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chocolatelover

So What Do You Tell People?

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Those of you with "just" gluten sensitivity, what do you tell people about your illness? I apparently do not have celiac, but I do have various related issues. It seems so much easier to just tell people that I have celiac even though I don't. I'm not sure that that feels right to me. Just wondering how other people handle it--to friends, restaurants, etc.


Dx'd with lymphocytic colitis 1/07

Dx'd by Enterolab 3/07--+IgA, +Ttg, DQ2 and DQ8

Dx'd celiac by Dr. Lewey 4/07--without +blood or biopsy

gluten-free 3/7/07

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You are intolerant to gluten, and you get sick when you eat it. You avoid it because it makes you feel better and got rid of the problems you were having. If they ask if its Celiac, you can say, its very similar to it :)

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I say I have food allergies. It doesn't matter if it's not exactly the correct terminology in that case. People automatically understand you have serious adverse reactions to a food and usually won't ask for further explanation beyond "what happens to you?" (to that I say, "I get extremely ill." Then I change the subject :))


"Let food be thy medicine, and let thy medicine be food." - Hippocrates

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yeah, for me the hard question isn't what do you have (gluten intolerant, celiac, wheat allergy, food issues all work depending on the audience and how long a conversation i want to have), but people always want to know "what happens?". I try "I get really sick", which sometimes does the trick. If pressed (which for some reason happens often) I use "it's like having a really bad stomach flu for a week". I don't know why people push this - what do they want to hear? Oh, I get crazy d for days, almost to the point of it being comical. Except it's not. At all. Happy?


Diagnosed through Enterolab (9.27.06)

Antigliadin IgA 164 (Normal Range <10 Units)

Antitissue Transglutaminase IgA 75 Units (Normal Range <10 Units)

Quantitative Microscopic Fat Score 874 Units (Normal Range <300 Units)

Fecal anti-casein (cow’s milk) IgA antibody 73 Units (Normal Range <10 Units)

HLA-DQ 2,1 (Subtype 2,5)

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I do have Celiac and I will tell people that I have a food allergy. It is easier than:

"I have Celiac Disease"

"What is that?"

"I can't eat gluten which is in wheat, rye, oats and barley."

"Oh, it's an allergy."

So they either go away thinking it's an allergy anyway or I have to spend more time explaining. I usually don't mind sharing. I want more people to know about it, but it's not always practical, nor are people always interested.


Stomach problems began November of 2005

Gall bladder removed April 2006

Positive Blood test October 2006

Refused endoscope

Gluten-free since January 21, 2007

Positive reaction to diet

The Lord gave, and the Lord has taken away; Blessed be the name of the Lord. Job 1:21b

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I certainly am interested in the least complicated answer. I have lymphocytic colitis, 2 celiac genes, malabsorption, clear gluten intolerance, high levels of IgA and Ttg, and am casein intolerant, which confuses things even more! Certainly can't tell people all of that or they'll freak out!

And BTW--I say "just" gluten sensitivity, because that's me too! No official celiac dx here...

:lol:


Dx'd with lymphocytic colitis 1/07

Dx'd by Enterolab 3/07--+IgA, +Ttg, DQ2 and DQ8

Dx'd celiac by Dr. Lewey 4/07--without +blood or biopsy

gluten-free 3/7/07

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If it's a restaurant I tell them I have celiac. They don't need to or want to know the details. I just need the same food accomodations as someone with celiac.

If someone is just politely asking about it in casual conversation I say I have celiac.

If someone who has a science or healthcare background asks, I say I have a condition that's a genetic variant of celiac disease.

Frankly, the phrases "gluten intolerant" or even worse "gluten sensitive" are so insulting to me that I can hardly stand it. I could barely walk for over two years. Those phrases make me feel like what I have is somehow considered to be easier or less than what celiac is.

I will never know for sure if I had the intestinal damage that gives the diagnosis of celiac. But until they come up with a better name for it than intolerance or sensitivity, I have celiac disease.

