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

Petty, Silly Annoyances That You Would Never Tell Anyone Else.


frenchiemama

Recommended Posts

frenchiemama Collaborator

I hate when my coworkers tell me that I should try some great new restaurant. "That place has the BEST burgers! You should go there sometime." Ugh. Then I tell them (again, for the millionth time) that although I would like to eat there, I can't. Which they respond to with a blank stare and then say "Oh....right....."

I KNOW that not everyone is obligated to keep track of my dietary restrictions, but COME ON! I spend 40+ hours a week with these people and they know very well that I can't eat the same things that they do. Pay attention why don't you!

And now I feel better.


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



Celiac.com Sponsor (A8-M):



Kaycee Collaborator

They just don't get it.

And my sister feels that I still have stomach symptoms, not because I have ingested hidden gluten, (or soy which I am wondering if that is another problem for me), but she thinks it is because I work too hard and walk too much, and it could be in the water. What have they got in relation to coeliac? The water bit is interesting, as I asked her if the water was better, could I then eat gluten. She said, well, you never know.

I will never give up the job or the walking. I can't afford to do either.

Cathy

mamatide Enthusiast
I hate when my coworkers tell me that I should try some great new restaurant. "That place has the BEST burgers! You should go there sometime." Ugh. Then I tell them (again, for the millionth time) that although I would like to eat there, I can't. Which they respond to with a blank stare and then say "Oh....right....."

I KNOW that not everyone is obligated to keep track of my dietary restrictions, but COME ON! I spend 40+ hours a week with these people and they know very well that I can't eat the same things that they do. Pay attention why don't you!

And now I feel better.

Like I was saying to a friend that we couldn't take DD to McDonald's because of her celiac disease. She said, "yeah... I guess you have to stick to Subway!" And she's a dentist...

Guess people never really understand unless it directly affects them or someone they are responsible for.

Chin up frenchie. At least we all have each other.

bluejeangirl Contributor

I hate that people think you can cheat alittle bit now and then. Like with a weight low diet. They don't know how it hurts to get the smallest amt of gluten. Or someone will say "it has very, very little if any flour in it." They act so casual about it.

utdan Apprentice
I hate when my coworkers tell me that I should try some great new restaurant. "That place has the BEST burgers! You should go there sometime." Ugh. Then I tell them (again, for the millionth time) that although I would like to eat there, I can't. Which they respond to with a blank stare and then say "Oh....right....."

I've learned to not bring up C in response to things people say or suggest. I just say "that's ok" or "I'll have a salad instead." Then they get to thinking to themselves why aren't they having the delicious stuff? Then they say, "oh, that's right. You can't eat that because...". Then I say "yes" :). It's only when it troubles them that they will learn, when they have to figure it out for themselves instead of me just telling them.

It's only when somebody might be offended for my refusing to eat their stuff that I'll say "no thanks, I'm allergic to wheat." Saying wheat is a lot easier for people to understand than saying gluten!!

Another thing is don't get upset! Some people might ask that just to get a rise out of you. I find that if I'm positive and upbeat about my way of eating then it makes them think really hard about how I can manage to be positive and not bothered by it.:)

miles2go Contributor
I hate that people think you can cheat alittle bit now and then. Like with a weight low diet. They don't know how it hurts to get the smallest amt of gluten. Or someone will say "it has very, very little if any flour in it." They act so casual about it.

One of my best friends just last week was suggesting that I should be doing small amounts of wheat on a regular basis, "you know, like homeopathically".

She happened to be the one driving at the time, so I didn't rip her eyes out. :rolleyes:

I've learned to not bring up C in response to things people say or suggest. I just say "that's ok" or "I'll have a salad instead." Then they get to thinking and say, "oh, that's right. You can't eat that because...". Then they start to get it because they found out for themselves instead of me just telling them.

It's only when somebody might be offended for my refusing to eat their stuff that I'll say "no thanks, I'm allergic to wheat." Saying wheat is a lot easier for people to understand than saying gluten!!

That tactic works for me too, Dan, and goes a long way towards making me not feel like my dining partners' pet monkey in social situations.

Margaret

emcmaster Collaborator

What's even worse (for me, at least) are the people that think they know what celiac is, rather than the people that are honest that they know nothing about it.

I was at the dentist last week and my hygenist claimed she didn't eat gluten. When I told her I needed to see the ingredients for the tooth polish, she said: "I promise you there is no gluten in there. They wouldn't put bread in a tooth polish." :blink:

She gave me a harder time than people that admit that they don't know what it is.


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



Celiac.com Sponsor (A8-M):



jerseyangel Proficient
I hate that people think you can cheat alittle bit now and then. Like with a weight low diet. They don't know how it hurts to get the smallest amt of gluten. Or someone will say "it has very, very little if any flour in it." They act so casual about it.

