013 - 02:45 PM

Last I checked having a kid make their own sandwich isn't some sick, twisted form of child abuse. By the time my daughter was 5 she had pushed and pushed me so far with wanting to be self-sufficient that I was letting her use the microwave a little with some supervision. And... not super sharp paring knives to cut things like strawberries and other not super hard things. Aren't kids supposed to learn their way around a kitchen?

 

If my husband is home and he wants something that is gluteny I make him touch it. I'm not going to touch it then have to wash my hands. I'm already surprised that I don't have cracked and bleeding hands from how often I have to wash them. Wipes won't magically get rid of gluten in a way that washing your hands wouldn't take care of about a million times better. The whole point is, why bother if someone better suited to the task is standing right there. 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.)


  • 1

"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


#12 IrishHeart

 
IrishHeart

    Warrior Princess

  • Advanced Members
  • PipPipPipPipPipPip
  • 10,558 posts
 

Posted 14 October 2013 - 03:16 PM

since the protein in yeast is so similar to that in gluten that your body reacts the same way to it.

 

I have never heard of this or found it in any medical literature about celiac, hon.,

"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."

 

Actually, that is not true. You may, because of the leaky gut, have trouble with yeast but I assure you, many if not most celiacs can eat yeast with no problems.

 

I agree!


  • 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


#13 YouAreWhatYouFeat

 
YouAreWhatYouFeat

    New Community Member

  • Members
  • Pip
  • 5 posts
 

Posted 14 October 2013 - 03:43 PM

It is called cross confusion: http://drclark.typep...ensitivity.html

 

Yeast, dairy, and corn are all suspects of this. I have heard this by a couple popular doctors in the Celiac community. Also, I know by how I feel when I eat all 3 that it's true lol


  • 0

#14 kareng

 
kareng

    Gobble! Gobble!

  • Moderators
  • PipPipPipPipPipPip
  • 14,234 posts
 

Posted 14 October 2013 - 03:54 PM

I'm sorry if yeast, dairy and corn bother you, but it isn't a gluten reaction.

 

I think you should get your info from real doctors and Celiac researchers.

 

http://www.curecelia...ross-reactivity

 

No  mention about not eating yeast, etc:

 

http://www.massgener...isease-faq.aspx

 

"What is the treatment for celiac disease?

There are no drugs to treat celiac disease and there is no cure. But celiacs can lead normal, healthy lives by following a gluten free diet. This means avoiding all products derived from wheat, rye, and barley.

What are the recommended blood tests to diagnose celiac disease"

 

 

http://sklad.cumc.co...nter/treatment/


  • 0

Thanksgiving dinners take 18 hours to prepare.  They are consumed in 12 minutes.  Half-times take 12 minutes.  This is not a coincidence.  - Emma Bombeck
 
dancing-turkey.gif
 
 
 
 

 


#15 IrishHeart

 
IrishHeart

    Warrior Princess

  • Advanced Members
  • PipPipPipPipPipPip
  • 10,558 posts
 

Posted 14 October 2013 - 04:13 PM

It is called cross confusion: http://drclark.typep...ensitivity.html

 

Yeast, dairy, and corn are all suspects of this. I have heard this by a couple popular doctors in the Celiac community. Also, I know by how I feel when I eat all 3 that it's true lol

 

 

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.


  • 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





0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: