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Wow, People Really Don't Get It...


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#31 samcarter

 
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Posted 18 August 2008 - 08:01 AM

Hi all- I'm new here. My doctor didn't get a positive blood result but has me off of gluten, caffeine, and dairy until we can figure out why I feel like crap.

Anyway, last Friday at work someone was kind enough to bring in bagels and cream cheese for the whole group for breakfast, and a cake for lunch...and set them in the cubicle next to mine. All day people were stopping by and asking me why I didn't have any. I explained to two of my coworkers what was going on and the one asked if I could have white bread. I told her that white bread had wheat in it. She came back with, "well then why do they call wheat bread wheat bread and white bread white bread?" :o Really? I mean, she's a nice girl and she's actually pretty smart too...but REALLY?

They're bringing in cupcakes on Wednesday, so I'm sure I'll hear it all over again.


I would think work would be the hardest place to be gluten free. People look to food as a way of taking a break, of getting together. Back when I was in the working world, food was always in the break room: "Hey! Jeri brought doughnuts!" and if you didn't eat any, "What, are you on a diet?" (Implication: You're making us feel like gluttonous pigs!) At work it's all about fitting in, not being conspicuous...at home it's less like that. And friends, if they are real friends, will not make you feel weird for having a true medical reason for avoiding gluten.

And yeah, I've gotten the "You can have white bread, right?" from my very sweet neighbor. She told me I should get "bread flour" to make my bread, since it's not whole wheat. :blink:
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Negative EMA test 8/08
Gluten free 8/08
Positive response to dietary change
Dairy free 3/09
Citrus free 5/09
Allergies: bananas, apples, green beans, mold.

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#32 lonewolf

 
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Posted 18 August 2008 - 08:54 AM

And now I am really dreading the neighborhood block party tonight. There will be food I cannot eat, so I will just eat a Larabar or something and drink my water while peope say, "Haven't you tried the pasta salad yet?" or "Do you want one of these brownies?"

We're supposed to bring a dessert; my husband will just pick something up at the store, because I cannot be bothered to bake something I'm not eating! :P


When you get more comfortable with gluten-free cooking, try making a gluten-free pasta salad to share and a gluten-free dessert to share. I do this all the time and my food always gets eaten up. I even send gluten-free desserts (usually a berry cobbler) to my husbands work parties when he needs to bring something, since I won't have wheat flour in my house.
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Liz

Started Specific Carbohydrate Diet on 8-16-09 because son was diagnosed with Ulcerative Colitis and want to give him moral support.

Diagnosed with Minimal Change Nephrotic Syndrome in 2003. Discovered that going completely gluten-free put me in remission.

I would have despaired unless I had believed that I would see the goodness of the Lord in the land of the living. Psalms 27:13

#33 aim301

 
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Posted 18 August 2008 - 09:07 AM

I have to say, it's only been about a week for me, but I had two functions this weekend, and my friends and family have been fantastic. My sister is a mother through and through, and she was so sweet, checking labels, looking stuff up on line, asking me what was okay, etc.

At my friend's house, it was more luck than anything else. But my friend asked, can you have potatoes? can you have corn? He didn't mind me asking about ingredients. And the only thing that was on the table that I couldn't have was garlic bread and pasta salad. When the bread came my way, I said "No thanks" and that was that.

But like I said, it's early, so I'm sure I'll have my share of annoyances soon.
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#34 gooseberry

 
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Posted 20 August 2008 - 08:44 AM

I have to say I have been really lucky at work. Sometimes they forget, but for my birthday they got me one of those fruit flower bouquet things so I could eat for my own birthday celebration!!
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#35 celiac-mommy

 
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Posted 20 August 2008 - 10:05 AM

I got this one recently:

"This is totally OK for the kids to eat, I made sure and only used graham crackers" :huh:
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Rachelle 20dance.gif

Daughter diagnosed 1/06 bloodwork and biopsy
-gluten-free since 1/06

Son tested negative-bloodwork (8/07), intestinal issues prompted biospy (3/08), results negative, but very positive dietary response, Dr. diagnosed Celiac disease (3/8)


#36 debmidge

 
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Posted 23 August 2008 - 05:21 AM

I've told this before, but it's been a while now. At work, I just can't make them understand. One lady was sitting at my desk eating french bread. I asked her to leave my desk, "Why, I'm not dropping anything?" I told her you can't eat bread without dropping crumbs, especially french bread, besides the fact, while eating it she was touching my calculator, my phone, my desk, my pens...everything. She put the bread away, I walked away to get some toweling and cleaner for my desk, came back and she was eating it again.

