Jump to content

Follow Us:  Twitter Facebook RSS Feed            




   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Celiac.com Sponsor:                                    


Photo
- - - - -

What Is Your Response When People Say.....


  • Please log in to reply

32 replies to this topic

#1 sahm-i-am

 
sahm-i-am

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 171 posts
 

Posted 14 August 2010 - 02:07 PM

I need some witty, snide, smart or funny remarks to say to people when they say, "It could be worse" when I tell them I have Celiac Disease. Yes, of course it could. A few months ago we all thought I had cancer. Of course I am happy that was a misdiagnosis, but I would love for people to go gluten-free for 1 month and tell me how grateful and happy they feel!!! Especially since I was asymptomatic before and now I have ALL these GI issues. And I'm still mourning my Krispie Kreme donuts!!!!!

So, how about it - what should I say?
  • 1
Diagnosed with Lymphoma March 2010. After surgery doctors said "Oops!"
Diagnosed with Celiac Disease April 2010. After endoscopy doc said "Aren't you glad?"
Uhhh.....yeah!
DD #1 ('99) tested negative on bloodwork but positive on 2 genetic markers. Went gluten free in July 2010 and has been symptom-free ever since!
DD #2 ('98) tested negative and has no symptoms. Didn't fork out money for genetic testing. Will watch and test regularly.
Husband tested positive in July 2010 and has refused to go gluten free. Uh huh, that's gonna bite him in the a** one day! (Pun intended!)

Celiac.com Sponsor:

#2 dilettantesteph

 
dilettantesteph

    Advanced Community Member

  • Banned
  • PipPipPipPipPipPip
  • 3,035 posts
 

Posted 14 August 2010 - 02:13 PM

I think you are pretty new to this still. I remind myself all the time that it could be worse.
  • 2

#3 chasbari

 
chasbari

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 391 posts
 

Posted 14 August 2010 - 02:21 PM

All I can think of is that old T-shirt that said something like "weather is here.. wish you were nice" or something like that. Hard to judge what to say to well intentioned morons as they usually are saying that in reaction to the fact that you are standing there not looking dead to them. For many, this alone is bonus time. I graciously do acknowledge that it, indeed, could be much worse and that I was glad it turned out to be this instead of cancer that they were looking for as well. I also let them know I would never wish this on my worst enemy. If they still act stupid, I start talking about poop.
  • 2

#4 tennisman

 
tennisman

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 271 posts
 

Posted 14 August 2010 - 02:39 PM

I'm sorry people say that , I don't really remember anyone saying that to me lately , but I would get very annoyed if someone said that to me as Celiac has caused me a lot of other health problems. If they had something seriously wrong I would just try and change subject but if they had nothing or small problems just explain how ill you get if you accidentally eat gluten and make it sounds as bad as you possibly can and try and make them feel really bad for making a stupid comment .
  • 2
Diagnosed with Coeliac disease in 2003

#5 ravenwoodglass

 
ravenwoodglass

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 13,790 posts
 

Posted 14 August 2010 - 03:03 PM

I would say 'Yea it could be worse, I could be one of the celiac's diagnosed by autopsy' I must give credit to my current GI for that comment spoken when he found out how far advanced I got before I was diagnosed.
  • 3
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)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
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 with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity 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)

#6 JBaby

 
JBaby

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 127 posts
 

Posted 14 August 2010 - 03:21 PM

oooh ravenwood, that one I like. I am gonna use that. Some people think I have an eating disorder either bulimia or anorexia and that celiac is just a cover for my pickiness in food choices. Thats where my blood boils.
  • 2

#7 jodi2010

 
jodi2010

    New Community Member

  • Members
  • Pip
  • 9 posts
 

Posted 14 August 2010 - 03:50 PM

oh one day at work i offered someone some blueberries, they actually looked at me and said" oh no, you eat them, thats probably all you are going to eat today"..okay at that moment the most fearsome skinny woman you ever saw came out of me..lol!! I was ready to throw down!! ...i am through trying to convince people that i do not have an eating disorder, and they watch me snack all day!! so here is what i say....I'm thin and i'm in baby:)
  • 2

#8 kareng

 
kareng

    HO! HO! HO!

  • Moderators
  • PipPipPipPipPipPip
  • 14,312 posts
 

Posted 14 August 2010 - 04:01 PM

Ravenwood -I'm going to use that one, too. Some people were like, "oh, is that what was wrong with you?". In a tone that sounds like I had said I had broken a nail. I tried to explain in more detail. One said "I have IBS and colitis. I should watch that, too but when it gets bad, I get steroids. I take medicine everyday so I don't have to watch what I eat. You should get these steroids I get.". I just told her I was hoping to avoid them.
  • 2

santa-dance.gif

 

Once again, we come to the Holiday Season, a deeply religious time that each of us observes, in his own way, by going to the mall of his choice. - Dave Barry
 
“The main reason Santa is so jolly is because he knows where all the bad girls live.”  - George Carlin
 
“One can never have enough socks," said Dumbledore. "Another Christmas has come and gone and I didn't get a single pair. People will insist on giving me books.”  - J.K. Rowling, Harry Potter and The Sorcerer's Stone
 
 
 
 
 

 


#9 cassP

 
cassP

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,655 posts
 

Posted 14 August 2010 - 04:50 PM

I need some witty, snide, smart or funny remarks to say to people when they say, "It could be worse" when I tell them I have Celiac Disease. Yes, of course it could. A few months ago we all thought I had cancer. Of course I am happy that was a misdiagnosis, but I would love for people to go gluten-free for 1 month and tell me how grateful and happy they feel!!! Especially since I was asymptomatic before and now I have ALL these GI issues. And I'm still mourning my Krispie Kreme donuts!!!!!

