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

Cross Contamination, Sharing Drinks, Etc. And Trying To Explain This To People?


supersquatchy

Recommended Posts

supersquatchy Apprentice

I'm finding that I'm having a very difficult time being firm about what is okay for me to eat. I've been gluten free for a little over a month now. I've been feeling a lot better in the recent weeks.. so it's all starting to pay off.

 

One issue that I'm running into a lot is how to deal with people who don't understand without sounding pretentious or obnoxious or anything of the sort. The other day in class (17 and home schooled.. because I was always sick.. which turned out to be celiac this whole time).. one of the student's mothers brought up a platter of treats. I had brought my own cookies so I could have them afterwards. She had placed them on the plate with everything else.. I had to refuse them because they were touching the other food items that contained wheat. This woman didn't get it and was sort of pissed off at me after that.

 

Another issue that falls into the same category.... how am I supposed to explain this to this guy I just started seeing without sounding like a total paranoid freak? He's really sweet and understanding and I don't expect him to get all of this right off the bat... but.. he accidentally glutened me yesterday.. though it was equally.. if not more.. my fault. He made me tea from a locally made package... and I'm sure that this person doesn't take care avoid cross contamination. I wanted to drink it anyway because I'm a people pleaser and I don't want to disappoint anyone. I only had a few sips because I'm not a tea person... but an hour later I had really bad stomach cramps.. it didn't occur to me that the tea was most likely the culprit. I DID read the back of it and there was no barely or gluten containing ingredients in the mix but I'm sure it's made on the same surface as everything else. Later that day we went out to get food.. we ate at whole foods because that's the only place I feel comfortable getting food.. at this point I honestly just don't trust the restaurants.. I know they try their best but.. I don't like risking it. He got a salad with croutons on it... and he had this drink that was good and gluten free.. he let me have a sip but it didn't even register to me that he had just eaten a crouton and drank out of the same bottle before me. I just wasn't thinking.

 

Today I'm feeling EXTREMELY tired and foggy.. I'm about to lie down for my second nap today... I can't focus or do any school work.. I'm just hoping to regain some energy so I can function for the remainder of the day. I obviously wouldn't tell him about this! I don't want him to feel bad.. and it WAS mostly my fault. 

 

I really like him though and if I'm THIS sensitive to gluten.. what happens when it comes to things like kissing and such? I don't want to have to ask someone to wash their mouth out beforehand.. every single time ): I don't want to be a pain, I like to be easy going and I like to make people happy.. that's why I drank the tea even though I knew that it was probably going to make me sick.

 

I don't want this to run my life. It's starting to piss other people off.. even though I handle everything very well and I explain things minimally and politely.

 

How am I supposed to help other people understand? Is there a set wording that I could use each and every time? And what am I supposed to do when it comes to relationships? How do the rest of you handle these issues?


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



Celiac.com Sponsor (A8-M):



notme Experienced

I'm finding that I'm having a very difficult time being firm about what is okay for me to eat. I've been gluten free for a little over a month now. I've been feeling a lot better in the recent weeks.. so it's all starting to pay off.

 

One issue that I'm running into a lot is how to deal with people who don't understand without sounding pretentious or obnoxious or anything of the sort. The other day in class (17 and home schooled.. because I was always sick.. which turned out to be celiac this whole time).. one of the student's mothers brought up a platter of treats. I had brought my own cookies so I could have them afterwards. She had placed them on the plate with everything else.. I had to refuse them because they were touching the other food items that contained wheat. This woman didn't get it and was sort of pissed off at me after that.

 

Another issue that falls into the same category.... how am I supposed to explain this to this guy I just started seeing without sounding like a total paranoid freak? He's really sweet and understanding and I don't expect him to get all of this right off the bat... but.. he accidentally glutened me yesterday.. though it was equally.. if not more.. my fault. He made me tea from a locally made package... and I'm sure that this person doesn't take care avoid cross contamination. I wanted to drink it anyway because I'm a people pleaser and I don't want to disappoint anyone. I only had a few sips because I'm not a tea person... but an hour later I had really bad stomach cramps.. it didn't occur to me that the tea was most likely the culprit. I DID read the back of it and there was no barely or gluten containing ingredients in the mix but I'm sure it's made on the same surface as everything else. Later that day we went out to get food.. we ate at whole foods because that's the only place I feel comfortable getting food.. at this point I honestly just don't trust the restaurants.. I know they try their best but.. I don't like risking it. He got a salad with croutons on it... and he had this drink that was good and gluten free.. he let me have a sip but it didn't even register to me that he had just eaten a crouton and drank out of the same bottle before me. I just wasn't thinking.

