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
- - - - -

Friends Who Don't Get It


  • Please log in to reply

12 replies to this topic

#1 QuirkyVeganGirl

 
QuirkyVeganGirl

    New Community Member

  • Advanced Members
  • Pip
  • 5 posts
 

Posted 11 May 2014 - 07:09 AM

Hi! I'm new to the forum. It seems odd to come to strangers for such personal problems, but aside from the love and support form my husband, I'm not getting much feed back. So here I am! :)

 

I've been gluten free for about five months now, aside from multiple accidental glutenings. My husband (not gluten free) and I have ironed out the kinks in our own kitchen, and I finally feel safe when I cook and eat in my own home. The problem arises when my dear friends want to cook or bake for me. My one friend is studying to be a nutritionist, so she feels pretty confident in her philosophies about gluten free eating and other food intolerance issues. And my other friend claims to be gluten sensitive herself (hasn't been tested), however she frequently indulges in foods containing gluten. Whenever I try to explain my situation and how severe my sensitivity is, I feel shot down by them because of their pre-existing notions about gluten sensitivity. Even one crumb can send me into a tailspin of symptoms for days on end! 

 

I have been glutened twice by my sweet nutritionist friend who has gone out of her way to prepare gluten free foods for me. Once was because she was eating gluteney brownies with one hand while preparing my food. And another time was because she used uncertified quick oats in cookies. She said she checked the label and wheat wasn't listed, but that doesn't rule out cross contamination. And my body, as we speak, is arguing her point to the contrary!

 

Both friends believe that the terms Celiac and Non-Celiac refer to the severity of symptoms. In their mind, only Celiacs experience such severe symptoms. 

 

I have a degree in English/Lit, so I'm a person who has learned to research extensively (and secretly enjoy it). I've read hundreds of articles and books on the subject of Celiac and Non-Celiac Gluten Sensitivity. How can I explain these issues to them without alienating them or rejecting their offers of kindness? I love my friends so dearly, and as an introvert with only a few close friends, I'd hate to lose them over something so trivial.

 

Because I don't have Celiac disease, I don't have to worry about the increased risk of intestinal damage, cancer, etc. when I accidentally eat gluten, but even still. Is it worth the ten days of misery not to hurt someone's feelings?


  • 0

Non-Celiac Gluten Sensitivity through elimination diet and genetic testing through Enterolab - negative for Celiac Disease, two positive genes for Non-Celiac Gluten Sensitivity.

 

Vegetarian since May 2012.

Vegan since December 2013.

Gluten free since January 2014. 


Celiac.com Sponsor:

#2 kareng

 
kareng

    Gobble! Gobble!

  • Moderators
  • PipPipPipPipPipPip
  • 14,245 posts
 

Posted 11 May 2014 - 07:45 AM

You sound like you might have Celiac disease. And it sounds like you were never tested for celiac, so you could have it. Would explain your severe reactions. Maybe you should just tell them you have Celiac and you have been advised to not eat food prepared by others?
  • 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
 
 
 
 

 


#3 BlessedMommy

 
BlessedMommy

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,295 posts
 

Posted 11 May 2014 - 08:19 AM

It's tough, but if you know that they can't prepare safe food, I would stick to providing your own food. Either that, or stand in their kitchen and supervise them while they make it.

 

Just explain to them that you get so sick from small amounts that you just can't take the chance.


  • 0

~Ruth

Gluten free since 2/14/2010 after suffering a rare and serious complication from my gluten challenge

 

 

 

 

 

 


#4 BlessedMommy

 
BlessedMommy

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,295 posts
 

Posted 11 May 2014 - 08:29 AM

Also, due to the small amount of information that is actually available on NCGS, we don't really know what long term health ramifications there are from NCGS people eating small amounts of gluten. 


  • 0

~Ruth

Gluten free since 2/14/2010 after suffering a rare and serious complication from my gluten challenge

 

 

 

 

 

 


#5 Jmg

 
Jmg

    Community Member

  • Advanced Members
  • PipPipPip
  • 45 posts
 

Posted 11 May 2014 - 09:46 AM

They sound like good friends. I'll bet if they could just read your post above that would get you 90% of the way there.  


