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skoki_mom

I Know I Am Being Waaaaay Oversensitive Here

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OK, most of you are probably going to think I'm insane, but it is driving me nuts that my mother calls me "a celiac". I wish she would say I *have* celiac! I feel like she is calling me a disease, and the last time I checked, I was still a person. Honestly, I don't know why this is bugging me so much. When my sis was diagnosed last winter my mom kept calling her a celiac and I finally said "would you please stop calling her that!". I notice that it's used a lot on websites and by many of you as well, so I must be the only crazy person here that thinks this way. Maybe it's something to do with my nurses training that drilled into our heads to *never* define someone by their illness (ie you would never refer to a patient as "the cancer in bed 2"). The other day my sister introduced me to her friend as "this is Lori, she's a Celiac"...hello??? This may be a fact of my life but I can think of a million other ways to define myself, how about "this is Lori, she's my sister"????? I'm oversensitive, I know it, I don't get mad or defensive about it, but I do politely say "no, I'm not Celiac, I have Celiac". I'm a lunatic.....

So now that you all think I'm completely off my rocker, I'll just say I feel much better to get that off my chest!


LORI

Dx celiac disease Aug 25/05, ate KFC that night and gluten-free ever since

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Well, if you are oversensitive.. then so am I!!

I understand.. I mean, that isn't the ONLY thing about me thats interesting or whatever!! Thankfully my mom doesn't call me "a celiac", but I could see how I would HATE that.. I mean.. a mom, of all people. I don't have it as bad as you, though, but people usually say that I have Celiac the first time that they say my name. It gets on my nerves.

Lisa


lisa mccorkell

diagnosed on May 31, 2005

orange county, california

"Laziness will cause you pain." (Unknown)

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Well, hmmm... yes its being sensitive but so what, we all get fed up at times and I totally understand where you are coming from. I'm not sure if you meant for your letter to be humorous (I really do understand you are annoyed with that situation), but it did make me laugh (the "this is Lori, she's celiac" part) so thanks for the laugh.

My daughter has a life threatening peanut/tree nut allergy and I have to be gluten-free and my mom calls us "pain's in the a** and hard to feed", she acts like this is a lifestyle choice and not a medical one. And even if it was a lifestyle choice, its my life and I get to make the choices!

My mom is 80 and also just found out she needs to be gluten-free but her symptoms are very mild so when we get together as a family and go out to dinner she will eat anything and not suffer the next day and wonders why I won't do the same. She has all the info about celiac disease but because she is self diagnosed she just does it sometimes (when she gets the runs).

Anyhow I talked to her and she said she will stop saying that sort of stuff, I laid the guilt trip on her about she is offending her grand daughter.

Sometimes its hard to get thru to people.

Good luck!

Susan

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:D Hi,

I totally agree with you. Your Mother should not be calling you "a celiac". You are a lovely person who just happens to have a disease called Celiac Disease but you are way more than just your condition. Some people may not be bothered by it and if so that's okay for them. You are bothered by it and so nobody should refer to you that way especially since they know it bothers you. Please talk to your Mom in a gentle way and explain again that it makes you feel bad and you hope she can stop doing that. Good luck!

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You'd hate my sister-in-law then... she calls my son (he has celiac disease) "gluten head". Her and her mom think its "awwwww how cute".

Some times Im REALY glad htey live 867 miles away.....


- Vincent -

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I agree with you; I'd hate to be defined by a disease. My mom, bless her heart, keeps forgetting that I have celiac and tries to feed me stuff I can't eat. But she's 84 and not in the best of health.


gluten-free since Oct 1996

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OK, here's MY sob story - my mom still refers to my being bipolar, or tells me about her friends who have kids who just found out they are bipolar, or the star in this film - did you know he's bipolar? or she just read a book about someone who is... bipolar.

I was diagnosed bipolar about 12 years ago, was treated for it for two years before learning I am NOT bipolar. And my mom knows this. I think. WTF???

Not-Bipolar-Stephanie


Diagnosed by food challenge, 10/04

Gluten-free since 10/04

Gluten-sensitive genes: HLA-DQ 1,3 (Subtype 6,9)

Interstitial Cystitis, 7/07

Fibromyalgia, 6/11

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OK, here's MY sob story - my mom still refers to my being bipolar, or tells me about her friends who have kids who just found out they are bipolar, or the star in this film - did you know he's bipolar? or she just read a book about someone who is... bipolar.

