People That Know Better

[stef-the-kicking-cuty]

Uuugh, I'm sooo mad . Actually the day began so good and then this. We just came back from New York and I had cravings for our good old german chocolate I used to eat back in germany. So my husband and I went to the german grocery store, I use to go frequently, on the way home. I went straight to the shelf with the chocolate, which I knew was glutenfree from the german celiac board. And while grabbing them I had another munchie thing in the corner of my eye, which I also always used to love. So I grabbed it and looked on the label. The guy at the cashiers desk (he's the son of the woman who ownes this shop) noticed this and asked, if I'm looking for something special. I said "No, I just was looking, if there's anything with wheat, rye, oats or barley in this, because I can't have it." He said "Oh, you're the third person since last week that said they can't have wheat, when they shopped in here" or something like that. I just said "Oh really?" and actually I wanted to hear more and was quite interested.

He turned to his mother who was sitting in the middle of the shop around a table talking to somebody. She said "Oh, you can't eat wheat? The woman who is employed here has the same thing. She's allergic to wheat." I looked at my husband, he looked at the woman and said: "I wouldn't argue about this" and left the shop right away. I said "Yes, but I'm not allergic to wheat. I suffer from celiac disease and can't have wheat, rye, oats or barley. (for the 2nd time now)" She said, "oh yes, yes, it's a wheat allergy. You can't have gluten, right?" I said "Yes, it's gluten, but it's not an allergy. There's a difference between a wheat allergy and celiac disease. Celiac is not an allergy, but an auto-immun disease. I can't have wheat, rye, oats and barley, or my body will attack itself... (now I stated this wheat, rye, oats and barley-thing for the 3rd time already)" she interupted me "Honey, every doctor you go to, will tell you, you suffer from a wheat allergy. This is the same thing." Now I got mad "I suffer from this disease almost all my life and you can believe me, when I say, I have not a wheat allergy. There's a wheat allergy and there's celiac disease..." She started again. I just said "whatever" and left the shop. I was really pissed. My husband said in the car. "You can be a real jack ass sometimes." I was like "WTF...???" I can't believe this crap. I'm so mad. It's outrageous.

I don't want to hear now, that in the end it doesn't matter, if you have a wheat allergy or celiac disease and that you can't eat wheat anyway. Yes, it matters!!! Darn it! People need to know, they need awareness about what's going on here. Next time I fall over and the emergency comes they inject me an "antihistaminikum" because of my "wheat-allergy". And then they wonder why it's not working. It's freaking important.

And the other thing is, I hate people that can't listen. I said wheat, RYE, OATS and BARLEY for about three times. How can you be so stupid??? That's definitely a shop I will never shop again. I'm not supporting idiocy. I can get the same chocolate at Wegman's and I make the best dumplings on my own . If I'd only knew a way to let her know, that there is a difference between an allergy and celiac...

Sorry for my language here. I guess, I just need to rant. We do our best to raise awareness and then this...

[pookie]

Hi Stef. My name is Marina and I live in Colorado, I am not a celiac, but my husband is....and we have dealth with that same scenario over and over again. it used to make him mad too because you are right, it is TOTALLY different....but unfortunately those who don't have it, or don't know somebody who has it....are not educated, and chances are never will be because they don't deal with it. So, we learned to let people call it an allergy, it actually seems beneficial at restaurants, because "allergy" signifies he could have anaphylactic shock and death....whereas trying to explain that he won't die, it will just make him sick and cause damage to his intestines because it is an autoimmune disease.....and they look at us like deer in headlights.....so we decided to use words people understand. So, although I totally sympathize with your problem.....you just have to let it go and sum it up to you being more educated!

Hope that helped!

[celiachap]

Wer zuletzt lacht, lacht am besten.

[stef-the-kicking-cuty]

Hi Marina,

first of all, welcome to the board.

But you know, what bugs me most about this? I bet her employee who has this "wheat allergy" has actually celiac. She might just have a doctor that doesn't have a clue whatsoever (like mine) and she might never find out that also rye, oats and barley bother her.

And even though I tell people, it's an auto-immune disorder. I'm never telling them, that I can't die from it. So they don't know. I might as well die from it, just like with an allergy. I just don't tell them. When they ask what happens, if I eat gluten, I normally respond "If you don't pay attention what you put into my food, you can already practice to dial 911 now" or I look at them serious for a while and then say "You don't want to know, really, you don't want to know."

