Till I'm Blue In The Face!

[Nicolette]

Okay, I know I've only been diagnosed for just over two weeks, but I've explained my condition a lot to people, as I'm sure a lot of you have too. My in-laws, in particular, ask a lot of questions about my 'diet' and I thought I'd got them to understand, but then yesterday, my f-in-law said:

"So when you've been on this new eating regime for about ayear and your gut is better, i guess you could be out one day and eat a sandwich and you'd be okay?"

AAGH!

Was I not clear enough? I tried explaining it again, but I don't know if it was just me, but I felt like I was being over-picky. It was just the way he was looking at me as if he was really thinking "oh, it can't be as bad as she makes out". I felt like I was being a drama queen, when I know I'm not.

I guess I'm not just one for confrontation. But why don't people GET IT?

[Guest nini]

I just don't bother explaining it anymore to people who "don't get it"... something about the "diet" mindset of most people... they have this idea that a diet is temporary, where this is a permanent medically necessary lifestyle change. When people say things like that to you, just a simple "no" will suffice, and leave it at that. If they really WANT to know more and are really willing to listen then you can spend your time trying to educate them. You could always tell them to check out this site!

[pixiegirl]

Believe me, I bet almost all of us on this list have had similar experiences along the way.... the way I explain it now, is this: I explain it in the medical/scientific way but I end my lecture with: its like an allergy, even a crumb of gluten will make me ill, this "allergy" is life long. Using the words allergy (which most people understand) and life long helps some.... but guess what? There are still people that just don't get it, I don't know why they don't but they don't.

I use to get mad/frustrated at them but I realized that was hurting and stressing me more then anyone else... so I decided if I wanted those people in my life (most of them I did) and I now just accept them for who they are. In my head I just say they have Celiac impairment... they just can't get it no matter what. Around those people I did have to change some things.... I won't eat at their houses, its just not safe for me, but I'm happy to have them here or go out with them. So it takes some adjusting but if you like them and want to keep them in your life, you are probably going to have to be the one to adjust. That may not be fair but its less stress then trying constantly to change them.

good Luck! Susan

[bluelotus]

I think part of it is that people have never considered food to be poisonous ..... how could something that brings them comfort be so devastating to someone else? And, the medical community does very little to rectify this problem. People seem so unaware of how food can affect the body, celiac disease or not. Just consider how a Gluten-free Casein-free diet helps those with autism and ADD. The whole situation is just ignorant and frustrating.......sometimes I'd rather just scream than explain. Trust me, many of us have been (and/or are) in your situation.

[tarnalberry]

If someone told you that something you do every day, something you take for granted, something that is a very normal part of your world, will kill them if they ever have it again, you might find it hard to believe too. You don't, in this case, because you have some experience with what happens to you if you eat wheat, but it is a non-trivial concept for people who are not familiar with what all can go on in the human body to understand.

I know it sucks, but it's not that people are stupid so much as habitual. Give them some time, but have confidence in yourself. They don't have to believe you, after all, they only have to understand what your choice is.

[Nicolette]

In my head I just say they have Celiac impairment...

<{POST_SNAPBACK}>

Susan, I like that! Celiac Impaired (LOL)

[nettiebeads]

"So when you've been on this new eating regime for about  ayear and your gut is better, i guess you could be out one day and eat a sandwich and you'd be okay?"

I guess I'm not just one for confrontation. But why don't people GET IT? 

<{POST_SNAPBACK}>

Well to give your f-i-l credit, he seemed to have been trying to get his mind around your condition. You can't change the way people think or look at you regarding celiac disease, but you can control your reaction to them. You are new to this and it is probably a little overwhelming - your new diet/lifestyle, explaining to others as you come to grips with it your self. I'm the only one with celiac disease at work, and I keep getting offers of cookies, homemade breads and such. I just simply say "I can't eat that" and let it go. I know it's harder with family, but give them time. After awhile when they realize that this isn't a temp fix for a problem (like dieting to lose weight) they will come around. And of course, we're here for venting and ideas to deal with the problems from celiac disease.

