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Breila

Ignorant Comments

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I've only been at this a few months, and I've already heard some doozies. I thought it would be fun to share your favorite comments from the uneducated masses, so to speak.

My two faves so far:

From my FIL: "Cobblestone Mill Sourdough Bread is gluten free." I don't know what ingredient list HE was looking at! Apparently, he has a wheat allergy but he can eat that fine, so it must be gluten-free.

And my fave from a Mom who wanted DS to come over for a playdate (I ended up packing his own snacks and told her it was probably safest to not take any chances with giving him anything other than what I packed): "well, we'll make sure he can have something. I just made some cookies and I made them with white flour, so they don't have any wheat in them." Ya know, because white flour comes from where, the "white" plant???????


Blessings,

Amy, mama to 3 awesome boys!

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I was once talking to some ladies at my churgh. We had just had a potluck a few days before, and i had made a cake. There were leftovers, so I had brought it home and ate the rest of it over the next few days. It got some crumbs on it from a regular cake that I didn't realize were there until it was too late. I was telling the ladies about it and that I got sick, and one lady said "Well, you only felt sick because you saw the crumbs" :blink:

I had to correct her on that! I said I got sick before I realized some crumbs from the other cake were on there. Then she said "I was just kidding."

I have gotten the comments a couple of times that "it is white bread, so there is no wheat"

Some people are just totally clueless!


ptkds

Mom of 4 beautiful girls (the 2 youngest are only 10 months apart!)
Diagnosed with Celiac disease on November 8, 2006; gluten-free as of 12-1-06.

DD#2 13 years old; diagnosed on November 28, 2006. gluten-free as of 12-7-06.
DD#3 9 years old; diagnosed through blood work in October 2006. Gluten-free as of mid-November and doing GREAT!!
DD#4 8 years old; had a scope done on 6-22-07 (at 14 months old) and the dr saw stomach ulcers, but all test results were negative. GI dr told us to put her on the gluten free diet anyway. She is gluten free as of 6-22-07.

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Oh my...just..wow. I'm LOLing right now.

Thats as bad as people who try and tell me chicken and fish aren't meat (I'm a vegetarian).

I'm like what are fish, strange sea plants with googly eyes???

LOL!

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Yep, I have heard the "White flour does not have wheat" more times than I can count. Yes, many people are ignorant of what they are eating.

I found a new one the other day. I bought a diabetic cookbook to assist in cooking for my husband. It has a "Flourless Chocolate Cake" receipe. The fifth ingredient is "1 cup of all-purpose flour". The receipe needs another name.


Phyllis

Gluten Free - 30 years

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I've gotten the "oh it's white bread, not wheat bread" comment before. Um duh.

"Gluten, is that like gluttony?"

"Oooo so you can't have sugar?"

"So you can't have whey?"

"I thought you just couldnt have bread"

"Hey, do these have wheat in them?" (while holding a box of WHEAT THINS)

Arg. Some people are *so* clueless.

I can't wait to see some more!!

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Well, I have to admit I was one of those ignorant people about the wheat and white flour connection, until just a few weeks ago when I made the connection to my wheat allergy. In fact, understanding the connection helped me to realize that I was suffering from more than a dairy allergy!

I am an educated woman, that was somewhat health conscious before hand and didn't favor "bread and pasta" and "white flour", but never had a reason to connect "whole wheat" with "white flour". Not until I figured out my intolerance, that is.

I think you will find that there are a lot of people like this, because of the way "whole wheat" and "white flour" are represented and marketed in our food. If you have no reason to think about it or obsess about wheat ingredients the way we must, the difference is very low on priorities for most.

Celiacs are now counted to be about 1 in every 133 people, or little more than 1 percent of the population. It will be our job to educate everyone else, and it is best when we do so without sneering.

If they are really clueless and just trying to help, then thank them and explain the difference. For me, the real ignorance is not from people who don't know about the disease or wheat, but who once knowing try to blame the celiac or suggest that we are overreacting or it is all in our head. Those people are ignorant to me!


-First overt but unrecognized symptoms after reintroducing dairy and wheat to my diet after a 2-month absence, 2002.

