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http://www.contracostatimes.com/mld/cctime...ia/15449891.htm

Celiac no picnic

By Kelsey Farabee

THE WAITER sets my salad in front of me, and once again I begin the tedious process of picking out the croutons.

I have celiac sprue, an autoimmune disease that prevents me from eating gluten. Unfortunately, gluten is everywhere, since it is a protein found in wheat, oats, barley and rye. Even though I was diagnosed five years ago, I still often forget to order my salads with no croutons.

Celiac disease affects more than 2 million Americans. The gluten found in most breads and cookies, as well as in envelope adhesive and some shampoos, inhibits nutrient absorption in people with celiac.

Celiac typically goes undiagnosed for many years, since it can appear during different stages of life and the symptoms are varied or do not appear at all. I was asymptomatic, my growth was not slowed, and my case would have gone unnoticed for many years had my mother not requested a specific blood test because I have Type I Diabetes. People with diabetes often also develop celiac, since both are autoimmune diseases.

Having celiac has led to some major changes in my life. I eat the cheese and toppings off of pizza because I cannot eat the crust, I have my own freezer at home filled with specialty breads, and I have eaten only half of a single Noah's bagel in my entire life. I always plan ahead and have food with me when leaving the house.

I love to eat out, which becomes a challenge with celiac. I have grown accustomed to the strange looks waiters give me as I insist that, really, I do not want a bread basket. People also commonly assume you are on the Atkins diet when you mention that you cannot eat wheat.

Luckily, the Bay Area is a food haven, and many restaurants, such as P.F. Chang's and Outback Steakhouse, have special menus to accommodate people with diet restrictions.

P.F. Chang's will clean a new wok before stir-frying to ensure that your meal is not contaminated with gluten, and per request they will use special gluten-free sauces on most dishes.

Lark Creek Walnut Creek has a knowledgeable staff and can provide a pleasurable dining experience.

Many local grocery stores are also great places for gluten-free diners. For example, Whole Foods Market carries an array of delicious baked goods made by the Gluten-Free Bakehouse. Based in North Carolina, the Bakehouse is a large, completely gluten-free facility. They offer different flavors of breads, cookies, muffins and pies, among other things. The prices are high compared to common grocery store fare, but the taste is well worth it.

Trader Joe's stocks many celiac-safe products and will provide a gluten-free product list. Harvest House in Concord has an entire aisle dedicated to gluten-free treats and freezers full of gluten-free entrees.

Despite the hassles, having celiac has not been a terrible experience for me. Though it is sad when friends go out for pizza and I am stuck with a salad, it has opened my eyes to a wide variety of new foods and made me more adventurous. I find myself eating more fruits and vegetables that I would otherwise. Rice and potatoes are staples of my diet, and luckily, I love to eat both.

The number of diagnosed cases of celiac has increased rapidly in the past few years. As the market base grows, better tasting gluten-free food has become easier to find.

My response....can I suggest a few more?

Celiac no picnic By Kelsey Farabee

Date: Today 10:49:23 am

From: sl <in my profile>

To: letters@cctimes.com

Dear Sir/Madam

It is with a combination of frustration, regret and disspointment that I read

your misguided and ill informed article "Celiac no picnic - By Kelsey

Farabee".

Your article begins "THE WAITER sets my salad in front of me, and once again I

begin the tedious process of picking out the croutons."

It continues "I eat the cheese and toppings off of pizza because I cannot eat

the crust".

This article is both dangerous to other celiacs and misleading for the general

public and to anybody reading this undoes years of hard work by celiacs in

educating the general public and hospitality business on the need for gluten

free.

Allow me to continue by saying that a single crumb of bread or any other

gluten containing ingedient is more than sufficient to make a celiac very ill

for several weeks and contributes to long term chronic and fatal diseases and

that to even suggest that picking out croutons or eating pizza toppings from

a pizza base will not make a celaic ill is completely irresponsible.

Luckily many diagnosed celiacs will recognise the article for the sham it is

but some will by wishful thinking convince themself that this is indeed

acceptable and will jeapardize their health but this is really only the tip

of the ice-berg.

Your writer continues "I was asymptomatic, my growth was not slowed, and my

case would have gone unnoticed for many years had my mother not requested a

specific blood test because I have Type I Diabetes." This indicates she has

no idea of the damage she is doing to herself by not sticking to a gluten

free diet and no idea when she has been poisined by the gluten but the real

tragedy of this article is that many of the waiting and kitchen staff readin

this article now beleive that you can just pick croutons out of a salad.

As celiacs have been trying to explain for many years the amount of gluten

needed to make them ill is miniscule, stirring the food with the same spoon

is more than sufficient as is grilling a steak on the same grill as something

containing gluten, even cleaning the pots and cooking implements with the

same cloth can contaminate the food cooked with the implments.

Eating out for celaics, even at a gluten friendly chain like PF-Chang's is a

crap shoot. You stand up to the plate and take your best shot with the waiter

and hope that your food is not contaminated. Getting his across to catering

staff is hard enough without misleading articles like this being printed.