Often times they will have crackers, apples, and cheese. They get upset with me because I will not eat with them. I do not feel safe, the CC issue is always there with them.

Some people will understand in time, some will never get it!!!



Deb: This woman sounds like she's on a "passive/aggressive" power play with you. Are you sure she's not sabatoging you deliberately? -- Deb
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Husband has Celiac Disease and
Husband misdiagnosed for 27 yrs -
The misdiagnosis was: IBS or colitis
Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,
most prestigious medical groups in northern NJ which constantly advertises themselves as
being the "best." This GI told him it was "all in his head."
Serious Depressive state ensued
Finally Diagnosed with celiac disease in 2003
Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.
Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle
Developed neuropathy in 2005
Now has lymphadema 2006
It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

#37 Kauk

 
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Posted 23 August 2008 - 10:06 PM

So yesterday i took my kids with me to visit our neighbors (elderly, husband has MS and doesn't get out much, sweet, adorable people we love). The wife is always offering me something to eat--usually cookies or quick bread or something. They asked how I was doing and I just said I hadn't been feeling well lately, but had stopped eating wheat and noticed a big change, and that my doctor was okay with it (he did say that if it made me sick, to not eat it).

The husband seemed to understand, but the wife...well. She knows I love to bake and said, "Oh, that means you can't eat your own bread!" She then went on to advise, "I get this flour at the store, it's called "bread flour" and I bet you could use that, it's not wheat flour." I told her that all flour, unless it says otherwise, is made from wheat. She said, "really?" :o

Later she asked, "What about cookies, you can have cookies, right?" I said, no, not if they were made with flour.

Then she brought out a box of cranberry quick-bread mix (I think Krust-ease or something) and said, "Here, read the label, see if there's anything you can't have." I took it and pointed out, "Wheat flour, first ingredient."

Meanwhile her husband was just shaking his head in disbelief. :lol: She's not unintelligent, it's just I think honestly the general public doesn't understand that wheat is in practically everything. And it's not "Whole wheat" that's the problem (that's what she thought about the bread flour issue). There's just not anything out there that the average person hears about gluten intolerance or celiac.

She did also ask, "Well, just a little bit won't hurt you, right?" Her husband said, "Hey, if she's feeling good without it, she don't need to eat it!" :D



Nope, people dont get it. My own father thinks..OH...you just cant eat bread...big deal....I could have smacked him!!!
FEW, realize whats all has gluten in it. My staff member tonight got a quick lessen and she was shocked. lol

HUGS
Rebecca
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Gluten Free for 3 years.
An Aunt came to me and told me she Celiac Disease. (Had not spoken to her in 8 years) She said I should be tested and I did, however I had never heard of it before then.
I suffered with severe depression since 14. Took two kinds of meds that didnt help me at alll. After Celiac, I take no meds at all and feel great.
I am a new woman and life has changed. :)

#38 Kauk

 
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Posted 23 August 2008 - 10:08 PM

I got this one recently:

"This is totally OK for the kids to eat, I made sure and only used graham crackers" :huh:



Hahahahahaha!! Thats like saying to a person with a peanut allergy.."I use smooth not crunchy" hahahahaha.....
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Gluten Free for 3 years.
An Aunt came to me and told me she Celiac Disease. (Had not spoken to her in 8 years) She said I should be tested and I did, however I had never heard of it before then.
I suffered with severe depression since 14. Took two kinds of meds that didnt help me at alll. After Celiac, I take no meds at all and feel great.
I am a new woman and life has changed. :)

#39 wilem008

 
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Posted 24 August 2008 - 06:34 PM

Recently I tried to book a tour with an American tour company. The price of the tour included lunch (a choice of chicken, beef or turkey sandwich, a muffin and a piece of fruit). I asked the operator if he could organise something else for lunch as I cant eat wheat.

He replied with:

"Hmm, the rolls are wholmeal. What if we make the sandwiches with white bread, can you have white bread?"

!!!

I was a little shocked actually.

I ended up getting a salad - that was TOTALLY covered in Ranch!! Boo!
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Diagnosed with IBS - October 2007
Despite testing negative in bloodtests - still getting Celiac symptoms.
Gluten Free trial begins - May 2008
Positve dietary response! Woo!
Lactose free aswell - December 2008

#40 tiff001

 
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Posted 29 August 2008 - 08:29 AM

Some of my family members also think it is funny to poke fun at cross contamination. They say things like, "What if the clerk touched some gluten two years ago?"



