Even People Who"know" Don't Know

[chrissy]

since so many people don't know what celiac is, it is always interesting when you talk to someone who does know what it is...........just the other day i was in the grocery checkout and when i said that my girls had celiac disease, the checker was commenting about how we had to change our diet and such. i asked her how she knew about celiac and she said "i have a niece who had it...but she outgrew it". we have a doctor that goes to our church. i was talking to his wife one day and she was tellilng me about a friend of her mother who had celiac, but it had gotten so much better----i told her that it doesn't get better (except with diet of course) when i realized that we were not talking in the same dimension, i just told her i would be interested to know what she had done????what else can you say? i wonder if maybe the lady had not been totally gluten free and had finally managed to be?

christine

[VegasCeliacBuckeye]

The problem is that people equate celiac disease with wheat allergy -- not the same thing!

[chrissy]

i'm even finding that some people either with celiac or that have family members with it, aren't necessarily up-to-date with their info.

christine

[cgilsing]

I don't know what to say when people say they or someone they know "outgrew" celiac disease! There was a lady that I used to work with who told me that she had it as a child, but then the Dr. gave her some meds to put under her tounge after she ate and it cured her. I just smile and nod

[angel-jd1]

Yep gotta love those people. My favorite is when people say "well _______ must not be as severe as yours, she/he just takes the toppings off of pizza" or insert any other dumb comment. It's not a matter of severity dumbbutt lol You either have it or you don't. It just means that I follow the rules to stay healthy!! People crack me up, you just have to laugh about some things or you will go insane.

-Jessica

[GlutenFreeAl]

Or, "Gluten intolerance, huh? My mom is lactose intolerant and she eats ice cream anyway." Love that one.

I find oftentimes that I tell people, inaccurately, that I have a wheat allergy. I've found that I don't get as many asinine questions (What happens when you eat gluten?) or dumb comments (gluten is like fat, right?)

Anyone else fudge the truth a little?

[cgilsing]

I always tell waiters/waitresses that I have an allergy to wheat/rye/barley! I figure that they probably have a greater respect for the word allergy than for auto-immune disorder......They probably don't know what wheat does to me, so if they think there is a chance that if they give me wheat that I'll fall out of my chair, go into seizures and die right there one the floor they probably will do their best NOT to give it to me....hehe

[teebs in WV]

It's funny that you guys are talking about this now. I was thinking the same thing today. I was in one of those moods where I just felt tired from trying to explain it. I wondered if it wouldn't be easier if I just told people it was an allergy. I think you are right - people would take it more seriously and understand the severity.

[happygirl]

My sweet 90 year old grandmother (who has some trouble connecting the dots, needless to say!) cannot grasp at all the concept....we just tell her its a wheat allergy. But she can't grasp that either. You should hear some of the conversations that go on in our house when she comes to visit. Sometimes you have to get up and leave the room bc you are laughing so hard. It is bad when the whole family is there (parents, us three adult children, and our significant others)

Grandma: "Are you allergic to chocolate?"

Laura: "No, I'm allergic to wheat."

Grandma: "Oh, well you can outgrow that you know. Your Aunt had an egg allergy when she was young and she doesn't have it now."

Laura: "Unfortunately, I can't outgrow this. I'll always have this."

Grandma: "So, you can't drink milk?"

Laura: "No, that's Cathy (my sister). She's lactose intolerant."

Grandma: "Well, you'll outgrow this. Your Aunt outgrew her allergy."

Laura: smiles and nods.

Pause

Pause

Grandma: "So, are you allergic to chocolate?"

[jerseyangel]

Laura--Your grandma, bless her heart, sounds like a sweetie

[happygirl]

Patti-Yes, she certainly is! We love her dearly. And that's why we feel bad, but the situation is just tooo funny not to laugh. In the less-than-48 hours that Eric and I were home for Christmas (and she came halfway through our visit), we probably had this conversation 10+ times. Sometimes multiple times in the same sitting. Needless to say, my poor husband left the room numerous times because he is not as used to her comments!

Off the subject-but this is also in the same visit that we hit a deer, I left Eric's suitcase in our apartment (yes, that means no clothes which we discovered once we got to my parents house, after hitting the deer), and Eric broke the towel rack in my parents bathroom......so maybe it was the combination of all these crazy events that made the "So, you can't eat chocolate" even funnier.

[jerseyangel]

Gosh Laura--that sounds almost like a National Lampoon Vacation movie scene! When so many things happen in a short time, you just gotta laugh . And Grandma's comments were the icing on the cake--hope everyone came away fine (except the deer, of course )!

[luvs2eat]

This was ME not long ago.... I really thought I was gluten-free when I was doing things like taking croutons off my salad and blowing away the crumbs. The fine folks here set me straight, thank goodness!!

[Clark Bent as Stupor-Man]

Almost every time I mention the word 'gluten' to somebody, they ask if it's a sugar.

[GlutenFreeAl]

So what, you're like a diabetic?

I've gotten that too.

I think "allergy" is the best way to explain it concisely and to have it taken seriously. People are aware of food "allergies" because of that poor girl who just died from kissing her peanut butter-eating boyfriend. But food intolerances? What a whiney bunch we are!

[cgilsing]

hehe I know....if you use the word intolerance people want to know why you don't just take those pills they sell for people who are lactose intolerant. Then we could eat whatever we want!

[CMCM]

  GlutenFreeAl said:

So what, you're like a diabetic?

