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


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32 replies to this topic

#16 sahm-i-am

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Posted 15 August 2010 - 04:30 AM

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:
  • 2
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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#17 luvs2eat

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Posted 15 August 2010 - 04:40 AM

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!!
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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!!

#18 oceangirl

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Posted 15 August 2010 - 05:20 AM

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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#19 K8ling

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Posted 15 August 2010 - 05:41 AM

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??
  • 2
Diagnosed with Gluten Allergy April 2010. Family history of Celiac disease and bowel cancers. Already feeling a billion times better since going gluten free.

#20 notme!

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Posted 15 August 2010 - 05:53 AM

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!
  • 2

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 :)

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#21 ravenwoodglass

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Posted 15 August 2010 - 07:22 AM

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.
  • 1
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)

#22 Hyacinth

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Posted 15 August 2010 - 11:46 AM

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

#23 sandsurfgirl

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Posted 15 August 2010 - 09:41 PM

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.
  • 1
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!

#24 sandsurfgirl

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Posted 15 August 2010 - 09:43 PM

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.
  • 1
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!

#25 Ahorsesoul

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Posted 16 August 2010 - 06:31 AM

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!
  • 1
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

#26 Gemini

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Posted 16 August 2010 - 08:43 AM

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



I'm with you......when I think of all the diseases there are, I would still choose celiac disease over any of them. I actually get very annoyed when people say they are sorry if I end up having to mention I have Celiac. I always reply that they don't need to apologize to me as things could always be a lot worse. I could have a disease I have no control over. I have felt this way from day one because I am forever grateful that I found the problem and can eat and feel great again!

I think many get to this point after awhile when their focus changes...that can take time.
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#27 jerseyangel

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Posted 16 August 2010 - 09:02 AM

Them: It could be worse
Me: I know, I could have your thighs!

:lol: :lol: :lol:
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Patti


"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

#28 mushroom

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Posted 16 August 2010 - 09:25 AM

"I could have your thighs!"

Can't use this one, I do have her thighs :lol:
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#29 heatherjane

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Posted 16 August 2010 - 09:32 AM

People are going to say ignorant things...that's the way of the world. For the most part, I've found that people who've made ignorant comments to me are well-meaning and really aren't trying to be rude. It just gives me an opportunity to educate them. In many ways, the celiac diagnosis has been a blessing to me (even though sometimes I curse it)...things really could be much worse. The trick is remembering that on the not so good days.
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#30 Ahorsesoul

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Posted 16 August 2010 - 09:41 AM

People are going to say ignorant things...that's the way of the world. For the most part, I've found that people who've made ignorant comments to me are well-meaning and really aren't trying to be rude. It just gives me an opportunity to educate them. In many ways, the celiac diagnosis has been a blessing to me (even though sometimes I curse it)...things really could be much worse. The trick is remembering that on the not so good days.


So true. Thanks for the reminder.
  • 1
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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