-First appearance of chronic aphthous stomatiti, 2002.

-Giardia infection and treatment with albenzole, 2005.

-Persistent symptoms and treated for Giardia again with Flagyl twice (without testing), 2006.

-Dx milk allergy from a blood test, April 2007.

-Also presented for anemia, high white blood cell count, and candida in the same test. Dx IBS, April 2007.

-Response to diet and self-diagnosis through overwhelming symptoms and possible genetic link (hypothyroidism, fibromyalgia runs in the family), April 2008

-Currently learning to go gluten-free (April 2008), and coping with new sensitivities.

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Well, I have to admit I was one of those ignorant people about the wheat and white flour connection,

I think this is more of a symbol of how far we are (as a society) from understanding what we eat. Few people cook from scratch, even fewer grow their own food.

Love the image of the googly eyed plants leaping out of the water to nip seeds from the waving fields of white.


"But then, in all honesty, if scientists don't play god, who will?"

- James Watson

My sources are unreliable, but their information is fascinating.

- Ashleigh Brilliant

Leap, and the net will appear.

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OK, I'll give you an example of my stupid, "duh and ah-ha" moment combined:

I was feeling miserable, but chalked it up to my previously diagnosed dairy allergy. I somehow worked up a rationalization (through extensive research) that I could be allergic to only whey and not casein, which meant I could tolerate cheese better (which I do). I have a housemate that is in love with Southern Italy and cooks extensive, hours- long Italian feasts. With my rationalization in tow, I was eating just about everything. My stomach and body was also crying out pitifully in private! I thought it was because of the cheese. He was the one who told me that the flour in pasta was the same as wheat ..... duh! But also - aha - because it confirmed and set everything that I had been going through into a suddenly vivid revelation. And here I am now. :P

An example that irked me:

A couple of weeks before I had this "aha" moment, another roommate had guests coming over for dinner who had a young daughter with a wheat allergy. She made a sneering comment about this girl's necessity to avoid wheat to us, the other housemates, which I thought was incredibly ignorant and bigoted, especially from someone who preaches equity and tolerance as one of her life's missions.


-First overt but unrecognized symptoms after reintroducing dairy and wheat to my diet after a 2-month absence, 2002.

-First appearance of chronic aphthous stomatiti, 2002.

-Giardia infection and treatment with albenzole, 2005.

-Persistent symptoms and treated for Giardia again with Flagyl twice (without testing), 2006.

-Dx milk allergy from a blood test, April 2007.

-Also presented for anemia, high white blood cell count, and candida in the same test. Dx IBS, April 2007.

-Response to diet and self-diagnosis through overwhelming symptoms and possible genetic link (hypothyroidism, fibromyalgia runs in the family), April 2008

-Currently learning to go gluten-free (April 2008), and coping with new sensitivities.

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I think this is more of a symbol of how far we are (as a society) from understanding what we eat. Few people cook from scratch, even fewer grow their own food.

So true. And if I didn't have to change my whole life around because of a dire health issue, I would still be eating out most of the time or eating prepared food (albeit from the food co-op). I certainly wouldn't be reading every label or walking around with my own condiments or paying more for food.


-First overt but unrecognized symptoms after reintroducing dairy and wheat to my diet after a 2-month absence, 2002.

-First appearance of chronic aphthous stomatiti, 2002.

-Giardia infection and treatment with albenzole, 2005.

-Persistent symptoms and treated for Giardia again with Flagyl twice (without testing), 2006.

-Dx milk allergy from a blood test, April 2007.

-Also presented for anemia, high white blood cell count, and candida in the same test. Dx IBS, April 2007.

-Response to diet and self-diagnosis through overwhelming symptoms and possible genetic link (hypothyroidism, fibromyalgia runs in the family), April 2008

-Currently learning to go gluten-free (April 2008), and coping with new sensitivities.

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Hi All,

Here's a few taken from the Irish Coeliac Society's Forum.

.

She probably has 'mild' coeliac disease, since she made it to 86 undiagnosed.

.