I was diagnosed bipolar about 12 years ago, was treated for it for two years before learning I am NOT bipolar. And my mom knows this. I think. WTF???

Not-Bipolar-Stephanie

<{POST_SNAPBACK}>

OMG Stephanie! That is horrible! Can't help but lol, but I really feel your pain! What is up with mothers?? I'm sure I will never be like that with my kids :rolleyes:


LORI

Dx celiac disease Aug 25/05, ate KFC that night and gluten-free ever since

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I haven't been called a Celiac...yet. I don't know if it would really bother me much though....I guess if it was constant it might get old.

So far my friends are referring to me as "gluten girl"...HELLO....I'm not gluten girl...I'm gluten FREE girl...at least get it right. :rolleyes:


Rachel

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I can't believe that Mom/Grandmom would say such things. But then again, My mother-in-law still thinks she'll outgrow it????

At what point do you have to "tell" people that she has Celiac. My 2-yo DD is still pretty much "under my wing", along with the immediate family. But beyond that she's not exposed to real world scenarios. As her mom, I do not want her to feel that she's special because of this disease, I want her to feel special because she IS.

I'm finding it hard to determine when to tell people that "she can't have that".

Any inputs?

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I guess the word celiac gets used a bit like lactose intolerant. I mean it's perfectly natural for me to say I'm lactose intolerant, and similarly I could imagine saying I'm celiac. But to use it as an introduction of another person, umm.. "Meet my friend Pauliina, she's a nail biter."... :P

Pauliina

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I guess I'm being overly sensitive also. My mom keeps telling me to eat whatever I want to, stop taking my Crohn's medicine, etc. She thinks I can think it all away with positive thinking. :P I think she's watching too much Oprah. :rolleyes:


Every day is a blessing.

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Lori - I need a medal for the bipolar thing, too. Mothers... (not you, of course! :P )

It used to get to me but now I don't care anymore, well not very much, just enough to complain about it here. Whatever. Both of my parents are so happy I am so much better (though who would know after the summer I've had! but that's another story...) through diet and not dependant on pills, especially since all the meds for my erroneous bipolar dx caused me to gain 70 lbs!

Anyway, I have changed so many times that my parents for the most part don't call me anything special anymore, just say I have a complicated diet (which I do) and leave it at that.

I have a coworker who says I'm on a gluttony-free diet... that always makes me laugh.

But that's pretty much it for special names...

Stephanie


Diagnosed by food challenge, 10/04

Gluten-free since 10/04

Gluten-sensitive genes: HLA-DQ 1,3 (Subtype 6,9)

Interstitial Cystitis, 7/07

Fibromyalgia, 6/11

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I am a diabetic, and I am a celiac. So, there! But, really, I don't have a problem with this "label" when it is used positively. If someone I know tells someone else, "Peter is a celiac, so he can't eat anything with wheat in it," I consider this a good thing. I describe myself as a celiac when the occasion is appropriate. Last summer, I was at a conference in New York and mentioned to a colleague the reason why I could not eat the finger food being offered. Next thing I know, another colleague whom I have know for years comes up to me and says, "Peter, you're a celiac. I'm a celiac, too." Bill and I were diagnosed at about the same time, but until a mutual friend made the connection, were unaware that we shared this.

So, I don't have a problem with being labelled as "a celiac" provided that the context is positive.


Peter

Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000. I was retested five years later and the biopsy was normal. You can beat this disease!

Type 1 (autoimmune) diabetes diagnosed in March 1986

Markham, Ontario (borders on Toronto)

Celiac.com - Celiac Disease Board Moderator since 2007

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If it bothers you, it bothers you. That's all the really matters.

It doesn't bother me, as I don't think it's defining who I am by that, but rather part of who I am. I'm also "an artist", "an engineer", "an asthamtic", "a girl", "a wee bit silly". :-)

Good for you for speaking up about it since you're not comfortable with being called "a celiac". That's all that matters, and I hope your friends and family don't call you that any more! :-)


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've been called far worse things than a celiac a whole lot more than a few times. :lol: Anymore I just don't want to be called late for dinner, gluten free of course.


If all the world is indeed a stage and we are merely players then will someone give me the script because I have no f!@#$%^ clue as to what is going on!

What does not kill you makes you stronger.

Nobody cares about losers and quitters never win. If you fail with the cowards then what's the message you send?

Can't get it right, no matter what I do. Might as well be me and keep fu@$ing up for you. - Brian Thomas (Halloween, the greatest metal band ever!)

Ian Moore. Self diagnosed at 36 because the doctors were clueless.

Started low-carb diet early 2004, felt better but not totally gluten-free. Went 100% gluten-free early 2005 and life has never been better.

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Well now wait a minute, I can see how it would be bothersome to have your grandma feeling sorry for you all the time, but if she's going to whip you up a batch of gluten-free brownies then go ahead and let her!


Mom of 3

Diagnosed celiac August 2004

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No freakin' kidding on the gluten-free brownies! I was just at my MIL's house (my husband is 17 years older than me, so she seems like my grandma) and she will NEVER get this gluten free business. I brought my own meal, because I knew even if she tried it would still contain gluten. She was sad at the dinner, saying "I thought the beef dish would have been ok..." - thing is she didn't tell me ahead of time or check with me so of course I was going to bring my own. Then she offered me angel food cake. Not gluten-free angel food cake (or brownies...)

Oh well, it would have been fine if my dad, who was there, wasn't being a dork and constantly saying "but what is Stephanie eating? I didn't get any of that..." if I was closer I'd have kicked him under the table, repeatedly! At least I knew he was just joking...

Stephanie


Diagnosed by food challenge, 10/04

Gluten-free since 10/04

Gluten-sensitive genes: HLA-DQ 1,3 (Subtype 6,9)

Interstitial Cystitis, 7/07

Fibromyalgia, 6/11

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It doesn't bother me too much to be called a celiac, what does bother me alot is the 'disease' part. In our family we call it the celiac difference, after all we were only diseased until we went gluten-free.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Ah, how I hate when people refer to others by health names or other names. My MIL calls me her Cherub because I'm overweight; she THINKS it's complimentary, and that's she's sooooo clever for thinking of this, she calls me this in front of her friends and family; and don't you think I hear the snickering of those listening?

I've told her many times not to call me that. She's 84 also, so next time she calls me that, I'm gonna call her the OLD LADY, see how she likes having an unflattering thing made into a nickname. By the way, she's called me cherub when I was normal weight and overweight and it irked me always. It reminds me of the evil kids in middle school when I got taunted about my weight. Some people just never grow up. My husband tells me to ignore her - that she's old and feeble -- right....


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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Ah, how I hate when people refer to others by health names or other names.  My MIL calls me her Cherub because I'm overweight; she THINKS it's complimentary,  and that's she's sooooo clever for thinking of this,  she calls me this in front of her friends and family;  and don't you think I hear the snickering of those listening? 

I've told her many times not to call me that.  She's 84 also,  so next time she calls me that, I'm gonna call her the OLD LADY, see how she likes having an unflattering thing made into a nickname.  By the way, she's called me cherub when I was normal weight and overweight and it irked me always.    It reminds me of the evil kids in middle school when I got taunted about my weight.  Some people just never grow up.  My husband tells me to ignore her - that she's old and feeble --  right....

<{POST_SNAPBACK}>

Blah! That is horrible! Cherub itself is kind of cute, but in reference to your wt, how insulting!! Yeah, call her old lady or something and see how she likes it!


LORI

Dx celiac disease Aug 25/05, ate KFC that night and gluten-free ever since

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Using "Names" such as celiac, or PIA or Cherub is "passive aggressive" behavior.


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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Can you handle one more story?? My 14-year old son and I both have celiac disease. Mine is much milder than his, but we both follow a very strict gluten-free diet. My mother (his grandmother) ccould never understand why we don't just "cheat" every now and then. Like when we go out or are at a party, etc. "OH for goodness sake, just have some pizza this one time". You get the idea. Well, while we were in Florida this past summer, my son slept over at their condo one night after we had all gone out to dinner. He had eaten something (we still aren't sure what) that contained hidden gluten, and he was up all night with it coming out both ends. Of course, they were up with him all night and finally got to experience why "cheating" is NOT okay. After three days of feeling "yucky", my son finally was feeling better and my mother was still apologizing for not "getting it" before.

Unfortunately, we still have other family members and friends who don't understand and think we're just being a "pain". Oh well.....

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