[Eliza13]

I also think that a big problem is the way that "food intolerances" are framed in our society. They are framed as digestive problems/allergies, not as auto-immune disorders. As we all know on this board, it is the auto-immune reality and associated disorders that make celiac a major health problem for most of us. Diarrhea notwithstanding, think of the M.S., lymphoma, arthritis, lupus, chronic fatigue, brain fog, PCOS.....etc...you get the picture....As long as celiac is incorrectly framed as just another allergy, we will always have this problem. When someone asks you about gluten, it may be best to start by saying that celiac is an auto=immune disorder and then talk about how it is related to a zillion other auto=immune disorders....stay away from the word "allergy", even though that may be easiest. You could also do what others on here do and just keep it simple: "I can't eat gluten".

SKAR

[ms-sillyak-screwed]

Well, I'm on a mission to educated EVERYONE about celiac disease. If a stranger talks to me. I change the subject around and talk about celiac disease. I tell everyone, people in stores, at the post office, where ever, I don't care if they think I'm a little nutty. Maybe we can educate people we come in contact...?

While my eldery terminal Auntie is in the hospital, everybody I meet, I tell them about celiac disease and gluten. I tell the nurses, doctors and the nursinghome staff.

You see, I'm beautiful and when people look at me. They say, "Oh, you have a great figure. How do you stay in such good shape?" I tell them "You don't want what I have!" I hand out cards from the GLUTEN FREE AWARENESS program you can print them out at Open Original Shared Link Or when I go to the doc, they look at me when the walk in the room and say, "You look great what are you doing here?" Then when they open my chat they say "OH! I see..."

Old people don't understand perhaps cause of dementia and old age they can't wrap-their-heads-around the idea. Gluten is poison. I have an 83-year old uncle that is/was a chef and it took about 4-months of talkin about what I can and can't eat. Finally he got it. They invited me for dinner. He got it right. Thank you God. God is good!

So, my friends please don't stop talking about celiac disease, and yes they really [don't get it]. But if enough of us D-R-I-L-L it into their heads maybe we can get through to a few of them.

[cornbread]

Modesty is also a VERY attractive feature!!

[ianm]

I you got it flaunt it, whatever it takes to get the word out.

[frenchiemama]

I tell everyone about it too. I want people to be educated about what celiac disease is. Think how many people are suffering needlessly for lack of information? Some people don't get it at first, but I just keep answering their questions.

[KaitiUSA]

I tell everyone I can about celiac. Some people get it and some people don't. For those that don't get it I feel sorry for them because I can't imagine how they get through life...there are much harder things to understand.

If they don't get it don't worry about it. I know it can be frustrating...there are people I have told over and over again but still don't seem to get it.

[Claire]

Old people don't understand perhaps cause of dementia and old age they can't wrap-their-heads-around the idea. Gluten is poison. I have an 83-year old uncle that is/was a chef and it took about 4-months of talkin about what I can and can't eat. Finally he got it. They invited me for dinner. He got it right. Thank you God. God is good!

<{POST_SNAPBACK}>

Contrary to public opinion. dementia ia rather uncommon among the elderly. I worked with the elderly for several years and know for a fact that much of the confusion and disorientation that we see is drug induced. In one facility where I worked a psychiatrist called in to do evaluations refused to do so. He said he would come back in two weeks if all the mind altering medications were removed. Some illnesses cause mental fog in the elderly - but in young people too as some of this forum will acknowledge. It is a real shame that dementia is associated with the elderly as it is. Likewise people think all old people wind up in nursing homes. The statistics are roughly 10% of those over 65. Not such bad odds.

Excuse me for being sensitive to this but a personal experience comes to mind whenever the word 'dementia' comes up. In the last days of my mother's life she was indeed confused and more than a little crazy. I took her to a Geriatric Center for evaluation and the first thing they said was 'dementia'. I was off the walls. I told them I would accept that only after they had done all the blood work, done all the tests to establish that there was no medical explanation for her condition. Three days later they were profoundly apologetic (not to mention embarrassed) to acknowledge that indeed there was a physical condition that was responsible for her mental status. The elderly have a harder time getting a fair shake than celiac disease patients do! Claire

[skbird]

OK, to bring this back to the original subject, if someone is nodding, like they get it, but I don't think they really do, I explain, it's like a peanut allergy. You know how some kids can't even be in a cafeteria with someone eating a peanut butter sandwich? Well, I can be in the cafeteria, but if even one crumb from that sandwich ends up in my food, I'll be sick. Then they start understanding.

I have to borrow a lot from allergies to get the point across, but it does help.

Stephanie