UGH! My mom always does that. The other day we were at the park, and I said I had a headache, and she said, "oh, maybe you're allergic to air"

<_<
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#41 JNBunnie1

 
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Posted 29 August 2008 - 01:10 PM

UGH! My mom always does that. The other day we were at the park, and I said I had a headache, and she said, "oh, maybe you're allergic to air"

<_<

Proper response: "No, I think I'm allergic to you."
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If you're going through hell, keep going. ~Winston Churchill

#42 darlindeb25

 
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Posted 29 August 2008 - 02:03 PM

Deb: This woman sounds like she's on a "passive/aggressive" power play with you. Are you sure she's not sabatoging you deliberately? -- Deb


No, she isn't that smart. She truly does not understand the "why's" of gluten intolerance. She honestly does not think she is dropping any crumbs, and she does not understand how easily she could make me ill. She would be very upset if she really did make me sick, yet she can't understand the importance of not having gluten in my work area...none of them do.
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Deb
Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

#43 cmom

 
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Posted 29 August 2008 - 06:43 PM

Reminds me of my MIL...instead of saying "I made this really good _________, but I know you can't eat it!", it's "This is really good, but I know you WON"T eat it." She thinks I do it to get attention or to get people to feel sorry for me. She never will use the word "CAN'T" :)
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Robin from Indiana

#44 CeliacMom2008

 
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Posted 29 August 2008 - 07:19 PM

We were going to an all inclusive water park for a day with my son last spring break. I called numerous times to discuss the meal situation. They have a policy of no outside food in the park. On one of my calls I thought I had really explained myself well and this time the woman was going to check on the exact menu (previous calls had always ended in them not giving me the menu but telling me they would accomodate any dietary need I just needed to check in at the restaurant a little early). So the lady comes back on the phone and sounded so excited.

"We have a very extensive menu and I'm sure your son will be able to find something he can eat. Our breakfast menu is:

Bagels
Croissants
Assorted Pastries (which she listed something like 10 different pastries)
Donuts
Assorted Muffins (again, big list)

Oh, and fruit - oranges, bananas, and apples"

Nope, definitely didn't get it. But she was right. He could eat the oranges, bananas and apples. B)

I also had a very close friend who we moved away from several years ago (so now we are just phone friends and she doesn't see the day to day stuff) tell me the other day how easy my life was getting compared to what it was like back in January. She didn't mean it badly at all, but she just didn't get how challenging being the mom of a young Celiac can be. The day before her comment I had spent 5 hours being a gluten-free mom - 2 putting together an info sheet for school, 1 at the school with teachers, and 2 in the kitchen preparing meals. As you know, that's just normal. Shopping, cooking, preparing treats for EVERY kid in the class's birthday, etc. takes a lot of time and effort. I do not complain about our new lifestyle. It's 100% worth it and I truly don't mind, but I'd never say it was "easy". The next day I sat with my son on the bathroom floor while he had D and then worried all day about how he was doing at school, and, and, and. You all know how it is. It's doable. It's something to be thankful for because it's an illness that can be fixed without chemo or surgeries. It's rewarding (to see the transformation that occurs as you or your child become healthy). But "easy" isn't one of the words I'd use to describe it.

On the other hand, some of my son's friends' parents have really "gotten" it. One friend went online and instead of sending cookies or cupcakes to school for their birthday, they sent tootsie rolls, snickers, and other gluten-free candy! :D
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#45 MissyH

 
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Posted 30 August 2008 - 09:05 AM

Seeing this has made me feel all warm and fuzzy! :lol:

Bear in mind I am always open and clear..upfront about this..saying..
'I can't eat wheat products with wheat, oats, barley and rye in them..

but I've had..

What? Why can't you have pizza? What is in pizza that you can't have then?
'Oh just have one sandwich..it won't hurt your diet'
'Brown bread is ok right?'
'oh just peel the pastry bit off it'
'yup..the sauce is fine for you..I made it with flour and..........what? Flour isn't ok? Why is that then?'

They are gettig used to me at work..ish..now..but I made a huge batch of 'from scratch' gluten-free lasagne last weekend and I had loads of complaints as they all said it smelt so good that I took some in for those who complained..
They happily ate it and said it was really good..and then asked why it was that I could have lasagne when I can't have pasta? One woman said 'you obviously are trying to be a 'celebrity fad diet type' or something because you DO REALLY eat pasta etc..cos there IS lasagne sheets in that!!' (while laughing and wagging her finger at me) ..to which I mentioned that it was gluten-free lasagne....

I have been refued at restaurants because they think it's a nut allergy and won't serve me even a plain salad in case I suddenly die..yes..they told me this...! :rolleyes:

Some of my friends are great though..and my ex boyfriend..all fairness to him..there were two cooking sauces I loved..his idea was to get teh sauce and then go buy al the spices and make it from scratch with cornflour....which is now why I make the best lasagne in town! :D
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