I've gotten that too.

I think "allergy" is the best way to explain it concisely and to have it taken seriously. People are aware of food "allergies" because of that poor girl who just died from kissing her peanut butter-eating boyfriend. But food intolerances? What a whiney bunch we are!

My 20 year old son has the serious peanut allergy (we found out when he was almost two). I fear for him continually because this could possibly kill him very quickly if he got some "hidden" peanut (and yes, peanut is hidden in a lot of weird, unexpected things, too!). It's hard to make people understand the seriousness of his allergy. I remember a person saying, 'But can he eat peanut BUTTER?" Jeez....

That report on the girl who died just gave me chills of fright. I had a big discussion with his girlfriend about the kissing thing...not sure she understood, though.

At least with gluten, for most of us, it just makes us sick to varying degrees, but one exposure won't endanger our lives.

[Shweta]

  luvs2eat said:

This was ME not long ago.... I really thought I was gluten-free when I was doing things like taking croutons off my salad and blowing away the crumbs. The fine folks here set me straight, thank goodness!!

Me too! Well, actually, I was very careful in the begining. As I was getting better, I thought a little gluten here and there won't harm. So I sometimes had wheat containing soy sauce (you cannot ask for a wheat-free soy sauce in a Chinese restaurant) or just removed croutons from the salad. But, upon reading this forum, I have come back to my senses. Thanks everyone!

[Guest nini]

I had someone say to me yesterday "well it's not like it's an allergy or anything..." WHAT???!!! It's worse than an allergy in my opinion!

Also, no you can't always request wheat free soy sauce at a Chinese Restaurant, but you can certainly carry your own! I do!

[NYCisTHEplaceTObe]

i was out eat a couple weeks ago with friends and i didn't feel like risking eating so i had eaten beforehand. it was just applebees after 10 (1/2 price appetizers, you aren't a college student until you have done that lol). there were a few people with us that i didn't know very well so i just said i have a wheat allergy and they didn't ask any questions.

the only thing i get when i say that is, just eat white bread! i love that one!

[Melzo]

  GlutenFreeAl said:

Or, "Gluten intolerance, huh? My mom is lactose intolerant and she eats ice cream anyway." Love that one.

I find oftentimes that I tell people, inaccurately, that I have a wheat allergy. I've found that I don't get as many asinine questions (What happens when you eat gluten?) or dumb comments (gluten is like fat, right?)

Anyone else fudge the truth a little?

I have been recently (fudging the truth). Especially at restaurants. It is so much easier to say that I have a severe wheat allergy and if my food has any wheat products around it my face will turn beet red and my throat will close. And when they walk away I just say to myself "Just Kidding." That always is the easier, more understandable route. People just don't understand what "gluten", "celiac disease", or "intolerance" means. But they ALL know what an allergy is.

[debmidge]

Laura - your story about your grandma reminded me about my husband's grandma. A few months after we were married, she kept asking me if my father allowed me to stay out until midnight on new years eve (it was New Year's eve that day). I kept repeating after each time she asked, that Mike & I were married now (I was 22 yrs old but looked 18 still). Finally, to end it, I told her "yes, my father is Ok with me being out late as he likes your family" (or something like that) and it ended the questionning.

You must almost want to wear name tags around grandma stating your name and your particular allergery or gluten intolerance or "My name is ____, and I used to have an egg allergy." Keeps the players straight. I know with husband's grandma we had to resort to keeping notes posted on the kitchen wall as to where we all were or what the news was, or what she should eat for lunch and dinner. My mother in law would go out and leave her a note that said "You already ate dinner. Open thermos for tea and there's pound cake in pantry." Otherwise she'd cook dinner all over for herself as she would forgot that she ate.

[casnco]

  cgilsing said:

I don't know what to say when people say they or someone they know "outgrew" celiac disease! There was a lady that I used to work with who told me that she had it as a child, but then the Dr. gave her some meds to put under her tounge after she ate and it cured her. I just smile and nod

I would like to have that Pill!!!!

[happygirl]

Deb-I swear, we must have the same grandma

We leave notes on the bedroom/bathroom doors upstairs because she gets confused as to which room is which. And yet, she still tries to open a locked, bedroom door when she is looking for the bathroom.

Two Christmas seasons ago, my husband couldn't make the trip up to my parents in PA (we were in AL) due to work. He was covering the Auburn - VT Bowl game in New Orleans for the TV station he works for. So I came home instead (newly diagnosed-the thought of eating out for a week terrified me!). The whole time, my grandma kept asking where Eric was. I'd keep telling her, and then she'd ask 5 min later, how come Eric didn't come up.

I think I might suggest to my mom about the nametag thing. Although, she might fall out of her seat when I tell her!!!

[once and again]

The concept that gluten intolerance could be outgrown was common for those diagnosed before 1954 or 56 - I forget the correct date for when the connection was discovered. I was diagnosed in 1947, but my parents were told that I would outgrow it. I was one of those kids on the "banana diet". My older cousins remember my having a mashed up banana in an ice cream cone while they had ice cream. Obviously, that didn't really do any good. My mother was told that she should avoid giving me "fats".

Anyway, it did seem that I had outgrown it. Although I had symptoms I didn't really connect them to anything other than stomach upsets. Didn't eat a lot of wheat products but also did not notice anything in particular when I did. Was not re-diagnosed until 2004!!!!