 

Today I'm feeling EXTREMELY tired and foggy.. I'm about to lie down for my second nap today... I can't focus or do any school work.. I'm just hoping to regain some energy so I can function for the remainder of the day. I obviously wouldn't tell him about this! I don't want him to feel bad.. and it WAS mostly my fault. 

 

I really like him though and if I'm THIS sensitive to gluten.. what happens when it comes to things like kissing and such? I don't want to have to ask someone to wash their mouth out beforehand.. every single time ): I don't want to be a pain, I like to be easy going and I like to make people happy.. that's why I drank the tea even though I knew that it was probably going to make me sick.

 

I don't want this to run my life. It's starting to piss other people off.. even though I handle everything very well and I explain things minimally and politely.

 

How am I supposed to help other people understand? Is there a set wording that I could use each and every time? And what am I supposed to do when it comes to relationships? How do the rest of you handle these issues?

i guess i'm lucky that i already had an assertive personality.  squatchy:  don't let anybody touch your food if you bring safe food with you!!  put it in a bag and hide it until you're ready to eat it.  i have gone as far as put a skull & crossbones on mine, lolz  :D  because, think about it:  most people *will* ruin it!  not intentionally, but what is the point of bringing it if you can't eat it  :( 

 

next:  you can't be easy-going if you're sick all the time!!  no more sharing drinks - get used to it, sorry if that sounds harsh.  and your boyfriend will have to brush his teeth before he kisses you if he is eating/drinking gluten.  if he can't take a minute to do this, he should be replaced by someone who actually cares about your health.  think about if the shoe was on the other foot - would you be willing to take a minute in order to not make him sick?    if y'all want to be spontaneous, have him eat and drink gluten free when you are out, etc, that way he can safely kiss you anytime he wants  :)  also, you must say no if you have any doubt whether anything is safe to eat.  period.  no.  you can't have it....   i learned all this stuff the hard way!  did not believe the kissing (yup, it really will make you sick) and i had some wonderful friends make me some 'gluten free' treats when i was first dx'd.  they mean well, but had no idea how careful you have to be.........  i knew i shouldn't have eaten it, but they were so sweet to fix them for me, sooooooooooo.......  you're not alone, lolz  :)  hope you feel better!

dilettantesteph Collaborator

It can be difficult to get people to take this seriously.  Some will believe that it isn't real no matter what you do.  I find the best doctors that I can to stand behind my children and I.  It helps to find out what medical documentation can be provided, and have the doctor do that.  It helps to find peer reviewed published research and to provide that to those involved as pertinent. 

 

I find that in a casual setting, it helps to say that you get too sick to want to take the risk, rather that their food is contaminated.  That way they don't take it as a reflection on their ability to provide safe food.  That way it doesn't open up the discussion to what is and isn't safe.  They are free to feel that you being overly cautious, but that is what makes you comfortable.  I tell people that I will only eat food that I prepare myself.  I have learned that this is the only way from trial and error.

 

My daughter's present boyfriend went gluten free even before they kissed, with the hope that it might happen.  He had become aware of her extreme sensitivity during their friendship before dating.  I think that your boyfriend would understand if you give him the chance.  If he doesn't, he probably isn't worth it.  You need someone who will be considerate of your needs, not someone who will inconsiderately make you sick.  

 

This won't ruin your life.  It is the solution for all those times you felt terrible.  It just takes some getting used to.  I wish you the best.

  • 2 weeks later...
Shell156 Apprentice

I know how you feel! I've totally been there! I've found for myself I have to be less scared of telling people what I need to stay well :) if I act nervous or like I don't "deserve" to say it, people are more likely to not be understanding. Hope things get better!

Stephanie, I'm very interested in peer-reviewed studies! It would be so nice to show them to people who are close to me but maybe a little bit skeptical? Or even just for myself, I'm very curious :)

dilettantesteph Collaborator

I know how you feel! I've totally been there! I've found for myself I have to be less scared of telling people what I need to stay well :) if I act nervous or like I don't "deserve" to say it, people are more likely to not be understanding. Hope things get better!

Stephanie, I'm very interested in peer-reviewed studies! It would be so nice to show them to people who are close to me but maybe a little bit skeptical? Or even just for myself, I'm very curious :)

 

I'm sorry, peer reviewed studies for what?

  • 2 months later...
Shell156 Apprentice

Hi Steph ,

Here... I just copied and pasted your first paragraph from your last post? It's in the last sentence!

"It can be difficult to get people to take this seriously. Some will believe that it isn't real no matter what you do. I find the best doctors that I can to stand behind my children and I. It helps to find out what medical documentation can be provided, and have the doctor do that. It helps to find peer reviewed published research and to provide that to those involved as pertinent. "

dilettantesteph Collaborator

Hi Steph ,

Here... I just copied and pasted your first paragraph from your last post? It's in the last sentence!

"It can be difficult to get people to take this seriously. Some will believe that it isn't real no matter what you do. I find the best doctors that I can to stand behind my children and I. It helps to find out what medical documentation can be provided, and have the doctor do that. It helps to find peer reviewed published research and to provide that to those involved as pertinent. "

 

I mean research to support whatever point I am trying to get across.  The exact research study I use will depend on what point I am trying to make.  For example if I want to make the point that some celiacs may have problems with the typical gluten free diet, I would offer this study: Open Original Shared Link

 

Studies of what amounts of gluten bothering celiacs can be found referenced here: Open Original Shared Link

A study of gluten free food containing higher than 20 ppm gluten can be found here: Open Original Shared Link

 

I was trying to find out what in particular that posted was talking about.


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



Celiac.com Sponsor (A8-M):



Archived

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

  • 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. - jenniber replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Disaccharide deficient, confusing biopsy results, no blood test

    2. - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      High TTG-IgG and Normal TTG-IgA

    3. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      32

      My journey is it gluten or fiber?

    4. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      32

      My journey is it gluten or fiber?

    5. - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      High TTG-IgG and Normal TTG-IgA

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,845
    • Most Online (within 30 mins)
      7,748

    Paulaannefthimiou
    Newest Member
    Paulaannefthimiou
    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

    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
    • xxnonamexx
      I made it through the holiday w/o being glutened. I had my brother cook with gluten-free breadcrumbs and I didn't get sick. I baked cookies with gluten-free flour and had dry ingredients for cookies in ziplock bag. I also made gluten cookies as well and guess I did good washing to avoid CC. My wife also went to a french bakery and bought a gluten-free flourless chocolate cake dedicated gluten-free it was out of this world. 
    • xxnonamexx
      What do you mean it would not allow any celiac to eat gluten again. I think if this helps cross contamination when eating out at a non dedicated gluten-free restaurant this would be nice not to encounter the pains. But is their a daily enzyme to take to help strengthen the digestive system? 
    • SamAlvi
      Hi, thank you for the reply. Unfortunately, no other antibody tests were ordered. I am a 32-year-old male. About two months ago, I ate pancakes and then developed severe diarrhea that lasted the entire day. At night, I became unconscious due to fluid loss and was admitted to the ER, where I received IV fluids. Two days later, I ate bread again and once more developed severe diarrhea. I ended up in the ER again and received IV fluids. In my country, Pakistan, doctors are unfortunately not very thorough, so they treated me for a stomach infection. I visited three or four doctors, including a gastroenterologist, but it seemed like they just wanted to keep me on medications and IV fluids. Eventually, I did some digging myself and started connecting the dots. For years, I’ve had excessive gas buildup and frequent loose stools, but I never paid much attention to it. I also cannot easily digest dairy products. Two years ago, I had a CBC test that showed iron deficiency. My doctor told me to eat more meat and said it was nothing serious. However, for the past five years, I’ve also had severe motion sickness, which I never experienced before. Whenever I get on a bus or in a car, I sometimes lose consciousness for 10–20 seconds and wake up sweaty, and occasionally I feel the need to vomit. After more research on the internet, I came across gluten and celiac disease, so I got two related tests (TTG-IgA & TTG IgG) done along with a stool test and another CBC. The stool test showed weakly positive blood. Ever since eating those pancakes and bread, I’ve had a burning sensation in my gut. My doctor reviewed my tests, he told me to completely stop eating gluten and started me on IV fluids for 20 days, saying that I had severe inflammation in my gut. It has now been two months since I quit gluten, and I’m still not sure whether this is celiac disease or gluten intolerance. I don’t really trust doctors in Pakistan, so I thought I might get some help here.
×
×
  • 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.