Went to the nurses, told them that he was coeliac, and they said that they knew that. I said that he'd been given an unsuitable breakfast, so one nurse went to get the person in charge of food. Told her that he was coeliac, and her reply was: "yeah, I know, he can't have salt, isn't that what coeliacs are.

.

I spoke to a coeliac yesterday who said that her GP tested her for EVERYTHING under the Sun, and when the patient suggested he check in case she might be coeliac, the doctor said that she couldn't be a coeliac because: (wait for it)

"YOU DON'T LOOK LIKE A COELIAC"

So, we've a new test for celiac disease: a mirror. If you look like a coeliac, you must BE a coeliac.

.

David


Chronically Ill and lost 56lbs in 3 Months Prior to Diagnosis.

Diagnosed in Nov 2005 after Biopsy and Blood Tests

Cannot tolerate Codex Wheat Starch.

Self Taught Baker.

Bake everything from scratch using naturally gluten-free ingredients.

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Good Lord, I have a collection of comments! and when I try and educate people they look at me like I go to a lot of extra work for nothing cause THEY are so sure that their opinion is correct.

and the ignornace extends to diabetes as well:

Here goes:

When people find out my son is Type 1 diabetic :

- well its not so bad, he will be able to take pills when he is older"...um okay, like he is going to convert to a Type 2 ?

- he had too much sugar when he was little.

Celiac:

- [from sister who is a nurse] Give them a granola bar, it doesnt have flour

- giggling sister in law : TWO toasters, that's weird

- they will outgrow it - my cousins did!

- is this a fad diet?

- you much be rich if you can afford to buy all this "organic" stuff....[umm other way around , I am not rich cause I have to drive all over / order online and research flour mixes]

- maybe your kids fake it to get attention.

I am sure that anyone with a chronic medical condition runs into this stuff all the time.

My wish is that people would ask questions rather than assuming things about diet or health matters

Sandy


Sandy

Type 1 diabetes - 1986

hypothyroid -1993

pernicious anemia

premature atrial beats

neuropathy

retinopathy

daughter is: age 15

central hypotonia and developmental delay

balance issues (rides an adult 3 wheel bike)

hypothyroid 1996

dermatographia - a form of angioedema 2002

celiac 2004 - by endoscopy

diagnosed Aspergers at age 7 - responded very well (HUGE difference) to gluten-free diet

recovered from Kawasaki (2003)

lactose intolerant - figured out in Oct/06

Gilberts syndrome (April/07)

allergy to stinging insects

scoliosis Jan 2008

nightshade intolerance - figured out April 2008

allergy to Sulfa antibiotics

son is 13

type 1 diabetic - 2003 diagnosed on his 9th birthday

celiac - 2004 by endoscopy

lactose intolerant - figured out Nov/06

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:lol: Thanks Irish daveyboy. I am still new at all of this, and still mourning (and somewhat still in denial) about the loss of Guinness. I literally don't have the guts to try it again, though.

Can you recommend any good gluten-free stouts or pils?

*If you have tried any, of course. I am making a somewhat educated guess that Ireland is probably further along in figuring out better substitutes than the U.S. I have an innate distrust of the Annheuser-Busch company.


-First overt but unrecognized symptoms after reintroducing dairy and wheat to my diet after a 2-month absence, 2002.

-First appearance of chronic aphthous stomatiti, 2002.

-Giardia infection and treatment with albenzole, 2005.

-Persistent symptoms and treated for Giardia again with Flagyl twice (without testing), 2006.

-Dx milk allergy from a blood test, April 2007.

-Also presented for anemia, high white blood cell count, and candida in the same test. Dx IBS, April 2007.

-Response to diet and self-diagnosis through overwhelming symptoms and possible genetic link (hypothyroidism, fibromyalgia runs in the family), April 2008

-Currently learning to go gluten-free (April 2008), and coping with new sensitivities.

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- maybe your kids fake it to get attention.

Sandy

Yep. I'm starting to sense this one more and more, especially from one of my housemates.


-First overt but unrecognized symptoms after reintroducing dairy and wheat to my diet after a 2-month absence, 2002.

-First appearance of chronic aphthous stomatiti, 2002.

