29 replies to this topic

[Chad Sines]

It amazes me how upset we often get when friends, family, and coworkers do not "get" Celiac. A lot of our posts here revolve around waiters who do not get it, store managers, and other food prep people. But in all honesty how many of us had any clue about Celiac before we realized we had it? Even with all our research since that diagnosis, we are still learning. I have to say despite my medical training I did not get it at all other than the avoid gluten thing. I think we need to learn to give the world a break.

[kareng]

It amazes me how upset we often get when friends, family, and coworkers do not "get" Celiac. A lot of our posts here revolve around waiters who do not get it, store managers, and other food prep people. But in all honesty how many of us had any clue about Celiac before we realized we had it? Even with all our research since that diagnosis, we are still learning. I have to say despite my medical training I did not get it at all other than the avoid gluten thing. I think we need to learn to give the world a break.

What the H#%% are you talking about, You %&$% Red Solo Cup!



I try not to get mad if people are asking honest questions, politely asked. I would be mad if a place has a gluten-free menu & the servers seemed clueless. I guess if my hub or family just kept refusing to listen or even try I would call them an %&$% Solo Cup.

I had a bartender ask lots of questions about it. Thought this is odd. Turns out his younger bro just got diagnosed with Diabetes 1 & the doc had told his whole family to be tested for Celiac as its much more
prevalent in the families of D.M. patients.


Disclaimer- I was kidding in the first line.

[IrishHeart]

Angry? who's angry?! F you buddy.



Chad, This is what I was trying to say in another thread earlier today. Try to be patient because not everyone has the knowledge. Hell, I have been reading everything I can about this disease for 2 years and I still am learning.


Who among us knew what celiac or gluten was before we had to learn about it? Anyone? Anyone? Bueller?

Educate the masses. Explain. It takes just a minute.

If someone in your life knows about it-- and still gives you grief or is just plain rude or cruel --that's different. (that may be grounds for getting my anger on!)

And I am with Karen--if a restaurant offers gluten-free items, the staff should be prepared to answer questions and handle the food with care.

I had a chef ask me tons of questions when we spoke after I was glutened at his upscale restaurant. He was very upset because he went to great pains to educate his staff and make his kitchen a place for allergen-free prep. Turns out, the gluten-free cake I had tasted was from an outside bakery and he never thought it would be an issue. He was very grateful I told him what happened and sent me a gift certificate for dinner and wants me to come into the kitchen, meet him and see all the gluten-free pastas he has.

I have educated my dentist, massage therapist, physical therapist, and many others. They wanted to know. I was happy to explain.
(I can't get my own extended family to hear me out!) I choose my battles.

We can be ambassadors or we can be "surly celiacs". But, how does that promote our cause?

Disclaimer: I was kidding in the first line.

[Juliebove]

I got it at least partially before my daughter was diagnosed. I must say she has food allergies and not celiac so not quite the same. I post to a diabetes newsgroup and a man there had a wife who had celiac. He explained that she could not have a salad that had so much as one crouton on it that had been picked off. So that part I got. But I didn't understand all the ways in which a food could become cross contaminated. Such as a shared fryer. And I didn't know to read every label every time. I had to learn that the hard way.

I also do not work in the food industry. And I don't want to for many reasons. But if I did, I know I would be very careful with the food.

I also think I am more cautious than most people when it comes to giving food to children. There is no way I would offer any sort of food to a child unless I spoke with the parents first. If I have a child at my house, I always ask the parents things like... Is there anything they are allergic to? Is there anything they shouldn't eat? I was very careful with my daughter's diet even prior to the food allergies. There were certain things she just was not allowed to eat and drink.

I get annoyed because I not only have food allergies but diabetes. And that's another thing people don't understand. Sure there may be some diabetics who will eat whatever they want, whenever they want. I have seen them. I will reserve my opinion on that! I am not one of those people. So I tell people... Please do not offer me any food. I can eat when I can eat and no other times. So if you invite me to a meal at some odd time like 2:45, do not expect me to eat! If you are having cake and ice cream for a birthday, do not expect me to eat it. And please do not try to come up with some alternate food for me because I can not eat it, whatever it is.

I would say that I maybe don't get all that angry but just frustrated. I have always tried hard to remember what people are allergic to and what they can't eat. My brother has an aversion to mushrooms. My SIL has an aversion to mashed potatoes. She will eat any other form. Just not mashed. My friend has an aversion to coconut and she also can not eat onions or any form of peppers because of GERD. My mom also can not eat onions, peppers and is not supposed to eat wheat or eggs but she does. Wheat bothers her arthritis and she is allergic to eggs. I also know that I am not supposed to mention her diet to her. She is very touchy about it. So if she does eat wheat or eggs I had best just shut my mouth and not say a thing. And then I am expected to provide sympathy when she gets sick afterwards.

So yes, it is very frustrating.

[Chad Sines]

I get the educating the masses and agree with that. i was reading older posts here and on other sites today and it just seemed to me that there was a recurrent theme where we transfer our anger about the disease onto people who do not understand/have it. That thought intrigues me.

[red island]

I think that there is a higher incidence of venting here because we don't want to be always complaining about our situation to the people in our lives. Speaking for myself, I have already had friends distance themselves since I have been diagnosed and am afraid that the people I have left in my life will get sick of hearing me vent. I try to keep things informative and add a bit of humour when I am talking to them but honestly, there are times when you just have to let off steam and this forum is perfect because everybody here understands and is going through the same thing.

[Chad Sines]

that is a good point.

[kwylee]

Why Do We React With Anger When People Do Not Get It?

I think your answer is in your question. They're reacting.