I could go on about the battles parents have to keep their diagnosed children

on the diet by explaining they can't even touch something with gluten for

risk of a crumb ending up in the mouth or the hard work they have making sure

their children are safe in schools but this would only be a begining and now

the mom's will be trying to tell their kids why they can't pick the toppings

of a regular pizza and we would only just be starting the long list of hard

work that has been undone by this article.

I would hope that you retract this article as soon as possible and print a

retractment and I am sure with a little research and effort this can be

turned into a positive statement and perhaps save Kelsey's life.

Screening of the American population shows 1:133 people with celaic disease

yet only 1:4000 or less are actually diagnosed although this number is fast

increasing. As these newly diagnosed celiacs are diagnosed they are usually

confused and I am afraid this article will simply confuse them further.

Yours faithfully

Stephen Lord


Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

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Guest nini

thanks for posting that... unfortunately the person that wrote this article is like the majority of misinformed Celiacs... I've met quite a few that believe that they can eat Cheerio's and Quaker Oats with no problems and that eating the toppings off a pizza are acceptable... This is why we really need to pump up awareness and inform these people of the damage they are doing to themselves (and this person is doing to the celiac cause by putting out bad info like this)...

October is Celiac Awareness month, do your part, get involved. Educate someone.

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thanks for posting that... unfortunately the person that wrote this article is like the majority of misinformed Celiacs... I've met quite a few that believe that they can eat Cheerio's and Quaker Oats with no problems and that eating the toppings off a pizza are acceptable... This is why we really need to pump up awareness and inform these people of the damage they are doing to themselves (and this person is doing to the celiac cause by putting out bad info like this)...

October is Celiac Awareness month, do your part, get involved. Educate someone.

I just did, I sent the email to the newspaper. :D

I think if they receive 10 or 100 emails in a similar vein it may have a profound educational effect..especially as I invited them to turn this around into a positive piece!

Check the link.. send an Email.


Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

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Guest nini
I just did, I sent the email to the newspaper. :D

I think if they receive 10 or 100 emails in a similar vein it may have a profound educational effect..especially as I invited them to turn this around into a positive piece!

Check the link.. send an Email.

LOL I know YOU did, I was just doing a general post awareness for anyone else reading! I am going to send a response too. I had to take my daughter to school so didn't have time to do it earlier.

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After reading what she wrote I saw she is just a 17 year old girl that may not know any better. We maybe should come from a place of helping to educate her rather than being critical to her. She is probably just writing what she believes to be true


Nostaglia is a file that removes the rough edges from the good old days!!!!

" 15 years of it's stress!"

"blood work show's a disease called celiac,

but it can't be that because it's rare!"

Diagnosed via blood and biopsy 2003

Not a medical professional just a silly celiac

offering support, my

experience and advice

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After reading what she wrote I saw she is just a 17 year old girl that may not know any better. We maybe should come from a place of helping to educate her rather than being critical to her. She is probably just writing what she believes to be true

I'm not advocating writing to her but to the newspaper that published this.

My letter is one example and people are free to write whatever they like although I rather hope noone here is going to advocate picking out croutons!

A mixed response would probably be more effective IMHO anyway with some attempts to educate the "poor little girl" and others attacking the news paper for publishing a dangerous and misleading article under the guise of an editorial.

The point for me is making something an editorial does not exclude preventing harmful untruths in a public media.


Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

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Guest nini

that was the approach I took Tavi... I said that the author is young and was probably given bad information to begin with so hopefully we can not only help save Kelsey's life but other Celiac's who also believe that it is ok to simply pick the croutons off the salad or eat the toppings off a pizza. The fact is that even if you are asymptomatic, it only takes a molecule of gluten to continue to damage the villi of the intestines, thus increasing your risk of certain cancers and other autoimmune disorders.

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I know what you mean, I am just thinking that an editorial is where people can write what they want. Maybe a follow up editiorial stating how dangerous her thoughts are, she just may not know better. I don't know I have been up half the night so am not thinking really clearly


Nostaglia is a file that removes the rough edges from the good old days!!!!

" 15 years of it's stress!"

"blood work show's a disease called celiac,

but it can't be that because it's rare!"

Diagnosed via blood and biopsy 2003

Not a medical professional just a silly celiac

offering support, my

experience and advice

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I know what you mean, I am just thinking that an editorial is where people can write what they want. Maybe a follow up editiorial stating how dangerous her thoughts are, she just may not know better. I don't know I have been up half the night so am not thinking really clearly

I am pretty certain she doesn't know better but what worries me is that a newspaper should at least do due diligence in not publishing potentially harmful information even in the form of an editorial.

For instance I doubt they would have published an editorial (or at least without wanrings) that insulin dependant diabetics should just stop injecting.

However, I still think both types of letter are useful.... and complimentary.