-Giardia infection and treatment with albenzole, 2005.

-Persistent symptoms and treated for Giardia again with Flagyl twice (without testing), 2006.

-Dx milk allergy from a blood test, April 2007.

-Also presented for anemia, high white blood cell count, and candida in the same test. Dx IBS, April 2007.

-Response to diet and self-diagnosis through overwhelming symptoms and possible genetic link (hypothyroidism, fibromyalgia runs in the family), April 2008

-Currently learning to go gluten-free (April 2008), and coping with new sensitivities.

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What a great thread!

Reminds me of a few things --

Mostly in relation to weight. While at dinner with my almost 80 year old mother, she says Oh you getting so fat (and in the same breath) here finish this.

Here on the Big Island of Hawaii the nick name is the Healing isle so called for the plethora of alternative health therapists, raw foodists and refugees from the 60's. :rolleyes: They they found out about my celiac they all offered variety of free services and foods to help. Spelt, organic wheat, organic oats, organic barley, home made bread, wheat grass and so one. Well they now understand the difference but it is an education process.

On the other hand there are a number of intolerant people out there who come to some of the public events or buffet dinners

where I try to make people aware of cross contamination issues. A few months ago I asked a woman to use the spoons with each dish rather than the same spoon for everything (as she piled on the third layer on her plate) She simply turned and said "why dont you just eat sheep sh*t" -- I was too stunned to comment as were her friends who I knew. Some people just don't understand and think celiac is a choice like being vegetarian.

A comment I read about people being out of touch with the source of their foods is very true. My friend in Japan studies this and started holding seminars around the country when his older daughter drew a picture of a chicken with 4 legs.

Ken


"Ryo tatereba mi ga tatanu"

If we try to serve both sides, we cannot stand our own ground.

Japanese proverb

Celiac.com - Celiac Disease Board Moderator

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My friend in Japan studies this and started holding seminars around the country when his older daughter drew a picture of a chicken with 4 legs.

:lol: :lol:

This would be a great avatar, if you could get the picture. I'd love to see the design she came up with!


"But then, in all honesty, if scientists don't play god, who will?"

- James Watson

My sources are unreliable, but their information is fascinating.

- Ashleigh Brilliant

Leap, and the net will appear.

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I keep forgetting to ask him -- One of these days...

quote name='Jestgar' date='May 7 2008, 09:08 AM' post='426463']

:lol: :lol:

This would be a great avatar, if you could get the picture. I'd love to see the design she came up with!


"Ryo tatereba mi ga tatanu"

If we try to serve both sides, we cannot stand our own ground.

Japanese proverb

Celiac.com - Celiac Disease Board Moderator

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Last night I was at a buffet with friends and I had gotten salad (brought my own dressing), mashed potatos, and meat. I got...

"how come you can't have bread but you can have potatos?" (which is kind of understandable i guess)

"how can you survive without bread its soooo good" (yeah i know bread is good, thanks)

and then i cant even tell you how many times ive been asked if i was on atkins.

then my friend tried to tell me i could have a twix bar, i was like what do you think that cookie is in the middle? and we argued for a bit about who was right.

the best one yet... "I WISH I HAD THAT SO I COULD STOP EATING CARBS"


gluten free since 12/07

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I think this is more of a symbol of how far we are (as a society) from understanding what we eat. Few people cook from scratch, even fewer grow their own food.

Love the image of the googly eyed plants leaping out of the water to nip seeds from the waving fields of white.

AHahahahahahahha! :D Ah God bless you. I was feeling like crap and that last line made me LMAO.

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:)

"But then, in all honesty, if scientists don't play god, who will?"

- James Watson

My sources are unreliable, but their information is fascinating.

- Ashleigh Brilliant

Leap, and the net will appear.

