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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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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Glittersmith

How Do You Deal With The "haters"?

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I haven't gotten exactly that but I have had people say that they don't want to know about our food issues.  But the thought has also crossed my mind that if I had a restaurant, I would be afraid to serve anyone with life threatening food issues lest they actually die, or get really sick and have to go to the hospital then blame me for it later.  And I may not have even been the cause of it.  Then again, I am not likely to open a restaurant.  Not in this lifetime anyway.

 

I was the room parent one year for my daughter's class and was put in charge of all of the kids with food allergies.  I was very careful with what I bought.  And one kid was allergic to yellow dye number 5 plus corn.  That was a toughie.  Seemed that all of the gluten-free stuff I found that was similar to what the other kids were getting had corn in it!  But somehow I managed.  I also listened as patiently as I could (I am not very patient) to the one girl with the peanut allergy tell me of her frightening trip to the ER where she almost died.  And drove a package of treats to another girl after school after she had a meltdown at the party.  Her mother had told her before school to just go ahead and eat the pizza!  And yes, gluten and dairy were both problems for this kid. 

 

Frankly I could not understand this mother.  She acted shocked when her daughter's eye swelled shut after eating chicken nuggets at McDonalds.  Told me that there must have been egg in them.  Well, yeah and maybe dairy but did it not cross your mind that there was also WHEAT in there?  And another time she was angry with our naturopath who wanted her to eliminate dairy her own self for a couple of weeks to see if her stomach got better.  She actually said to me while rolling her eyes, "She expects me to do this on a HOLIDAY WEEKEND?"  I wanted to tell her that for those of us with food issues, our food issues do not take a holiday!  And she also acted astounded when her husband became sick from eating some pastries at work.  Said there must have been whipped cream in them.  He has multiple food issues too.  But who with food issues would just blindly eat something without knowing what was in it?

 

Anyway...  Back this girl.  She was so confused when her mom told her just to go ahead and eat the pizza, knowing that it would make her sick for the entire weekend that she became frightened of my treats, thinking I would sicken her as well.  So I went home, got all of the food packages and recipes from my house and brought them along to her house along with my daughter, assuring her that my daughter had most of her same food issues and I wouldn't dare sicken either of them.  I think she felt better after that.  At least I hope she did.

 

I also think that people who have no food issues can not comprehend how rotten we can feel or how sick we can get if we eat the wrong thing.  Even if it is just a mere crumb of something that fell into our food.  I can't tell you how many times I have been told that a little bit won't hurt or that it won't kill me.  One thing that does seem to work for me is when I do get sick in their presence.  Now gluten isn't an issue for me.  I have multiple food intolerances.  And eating this stuff can give me projectile vomiting, head to toe hives or the big D which sends me flying to the bathroom and keeps me there for a while.  All it takes is one episode of this at their house and they are darned careful after that!

 

And maybe I'm just overly careful but...  In general, I would never eat at a fund raiser or anything like that.  If it required payment to get in the door, like the ice cream social at my daughter's school, I would just pay and still not eat.  I learned not to take any chances and just eat at home.  Or in my vehicle with food from home.  At restaurants I try not to go without checking out their website, calling them or visiting them first.  I try to go to places that cook from scratch and for me, Mexican restaurants usually work quite well.  We also ate at Italian places with gluten-free pasta because even though gluten isn't my issue (was for daughter), the gluten-free stuff was free of egg which I can't have.  But now that she can't have basil, those places are no longer a good choice for us.

 

Bottom line, people can just be very cruel and clueless.  And it's not just with food. I have heard people poking fun of other people's jobs.  This happened a few weeks ago and this woman was going on and on about how retail jobs are nothing and no employer would even count that as a real job so no need to put this on a resume.  And there I was, sitting there and having to listen to it, having only ever worked in retail for all of my 54 years.  She has also made nasty comments about food to me.  Some people are just that way.

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I try not to let these people stop me from asking the questions I need to, but I admit I sometimes get tired of being the super-annoying one. For this reason I mostly avoided eating out for a year.

 

Then recently I've had good luck at restaurants, even without raking the poor waitress over the coals. Which led me to be TOO casual about it... then guess what -- glutened. Doh.

 

So I guess the bottom line is 1) eating out is always going to mean we have to ask, ask, ask; and 2) some people are going to be annoyed or even rude about it. C'est la vie!

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I just want to say that this line is true for so many things...

 

My son is not circumsized and every once in a while it comes up in conversation.  Some people get totally weird and nearly obsessed about it.  My standard answer is "Wow, you sure are putting a lot of thought into my son's penis."  Shuts 'em up every. single. time.  Once it's pointed out that they have all this weird energy on something that doesn't concern them they stop.  Maybe you celiacs could snark right back at them! :)

Now THIS is a beautiful answer!  Ha, Ha!   :D

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I have to talk about my disease because I am usually at a gathering where we are eating. So it comes up. I have never had anyone say anything negative. I have heard the "ohhh I feel so sorry for you" and like someone stated "I would just die if I couldn't eat bread" LOL I just say well It is a diet that is not my choice to make, I have got to follow it or be sick for the rest of my life. But really I have not had any negativity . I find people are more curious than ever about it. I also have had someone say "I should follow that diet." lol  I am waiting to find a person that is negative because I will probably let them have it with both barrels.

