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Dealing With Other People's Reactions?


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55 replies to this topic

#31 stef_the_kicking_cuty

 
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Posted 04 August 2004 - 11:41 PM

Hi Anna,

1. it also bothers me, when things like this happen. My advice, since some people are so ignorant, you are not dependent on their friendship, since they haven't been real friends (just coworkers of your friend for example) in the first place and mostly don't understand anyhow. Consequently just tell them what you thought and be mean yourself. “OK, but only if YOU also go and order nothing more than a drink, so you will have your mouth watering as everybody else will be eating this delicious ice-cream”. Or don't be mean and just say something like "It seems you don't know enough about this disease. Why don't you inform yourself and then try to be a little more willing to compromise"

2. And what concerns your real friends. I don't think you're exaggerating. If anybody says you're exaggerating, then they didn't really have that problem yet, cause their friends understood them. I'd say, just try, what pinkyagogo said. Say "Hey, let's go here or there. Then i also can eat something." They are real friends, if they make a compromise like that.
BUT on the other hand again, in your case with your friend i wouldn't be so sure, if she doesn't want to "rub it in your face." Because, if she really don't wanna do it, she would stop with it in the first place. How many times have you told her? Can somebody be so stupid? And i mean, hellohoo. Your friends can also say, "hey, why don't you give us an idea, where we can go instead?" Cause sometimes their stupid reaction makes you really speechless. I know that from myself. And so they could say something as well that kinda "brings you back" to reply something. And if it's really such a good friend, then i can't believe, that they don't know how to react. They should know better. THEY KNOW YOU AND THINGS ABOUT YOU! And here's my honest question. Do you really need friends who do that to you? My god, if they don't want to understand, then they aren't really friends and maybe should just leave you alone. You will find new friends who pay attention. Believe me. And if she really wants your friendship, then she will come back to you and understand. That might sound hard, but i tried it and guess what. It worked. :P
And i have a very good friend, too. I know her since 1997 now. I didn't go to college with her, but over the years we lived together from time to time and she knows me better than my own husband does. I know her really good, too. And she would never ever try to hurt me like this. If she wouldn't be sure, if something is good for me, she would ask me in the first place. (It's like a marriage, you have to talk to each other to keep it working.) And if the answer is no, she would either not eat it as well or don't make stupid coments about it. Unfortunately she lives in Germany (we are both native germans) and i live in the states. Cause i married an american. I didn't see here since i know i have it, but i know, she would never do anything like that. I already know that much, that's how good i know her. That's a REAL friend. And i agree with catfish, i would have a heartfelt talk with her too, if she would bug me like that.

3. I hope that, too. I don't want to be mean or anything, but then they would see, that this problem is really serious. And most of all i would hope that, if it concerns anybody of my socalled friends who also did nr. 1 or 2 to me. If you know what i mean. Don't get me wrong. I also don't want the people to over sympathize. But the people could be more understanding and refrain from stupid coments. And like Jill there have been a lot of feelings "bubble" inside of me for a long time now. And when i read stuff like that i just get angry :angry: . And we aren't living in 1800 something anymore. Meanwhile we have the Internet and some very good books about it. So if you really want to understand a celiac friend, you can get some information.

@ debmidge:

In your case, that's different, too. It's your best friend, yes. But since it's your husband, that has celiac and not you, i'd say, that she's worried about him and tries to help. But since it's not that important to her, she just forgets important facts about it (even if she doesn't want to). I don't think, people don't think it's serious, it's just not important enough to THEM and that's why they forget. And that's why they have the lack of knowledge. But they never get more knowledge, because they're not really interested. Because they're not affected. And if she speaks about co dependance, then she doesn't understand a single thing about this disease. She probably thinks your husband is making all that up (or that it's in his head) and that he doesn't want to change his situation (for whatever reason). But what she probably really doesn't believe (because she's probably not really interested), is that this disease exists. But if she would be a little more open and for example read something about it, then she would realize, that she was completely wrong.

On the other hand she could also be worried about you, of course. But to find out, you have to either get over it and ask her once again or leave it at that and be aware of, that you're friend thinks wrong about it. And if she really would be worried, then she would get more information and learn about this disease, like we all did. Or get a list from you with things that a celiac can't eat or so. But just giving stuff and not "thinking" isn't the nicest way. That does NOT show you, she cares. Just go and talk with her one more time. If you don't want to lose this friendship, it's worth it.

