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sahm-i-am

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

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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?


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!)

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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.

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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 .


Diagnosed with Coeliac disease in 2003

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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.


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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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.

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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:)

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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.


 

 

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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!!!!!!!!!!!!!!!!!!!" :(


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 :(

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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!


Grain-free,dairy-free, soy-free (celiac, possible colitis now as well).

Extremely allergic to shellfish, Aspirin & Ibuprofen

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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

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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:

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"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!

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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...

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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.


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

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Thanks everyone for your support and suggestions!! Hopefully the comments I receive will die down now that the "newness" has worn off for them. I would just like to honestly tell them how hard being gluten free really is, constantly on alert and analyzing EVERYTHING that goes into your mouth. It's enough to make a lil' girl tired! But I usually just say, "Yes, so much better - thanks" and let them think the diet is working and it's a piece of cake (gluten free of course!) ;)

We went to the movies the other day and my friend looked at me when I ordered popcorn and said, "You can eat popcorn?" Duh! :rolleyes:


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!)

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I'll admit I've said it many times. People have expressed their sympathy, etc. and I've said, "Ya know what? With all the health issues people can have... this is NOTHING. I've just had to learn how to cook differently, that's all."

Cause I've not found it so difficult. We didn't eat a lot of processed food even before my celiac diagnosis and I've always enjoyed cooking. We don't eat out a lot and, honestly, I've found dealing w/ celiac disease WAY easier than being dairy free!!


luvs2eat

Living in the beautiful Ozark mountains in Arkansas

positive blood tests and later, positive biopsy

diagnosed 8/5/02, gluten-free (after lots of mistakes!) since that day

Dairy free since July 2010 and NOT happy about it!!

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Ravenwood has a great response- kinder than the two word (unprintable here) response that would pop into my mind.

But, really, I too thought I had cancer and discovering I just needed to change my diet was a monumental relief. It's remarkable how much gluten and processed foods Americans in particular eat. I always look at people's carts in the grocery line and never cease to be astonished at the preponderance of processed and glutinous items- no wonder we're in the state we're in!

lisa

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Thanks everyone for your support and suggestions!! Hopefully the comments I receive will die down now that the "newness" has worn off for them. I would just like to honestly tell them how hard being gluten free really is, constantly on alert and analyzing EVERYTHING that goes into your mouth. It's enough to make a lil' girl tired! But I usually just say, "Yes, so much better - thanks" and let them think the diet is working and it's a piece of cake (gluten free of course!) ;)

We went to the movies the other day and my friend looked at me when I ordered popcorn and said, "You can eat popcorn?" Duh! :rolleyes:

Holy cow I can eat movie popcorn??


Diagnosed with Gluten Allergy April 2010. Family history of Celiac disease and bowel cancers. Already feeling a billion times better since going gluten free.

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it could be worse? it WAS worse! imagine taking all your meals and chucking them down the toilet...

lol after schooling my husband on cc issues and me bringing all my own food to his family reunion, he is showing me the box the burgers came in '100 pct beef' I said: and you're gonna cook it on what? and just blinked and walked away. later I saw him sneak down by his dads grill and check out the grates.... lots of *flavor* aughhhhhhhh!


arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

only YOU can prevent forest fires - smokey t. bear

 

have a nice day :)

Celiac.com - Celiac Disease Board Moderator

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Holy cow I can eat movie popcorn??

In a lot of theaters yes. One of my best finds since I started going out to movies again was that my local theaters popcorn was safe. Just went on a slow day and asked to see the ingredients of the flavored oil they use and they were happy to comply.


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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I don't have any good come backs for when people say stuff like that. But I do know how you feel. Just because it could be worse, and we all know it could be worse, doesn't mean you don't deserve any sympathy at all. A broken finger sucks, a broken arm sucks more, but that doesn't make the broken finger hurt less.

Hyacinth


Trying out the gluten free diet, and seeing vast improvement in migraine headaches

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Thanks everyone for your support and suggestions!! Hopefully the comments I receive will die down now that the "newness" has worn off for them. I would just like to honestly tell them how hard being gluten free really is, constantly on alert and analyzing EVERYTHING that goes into your mouth. It's enough to make a lil' girl tired! But I usually just say, "Yes, so much better - thanks" and let them think the diet is working and it's a piece of cake (gluten free of course!) ;)

We went to the movies the other day and my friend looked at me when I ordered popcorn and said, "You can eat popcorn?" Duh! :rolleyes:

I DO tell them. I was very ill for a long long time and it got so bad I had trouble functioning. Once I got diagnosed I was so sick I kept having to go to the ER and then it took me 6 months gluten free to really feel better. I had a few friends minimize it like it was no big deal in the beginning, when I was going through major withdrawals and having such bad dizzy spells I couldn't drive. I was bedridden and unable to care for my children. Just getting going in the morning was a chore and I was pooping 12 to 15 times per day.

So I gave them an education. If they were going to make an ignorant comment proving their lack of compassion and knowledge then I felt perfectly within my rights to tell them exactly what it means to be a celiac.

I talk about celiac with my friends and how sick I get if I get glutened. I was gluten on the 2nd of July and had to attend a pool party the next day and entertain on the 4th sick as a dog. You bet I told my friends and loved ones how sick I was. Not to have a pity party but so they will understand.

I don't belabor it or go on and on but I do tell them. People can't know something they dont' know unless someone educates them.


Lots of doctors diagnosed me with lots of things including IBS, lactose intolerance, wheat intolerance, and quite a few of them threw up their hands in total confusion.

Had GI symptoms, allergy symptoms and unexplained illness my whole life.

Jan. 2010 Diagnosed celiac at the age of 40.

Ready to get well and get on with my life!

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I don't have any good come backs for when people say stuff like that. But I do know how you feel. Just because it could be worse, and we all know it could be worse, doesn't mean you don't deserve any sympathy at all. A broken finger sucks, a broken arm sucks more, but that doesn't make the broken finger hurt less.

Hyacinth

I wouldn't even go for good comebacks. Just being forthright and honest. Tell them how sick celiac has made, and how sick it can make you from stories on the board. That it's an autoimmune disorder and it does damage to many systems in the body.


Lots of doctors diagnosed me with lots of things including IBS, lactose intolerance, wheat intolerance, and quite a few of them threw up their hands in total confusion.

Had GI symptoms, allergy symptoms and unexplained illness my whole life.

Jan. 2010 Diagnosed celiac at the age of 40.

Ready to get well and get on with my life!

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So, how about it - what should I say?

"Yes, it could be you."

I would say 'Yea it could be worse, I could be one of the celiac's diagnosed by autopsy'

Love this!


1960s-had symptoms-could have been before but don't remember

1970s-told had colitis or nervous stomach-was given phenobarbital, felt great but still had symptoms

Me, dd and ds diagnosed with Lactose Intolerance

2000-osteopenia

2001-had stroke because of medications I was given

June 2003-saw Chiropractor who specialized in nutrition: Celiac Disease not Lactose Intolerance, went gluten free with once in awhile cheating, off soy and dairy for about 6 months

June 2003-found excellent doctor for fibromyalgia (who has found out she has Celiac Disease)

May 2006-went gluten free with NO cheating-excellent! Made all the difference in the world

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