I have found that in a couple other support groups, one in particular in-real-life, that there is a feeling that people who don't have an official diagnosis are just getting on some sort of bandwagon and don't really have a problem. We're just intolerant, so how bad could that possibly be? So what right could me and my kids have to come to a meeting.

So in real life, unless I know another celiac very, very well, I say I have celiac.

It's only here that I say anything other than that. The only reason, and I mean the ONLY reason I do is that people who have negative tests need to know that it still is possible that gluten is causing their health problems. I couldn't stand it if someone who was suffering didn't at least try the gluten-free diet to see if it would help even a little.

Not that I have any opinions about it or anything. :lol:

Nancy


The person who says it cannot be done should not interrupt the person who is doing it.

~Chinese Proverb

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If it's a restaurant I tell them I have celiac. They don't need to or want to know the details. I just need the same food accomodations as someone with celiac.

If someone is just politely asking about it in casual conversation I say I have celiac.

If someone who has a science or healthcare background asks, I say I have a condition that's a genetic variant of celiac disease.

Frankly, the phrases "gluten intolerant" or even worse "gluten sensitive" are so insulting to me that I can hardly stand it. I could barely walk for over two years. Those phrases make me feel like what I have is somehow considered to be easier or less than what celiac is.

I will never know for sure if I had the intestinal damage that gives the diagnosis of celiac. But until they come up with a better name for it than intolerance or sensitivity, I have celiac disease.

I have found that in a couple other support groups, one in particular in-real-life, that there is a feeling that people who don't have an official diagnosis are just getting on some sort of bandwagon and don't really have a problem. We're just intolerant, so how bad could that possibly be? So what right could me and my kids have to come to a meeting.

So in real life, unless I know another celiac very, very well, I say I have celiac.

It's only here that I say anything other than that. The only reason, and I mean the ONLY reason I do is that people who have negative tests need to know that it still is possible that gluten is causing their health problems. I couldn't stand it if someone who was suffering didn't at least try the gluten-free diet to see if it would help even a little.

Not that I have any opinions about it or anything. :lol:

Nancy

I agree with Nancy, to me it is easier and safer when I am out to say Celiacs. Also at work function and I need something the what has been provided I use it. Otherwise people think I am just on a "fad diet" and I am picky.


"The only thing constant in life is change"

Celiac not confirmed, but positive results with diet change

Gluten free since 10/06

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There is this feeling of being "less than" if you are only gluten intolerant...I feel that too.

I do the same thing...I just say celiac when eating out, I didn't have official diagnosis either, and never will, I won't eat gluten again to find out.

My family is very understanding, so I don't have to say anything there.

Although, I just met up with one of my cousins, he has so many symptoms like I did, even the fatty stools!! He got the blood test yesterday, and will get an endoscopy next week. I am so curious to find out. I hope he gets the diagnosis, I think it's better to get all the tests done first.

I don't feel that less than feeling here though, that's why I am on this board everyday!!!


Gluten free since Sept. 2006

Improved on gluten free diet

Enterolab results confirmed suspicions on Jan. 29th 2007

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I simply say to waiters and people who dont me too well, I get violently ill. I can end up in the ER. That has always been enough for me. When it gets too bad, I actually do go to the ER to help me with the pain of getting thru it. I havent had to do that in a while now, Keep my fingers crossed!!


Stephanie

Gluten free since October 05

son born severly premature due to

celiac

"True love stories never end" Richard Bach

"Did you ever stop thinking and forget to start again?" AA Milne

If you live to be a hundred, I want to live to be a hundred minus one day so I never have to live without you" AA Milne

Swimming Instructor #2 and Town Crier of Rachelville

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My first line is that I'm allergic to WBRO. For most people, I don't need to go into details about how it's not really an allergy. Allergies they understand. My second line if they ask questions is that I have celiac. I'm self-diagnosed so it's possible I *only* have gluten sensitivity, but again, it just doesn't matter. The symptoms and treatment are the same so I don't bother differentiating.


Gluten-Free since September 15, 2005.

Peanut-Free since July 2006.