I have to agree with this. Just last weekend, a relative told me that I could eat a little "gluten treat" now and then and be fine. She has a friend with Celiac, and evidently this is where she gets her information. I, of course, explained why this was not correct, and that her friend was still causing herself internal damage even if she dosen't feel any different. Don't know if it did any good, but at least she listened and really seemed to understand what I was saying.

mommida Enthusiast

My pet peeve, every time I use the old "I'm allergic to wheat" that's when I find another Celiac is in the room.

L.

utdan Apprentice

Yes Margaret, its great to not be the special case person that becomes a downer for a group or other person. Nobody wants to have to hear other's problems unsolicited if it can be avoided. It's really a way to respect others while not compromising your health.

I wouldn't comment on what the "celiac experts" in the room say so long as it doesn't hurt anybody physically. But if asked directly, I would correct them. But why get upset with them? People have their own ideas, and they might be speaking thinking they have all the information. People don't know what they don't know, and if it doesn't hurt anyone that's fine.

CarlaB Enthusiast
One of my best friends just last week was suggesting that I should be doing small amounts of wheat on a regular basis, "you know, like homeopathically".

Margaret

You might use this as an explanation as to why a small amount can bother you. Sometimes I wonder how I can have such a full-blown reaction from such a little bit ... then I think of the homeopathic philosophy and consider that to be a good explanation.

miles2go Contributor

Yes Margaret, its great to not be the special case person that becomes a downer for a group or other person. Nobody wants to have to hear other's problems unsolicited if it can be avoided. It's really a way to respect others while not compromising your health.

I wouldn't comment on what the "celiac experts" in the room say so long as it doesn't hurt anybody physically. But if asked directly, I would correct them. But why get upset with them? People have their own ideas, and they might be speaking thinking they have all the information. People don't know what they don't know, and if it doesn't hurt anyone that's fine.

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

Dan

You might use this as an explanation as to why a small amount can bother you. Sometimes I wonder how I can have such a full-blown reaction from such a little bit ... then I think of the homeopathic philosophy and consider that to be a good explanation.

:) I should probably say first that I am one of those people that can't watch a horror movie without breaking into peals of laughter. I also practice ahimsa (compassion) and so my friend was not really in any danger while I had the (to me, at least) laughable visual of ripping eyeballs out at the same time that I was explaining some of the problems of continued celiac, like colon cancer, Sjogren's, etc. in what I hope was an educational manner.

The thing that really piqued my interest about her comment was that I have tried homeopathic treatments with great success. I don't think that I will be ingesting gluten anytime soon for this particular issue. But, she is also having similar issues with allergies that I have, so I want to try to be supportive.

Dan, I had a conversation with a coworker recently who asked if it was rude for another coworker to be continually offering gluteny goodness to me. My response was basically, hey, I want to hear about all the food, because I am a foodie! If it contains gluten, then I think, well how can I make it gluten-free?

I have found through most of my travels that people are generally well-meaning.

Hope that doesn't sound too Pollyannish. :lol:

CarlaB Enthusiast
I had a conversation with a coworker recently who asked if it was rude for another coworker to be continually offering gluteny goodness to me. My response was basically, hey, I want to hear about all the food, because I am a foodie! If it contains gluten, then I think, well how can I make it gluten-free?

I have found through most of my travels that people are generally well-meaning.

Hope that doesn't sound too Pollyannish. :lol:

It doesn't bother me a bit either. I often ask to smell other people's glutenous goodies, especially my husband's or kids'.

angel-jd1 Community Regular
I have to agree with this. Just last weekend, a relative told me that I could eat a little "gluten treat" now and then and be fine. She has a friend with Celiac, and evidently this is where she gets her information. I, of course, explained why this was not correct, and that her friend was still causing herself internal damage even if she dosen't feel any different. Don't know if it did any good, but at least she listened and really seemed to understand what I was saying.

I LOVE that one...........I have a cousin, her daughters play with 2 little girls who have celiac. At all the birthday parties they just pull the toppings off of the pizza and eat that. My cousin tells me about it frequently and I always tell her that they are causing damage and getting cross contamination blah blah (we know the routine). I tell her that I would never even think of doing that. I would be sick for a couple of weeks. She always says "well they must not have it as severe as you do then"! :lol:

I think next time I'll go into the analogy of being pregnant. You are either preg or not preg. You are either celiac or not celiac. There isn't a middle ground of "they are just a little bit celiac" ha

-Jessica :rolleyes:

miles2go Contributor
It doesn't bother me a bit either. I often ask to smell other people's glutenous goodies, especially my husband's or kids'.

I have to hold my breath if I accidentally walk up the gluten-aisle in the grocery store.

nikki-uk Enthusiast
I think next time I'll go into the analogy of being pregnant. You are either preg or not preg. You are either celiac or not celiac. There isn't a middle ground of "they are just a little bit celiac" ha

LOL :lol: A similar analogy (although nothing to do with coeliac)

My middle son has Downs Syndrome.The amount of people who have said to me

''Oh he's only got it a bit!'' ( <_< er no,he's got it.....)