That mostly helps and they're getting the picture. But this woman didn't even let me speak

[stef-the-kicking-cuty]

Stimmt! Ich wünsche dieser Besserwisserin, dass sie die Zöliakie selbst kriegt.

[Guest gfinnebraska]

Stef ~ you were justified in what you said and how you are feeling. I don't know you or your husband, but it sounds like he needs to get on your "team" and support you!! If you are mad at them, then he needs to be mad at them too!! Just my opinion...

I thought I had a "wheat allergy" for years... I would be in really bad shape if I had stopped searching and just settled on that diagnosis. Yes, we need to get the awareness out more. I can't believe a person who owns a health food store would be that ignorant. Does the store have a web site? E-mail address?? It would be nice to send her a letter explaining the difference with quotes from sources that she would believe and understand. Maybe you could put together a letter and mail it to her. That way it would not have to be face-to-face, and she could read it and HOPEFULLY understand and become aware. Just an idea.

Sorry you had such a bad experience... rant away anytime!!

[KaitiUSA]

Stef-

I know exactly how you feel. People just associate it with an allergy and they do not know anything about it. They think they know everything but they don't and I don't think half of them want to learn. You have a right to be mad and your husband should have been supportive.

[Jnkmnky]

I totally agree with the allergy/intolerance issue. The wording is important, the meaning is not interchangeable.

I would like to point out, though, that you are teaching people the difference at those moments. You wouldn' t yell at a child who couldn't grasp what you're trying to explain. Try to think of the uninformed out there as little children with strong opinions based on poor information. They're not going to see the light quickly because that would necesitate a whole new way of thinking. This doesn't come easily to most people as it also requires a degree of ego deflation. Realizing you don't know something you thought you knew, is a blow to the ego on some minor level.

Definately tell people the difference. You are right in wanting to correct the knowledge. You are helping the entire situation by spreading the word accurately. You just need to not get so mad. You may not know the people your efforts at RE-education reach, but you will through patient explanations, spread the message and help people. Good job. Your husband has a point. It's the conflict that makes him uncomfortable. Try a new approach. You have great intentions, but need to work on your delivery!

[celiachap]

Stimmt! Ich wünsche dieser Besserwisserin, dass sie die Zöliakie selbst kriegt. 

<{POST_SNAPBACK}>

Well, I didn't get ALL of it, but I gathered that you agree that he who laughs last laughs hardest, that it's rough to deal with know-it-all people, Zoeliakie is German for celiac, and you wished (?).

Thanks for giving me some practice in translating words. I've tried to learn the language, but there aren't many people speaking it in NY anymore. Many people cannot even speak English here anymore.

Auf Wiedersehen

[tarnalberry]

I think, in that situation, it's important to stress the functional differences - saying "it would be easier if it were only a wheat allergy, because then I could have barley, rye, or oats" and noting "but an allergy is an IgE reaction, which can be treated with antihistamines, this is an IgG reaction, which can't be treated the same way at all". It sounded, in your post, that you were repeating yourself - saying the same thing - which is, particularly with people like that, bound to get you nowhere but frustrated.

As for your husband's response... I understand his feelings, but ... wow... that he actually said that. How uncalled for!

[celiac3270]

Hah--I was using a free translation site to keep up with the German.... I completely understand your frustrations--wheat vs. wheat, rye, barley, oats.

[stef-the-kicking-cuty]

Thanks for your understanding guys. I now consider writing her a letter in which I explain the differences. Yes, that thing with my husband blew me away completely, too. He was so understanding before and now this. Wow!

@ celiachap: Yes, you got it pretty much. "Stimmt!" means "Exactly", so I agreed in what you were saying! And the other part was not so nice, but I was so mad at the time. The other part meant: "I wish this know-it-all woman, that she gets celiac herself." No I think different about it, of course.

Greetings, Stef

[pixiegirl]

Oh I have mixed feelings about this... of course we all know its not a wheat allergy and totally different. I certainly try and teach people who say its an allergy that it is totally different. However, when I get the people like the woman that you ran into, I tell them once and move on. For me its not worth the aggravation of getting so pissed off. The only person you upset was yourself and your husband and whats the worth in that?

I hate to say that some people are either not smart enough to get this or they don't care or they are nasty people and see they are upsetting you and they continue to do that.... exactly because they like the reaction they get from you. My life is flying by... and I refuse to waste a single minute on those people. I'll tell them once and I'm done.

As far as your husband, well I know personally I want support from my partner however maybe he saw the futility of the situation and that must have frustrated him. Talk to him about it.

Best to you, Susan