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I ordered gluten-free sushi and asked additional questions (because I got hit the time before after many previous good experiences) and found out the staff was frustrated by people requesting gluten-free (and staff going through the menu, etcetera) and then ordering glutinous items. Yeah, frustration. We talked a bit and my waiter was happy to explain to the chefs that I was serious, and I got a safe meal.

 

Actually, a good friend of mine is a server at a high end French restaurant and this was a huge issue for him.  He had several customers send him running back and forth to the kitchen several times to check ingredients, only to go ahead and order something with gluten in the end.  I explained to him that those people were probably not true Celiacs and that I would never, ever order something with gluten in it on purpose.  People like that make the real Celiacs look bad.

 

A couple of weeks ago he had a true Celiac come into the restaurant and he was able to help her order something safe. He told me about it the next day.  Made me feel better that my "education" helped.  I have started telling servers that gluten will make me very sick just to clarify to them that that it's not a fad for me.

 

As for the hostility of others, I sometimes wonder if it is because they know they need to change their diet but don't want to, so they become resentful of those of us who do.

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As for the hostility of others, I sometimes wonder if it is because they know they need to change their diet but don't want to, so they become resentful of those of us who do.

 

I agree with your thoughts entirely, CQ.

 

In my experience, this is true of many things besides the G F diet, too.

People often scoff at those who go against the norm or those who change things in their lives to make them better.

And people often ridicule things they do not really understand 

Debbie downers exist everywhere.

 

Deep down, they wish they had the stones to affect such changes too.

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People often scoff at those who go against the norm or those who change things in their lives to make them better.

And people often ridicule things they do not really understand 

 

Yep - they are definitely everywhere.  I call it the gang mentality.  If you dare to suggest that there might be a better way to live, you get jumped.  The ironic thing is that we aren't trying to get them to change their lifestyle - just to get out of way from bettering our own.

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My words to live by:

I can't control what happens (or what others say). I can only control how I react.

A short line to the wait person assuring them that your condition is serious is smart. I have never had a problem after that explanation. If a relative or close friend is rude, looking them in the eye and saying, "It hurts me when you say that" will usually work wonders. If it is a random person, I have no problem staring at them like they have two heads and then walking away.

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Someone told a story in another thread about finding that the new Pillsbury refrigerated gluten

free stuff in the grocery store was out of date, so she pointed it out to the pair of stockboys

just down the aisle. One of them replied something like "Well I think people who eat gluten free

are annoying anyway". She replied to him, "Well, I have a medical condition, which means that

when I eat gluten I get very, very sick. So.... I just don't have anything nice to say to you about

that."

 

I LOVE THAT! "I just don't have anything nice to say to you about that." I've been waiting for an

opportunity to use that line and haven't had one yet.....

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I have spent the last few minutes laughing my head off and saving some great comebacks for next time.   You lot are all so cleaver!!!

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I have spent the last few minutes laughing my head off and saving some great comebacks for next time.   You lot are all so cleaver!!!

That's what happens when you are no longer a gluten head........the zingy comebacks just flow!  :lol:

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I would love to say to a hater, "you know, I was like you once. I loved bread, beer and cake. Then one day, 'bam!' I had celiac disease. It could happen to you. Think about that."

 

Some folks have given me a hard time about my need for gluten-free food.  I just tell them the truth: "Until I was 50, I could eat anything.  I wasn't allergic to anything.  Then overnight I became gluten intolerant.  One day I was fine and the next day I had this illness.  If it can happen to me it can happen to anyone.  It could happen to you.  It could happen today!  You'll never see it coming."

Frankly I saw more of this during the great recession.  I see far less of it now.  There seemed to be some resentment towards anyone with a "special need" as if my gluten intolerance had damaged the economy! :-)

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I have to talk about my disease because I am usually at a gathering where we are eating. So it comes up. I have never had anyone say anything negative. I have heard the "ohhh I feel so sorry for you" and like someone stated "I would just die if I couldn't eat bread" LOL I just say well It is a diet that is not my choice to make, I have got to follow it or be sick for the rest of my life. But really I have not had any negativity . I find people are more curious than ever about it. I also have had someone say "I should follow that diet." lol  I am waiting to find a person that is negative because I will probably let them have it with both barrels.

I've posted on my Facebook page a lot of information about Celiac disease and gluten intolerance.  I've had a number of my friends contact me because they've noticed they have some of the symptoms.  (I give them my doctors' names and suggest they see them!)

When they ask about my not being able to eat bread, I let them know that I eat a lot of bread!  I tell them about the gluten free bread I bake at home with Jules Shepard's flour and how my home made bread is so much better than any store bought bread!  That usually surprises people. 

I tell them that while I eat differently than they do, there's almost nothing I can't make gluten free. I eat really well these days.  I miss nothing about my old gluten filled diet and I enjoy having my health back!

Edited by terryjwood

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I've posted on my Facebook page a lot of information about Celiac disease and gluten intolerance.  I've had a number of my friends contact me because they've noticed they have some of the symptoms.  (I give them my doctors' names and suggest they see them!)

When they ask about my not being able to eat bread, I let them know that I eat a lot of bread!  I tell them about the gluten free bread I bake at home with Jules Shepard's flour and how my home made bread is so much better than any store bought bread!  That usually surprises people. 

I tell them that while I eat differently than they do, there's almost nothing I can't make gluten free. I eat really well these days.  I missing nothing about my old gluten filled diet and I enjoy having my health back!

Yep, the old saying "Health is Everything" is so true!   Glad you are feeling better!  

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