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Those of you with "just" gluten sensitivity, what do you tell people about your illness? I apparently do not have celiac, but I do have various related issues. It seems so much easier to just tell people that I have celiac even though I don't. I'm not sure that that feels right to me. Just wondering how other people handle it--to friends, restaurants, etc.

My friends range in intelligence from truck driver bowling buddies, who wouldn't know a gluten if it hit them in the face...to very intelligent people, who'd understand. I vary my answer depending upon who I'm talking to. "Too much wheat makes me sick" usually works just fine.

BTW, I noticed in your post above that you say you "Apparently do not have Celiac", but I saw your post re your enterolab results, and I gotta disagree with that. Take Care, Jerry


Dental Enamel Defects

Gastro symptoms

Positive Dietary Response

Enterolab Antigliadin IgA positive 12/06

Transglutaminase IgA Positive

Blood TG IgA Negative 2/07

HLA-DQ 3,1 (Subtype 7,5)

Gluten Intolerant...Likely non Celiac

Western Oregon (Or-ee-gun) US

Why Worry?...YOU are a sentient being on a habitable world in a cosmos largely filled with nothing.

You

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Jerry, here again we get into that fuzzy area of what is true celiac and what is not--and does it really matter? I guess I thought that since I don't have positive blood work and don't have a positive biopsy that it's not truly celiac. I have 2 copies of the genes and the stool test is very definitive to gluten sensitivity, but does that make me celiac? I don't feel that I'm any different than you--didn't you also have positive IgA and TtG through enterolab and negative blood work?

Not trying to "start" anything here--I'm just overwhelmed and confused about all this.


Dx'd with lymphocytic colitis 1/07

Dx'd by Enterolab 3/07--+IgA, +Ttg, DQ2 and DQ8

Dx'd celiac by Dr. Lewey 4/07--without +blood or biopsy

gluten-free 3/7/07

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Jerry, here again we get into that fuzzy area of what is true celiac and what is not--and does it really matter? I guess I thought that since I don't have positive blood work and don't have a positive biopsy that it's not truly celiac. I have 2 copies of the genes and the stool test is very definitive to gluten sensitivity, but does that make me celiac? I don't feel that I'm any different than you--didn't you also have positive IgA and TtG through enterolab and negative blood work?

Not trying to "start" anything here--I'm just overwhelmed and confused about all this.

OOOPs my MISStake....I didn't realize that you didn't have bloodwork. My thinking was just that

having symptoms...enterolab results and 2 copies of the genes..is enough to make me mighty suspicious. It's really hard to digest :lol: this all at once.


Dental Enamel Defects

Gastro symptoms

Positive Dietary Response

Enterolab Antigliadin IgA positive 12/06

Transglutaminase IgA Positive

Blood TG IgA Negative 2/07

HLA-DQ 3,1 (Subtype 7,5)

Gluten Intolerant...Likely non Celiac

Western Oregon (Or-ee-gun) US

Why Worry?...YOU are a sentient being on a habitable world in a cosmos largely filled with nothing.

You

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I don't believe I have a 'disease'. I just tell them I am gluten intolerant. I believe a group of idiot scientists genetically engineerd certain grains so that their gluten content be higher, to make bread rise better (and other sinister reasons like causing human suffering), making it harder for the human body to digest, and now I am sensitive to gluten.

I know this thinking is outside the box but I believe it is true. :ph34r:


Gluten intolerant - self diagnosed 2007 (not willing to do gluten challenge) and anemic

no dairy, soy, legumes, eggs, sugar, chocolate

no baked and processed foods (also gluten-free bakery) and high GI (due to hypoglycemia)

enjoy brown rice, buckwheat, quinoa and polenta instead

neurological symptoms flare up when glutened and in times of stress

following paleo diet, lots of raw fruit and veg, omega 3 oils, nuts

I feel heathy and able to function for the first time in my life. Thank God.

Organic food gives a great advantage.

Kefir rules!

On a mission to get rid of Candida overgrowth after a stressful event dropped my immune system. On a strict anti-candida diet using herbs and natural remedies. No meds or drugs to make it worse thanks.

http://www.gilbertssyndrome.com/candida.php

http://www.candidasupport.org/candida.html

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For restaurants, I say I have certain allergies. Allergy seems to be a word that perks them up. No need to go into the IgE vs. IgG vs. IgA business. I have some restaurant cards that say "celiac," but I haven't used them yet. Not so much because I would be claiming something I don't have but because they all say I CAN eat certain things that I CAN'T.

For family, I told them everything precisely, probably more than they wanted to hear :lol:

For friends, I say I had some gastrointestinal issues (that I'm sure they don't want the details of :o ) and testing confirmed that I can't tolerate certain foods.


McDougall diet (low fat vegan) since 6/00

Gluten free since 1/6/07

Soy free and completely casein and egg free since 2/15/07

Yeast free, on and off, since 3/1/07 -- I can't notice any difference one way or the other

Enterolab results -- 2/15/07

Fecal Antigliladin IgA 140 (Normal Range <10 units)

Fecal Antitissue Transglutaminase IgA 50 (Normal Range <10 units)

Quantitative Microscopic Fecal Fat Score 517 (Normal Range <300 units)

Fecal anti-casein (cow's milk) IgA antibody 127 (Normal Range <10 units)

HLA-DQB1 Molecular analysis, Allele 1 0501

HLA-DQB1 Molecular analysis, Allele 2 06xx

Serologic equivalent: HLA-DQ 1,1 (subtype 5,6)

Fecal anti-ovalbumin (chicken egg) IgA antibody 11 (Normal range <10 units)

Fecal Anti-Saccharomyces cerevisiae (dietary yeast) IgA 11 (Normal range <10 units)

Fecal Anti-Soy IgA 119 (Normal Range < 10 units)

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I don't believe I have a 'disease'. I just tell them I am gluten intolerant. I believe a group of idiot scientists genetically engineerd certain grains so that their gluten content be higher, to make bread rise better (and other sinister reasons like causing human suffering), making it harder for the human body to digest, and now I am sensitive to gluten.

I know this thinking is outside the box but I believe it is true. :ph34r:

I must post some clarifications on the statement that wheat has been genetically engineered to contain more gluten. Strictly speaking, it has not. It has been selectively bred to contain more gluten, much like beef and dairy cattle have been selectively bred to have stronger traits for beef or milk production.

from http://www.canadianmillers.ca/biotechnology.htm

Is wheat genetically modified?

All wheat varieties that are currently commercially grown in Canada and the United States and elsewhere in the world for food use have been modified through selection, mutagenesis and breeding. In other words, the genetic composition of these varieties is significantly different from that of the first wheat variety introduced to Canada from Europe in about 1851, known as Red Fife wheat.

Over the past 150 years, farmers and cereal breeders have deliberately tried to develop new wheat varieties that are superior in some way to older varieties. Some of the benefits achieved through this process without the use of genetic engineering have been wheats that have:

higher yield potential (more grain on the same land area)

greater resistance to diseases and insect pests

higher protein content

shorter required growing season

better tolerance to drought

better processing performance

Is wheat genetically engineered?

As of the beginning of the year 2000, there are no genetically engineered wheats in commercial production or imported for food use in Canada.

In order for a wheat variety to be grown commercially for food or animal feed use in Canada, the variety must be licensed by Agriculture and Agri-Food Canada. Involved in the massive testing that supports the licensing program is the Canadian Grain Commission (click here), a federal government agency that oversees varietal evaluation, grain inspection and the inspection and licensing of grain handling and processing facilities. To date, no genetically engineered wheats are licensed for production in Canada or the United States.

There are many other sources available around the controversy of genetically engineered wheat. Strong public pressure forced Monsanto to withdraw the only variety of genetically engineered wheat that has been put forward for commercialization.

from http://www.washingtonpost.com/wp-dyn/artic...-2004May10.html

Monsanto Pulls Plan To Commercialize Gene-Altered Wheat

By Justin Gillis

Washington Post Staff Writer

Tuesday, May 11, 2004; Page A01

Monsanto Co. yesterday scrapped plans to commercialize genetically engineered wheat, the biggest defeat yet for advocates of agricultural biotechnology -- and a victory for skeptics who said the company was trying to foist on the world a crop it did not want or need.

Monsanto said it would indefinitely delay plans to commercialize Roundup Ready wheat, a product that three years ago seemed headed for quick approval in the United States and Canada. The company said it would cut most of the $5 million it spends annually to develop the crop.

...

A small but organized band of farmers in Canada and the northern Great Plains, fearing introduction of the wheat would cost them vital markets among skeptical consumers in Europe and Asia, fought for five years to kill the crop, forming a tactical alliance with environmental groups that oppose genetic engineering in principle. Their efforts set off broad debate among farm groups and in state legislatures.

...

I just wanted to address the scientific facts of genetically engineered wheat.

Debbie


Gluten free since July 97

corn free since Jan 98

Never diagnosed by a Doctor

Symptoms cleared on gluten-free diet

Mom and one sister are also gluten-free

One sister with type I diabetes (diagnosed at age 10)

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I tell casual acquaintances and restaurants that I can not eat wheat, oats, rye or barley because it makes me ill. Most of the time they assume it is an allergy. That is fine with me. I will answer any addition questions they have.

Anyone I see on a frequent basis (friends, family, co-workers) will eventually here the full explanation of celiac, which is the diagnosis I was given. I actually use the words


Phyllis

Gluten Free - 30 years

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I just wanted to address the scientific facts of genetically engineered wheat.

Debbie, this is the part that bothers me. Why do we place all our trust in scientists? Who are they and are they worthy? Do they and their beneficiaries really have OUR best interest at heart? Look at the selective breeding (as you call it) of wheat. It may have started out as something experimental and innocent. Better yields, better insect-proof, better this, better that. But was it really worth it? Are first world countries really that desperate for better crop production? Or are there other agendas. Money? Weakening the human race? Can part of it be propaganda? At least consider it.

Now back to my most important question: was it really worth it? Many celiacs will tell you: NO.

Nothing personal.

Genetic modification of our food will never be beneficial for the human race.


Gluten intolerant - self diagnosed 2007 (not willing to do gluten challenge) and anemic

no dairy, soy, legumes, eggs, sugar, chocolate

no baked and processed foods (also gluten-free bakery) and high GI (due to hypoglycemia)

enjoy brown rice, buckwheat, quinoa and polenta instead

neurological symptoms flare up when glutened and in times of stress

following paleo diet, lots of raw fruit and veg, omega 3 oils, nuts

I feel heathy and able to function for the first time in my life. Thank God.

Organic food gives a great advantage.

Kefir rules!

On a mission to get rid of Candida overgrowth after a stressful event dropped my immune system. On a strict anti-candida diet using herbs and natural remedies. No meds or drugs to make it worse thanks.

http://www.gilbertssyndrome.com/candida.php

http://www.candidasupport.org/candida.html

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Celiac is by definition, histologic damage to the small intestine from an autoimmune reaction to gluten. Standard medical definition does not include gluten sensitivity as a separate issue.I think the concept of a separate non-celiac gluten-sensitive condition MUST be examined by the medical powers that be....and delineated. There are FAR too many people who fit that description, yet FAR too many doctors abandon the quest after a biopsy or serology panel is negative. What is left for a patient to do? You are ill..know what makes you ill,yet you can't get a fair shake from the medical community?? I don't disagree with patients wanting to stop chasing the diagnosis, and begin living gluten-free..we all have to decide ultimately, what we can live with or live without... So, I'd tell them you have a reaction to gluten and can't eat it. When they press you, tell them it's like food poisoning and that usually gets them quiet! After all....it is !


Iron deficiency without anemia, unexplained weight loss 2/2003

Positive celiac biopsy 4/2003

Autoimmune thyroiditis 8/2005

Gluten Free Since 2003

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