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Dealing With Other People's Reactions?


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55 replies to this topic

#46 debmidge

 
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Posted 13 August 2004 - 02:23 AM

The Celiac Sprue Assn (www.csaceliacs.org) sells a tract for .50 each. A little pricey for handing out....I do purchase them to leave them in waiting rooms and other places but I hand them out selectively. I wrote my own one page overview of it and I keep copies in my car. I was approached by some Girl Scouts selling cookies and declined to buy a box (I really felt bad about it) but then I gave the mother of one of the girls my hand out to explain why I didn't want to purchase. The mother wasn't aware of what celiac was.
I'd like to be able to buy a one page professionally done hand out like Rattaway suggests. I feel the CSA's price per copy (and there is no price break when you buy a large amount) is too high and if you read it, it's written on a technical level which may be a little boring for the average non celiac. Even the cover is boring - it looks like a medical booklet. To add insult to injury, it's also copyrighted and can't be photocopied to distribute (that's why I wrote my own) -- so there's no incentive to share their information in an inexpensive manner.
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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 2006
It 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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#47 debmidge

 
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Posted 13 August 2004 - 02:32 AM

Sofi

Your in laws are a problem.....I know how Italian families are (I am one) and they like you to have Sunday macaroni with them. Perhaps your husband can tell them positive things about how in Italy a lot of people have celiac and that their medical system screens people better than in USA. I also had the experience of speaking to a fellow who runs a fish restaurant here in NJ and we discussed gluten free food and he looked at me and said "So that's what was on the menu!" I looked puzzled and he explained that when he visited his father's homeland he was in a restaurant which had - in Italian - a gluten free menu. He didn't know what they were talking about. So I had provided him with the piece of the puzzle by telling him about celiac and gluten-free food. So maybe if your in laws think that their homeland is somehow ahead of the USA with regard to celiac/gluten-free they'll be more compassionate.

As an aside, my husband has celiac and he's newly diagnosed. His own sister keeps telling me that his symptoms are in his head. So sometimes you just can't get even close relatives to be compassionate. You are either compassionate or not - you can't train people to be that way.
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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 2006
It 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

#48 rattaway

 
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Posted 13 August 2004 - 04:48 AM

Hi Sofi. Next time your sis in law has a killer headache, just smile and say"It's all in your head" :D

Rian
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#49 SofiEmiMom

 
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Posted 13 August 2004 - 05:35 AM

Thank you everyone for your kind support. My in-law situation is not ideal, that's for sure. I've tried to educate them and brought up information about the prevelance of Celiac in Italy. When my Mother-in-law finally stopped making negative comments was when I told her that her son (my husband) tested positive for gluten intolerance (through Enterolab). She hasn't said much since and has been trying to come up with some gluten free cookie recipes - which is nice. The unfortunate thing is that my husband is in complete denial. He eats gluten free when he's home since I can't bring myself to give him otherwise knowing what I know. He travels a lot for his job though and eats out a lot and does not maintain a gluten free diet. He has some major symptoms too - diarrhea, bloated belly, a severe skin rash on his head that has been deemed 'life long/chronic" by a dermatologist, and grumpy, grumpy, grumpy - a lot. But of course he is in complete denial and refuses to believe it. Which makes me worried and sad if I dwell on it. All I can do is pray, I realize. Anyway, that's another topic.

I have one of my all time "dealing with other's reactions" experience to share:

Last month my husband and I were out to eat with a group of people. I had called ahead of time and spoke with the chef. Everything went wonderfully until dessert time. Someone ordered the dessert sampler where the entire table samples 4-5 desserts. I've come a long way where it really doesn't bother me to watch other people endulge. What bothered me was this: the waitress, who was aware of my 'special requests' but as usual didn't understand, says to me as she is holding the 'death my chocolate super fudge brownie cake supreme', "I'll just set this over here out of your reach as you must be DYING inside because you can't have any." It was loud in the restaurant and no else heard, but my husband said "What's the matter" because the look of astonishment on my face was apparent. I was so taken aback that I couldn't even respond. Can you believe it? After I recovered I just shook my head and laughed at her ignorance. I'm just always left to wonder, "Would she have said that to a diabetic?" Ignorance can result in such cruelty to those of us on the receiving end. I realize that we just have to continue to band together, gather additional strength, and educate the people - albeit a challenge :)
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#50 rattaway

 
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Posted 13 August 2004 - 05:40 AM

Yet another reason why we need tracts that are informative and cheap to hand out to ignorant, illmannered, people who have no idea that this really is a disease. I really need a punching bag at times to get out my frustrations. :angry: Or I will take a jerk of a waitress if that is my choice. :lol: Like smokers, your husband has to be the one to make the call on how he feels and what he is willing to do to get better. I know you know that though.

Hang in there. :D Rian
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#51 debmidge

 
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Posted 18 August 2004 - 02:05 AM

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
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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 2006
It 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

#52 Pegster

 
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Posted 19 August 2004 - 12:57 PM

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
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PEGGY
Positive DH biopsy 4/19/04

#53 rattaway

 
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Posted 19 August 2004 - 01:03 PM

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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#54 traci

 
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Posted 20 August 2004 - 01:13 PM

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!!
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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!!

#55 debmidge

 
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Posted 21 August 2004 - 03:58 AM

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.
  • 0
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 2006
It 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

#56 celiac3270

 
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Posted 03 September 2004 - 07:41 AM

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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