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


sahm-i-am

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sahm-i-am Apprentice

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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dilettantesteph Collaborator

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

chasbari Apprentice

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.

tennisman Contributor

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 .

ravenwoodglass Mentor

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.

JBaby Enthusiast

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.

jodi2010 Rookie

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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kareng Grand Master

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.

cassP Contributor

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

precious831 Contributor

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!

mamaw Community Regular

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

Skylark Collaborator

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:

TrillumHunter Enthusiast

"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!

i-geek Rookie

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...

kayo Explorer

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.

sahm-i-am Apprentice

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:

luvs2eat Collaborator

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!!

oceangirl Collaborator

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

K8ling Enthusiast

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??

notme Experienced

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!

ravenwoodglass Mentor

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.

Hyacinth Newbie

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

sandsurfgirl Collaborator

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.

sandsurfgirl Collaborator

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.

Ahorsesoul Enthusiast

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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Is it realistically safe to eat food my mom cooks, if we get separate pans/ and boards even if gluten is still used in the same kitchen? There will always be low risk of cc chances like that she will still touch stuff that was touched by her and my siblings after they ate gluten. And as there are gluten eaters in the house and she also prepares and eats gluten. So would opening the fridge then getting the food and touching the food be okay? So basically what i am doing, washing my hands multiple times while preparing food, she would only wash it once before, then touch anything else (for example water tap or handles) that were touched with gluteny hands, then also touch the food. I dont know if I ever could feel safe, I could try telling her how important cc really is. And I trust her so she wouldnt lie to me then be careless about cc, but idk how safe it really can be if she and everyone else keeps eating gluten and touching stuff in the house after eating. 2. Do I need to worry about touching doorknobs, fridge handles, light switches, etc. that family members touched after eating gluten? What about public places like bus handles or school desks? Or like if i went to the gym, I would be touching stuff all the time, so there will be small amounts of gluten and those would get transferred on my phone if I touch my phone while in the gym. But I want to knos if it would be enough to do damage. 3. Is an endoscopy (without biopsy) enough to tell if my intestines are healed? I’d pay privately if it could help and if i dont get a refferal. Or do i need a biopsy? 4. Could my job (powder coating, sandblasting, etc.) expose me to gluten or damage my intestines through air/dust? 5. Do I need certified gluten-free toothpaste, hand soap, shampoo, or moisturizer? (For example: Vaseline and Colgate don’t contain gluten ingredients but say they can’t guarantee it’s gluten-free.) 6. Is spices like pepper with “may contain traces of gluten” safe if no gluten ingredients are listed? Or does everything need to be labeled gluten-free?  7. Is continuing to only eat my own food the better choice, or could I eventually go back to eating what my mom cooks if she’s careful? 8. is cutlery from dishwasher safe if there are stains? Stuff like knives is used for cutting gluten bread or fork for noodles etc. I often see stains which i dont know if its gluten or something else but our dish washer doesnt seem to make it completely clean. 9. I wash my hands multiple times while preparing food. Do i need to do the same when touching my phone. Like if i touch the fridge handle, I wash my hands then touch the phone. I dont eat while using my phone but i leave it on my bed and pillow and my face could come in contact with where it was.  10. Do i need to clean my phone or laptop if theyve been used by people who eat gluten? Even if no crumbs fall onto my keybaord, i mean because of invisible gluten on their fingers. 11. Does medication/supplements have to be strictly glutenfree? One company said they couldn‘t guarantee if their probiotics don’t contain traces of gluten.  12. I had bought supplements in the past, some of them say glutenfree and some of them dont(like the brand „NOW“ from iherb). I bought them and used them when i wasnt washing my hands so often, are they still safe? As I touched and opened them after touching door knobs, water taps etc. It was like a year ago when i bought those and even though i was eating gluten-free, I never worried about what i touch etc. I know this post is long. I’m just extremely overwhelmed. I’m trying to protect myself from long-term health damage, but the OCD is destroying my quality of life, and I honestly don’t know what’s a reasonable level of caution anymore. Thanks for reading.
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