Years ago I was property manager for a high rise office building downtown. One day in a staff meeting a building engineer commented that he couldn't keep up with the machines dispensing the feminine products in the buildings' ladies rooms, seemed the knobs constantly needed fixing. Now, I'm female and never held back with a staff of men. I explained to him that it was natural for these machines to see this type of wear and tear, given that everyone who used them was having a bad week. Once the engineers considered this, they never really complained about it again.

I think that people who react are really just projecting other feelings, like fear, physical pain, maybe even despair. My guess is they stop reacting so much once they feel better. I've heard some bonehead things come out of the mouths of doctors and others regarding gluten, but I've honestly never gotten mad at them. But I've also never felt as much fear, physical pain or despair as many have on this forum. I just try to show the reactors as much tolerance as I give the boneheads who don't understand about gluten. Because I understand they don't understand...yet.

[Skylark]

For me the anger comes when the person who doesn't "get it" has put me in a position where I am forced to either risk eating gluten or not eat entirely. I've gone to both formal and family events where bringing food was impractical, I thought I had made arrangements, and gotten to the event to find out that whatever idiot I talked to on the phone lied about some aspect of having gluten-free food. Something looks suspicious and I can't verify ingredients; sometimes the gluten-free food is not there; more than once after eating that a meal I had been assured was gluten-free I was told "oops" it had a gluten ingredient. It seems pretty natural to me to get angry in that sort of situation, particularly if I'm in for a ruined evening because I've essentially been poisoned. I see people get angry about a lot less.

[tennisman]

My Mum was diagnosed with celiac disease when I was 10 and I understood it well and I was only 10 ! Even my italian granny who doesn't understand much english or italian :S understands celiac disease and how we can't have any gluten . I think a lot of people not all but a lot act stupid on purpose to get a reaction out of us .

[IrishHeart]

I get the educating the masses and agree with that. i was reading older posts here and on other sites today and it just seemed to me that there was a recurrent theme where we transfer our anger about the disease onto people who do not understand/have it. That thought intrigues me.

I think many people vent anger ON HERE so they do NOT vent on other people. It's safe and we GET IT.

That's what a support forum is for!

[mommida]

We've been gluten free over 7 years now. It is just the occassional person that gets on my nerves. People really over step their bounds, especially when children are involved. I do try and post about about the nice things people have done. Like handing me new food items, saying I found these and they are labeled gluten free so I bought this for you.

I usually tell people that you will find out who you friends are.

You would have this post up during f(*&n Fat tuesday when everyone is scarfing down frickin Paczki (Polish stuffed doughnuts)

[codetalker]

For me the anger comes when the person who doesn't "get it" has put me in a position where I am forced to either risk eating gluten or not eat entirely.

A very long time ago, I worked in a child care facility for troubled kids. One of the things we were taught during our training sessions was that anger usually comes from frustration. When people experience frustration, that frustration can express itself as anger.

It is safe to say that the life of a celiac is one of constant, continual and unrelenting frustration. Even �healed� celiacs with the diet under control still have to deal with incompetent medical professionals, cross-contamination of otherwise gluten-free food and unintended glutenings from well-meaning family and friends. As a result, it is understandable for celiacs to be angry. While the expression of that anger, esp. when directed at the causes of the frustration, is rarely productive, the expression on this forum in the form of a rant is probably therapeutic.

It has been mentioned that people who �don�t get it� simply have not learned about celiac disease yet. The implication is that once they learn about the condition their behavior will change. I think that assumption requires a footnote.

The initial symptoms of glutening are gas, bloating and D. The fact of the matter is that these three are elements of something called bathroom humor. Whether we like it or not, there is a significant segment of our respective societies that think bathroom humor is funny, if not outright hilarious. In regard to celiac disease, these people �get it�. They just think it is funny.

A local radio station, WMMR, once did a send-up of a celiac singles site they came across. They had a clip that imagined a group of celiacs getting together to meet and socialize. Suffice it to say that the sound of celiacs passing gas was the running gag. There was also the celiac guy that walked over to the celiac girl and said he �heard� her (passing gas) on the other side of the room and couldn�t take his eyes off of her. The radio guys were ROTF while the clip played.

I think we have to accept that:

- there are people who will never �get it�.
- there are people who do not care enough to try to �get it�.
- there are people who �get it� and think �it� is hilarious.
- Non-celiacs will always pose a risk of unintentional glutenings.

Consequently, celiac anger is inevitable and will be with us for a long, long time.

[kareng]

Sometimes its just "fun" to say what you would really like to say, but wouldn't because it really isn't appropriate.

I have to say that people who don't think white flour/bread is made with wheat does confuse me. the wheat seems to be referenced in commercials, TV shows, books, Middle school cooking class & health class, Church (bible)....lots of places.

[IrishHeart]

I think we have to accept that:

- there are people who will never �get it�.
- there are people who do not care enough to try to �get it�.
- there are people who �get it� and think �it� is hilarious.
- Non-celiacs will always pose a risk of unintentional glutenings.

Very Well said, Codetalker!


Here is what I have learned:
We cannot change the way people behave/think,
we can only control how we respond to those people.

I have every right to be angry about what happened to me, but to continue to live in seething anger is not going to help my recovery much. I lost 5 years of my life to this thing.

We don't get to choose what happened to us, only what we do about it.

I choose to educate. I choose to be on here and help others who need assistance--as I once did.

If members of my family (or the rest of the population for that matter), does not "get" celiac, there is not much more I can do.
I gave them the info; they have either read it or they haven't.
I have lost more than enough sleep over it.

Just my humble opinion.
Best wishes, all!