Wish you all the best of luck

Stef
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Stef

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#32 debmidge

 
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Posted 09 August 2004 - 02:23 AM

Hi all


I knew I had to do this for a while...so I visited a psychologist to discuss this whole coping issue, as the care taker. My husband isn't doing very well since going gluten-free since Oct 03. He still can't gain weight and still has upset intestine incidents, even though I know he's eating gluten-free. I have made all of the precautions and buy from gluten-free websites and health food stores and his food is as plain as it could be.

But back to my visit. I spoke with pyschologist and told her I was bothered about the co dependent label. I explained how we live what's going on, etc. And her response to me was that it isn't codependence in this case, but a healthy
"interdependence" which can wax and wane in every relationship depending on what's going on at the time. It made me feel better to have my feelings confirmed.

My other dilemma is that my friend discussed celiac with someone else who has it (that she met) and told me that there are many message boards about it. :lol: I wanted to bring her to this one when she visits me next time, but I then realized that I made those posts and she'll know right away I am speaking about her. So I had to drop that idea. My biggest fear now is that she'll find this board on her own......If she does...then I hope she realizes that I was that distressed about the codependence thing.


Anyway, the pyschologist and I meet once a week and she's familar with celiac as she used to be an R.N. and one of her psychology specialities is chronic illness so I think she'll be able to help me to keep feeling that there's some hope out there.
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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

#33 judy04

 
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Posted 10 August 2004 - 04:53 PM

Hi,

I don't know if this is the right forum, I just have to vent!!!

This morning I received a phone call from my MD's nurse
that the report came back on my blood work with an elevated
blood sugar 227 and elevated triglycerides and sed rate.
My brother and his wife are here visiting, my brother is looking really
bad, has had 3 heart attacks and has trouble breathing on exertion,
I am really worried about him. Anyway I was telling my family about
the gluten sensitivity and now the other problems when my sister-in-law
came out with a most inappropriate remark that she was glad she was
healthy because my brother and I have all the sickness in the family
and laughed. I was sooo mad, I wanted to reach across the table and
smack her, but I bit my tongue and said that you just have to play
the cards your dealt and let it go at that. I'm so glad I don't have to live near her
and only see her once or twice a year. Why are people so ignorant?
If I were her I would get down on my knees and thank the Lord every
day for her good luck. I get so depressed and feeling sorry for both my
brother and me. I think he should also get tested for celiac disease because he has
many of the symptoms but he said he is 70 years old and too old and
sick to change. Thanks for listening, I'm feeling better now.
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judy


gluten-free since 11/03, neg biopsy, IGA elevated

#34 sunflower

 
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Posted 11 August 2004 - 12:29 AM

What your sister-in-law did, is very much like noticing a disabled person in a wheelchair in the street and then running and jumping around the wheelchair and laughing in that person's face saying "OH, I'm so happy! *I* can run and jump! Oh, lucky me!" (not that I ever saw anything like this happen, I was looking for some comparison and came up with this one, which is maybe a bit exagerrated, but not much, I think).
No one is guilty of being ill, or disabled, or anything like that. If they could choose, they would surely choose to be healthy. I think many people, when they see someone who is less healthy then they are, may think: "Oh, I'm lucky - I could have ended up with something like that", but it's a very selfish thought, and to say it aloud laughing is lower than low!
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#35 rattaway

 
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Posted 11 August 2004 - 05:08 AM

I have had similar experiences with my family. My youngest daughter is tiny, she has always had slightly dark circles under her eyes ( I do too though). My mom and brother were convinced that the reason my daughters weren't fat is because we didn't give them gluten. They were also convinced that the reason that my daughters are allergic to gluten is because we never give it to them. Hellloooo... how do they think we know that they are allergic? Because we gave some to them. In the beginning of our Celiac journey, they used to make sure that when they were eating donuts, pizza ect., they would sit right next to me or my kids and it was in a look at what I get to eat sort of way. Arggggg. I just found that to be a good opportunity to leave. My grandmother said something similar to what your sister in law said yesterday, she was like" I guess I inherited the good genes in the family". I am sorry, but since when do type 2 diabetics who can't control their urine, have spastic colon,and have mood swings like Linda Blair in Exorcist, make up the "good genes" in the family? I have half the doctor bills my mom, sis, and grandmother have. I just wish that people, especially family would have more compassion. By the way, the pediatrician says that my 3 ft. tall four yr. old is exactly porportionate for her weight of 28 1/2 lbs. So there. I feel better now. Thanks for letting me vent here. :P
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#36 sunflower

 
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Posted 11 August 2004 - 06:39 AM

I liked your comment about the good genes! :lol:
Once I said, jokingly, to my boyfriend (who is not Celiac), that considering the future possibility of having children, maybe he should have chosen a woman with a better set of genes than mine. To which he answered that if he thought that way, he'd have to shoot himself first, because his own genes are not perfect either :D I wish there would be more people who have a similar approach to people as he does...
Comments like the one your grandmother said just beg for an answer "Why do you see the straw in your brother's eye...?" ;)
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#37 rattaway

 
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Posted 11 August 2004 - 06:49 AM

Yup. She has a big ol plank in hers huh? I am also shocked at how some celiacs treat other celiacs at times. It seems that some are ashamed of it when others want to share it so that other people get more educated about this disease.

" Better a dry (gluten-free) crust with peace and quiet than a house full of feasting, with strife" Proverbs 17:1

Rian
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#38 sunflower

 
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Posted 11 August 2004 - 08:07 AM

I am also shocked at how some celiacs treat other celiacs at times.  It seems that some are ashamed of it when others want to share it so that other people get more educated about this disease.

??? :blink:
Can you give some example? This is beyond my imagination, as the only other Celiac I have a chance to meet is my sister - no other people with celiac disease among my relatives or friends.
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#39 rattaway

 
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Posted 11 August 2004 - 08:30 AM

Sure, just ckeck under keyword cupcakes and you will see that a new celiac was telling me that I shouldn't take gluten-free cupcakes to my daughters class because some gluten eating kids might not like them and make her feel embarrassed. I told her that I feel the more that celiacs keep celiac a closet disease the more doctors will continue do misdiagnose it and that with using the classroom as a chance to educate people on celiac that we can bring to light celiac disease. I believe it is under gluten-free birthday cake topic. Rian
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#40 lovegrov

 
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Posted 11 August 2004 - 08:55 AM

debmidge,

Has your doctor ever mentioned possible bacterial overgrowth in your husband? If not, this is something worth considering. Symptoms are like celiac. According to one expert (Dr. Cynthia Rudert), a large percentage of people diagnosed with refractory sprue actually have overgrowth.

If this hasn't been explored, all you need to do is have him start taking a probiotic (Culturelle is one that's recommended -- Rudert puts ALL of her new patients on probiotics without even looking for overgrowth). If he gets better, you've found the problem. If he doesn't, you've done no harm.

richard
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#41 debmidge

 
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Posted 12 August 2004 - 04:37 AM

Hi

We will look into bacterial overgrowth... he tried the pro biotics (acidopholis) for a while, and they gave him the most unbearable (smell) gas.

We are pursuing other areas like food sensitivities.

celiac3270: I liked your response and kept forgetting to thank you for it. You have a profound sense of what is right.
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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

#42 Niteyx13

 
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Posted 12 August 2004 - 02:18 PM

Rian,
That is such an unfair thing for someone to say to you; and for your daughter, about taking cupcakes to school. Just because she has celiac doesn't mean she shouldn't not be able to do the things other kids do. If the kids don't like them then they don't have to eat them. Some kids probably won't even notice a difference. I agree with you about people needing to be made aware too.

Deanna
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#43 SofiEmiMom

 
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Posted 12 August 2004 - 03:37 PM

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 :rolleyes:
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#44 rattaway

 
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Posted 12 August 2004 - 04:23 PM

Oh Bless your heart. :( . I am so sorry that you had that kind of reaction. I wish we could print up Celiac tracts to pass out or something to make people aware of what we go through and how hard things like weddings can be. If people, yes that includes family members would learn to treat celiac like the disease that it is instead of a "diet", then we, as well as our celiac children would be spared so much hurt. Hey, Celiac.com people, are you listening to the part about tracts? I think there should be some placed in every doctors office, dentist office, beauty salon, school, ect. Maybe someday.... But for now, vent away! we all need to at times. :blink: Thanks for the support about the cupcakes Deanna.

Rian
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#45 Guest_~wAvE WeT sAnD~_*

 
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Posted 12 August 2004 - 07:39 PM

Deanna,

I'm Italian....so that was the first thing I thought of when my GI's head nurse confirmed my diagnosis: what now? I hope your In-Laws have the opportunity to learn more about celiac disease, if not through you, but through a mutual friend, perhaps (read my "Endoscopy Results" post if you'd like to hear my "commonality" schpiel [sp?] unabridged).

Good luck with the In-Laws---my father's really give him hell like it's nobody's business...but that's another story.


Take care,
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