Gotta laugh!! :lol:

jennyj Collaborator

I was at a dinner recently for the chamber of commerce when the county auditor, who was a guest, looked at my plate and saw I had a mini ear of corn on the cob and a bit of salad. She said "You must be afraid to get spagetti sauce and noodles all over you before going back to work." I told her that was not the reason for not eating spagetti and garlic bread but that I had a gluten intolerance and could not eat them. She asked what that was and I said it is like an allergy. She said oh do you break out in hives? I politely said no. "Well then what do you do?" I said well it effects my gastro---, in which she said "OH that is not the kind of thing I wanted to hear while eating." THEN DO NOT ASK!!! I felt like yelling but I just ate my corn.

tiffjake Enthusiast
I have to agree with this. Just last weekend, a relative told me that I could eat a little "gluten treat" now and then and be fine. She has a friend with Celiac, and evidently this is where she gets her information. I, of course, explained why this was not correct, and that her friend was still causing herself internal damage even if she dosen't feel any different. Don't know if it did any good, but at least she listened and really seemed to understand what I was saying.

My uncle was told years ago that he had Celiac disease, and his doc told him that as long as he didn't feel sick, to eat whatever he wanted to!!!!! And I wonder why my father won't take me seriously about the diet and getting himself tested.....

LOL :lol: A similar analogy (although nothing to do with coeliac)

My middle son has Downs Syndrome.The amount of people who have said to me

''Oh he's only got it a bit!'' ( <_< er no,he's got it.....)

Gotta laugh!! :lol:

Yeah, one doc told me my grandmother, who died wasting away in a hospital bed from Celiac, had "real" celiac, and I didn't, because I am not thin.....?????? So I have fake celiac??

debmidge Rising Star

My husband's sister cannot understand the secondary food intolerances and she thinks that this part is "all in his head" (that he can't digest soy, eggs, spices, and nuts) when his York testing confirmed that he's got intolerance to this stuff. When we used to eat at her place, one of the last times we were there she snuck powdered garlic on the chicken. So we don't accept her invitations anymore and at the same time she stopped giving them. So we are of the same mind. She hates to cook anyway.....

When my husband is asked what his reaction to gluten is, he sometimes just says to them that it's like having a stomach flu (it doesn't encompass the whole gamut but it does give them something to think about).

penguin Community Regular
Yeah, one doc told me my grandmother, who died wasting away in a hospital bed from Celiac, had "real" celiac, and I didn't, because I am not thin.....?????? So I have fake celiac??

Yeah, sorry about that. Considering she's my doctor, too, that definitely annoys me, cause I ain't skinny either.

kabowman Explorer

OK - my rant is my sister (and mother but not as much). She has been sick almost as long as I was and I have talked to her and sent her notes and offered my help. Now, about a year ago she finally gave up casein in addition to lactose, not because I suggested it but because her homeopathic (sp??) doc suggested it. Now, her doc suggested she eliminate gluten too. I found this out from my dad, not her, and he told me that she is eating spelt because it isn't wheat. Dad sent her a link to a Web site explaining that spelt is a type of wheat and should be avoided if you are gluten free so now she won't talk to him.

What I will have to do is send my mom a note about what to avoid for gluten because my sister might listen to her.

Speaking of which, my mom told me less than a month ago, that she is worried about my sister's mortality, and I pointed out that she was never worried about mine, just because I hid it well doesn't mean it wasn't there. I was on the verge of having to quit my job, not able to do my work at home either.

OK, venting done, for now but this stuff with my sister still bugs me.

Nice idea...thanks!

tiffjake Enthusiast
Yeah, sorry about that. Considering she's my doctor, too, that definitely annoys me, cause I ain't skinny either.

Well, I wasn't going to "call her out" but guess all docs can't be perfect for everyone. I am glad she works for you though!

penguin Community Regular
Well, I wasn't going to "call her out" but guess all docs can't be perfect for everyone. I am glad she works for you though!

Yeah, it's wierd how she said it wasn't "real" celiac with you, and you have worse symptoms than me. Yet with me, I get cc'd once and it's a dx. I don't know. Although, I did let her think it was her idea to test me for it. I think she's one of those doctors that don't see a difference between gluten intolerance and celiac, since the result is the same. She kind of confused me in that regard. I don't know, she's a bit wierd, but at least she doesn't rush and throw drugs at you I guess. :rolleyes:

tiffjake Enthusiast
Although, I did let her think it was her idea to test me for it.

I think that was my problem....

floridanative Community Regular

My biggest pet peeve is how people react if I say I don't eat wheat or gluten or something similar - what I say depends on the audience and situation. They look at me like 'you poor thing' or actully say it to my face! They act as if my life is over at a time when I feel better than I have in years. Then I realize that some of them are projecting their own fears onto me. They have issues with food (never knew there were so many emotional eaters out there until now) that they can't imagine ever dealing with. I then feel very blessed that I never let food control my life before having to go gluten free or now. I've met too many people for which the book 'When Food is Love' should be on their must read list.

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):



  • Who's Online (See full list)

    • There are no registered users currently online
  • 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.