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I had minor surgery and had a red bracelet clearly stating that I was "allergic" to wheat/gluten, soy and milk. I asked the nurse who checked me in to make sure to put in my chart that I wasn't to be given anything to eat except what my husband brought in. (I was afraid I might be a bit out of it and would eat whatever they gave me.) The nurse replied, "Don't worry, we don't have wheat crackers, just saltines." She was shocked when I told her that saltine crackers were made of wheat flour, because they were white! After I woke up, a different nurse came in and told me that she knew I couldn't have crackers, so she brought me pudding. I was awake enough to ask where she got dairy-free, soy-free pudding. She was completely surprised to find out that pudding was made with milk! Scary to think that these professionals are supposed to take care of sick people. How could a nurse get through nursing school without even basic nutritional knowledge?


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

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I was at a restaurant in Austin, and they had corn tortillas on the menu. I asked the waiter if they contained wheat flour. He went back to the kitchen and returned to tell me it was safe to eat them because there was no wheat flour. Then he continued to tell me there was no flour in them at all. So I asked him what they were made from, and he said they were made from : tortilla flour.

Seriously.

I did not eat them.

I did read a story from the UK a few months back where reporters went around the country asking kids and adults what french fries were made from. Don't quote me on the numbers, but something like 60% of the people didn't know french fries came from potato :huh: Lots of them thought it was some sort of flour/egg mixture or something!

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Hi All,

Here's a few taken from the Irish Coeliac Society's Forum.

.

She probably has 'mild' coeliac disease, since she made it to 86 undiagnosed.

.

Went to the nurses, told them that he was coeliac, and they said that they knew that. I said that he'd been given an unsuitable breakfast, so one nurse went to get the person in charge of food. Told her that he was coeliac, and her reply was: "yeah, I know, he can't have salt, isn't that what coeliacs are.

.

I spoke to a coeliac yesterday who said that her GP tested her for EVERYTHING under the Sun, and when the patient suggested he check in case she might be coeliac, the doctor said that she couldn't be a coeliac because: (wait for it)

"YOU DON'T LOOK LIKE A COELIAC"

I find this to be absurd for another reason: even when doctors have a classic celiac and they look like a celiac (according to their own reasoning) THEY STILL CAN'T DIAGNOSE IT CORRECTLY AND RAPIDLY. Who are they (gastros) kidding?!

So, we've a new test for celiac disease: a mirror. If you look like a coeliac, you must BE a coeliac.

.

David


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 2006It 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

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I didn't put any milk in this casserole, I just doubled the cheese instead.

Here is some peanut butter since he cannot have peanuts. What?!? Peanut butter is made from peanuts? I thought it was made from butter.


Shellfish free since 1980

Milk free (all forms) since 1991

Feingold in 2003

First gluten-free round 2007

Now entering full time Gluten free, egg free, almond/peanut free

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all these 'teachable moment' opportunities! ;)

waitress - "oh, our rice balls are okay, they're coated in panko"

another server "the chef says just read the menu, all the ingredients are listed there"

me: "what about the meatballs, those usually have breadcrumbs or oatmeal or something to bind them"

server: "let me check"....returns to table, "yes, you were right, there are breadcrumbs in there"

funny, those breadcrumbs were not listed on the menu...

somehow it doesn't bug me when folks (just about everyone it seems) say

"that must be soooo difficult"

I tell them no, I feel so much better that it is easy to be motivated, just a lot of label reading (especially initially).

I think we should start a celiac zoo - 4 legged chickens, googly-eyed "sea vegetable" etc! :lol:

I now realize how lucky I am to have cousins with a farm who let me visit a lot as a kid.


gluten-free (except unintentionally) from 7 Dec 2007

3 gluten-free cousins and counting (1 gold standard, 1 pos blood/no endo, 1 self/dietary diagnosed)

suspect mother was celiac (also, cousin suspects my mother's twin is celiac)

Feb 08 testing 'normal range' for gluten antibodies, IBD and food allergies

Staying off gluten - dietary reaction is compelling for me!

"Hi, I'm the gluten-free diner at your table."

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I'm new here...newly diagnosed too. I will say, I LOVE this thread. People have said some of the strangest things to me since my diagnosis.

A co-worker is always wanting to buy me lunch and for some reason thinks that celiac means I cant eat meat and he is constantly trying to get me to eat fish sandwiches! After explaining for the 100th+ time that I cant eat them, he tells me "it's okay, the bread is made from whole wheat".

:lol:

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