Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Things People Say To Celiacs


researchmomma

Recommended Posts

Rachel85 Rookie

I think my best one to date has to be when I went to my friend's house, she was cooking dinner for a group of us and they all know I can't eat gluten. The dinner was lovely (I helped her work out what I could and couldn't have, and prepared it with her to be on the safe side) but when it came to dessert...that was another matter. She'd asked us what our favourite desserts were and had made mine, but as she was bringing it out said "oh yeah so I was going to make a gluten free version for you...but then I couldn't be bothered, so you can just watch us eat ours!!"


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



IrishHeart Veteran

She'd asked us what our favourite desserts were and had made mine, but as she was bringing it out said "oh yeah so I was going to make a gluten free version for you...but then I couldn't be bothered, so you can just watch us eat ours!!"

:o

that's just wrong.

damn, just when I thought she "got it"....with the dinner prep and all. Sorry, hunny!

um, did anyone else at the table find that at all offensive? just wondering.

Rachel85 Rookie

um, did anyone else at the table find that at all offensive? just wondering.

Sadly no. While my boyfriend has been wonderfully supportive and understanding, my friends all think I'm over-reacting "with this whole er....food thing". Also, a friend's partner has celiac and is so relaxed about it (gluten evidently doesn't make him feel like he's dying), eating gluten whenever he fancies it, so that doesn't help!!

IrishHeart Veteran

Sadly no. While my boyfriend has been wonderfully supportive and understanding, my friends all think I'm over-reacting "with this whole er....food thing". Also, a friend's partner has celiac and is so relaxed about it (gluten evidently doesn't make him feel like he's dying), eating gluten whenever he fancies it, so that doesn't help!!

That is a shame, ignoring a celiac DX like that. Even if he doesn't feel the damage, it is happening nonetheless. He is just a ticking time bomb. :ph34r:

Steel yourself against stupidity and unkindness--and look into your boyfriend's loving eyes whenever you find yourself in such moments and smile at him and tell yourself, "No matter. HE gets it." :) It's what I do with my dear hubs.

researchmomma Contributor

The things people say are really amazing. Like Irish, we have had more than a few people say "oh, you are on that fad diet".

Then there are the friends who go out of their way to accommodate and have you over for a really nice gluten free dinner (all the while asking questions to make sure they don't accidentally gluten my daughter).

I have a neighbor who has two or three autoimmune diseases and when she brought her ailments again, I told her about gluten free and what it has done for us. She said she couldn't even think about how much work it is to be gluten-free and how many things she would miss. She also didn't think her family would support it. I guess they would rather hear about all her ailments and grief. :o:(

Kimbalou Enthusiast

Or my personal favourite which I have heard from everyone from family members to grocery store cashiers..."Ugh, I would kill myself if I couldn't have pasta/bread/croissants/cake."

Wow. You just said my life is not worth living. Think about that for a second.

Last time I got that comment from a cashier I responded with, "Well, I would kill myself if I had to bag groceries all day." I know that was rude but I couldn't help myself.

So funny! I dealt with an ignorant cashier yesterday. ugh

IrishHeart Veteran

I have a neighbor who has two or three autoimmune diseases and when she brought her ailments again, I told her about gluten free and what it has done for us. She said she couldn't even think about how much work it is to be gluten-free and how many things she would miss. She also didn't think her family would support it. I guess they would rather hear about all her ailments and grief. :o:(

This is MY FAMILY.

:blink:


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



gfpirate Rookie

Love the video!

I've had a lot of varied reactions from people when they find out about my condition. I go to high school, and since kids there can be so rude and arrogant, I try to keep my condidition a secret. It seems every time I tell someone, an avalanche of questions follows.

I've had people say things such as,

"I would kill myself if I had to eat like that. Like, literally."

"Uhh, yeah, I'm a bit curious as to what you eat."

"That SUCKS."

"If I had that, I would just keep eating gluten and throw it all up. Big deal."

"Oh, THAT'S how you stay so thin."

"Are you still on your weird gluten free thing?"

And then they want to try my food...

"This tastes like I stuck my tongue in a helicopter propeller."

"Ew, does everything you eat taste this weird?"

But it's not all bad. I've had some really nice reactions as well...

"If you ever need a shoulder to cry on, I'm here."

"You have Celiac? Me too!" (She was my teacher and we had a nice conversation about all the local places with gluten free food).

I think the worst was actually BEFORE I was diagnosed. I was always feeling miserable and wanting to leave school early. I got called a hypochondriac many times, an attention hog, and worse. Thankfully, many apologized when I told them that I finally figured out what was wrong with me.

jeanzdyn Apprentice

I have heard a lot of stupid statements and I was just diagnosed this past November.

I like to tell them about Kinnikinnick Pizza Crusts -- I start by saying "even if I did not have to be gluten-free I would buy these pizza crusts, because they are better than any pizza crust I have ever had..."

Also, maybe I am weird, but I have not found it that difficult to observe the gluten-free diet. I guess that maybe I was not consuming that much gluten any more, without really thinking about it. I had only a small bag of food items that I needed to discard.

I just feel like I have found a lot of good, and tasty foods that are gluten-free. Yes, I have had a couple of 'disasters'-gluten-free things I bought to eat that were truly awful, but by and large, I am not disatisfied with the gluten-free diet and I do not feel deprived at all. As long as I can have chocolate, yogurt, cheese, then I will be okay with this.