  • 0

#6 Adalaide

 
Adalaide

    It needs to be about 20% cooler.

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,449 posts
 

Posted 11 May 2014 - 10:26 AM

Also, due to the small amount of information that is actually available on NCGS, we don't really know what long term health ramifications there are from NCGS people eating small amounts of gluten. 

 

This is exactly what I was going to point out. No one knows what your increased health risks are if you have NCGS so it is important to treat it as seriously as celiac.

 

I tell my well meaning friends that even though they're well meaning and thoughtful, I simply do not, ever, under any circumstances, no matter what, PERIOD, eat food that someone else has prepared for me in their own kitchen. It sounds like you need to put your foot down with a rule like this. If they don't understand that things like oats aren't a safe food, their baking pans aren't safe, baking gluten-free foods while eating brownies isn't safe then they're endangering your health and frankly if someone who is a nutritionist is doing this they could be endangering the health of many others through their counseling. Put your foot down and stop ever putting food in your mouth from them if you want to be well. Frankly, if that offends them so greatly the refuse to be friends with you any longer then what kinds of friends are/were they?


  • 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


#7 QuirkyVeganGirl

 
QuirkyVeganGirl

    New Community Member

  • Advanced Members
  • Pip
  • 5 posts
 

Posted 11 May 2014 - 12:25 PM

Thank you for the great responses!
And yes, they truly are good friends.

Also thank you for pointing out how young the research is on NCGS. I often forget that there is still a lot we don't know about it, which is a hard truth to accept when you don't feel well and are so desperate for answers.
  • 0

Non-Celiac Gluten Sensitivity through elimination diet and genetic testing through Enterolab - negative for Celiac Disease, two positive genes for Non-Celiac Gluten Sensitivity.

 

Vegetarian since May 2012.

Vegan since December 2013.

Gluten free since January 2014. 


#8 BethM55

 
BethM55

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 301 posts
 

Posted 12 May 2014 - 10:35 AM

I just started reading Gluten Freedom, a book by Alessio Fasang, MD.  The book has been available since the end of April, 2014.  It has excellent information about celiac and NCGS.  Might be a good resource for you, and to share with your friends.  Perhaps if they understand the science behind the illnesses they might understand your needs better.


  • 0
Self diagnosed gluten intolerant, gluten free since 12/09.
Diagnosed with fibromyalgia about 15 years ago. Fibro symptoms have improved but not gone away with gluten free living.
Osteoarthritis, mostly in hands and neck and lumbar spine. Not sure if going gluten-free has helped that problem, but it certainly can't hurt. (Am very grateful that so far no sign of the RA that is devastating my mother lately.)
Considering a dairy free trial. Considering.

#9 QuirkyVeganGirl

 
QuirkyVeganGirl

    New Community Member

  • Advanced Members
  • Pip
  • 5 posts
 

Posted 12 May 2014 - 02:49 PM

Thanks Beth! I'll check it out!
  • 0

Non-Celiac Gluten Sensitivity through elimination diet and genetic testing through Enterolab - negative for Celiac Disease, two positive genes for Non-Celiac Gluten Sensitivity.

 

Vegetarian since May 2012.

Vegan since December 2013.

Gluten free since January 2014. 


#10 CathyO

 
CathyO

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 75 posts
 

Posted 12 May 2014 - 06:31 PM

I'm newly diagnosed, also.

 

What I've told friends is this:  For right now, until I have everything under control and feel comfortable, I'm just going to have to stick to eating only foods I prepare for myself.  I'd love to come to their house and have dinner, and my husband would be happy to eat what they prepare .... rather than have them go to a big fuss and worry about me getting sick, I will just bring my own food .... and we can have the joy of spending time together while not worrying.

 

Good friends have said "Sounds like a great idea!"

Not-so-good friends have said "You're being ridiculous."

My response to the not-so-good friends is along the lines of "I'd rather be ridiculous than be in and ambulance, again, and in the cardiac unit of the hospital for three days. So, I'll just be ridiculous, and we'll pass on the dinner invite for now."

