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sunflower

Dealing With Other People's Reactions?

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SoFi, Was the waitress under the impression that you were doing Atkins and your abstenance was due to only weight loss? Her comment is bizzare if she knew your real concern.

Deb


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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Often waiters just assume I'm on Atkins or on some other weight loss diet. Yesterday I specified "no dressing" on my salad and the waitress said "We have some dressings that are low fat". It's easier to just say "no thanks" than to try to explain. Because I'm not sickly looking or even underweight, people don't perceive of me as having a disease. They just assume I'm on a diet to lose my extra 20 pounds! :D


PEGGY

Positive DH biopsy 4/19/04

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I am constantly asked if we are on Atkin's too. I can't believe people can look at my daughters and think I'd have them on a diet. They are six and four and are both slender built. I just think sometimes that I will say yeah they just lost fifty pounds apeice and see what their reaction will be. Duh? Some people..... :D

Rian

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My heart goes out to all of you so much so. Not because I too refuse to eat any gluten but because of my daughter, who was born with Phenylketonuria (PKU) 17 years ago. PKU is another thing altho there are similarities. She cannot have an excess of phenylalanine, which is present in all protein (including gluten) but as it is an essential amino acid (which means you have to have it) she cannot just go free. Her diet is far and away far more restricted than this one. If she were to have too much, her brain would be damaged, taking a normal child all the way to profound mental retardation.

I dont feel angry or sad about this celiac diet but I have had years of dealing with hers. I was angry, scared and resentful for most of her life. Her peers were often very horrible about this and it angered me tremendously.

She has eaten many gluten free things in her life. They have come very very far since the first loaf of bread I pulled out a can that even my dogs would not eat!! :huh:

I often wondered why her? Her complaints and hurts are similar to those I see on this board and I feel for you, deeply.

There are some people in this world that do not realize the emotional depth that you do. They dont understand the pain of not being able to eat and celebrate life as they do and then there are just plain jerks who needed their butts kicked as children. Try very hard to realize that people like that, if they cannot be taught, have no place in your life. You are special and do not deserve pain because of this!!


Traci-Self Diagnosed after removing all gluten from my diet... Please note I do not advocate self diagnosis but a woman's gotta do what she's gotta do!!

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You're right Traci, people who don't understand celiac can sometimes

be fresh when they speak to you.

Has any celiac gotten this one yet? This is a non-celiac speaking: "I know someone who has celiac and they....." Almost as if it's a contest.

Yes, they happen to know someone who has celiac , who doesn't have any other food sensitivities, and has no other restrictions and has no symptoms of it.

On the other hand, you keep having to drop foods from your diet that ARE gluten-free (due to sensitivities) and you can't keep your weight on and you feel like heck even though you are eating gluten free. This non celiac is doing a mental comparison between you and the person that they know, and since their friend is doing so well they conclude it must be then all in your head.

This just proves that more public education is needed on celiac disease.


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 have a "dealing with other people" vent...this has been bothering me ever since it happened and I guess I just needed to share to get it off my chest once and for all...i love this board!

It was just three weeks after I had found out myself and my two children are gluten intolerant - an overwhelming time for me, as most here can relate. My world was spinning around me trying to get organized. My husband and I were at his cousin's wedding (big Italian wedding) and as I kept declining the multiple pasta dishes being passed around the table, the man to the right of me (a friend of my husband's family) says, "What, you don't eat pasta? Well, that's going to cause problems in your marriage. You're married to an Italian." Then 10 seconds later my Mother in law, who unfortunately is not a nice person whatsoever, yells across the round table of 10, "Is this genetic?" I nodded yes. "Oh that's just great!" she responded while rolling her eyes. Then after everyone else had recieved their entree (a breaded cordon blue) and the waiter was trying to understand that I had requested a plain chicken breast and vegetables my brother-in-law says, "Oh there goes Kim again, being difficult." That was all I could take. I slowly got up and went to the bathroom. I stood in the stall and started sobbing. Then to top it off I had eaten something from the appetizer table (not something I would attempt now that I'm more educated) that was contaminated and starting having profuse diarrhea. I was crying and sitting on the comode in my nice evening gown. I laugh about it now. But it just hurts thinking about how inconsiderate my husband's family is. His family says that "I'm too sensitive." My father in law had colon cancer, can you imagine if I had said after his surgery in a room full of people, "Is that genetic" which of course it is, "Oh that's just great." I would be called the witch of the universe. I've been blown away by the reactions of certain people - like I'm on the South Beach Diet or something and it's a choice. Sigh. Thanks for the vent - I needed it

Wow........that's one of the most cruel gluten stories I've heard......that is absolutely.........intolerable.......I seriously think I would've completely blown up if someone made such comments to me (genetic, Kim being difficult, etc.)......I don't really have words to describe how.......mad that gets me.......and I'm not even the one who had this done to them. People thinking you're just on a diet might be annoying cause they don't take this as seriously as they should, but that's just a matter of ignorance.........being so flat out rude is absolutely ridiculous. I feel really sorry for you having to deal with this. And then that waiter incident........that was an unnecessary comment, cause even if you were only on a diet, that could've been done inconspicuously instead of saying "you must be DYING to have this"......all I can do is extent my sympathy...........I'm sorry you've been the brunt of this; you obviously don't deserve that.

I often wondered why her? Her complaints and hurts are similar to those I see on this board and I feel for you, deeply.

There are some people in this world that do not realize the emotional depth that you do. They dont understand the pain of not being able to eat and celebrate life as they do and then there are just plain jerks who needed their butts kicked as children. Try very hard to realize that people like that, if they cannot be taught, have no place in your life. You are special and do not deserve pain because of this!!

Very well put.........nobody seems to get it--I don't think any non-celiacs...get it.......and I'm not even talking about the diet; just the fact that I'm getting sick every 2-5 days.........vomiting, cramping.......nobody I know deals with that. The only person that sort of gets it despite not having it is my mom.......cause she sees that I'm constantly in pain......although even she can't understand the physical and mental strain it puts you under after awhile.

Has any celiac gotten this one yet? This is a non-celiac speaking: "I know someone who has celiac and they....." Almost as if it's a contest.

Yes, they happen to know someone who has celiac , who doesn't have any other food sensitivities, and has no other restrictions and has no symptoms of it.

Oh yeah.......seems like a lot of people know a celiac.......that sounds very familiar...........for example, my computer teacher at school (programming) said that his wife's brother and mother both have celiac disease.......but then when I was eating a gluten-free cookie (Pamela's chocolate something) he asked if it was an Oreo...........so he doesn't get it at all........you're also correct that the celiacs are often ones with no symptoms, no additional restrictions.......the lucky celiacs in a way.....

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