But I have to agree that I wish people who don't know what they are talking about would keep their comments to themselves.

WinterSong Community Regular

A few more things I've gotten:

"What's glucose?"

"You don't need to be on a diet! You're so skinny!"

"Can you hold a baby who has just eaten gluten?" :huh:

Also, I was at a restaurant with a bunch of friends (I wasn't eating - it wasn't the type of restaurant that would be able to accommodate) and had mentioned my diet to a new friend. She said, "Oh me, too! I have a gluten intolerance." And then she proceeded to eat some chicken wings that were drenched in sauce, probably filled with gluten. <_<

Monklady123 Collaborator

Yes, as someone said, these are funny and sad. Some of my favorites are:

- "Well just what *can* you eat anyway?" -- um...almost everything, just not wheat, barley, rye, or non gluten-free oats.

-- "You can just taste this, right? It's small." :ph34r:

-- "So-and-so [insert name of friend/cousin/woman from church] follows a gluten free diet and she never reads the salad dressing labels in restaurants." [this was during a church meeting we had at a local restaurant, and the server was nice enough to bring me the bottle since he wasn't sure of the ingredients.] -- And that would be because "so-and-so" either isn't really gluten intolerant/celiac or isn't worried about damaging her body. (which is exactly what I said! I was annoyed...lol.)

-- And one of my personal favorites, which many of you have already mentioned: "I made this with white bread so you can eat it, not whole wheat." [spoken by more than one person at church potlucks. But they do mean well...]

As someone said in another thread, we have to educate people. The ones that annoy me are the ones who HAVE heard me talk about it, more than once. If I've said "no I cannot eat even a 'little bit' of gluten" more than once then don't keep asking me if I can "just taste this cookie"! (a lady at church does this to me.) And once I've explained to you that white bread is also "wheat" unless it specifically says otherwise please don't keep offering me your bread pudding. :ph34r:

But if someone is new to the whole thing then I am happy to give them information because I know I was totally ignorant before I was diagnosed.

gfpirate Rookie

I've also had a similar experience as posted above... A lady my mom works with told me that she had Celiac as well. (This was when I was first diagnosed). I believed her at first but as time went on and I did more research, it seemed as if she was stretching the truth... this was confirmed when she walked in with a big bag of Chick Fil A and said that she didn't get me a chicken sandwich because of the bread, but I was "welcome to have one of the fried chicken strips, because those are gluten free." *facepalm!* The things we put up with...

curlyfries Contributor

Just had an interesting conversation at lunch today. It's not unusual for people who know me to ask, "So what is that you're eating?" A friend asked and I told her and she said, "I thought you couldn't eat meat."

:blink:

So maybe she heard something incorrectly in the past. I'll give her the benefit of the doubt.

I am also totally sugar/grain free. This same friend proceeded to tell me that salt is essentially the same as sugar. "You know that, right?"

:huh:

"Welll....my body doesn't think so."

"Are you sure?"

:rolleyes:

xjrosie Apprentice

I've also had a similar experience as posted above... A lady my mom works with told me that she had Celiac as well. (This was when I was first diagnosed). I believed her at first but as time went on and I did more research, it seemed as if she was stretching the truth... this was confirmed when she walked in with a big bag of Chick Fil A and said that she didn't get me a chicken sandwich because of the bread, but I was "welcome to have one of the fried chicken strips, because those are gluten free." *facepalm!* The things we put up with...

Actually, I wouldn't chalk this one up to ignorance. When my daughter was diagnosed in December, one of the first meals I made was chicken nuggets. As I was frying them, I realized they were covered in gluten-filled coating! The first two weeks were a major wake-up call as to what my kids could and could not have. When we went to McDonald's for the first time after the diagnoses (more than one kid with Celiac) I had to break the news to her that she couldn't have a filet-o-fish. In my head I was thinking, "Oh, she can just have chicken strips." But then I remembered that they're BREADED! Sheesh, we had to leave and find someplace else to eat that night.

I, too, have had people say how horrible it would be to not eat all the gluten-filled goodies. I just tell them we can, but our food is better because we're not poisoning ourselves with unnecessary food additives. In fact, when I make things for my kids, they say my homemade foods are better than the store-bought foods I'm replacing!

ctenny Rookie

"I know you can't have Ice cream, so I got you a malt"...

WTF

I swear, if anybody offers me a malt... I will... grrrr..

But we can have basic flavors of ice cream as long as they don't have ingredients containing gluten right? Like pure vanilla ice cream is still okay... right?

Strawberry-Jam Enthusiast

pure vanilla ice cream is fine--cream, sugar, eggs, vanilla. Read the ingredients.

That is, of course, if you don't have a problem with lactose or casein.

Rachel85 Rookie

"So if you can't eat anything, why aren't you like, really slim?"

faithforlife Apprentice

Yes IrishHeart I take gluten-free communion myself and share with 2 other gluten-free families!

IrishHeart Veteran

Yes IrishHeart I take gluten-free communion myself and share with 2 other gluten-free families!

I am happy to hear that so many churches are accommodating the parishioners. That's great news! :)

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

    2. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    3. - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    4. - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

    5. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,908
    • Most Online (within 30 mins)
      7,748

    ebrown
    Newest Member
    ebrown
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
    • Scott Adams
      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.