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tarnalberry

Difficult Times From Others?

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A lot of people seem to note that they get a lot of grief from other people - not just family, but friends, acquaintances, and people they meet for the first time - about being gluten free. I never really understood this, as I haven't experienced this much at all; certainly not the suggestion that I was wrong, and never anything more than questioning about quantities. My experience might have been tinged by knowing a lot of the people I interacted with first, but an experience this weekend left me wondering if there wasn't something else.

I went on a ski trip this weekend, and there were over 50 people there. I knew 1. Everyone soon found out that I wasn't eating with them, as they were generally eating all the same food, and I would explain it. No one gave me grief, no one questioned it, no one disbelieved, no one challenged it, and no one tried to trick me into anything. (The group was mostly engineers, and plenty of them had heard of gluten intolerance before, with some idea of what it was, so that may make a small difference, but not everyone had.)

It left me wondering if part of the difference is in delivery. I could be totally off track, of course, but if you've been getting flack, left and right, whenever you talk about it, think about your delivery of the information, and whether or not changing it might help. Not that what you're doing is wrong, but just that it might not fit your 'audience'. :ph34r:


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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i am like you, I have never gotten ridiculed for my disease. Everyone has always been very supportive of what i have to go threw. If people have no idea what I am talking about they will listen to what i have to say and really care about what I am saying. I dont think i have met more then 5 people that had no idea what i was talking about tho lol.

I also find out all the time there is more and more people here that are going threw the same thing. Just yesterday my son came home and told me that one of his good friends mom has celiac. I was so shocked at this information.

paula


gluten, casein and soy free

on low carb/low sugar diet

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I also have never been given grief about my diet. I explain that I am on a medically restricted diet and that if I eat wheat, oats, rye or barley I will get very sick.

I have also read many of these posts. Is it possible that some of these people see this as interfering with their life or are unable to accept someone different and therefore make life difficult for a person with Celiac?

I know I try not to be a burden on anyone. I make all my own arrangements so I can eat and never expect anyone else to worry about it. The only exception are the people who live in my household. We have rules and my son and husband generally comply to keep me healthy.


Phyllis

Gluten Free - 30 years

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I have NEVER gotten flack, and never been misunderstood.......I absolutely believe it's all in the delivery.

I eat out at restaurants regularly, and, if I"m with people outside of the inner circle (boyfriend, close friends, etc) I always take the kitchen manager or chef aside and tell them privately - no one at the table really knows unless they ask, and I give the BRIEFEST of statements.....often they'll ask if it's an allergy and I"ll just say - yes, something like that. If they probe further, we can discuss.....

And Confused is right - more and more people DO know about it now, so it's getting easier.

It's really been no big deal for me, except for those bewildering first few months, of course....

Glad you had a good time, Tiff.

:)


SUSIE

Diagnosed January 2006

"I like nonsense. It wakes up the brain cells." ~Dr. Seuss

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I have NEVER gotten flack, and never been misunderstood.......I absolutely believe it's all in the delivery.

I am one who has received flack and I believe it to be 100% the people I am dealing with. I tell everyone the same way. The majority of the people are respectful. Then there are the handful who are not. I'll speak of a relative but the other disrespectful people I have encountered have similar personality traits.

My "M" is one who is a great control freak. She will do anything to force her will on anyone (not just me). With me it is X ingredients in something, with another it is something else. She doesn't just do this with X ingredient, she does it by contacting wedding service persons and ordering completely different reception goods, she does it by trying to redecorate my house and many, many other ways. She is rather narcissistic in her personality and just will not accept any other way. We now have to greatly limit our time with "M". I refuse to eat at her house and will not even eat packaged foods that I have not kept my eye on. She is out to PROVE that she is right.


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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I have never been given a hard time about Celiac by any member of my family, any friend or even any stranger. In fact, I've never had anyone do anything but bend over backwards to try to make or find safe food for me. Maybe it is because so many people I know saw how sick I was before I was diagnosed. When they saw my hair falling out and had to pick me up off the floor when I fainted from malnutrition, they knew there was soemthing really wrong with me.

I go to social events and have a good time. I either bring my own food or make arrangements ahead of time so there will be something safe for me. Our family's celiac moto is "let's make it work." This applies to any situation we find ourselves in. Maybe it means brown bagging it every day or packing lots of snacks. But the rest of the world can have all that gluten and enjoy it. We're going to enjoy ourselves without it.

I agree with what others have said that it is all in the attitude we take on it. A positive attitude when talking about it is so important. I usually end conversations with people who ask about it by saying that my celiac diagnosis is one of the best things that has ever happened to me. I truly believe that. I can live a healthy life with no drugs, only diet changes.


-Colleen

Dx 8/05 via bloodwork and biopsy (total villous atrophy)

13-year old son Dx 11/05 via bloodwork and biopsy

Daughters (16 and 5) have tested negative via bloodwork

A woman is like a tea bag - you never know how strong she is until she gets in hot water. - Eleanor Roosevelt

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I'm another person who has never gotten hassled or questioned about my diet. Incidentally, I'm an engineer and hang out with a lot of engineers. Maybe us engineers are better about accepting the diet! I always present the diet in a positive way, emphasizing the positive changes it has made in my life and how the diet may seem inconvenient, but it is 100% worth it to have my health back. Many people have a more negative attitude towards the diet and present it as a hardship in having to give up all their yummy food, and I wonder if that attitude rubs off on the people you are talking to. One of my biggest pet peeves is when people start talking about how the bread isn't any good. With a little effort you can make good homemade bread and besides, who needs bread anyways? :) (I'm not saying you shouldn't have a period of mourning or struggle with the diet at first. I realize there's a huge learning curve to get over before most people can attempt a positive description of the diet.)


Gluten-Free since September 15, 2005.

Peanut-Free since July 2006.

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For the most part I have gotten 100% support. My mom was on board day one... we went to NYC with my family and she was like were eating at gluten free restaurants for every meal.. haha... friends that saw me pre-gluten free being so sick are supportive. But I'm having issues with my college roommate, she doesn't understand why I'm so strict, or if I question something why I won't eat it. I'm not one to talk about this disease, or make people go out of their way to accommodate me... and 99% of the time I am positive cause I have gotten so much better on this diet. The only times recently I've been frustrated is with her. She's my best friend, I'm not asking her to go gluten free (I've never made her try my food).... and I know its not her disease and thats why she doesn't get it, but would still like some support.

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I have only had problems from one person about the disease from one person (who i might add thinks that you bring bad things on yourselfs. After explaining everything to her she apologised.

I dont think age has anything to do with it but maybe maturity.. all my freinds are 14 15 or 16 and only the one i mentioned has ever questioned me.

Ive met doctors that dont know much about it and ones that have dismissed other problems but they generally have been ok.

I think its a lot to do with the person being told and how much awareness they have of coeliac. With new people i tend to let them get to know me before i tell them, I also tend to bring it up subtly by saying i hav a hospital appointment .. if they ask why then i tell them if not then i leave it until thy show interest.. this way ive found they take more notice of what i tell them. So far people at resturants have been really understanding, although some of the customers give me really funny looks.


"great works are performed not by strength but by perseverence"

 

Diagnosed coeliac - aged 14

                  Asthma

                 Osteopinia

                 High blood calcium

                 Crohn's disease -december 2012 

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My entire family practically dismisses my problem every time. They don't take any precautions to help me out. My boyfriend is the only person who will sit down and listen to me when I have a problem concerning celiac disease. I don't mind if someone doesn't understand, but if it is affecting my health like it has been recently, it's a real problem.

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I have noticed 4 basic types of people:

1) Intelligent enough to understand it and accept new information.

2) Not too intelligent, but empathetic and loving enough to try to understand it

3) Deliberately obtuse - argumentative, controlling - always wants to be "right" in any argument, will challenge the slightest thing; sometimes out of maliciousness or narcissism, sometimes for the only purpose of belitting you. But yet, will never look anything up or read about anything and continues to be self-righteous throughout life. They also can be passive/aggressive about it (example: very close relative invited us to dinner, made mashed potatoes from scratch, however during the prep time she picked (ate) on regular Italian bread and was getting bread crumbs in the potatoes and in the pot, etc. and dismissed this as "Well, it'll boil away and rinse off when the potatoes are done.").

4) Those who appear to understand and give every indication that they do, then you discover in conversation that they still don't "get it." Usually when they keep offering you foods with gluten in it, or other indications like this. With these people you can never tell if they are either #2 or #3 above as it goes in spurts. Or maybe they just don't give a darn....and they are playing "politician" with you...

I have to admit....in the past when it came to gluten free I used to be a #3 - I thought gluten free was a wacky made up rule - promoted by health food stores to sell "special" food and make a profit. I wasn't deliberately mean to anyone, but I wasn't convinced that celiac existed. I now know better and am somewhat embarrassed to admit I was that pig-headed.


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 think Debmidge nailed this one. The #3 type people will counter any argument that you could possibly come up with. The best way that I have found to deal with these people is to explain once, and then resort to "because I don't want to" as a response. Most people don't know how to counter that. Sadly, my in-laws are type #4. They keep inviting us over for pizza or sending us homemade cookies. The worst was Thanksgiving. Mom-in-law sent me to the store to find a turkey that I could eat, but when we arrived for dinner I discovered that it was full of stuffing. The only gluten-free side dish was the frozen peas. I ended up making a baked potato in the microwave. You either gotta laugh or you'll end up crying. :P

Best to all,

-D

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Everyone seems to be sympathetic to me and my daughter. However, I hear very offensive jokes that actually mimic my lifestyle. Im a vegetarian (health reasons only) celiac who eats no oils nuts or seeds due to intolerances. They either think Im a health nut, anorexic, or "peta kook" (someone elses offensive words talking about a vegetarian friend at our party knowing Im sitting right there <_< )

If they make jokes like that I wonder what they say behind my back..... Funny thing is they almost all are engineers :D My husband has six close friends who are engineers and they are all hunters and unfortunately express their feelings bluntly. I never make it out to be a bad thing and bring my own food as I dont want to get cross contaminated. I never complain about it. They are not told of my health problems either as I dont want pity from them or for my husband having to deal with it. I have never acted like what they say is offensive to me as the last thing I want to do is be on bad terms with them. I dont think they do it to be mean, they are just so opinionated of people who are slightly different than they are.

My family and inlaws are great thank goodness, Im very fortunate for that.

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