 

At my age, I can appear ridiculous and don't really care what they think.  I want to be alive and enjoy all these grandkids !!!

 


  • 0

#11 QuirkyVeganGirl

 
QuirkyVeganGirl

    New Community Member

  • Advanced Members
  • Pip
  • 5 posts
 

Posted 13 May 2014 - 02:59 AM

Thanks, Cathy!
I think I'm going to have to start saying that to people too.
  • 0

Non-Celiac Gluten Sensitivity through elimination diet and genetic testing through Enterolab - negative for Celiac Disease, two positive genes for Non-Celiac Gluten Sensitivity.

 

Vegetarian since May 2012.

Vegan since December 2013.

Gluten free since January 2014. 


#12 BlessedMommy

 
BlessedMommy

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,295 posts
 

Posted 14 May 2014 - 05:52 PM

I'm newly diagnosed, also.

 

What I've told friends is this:  For right now, until I have everything under control and feel comfortable, I'm just going to have to stick to eating only foods I prepare for myself.  I'd love to come to their house and have dinner, and my husband would be happy to eat what they prepare .... rather than have them go to a big fuss and worry about me getting sick, I will just bring my own food .... and we can have the joy of spending time together while not worrying.

 

Good friends have said "Sounds like a great idea!"

Not-so-good friends have said "You're being ridiculous."

My response to the not-so-good friends is along the lines of "I'd rather be ridiculous than be in and ambulance, again, and in the cardiac unit of the hospital for three days. So, I'll just be ridiculous, and we'll pass on the dinner invite for now."

 

At my age, I can appear ridiculous and don't really care what they think.  I want to be alive and enjoy all these grandkids !!!

 

I love it Kathy! Great job sticking up for yourself!

 

I'm not quite as spunky as you, but I'm making progress.

 

A friend is hosting a bridal shower for her daughter and I mentioned that I would be coming. She said, "We'll have wheat free stuff there." I said, "Thanks, but I'll provide my own food, don't worry about me!" My friend said, "Oh it's safer to bring your own, isn't it? I can understand that you'd rather not risk it."  :) 

So I called her later and found out what the menu was so that I could bring something similar. 


  • 0

~Ruth

Gluten free since 2/14/2010 after suffering a rare and serious complication from my gluten challenge

 

 

 

 

 

 


#13 NatureChick

 
NatureChick

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 183 posts
 

Posted 14 May 2014 - 08:11 PM

I totally agree with the comment about not knowing what damage NCGI does to the body. They really don't know ... yet. But it sounds as if you take your avoidance of gluten seriously so no need to harp on that.

I feel your pain when it comes to the friends. I have a close friend who also can't eat gluten, but it has actually caused some conflict in our friendship rather than creating an additional bond. He is willing to take a lot more risks when it comes to getting glutened than I am, so when we are out, he expects to be able to go to a restaurant and judges me for not wanting to, while I think he's crazy for not taking it all more seriously. He also gets peeved when I tell him why foods he is still eating are not actually gluten free. 

For the friends, I would explain parts per million, how even a wooden cutting board or a plastic spatula can be a source of cross contamination, or flour dust in the air. I don't think you have to teach them everything, just enough to get them to stop trying so hard and to realize that it really is outside of their control, even with the right ingredients, unless they were willing to replace half of their kitchen utensils and appliances.

But it sounds as if they really do want to try to make your life easier. How about inviting them over to your house once a month to do some gluten-free cooking in a safe kitchen - making it something you can do together? If you also do the grocery shopping beforehand together, you'll have some additional opportunities to talk about hidden sources of gluten. 

If you are going to eat at their houses, can you bring along utensils that are gluten free, like a cutting board, and offer to help prepare something so that you can be certain of what went into it, or set aside a portion for yourself that you know is safe before any gluten ingredients are added?

Also, tell them about how the reaction to gluten can actually become more pronounced and more painful after going gluten-free so that they understand why you aren't willing to take even a calculated risk.


  • 0




0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: