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      READ FIRST: Super Sensitive Celiacs Disclaimer   09/23/2015

      This section of the forum is devoted to those who have responses to gluten beyond the experience of the majority of celiacs. It should not be construed as representative of the symptoms you are likely to encounter or precautions you need to take. Only those with extreme reactions need go to the lengths discussed here. Many people with newly diagnosed celiac disease have a condition known as leaky gut syndrome, which can lead to the development of sensitivity to other foods until the gut is healed - which may take as long as one to three years. At that time they are often able to reincorporate into their diet foods to which they have formerly been sensitive. Leaky gut syndrome leads many people to believe they are being exposed to gluten when they are in fact reacting to other foods.
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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Cross Contamination, Sharing Drinks, Etc. And Trying To Explain This To People?
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7 posts in this topic

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?

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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!

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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.

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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 :)

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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?

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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. "

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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: http://www.biomedcentral.com/1471-230X/13/40

 

Studies of what amounts of gluten bothering celiacs can be found referenced here: http://www.fda.gov/downloads/Food/FoodScienceResearch/UCM264152.pdf

A study of gluten free food containing higher than 20 ppm gluten can be found here: http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2621.2007.01599.x/abstract;jsessionid=A3CB30ABA7B3420C827BA09C954C2C31.f02t01?deniedAccessCustomisedMessage=&userIsAuthenticated=false

 

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

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