If you are too nice then the paper is unlikely to be guarded enough and if everyone is too harsh then they might just retract it but if they receive both then hopefully they will do a folllw-up ....obviously they won't publish the scathing letters ... but they can cherry pick the others..AND. make themselves look good in the process but they are IMHO more likely to choose to publish the cherry picked ones when they also receive the scathing ones!

Just my 2c though....


Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

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I'll write a letter to the paper, too (I'm a crazy, letter-writin' fool!)

Somebody needs to get in contact with this girl and give her the website for this forum...Yikes!

And I agree, gfp, that this is a dangerous article for those in the service industry to read. 7 years ago I WAS the waitress picking the croutons off the salad before I served it (granted, no one ever specifically and explicitly requested no croutons due to a food allergy).

-Courtney


Courtney - 25

Columbia, SC

Gluten-free since July 8, 2006

Casein-free since October 16, 2006

Went six weeks, and fell back into a deliciously painful world of cheese.

Casein-free (again and for serious this time) December 11, 2006

Stupid cheese addiction....2/07

Dx Hypothyroid in 1993

Dx Gluten & Casein Sensitive through Enterolab 10/06

Dx Adrenal *Exhaustion* 2/07

Originally from WI, I am still in denial over my newfound casein intolerance. I fear I will not be allowed back into the state if I can no longer eat cheese and drink milk. This could pose some trouble over holidays when I wish to visit my family. It also poses a problem involving the severe rage I feel when I have to throw away somebody's unfinished cheese sticks. That is so wrong.

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And I agree, gfp, that this is a dangerous article for those in the service industry to read. 7 years ago I WAS the waitress picking the croutons off the salad before I served it (granted, no one ever specifically and explicitly requested no croutons due to a food allergy).

-Courtney

Glad you picked up on that.....

I mean we go to all those lengths and explain a crumb will make us ill and then the food service industry people read that we are just being fussy and pulling out the croutons is perfectly OK?

I can imagine the kitchen chat....

"Oops.. just dropped the bread in that Roo burger"

"No don't remember the celaic training we had"

"Yeah sure but I just read that they can just pick them out.. its in the paper....They are just being faddy eaters.. just pull it out they'll never know"


Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

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Glad you picked up on that.....

I mean we go to all those lengths and explain a crumb will make us ill and then the food service industry people read that we are just being fussy and pulling out the croutons is perfectly OK?

I can imagine the kitchen chat....

"Oops.. just dropped the bread in that Roo burger"

"No don't remember the celaic training we had"

"Yeah sure but I just read that they can just pick them out.. its in the paper....They are just being faddy eaters.. just pull it out they'll never know"

Gfp, I imagine these conversations all the time when I'm at a restaurant, and I'm sure that lazy servers are leaving dropped gluten sources in our salads quite often. And because I don't get obvious GI symptoms when glutened, it is a big concern for me. That's why I always say that I am "deathly allergic" to gluten when I order my meal insted of "I am celiac and cannot properly digest gluten". It's factually wrong, but it plays to their ignorance and it sure gets their attention. :)


Emily

diagnosed type one diabetic 1973

diagnosed celiac winter 2005

diagnosed hypothyroid spring 2006

But healthy and happy! 253.gif

11 year-old Son had negative blood panel, but went on gluten-free diet of his own volition to see if his concentration would improve, his temper abate, and his energy level would increase. Miraculous response!

The great are great only because we are on our knees.

--Pierre Joseph Proudhon (1809-1865)

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I'm glad to read this. Sad that the person who wrote the letter is clueless....but as a parent of a Celiac child, it sure does OPEN MY EYES to the fact that I NEED to be educating my children, and not just providing their safe foods. They need to be taught that while it's perfectly fine to eat pizza at home, they can't go to pizza hut with their friends and just eat the cheese off the crust. Educating her is the only real way I can help her. I won't always be there to make her food choices for her, so this serves as an excellent reminder that while our home is safe for her...the rest of the world doesn't have her best interest at heart. And, I'll step up my "gluten-free education" in the home!


Jayhawkmom -

Mom of three....

Jay - 11

Bean - 8

Ian - 3

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You know,judging from the vast amount of people on this board that have been given cr@p advice from their doctors,my guess is there are alot of diagnosed coeliacs out there that think they can eat the topping off a pizza.

The majority of coeliacs who seek out a forum are quite motivated in wanting to stay healthy-and let's remember not everyone has access to a computer.

I for one would never have even known about CC if I hadn't of found this site (and one I use in the UK)

When my hubby was dx the only advice the doctor gave was that he

''must remain G.F ,it's very hard-and watch out for boiled sweets as they can be coated in flour''.

I've alway's took it upon myself to read up and gain as much knowledge as I can about any diagnosed illness' my family have -but some people don't.

They implicitly trust their doctors and have no desire to really understand what's happened to their bodies. :blink:


It's not enough that we do our best; sometimes we have to do what's required - Sir Winston Churchill

Nikki

Son diagnosed with Coeliac Disease Oct 2006 by biopsy (at age 13yrs)

black_cat.gif

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