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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

What Is Your Response When People Say.....
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33 posts in this topic

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?

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

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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 .

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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.

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

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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!

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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.

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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:

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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!!

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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??

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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!

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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.

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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

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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.

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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.

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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!

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