So, how about it - what should I say?


oh no- im so sorry - but i DO say it to myself all the time... and i would probably say it to someone else-
for me anyways- it's way better than Diabetes or Lupus or MS...
BUT- YOU deserve some major understanding tho- cause Lymphoma is HUGE.. and "iron infusions".. that doesnt sound delightful...

it is a big pain in my a tho- & NO LIE- i thought to myself at work today: "i could TOTALLY down a DOZEN Krispy Kremes right now!!!!!!!!!!!!!!!!!!!" :(
  • 2
1986- Elevated Speckled ANA/no Lupus.negative Sjorgens
2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.
no biopsy (insurance denied)
6/2010- Enterolab Gene Test:
HLA-DQB1 Allele 1 0302
HLA-DQB1 Allele 2 0302
HLADQ 3,3 (subtype 8,8)
7/2010- 100% Gluten Free
8/2010- DH
10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

#10 precious831

 
precious831

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 214 posts
 

Posted 14 August 2010 - 05:16 PM

Uggh I get the "eating disorder" comments too. They see I'm skinny and think how lucky I am! Whatever right? If they only knew. One girl thought I only eat one meal a day and that was it. I corrected her, told her I eat 3 meals a day and snack all day long! I am seriously hungry all the time. LOL For real!
  • 2
Grain-free,dairy-free, soy-free (celiac, possible colitis now as well).
Extremely allergic to shellfish, Aspirin & Ibuprofen

#11 mamaw

 
mamaw

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,064 posts
 

Posted 14 August 2010 - 05:58 PM

When you get to be a seasoned celiac it will not matter what others say or think--- you will be happy & healthy& in the end that is what truly matters. By then these uninformed ( putting it kindly) people may be suffering with an issue of their own. What goes around comes around..
BUt , I want to tell you on the Betterbatter.org site there is a krispy kreme clone & its good!!!! Plus many more yummy recipes!

blessings

mamaw
  • 2

#12 Skylark

 
Skylark

    Glutenologist

  • Advanced Members
  • PipPipPipPipPipPip
  • 5,490 posts
 

Posted 14 August 2010 - 05:59 PM

I think you are pretty new to this still. I remind myself all the time that it could be worse.

Me too. After so many years of health problems I'm genuinely grateful that most of it was gluten-related and can be changed by adjusting my diet.

@Raven - Diagnosed by autopsy is pretty good as far as snide/witty!

By the way, the Kinnikinnick frozen donuts are quite good. I finally founds some after Mom raved about them. So much for my weight loss efforts this week. :lol:
  • 2

#13 TrillumHunter

 
TrillumHunter

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 688 posts
 

Posted 14 August 2010 - 06:05 PM

"I know, right?"

I'm in the camp that did think it was something far worse for a long time. I'm also one that didn't heal right up, but has damage that requires continued infusions/shots.

I still think it could be worse--a lot worse.

It can get easier and the people on this board are an enormous help and support!
  • 2

#14 i-geek

 
i-geek

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 366 posts
 

Posted 14 August 2010 - 06:27 PM

When you get to be a seasoned celiac it will not matter what others say or think--- you will be happy & healthy& in the end that is what truly matters. By then these uninformed ( putting it kindly) people may be suffering with an issue of their own. What goes around comes around..


No kidding. I remember just last year seeing the "gluten-free" label on a co-worker's jar of organic peanut butter (he's not a celiac, just extremely health-conscious to the point of being annoying on occasion) and thinking "oh, here we go again, now everything has to be gluten-free. What's next?" And of course then my own celiac disease went from latent to active that same year. Boy, did I eat crow from that one...
  • 2

#15 kayo

 
kayo

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 324 posts
 

Posted 14 August 2010 - 09:28 PM

I have RA and have had a lot of surgeries and related illnesses and I heard the "It could be worse" many times in my life. This is one of my favorite responses if I feel they are being flippant or condescending.

Them: It could be worse
Me: I know, I could have your thighs! [insert: haircut, ugly shirt, etc.]

You should get these steroids I get.


When anyone tells me, you should go on steroids, I say no thanks, I'd like to keep my hips. Long term steroid use should be a last ditch effort. People don't understand how steroids can rob them of calcium and destroy their joints.
  • 3
40 year old former foodie on a quest to feel better!

-IgE to oats and rye
-Diagnosed with Colitis via endoscopy/colonoscopy Oct '10
-Following FODMAP diet since June '10, Positve SIBO test, July '10
-Diagnosed non-celiac gluten intolerant June '10 (celiac in March '10, endocsocopy in Oct '10 shows no signs of celiac)
-Osteopenia June '10
-Gluten free since July '09 & Soy free since December '09
-Dairy free since '06
-IBS & Sjogren's diagnosed '05
-RA diagnosed as a toddler





0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: