Secretiveness

[BFreeman]

Does anyone there have a significant other who doesn't want anyone to know about his or her celiac disease? Do you encourage talking about it or support the desire to keep it quiet?

(I'm not sure what's going to happen at work when the Thanksgiving and Christmas parties start up . . .)

B

[CarlaB]

From your name, I cannot tell if you are the man or woman part of the relationship.

I think it would be impossible for you to go to a party where food is served and not have the host/hostess know your food sensitivities. You would come across as rude and picky if you're a guy, and as having an eating disorder if you're a woman. I don't necessarily advertise my limitations, but I do tell people who should know, which includes pretty much all of my friends.

I think this is an issue you need to talk about with your significant other. If he/she is ashamed of you, that is a huge problem for a long term relationship. If you are newly diagnosed, there still may be a denial issue with him/her that you two should discuss. I would encourage communication. Tell him/her how important it is for you to have his/her support.

[Guest ~jules~]

Its not that I don't want people to know, I just don't want it to become who I am, or a topic for discussion at parties, get togethers etc....I am not one who enjoys the spotlight. Also I am only not even a month diagnosed, and I've already gotten some really strange feelings from people who have found out. So, I personally would rather it didn't come up all the time, but Its not like i'm keeping it a big secret either....

[seattlecdfriend]

Does anyone there have a significant other who doesn't want anyone to know about his or her celiac disease? Do you encourage talking about it or support the desire to keep it quiet?

(I'm not sure what's going to happen at work when the Thanksgiving and Christmas parties start up . . .)

B

My friend does has some extreme reservations about sharing about celiac disease. First, she is a very private person. She will share with some, and maybe I know more than most. She expresses that she doesnt want people to feel uncomfortable around her, that in the past some people (friends) have made insensitive comments and just dont understand. She is also a very comitted vegetarian on top of celiac disease/DH. Her choices can be very limited and most people realy dont want to understand. I respect her wishes and I am learning as much as I can about celiac disease and being gluten-free and to encourage her towards that.

[Nancym]

I think you don't have to really get into the details, just say you're allergic to wheat. People have all kinds of allergies and deal with it without any fuss.

[eKatherine]

I think you don't have to really get into the details, just say you're allergic to wheat. People have all kinds of allergies and deal with it without any fuss.

I don't even go that far. I just say I can't eat it because it makes me sick.

[ArtGirl]

I think you don't have to really get into the details, just say you're allergic to wheat. People have all kinds of allergies and deal with it without any fuss.

I also just say I have food allergies or am allergic to wheat, but thank you anyway. I don't even mention that something will make me sick. No one has presured me, but if they had, I'd have just said that I really can't eat (whatever). Now, if it's a private party, I would inform the hostess/host beforehand so they wouldn't feel offended that I'm not eating anything they fixed.

It doesn't have to be a big deal. If you shrug it off and don't make an issue of it (I mean, it's a big deal to you, but I wouldn't pass on that information to others in a purely social situation) then others will not give it another thought.

I have sat down to a church dinner with people who don't know me, stayed at the table while everyone else went through the line, whipped out my own meal, and when they came back to the table, carried on a conversation with them, and no one asked about why I was eating something different. If you get people talking about themselves, they really don't much notice what you're doing or not doing.

[KayJay]

I am a private person also and don't like a big fuss to be made. I usually just say I am allergic to wheat or "no thanks I already ate, but it looks wonderful" depending on the situation.

I remember going out with my in-laws and they were wanting to go out to eat but I wasn't supposed to because I was pregnant. Doctors orders. Well, I said I can get a salad anywhere so it was up to them to find a place. We walked into one place and they looked at the menu and all walked out. I got so upset because his parents were arguing of where to go and then they finally decided we all walked in and they said I couldn't eat there and walked out. I could have had a salad no problem. We went to another place and by the time we arrived I was in tears. Because they were making such a big deal about it and I felt like I was ruining the day I still remember that like it was yesterday. I never never cry and especially in public but that day I was a wreck

So after that I did become more secretive about this whole deal

[CarlaB]

My concern is not that the person who has celiac is secretive or not, but that the significant other expects secrecy. I would have a talk with my husband and tell him it was his support I needed and that his embarassment over my disease is hurtful. Fortunately, I'm not in that situation.

[ArtGirl]

perhaps it will be better over time.

[skoki-mom]

Personally, I think you need to respect the person's wishes and not discuss it. While having celiac disease isn't a secret, I find it a little annoying when someone "outs" me when there is no food present, there is no discussion of food, and there doesn't need to be a discussion of food. I had occasion to talk to my former SIL prior to my Dx and the first thing she says is "I hear you have celiac disease" (she had been talking to my mother). I was annoyed. Ultimately, I think celiac disease is the most boring thing about me, I'd rather be identified as a mother, a daughter, a sister, a friend, a nurse, or for the other things I like or am good at, not for having a certain deficiency. celiac disease doesn't define me, it's not who or what I am. I don't mind telling people that I have it, I'm not ashamed of it, but really, discussing it gets old after awhile. I think the bigger issue for you is *why* your SO feels that this needs to be kept a secret. For his/her own safety, anyone who is preparing food for you needs to know in order for him/her to be safe. You really can't avoid it coming up at a dinner party or something.

[BFreeman]

"I'd rather be identified as a mother, a daughter, a sister, a friend, a nurse, or for the other things I like or am good at, not for having a certain deficiency. celiac disease doesn't define me, it's not who or what I am."

Thank you for this. It is my husband, not me, who has DH diagnosed a few months ago, and I have not been able to understand why he won't tell his coworkers why he suddenly stopped joining them in pizza. I sort of get it now. I'm still wondering what he's going to do when the annual Thanksgiving and Christmas dinners are scheduled at the restaurants I know aren't safe.

[chrissy]

i think that people who don't want people to know about their celiac disease have every right to decide what they want people to know about them-----but i also think they are missing out on a great opportunity to educate people.

[skoki-mom]

"I'd rather be identified as a mother, a daughter, a sister, a friend, a nurse, or for the other things I like or am good at, not for having a certain deficiency. celiac disease doesn't define me, it's not who or what I am."

Thank you for this. It is my husband, not me, who has DH diagnosed a few months ago, and I have not been able to understand why he won't tell his coworkers why he suddenly stopped joining them in pizza. I sort of get it now. I'm still wondering what he's going to do when the annual Thanksgiving and Christmas dinners are scheduled at the restaurants I know aren't safe.

Well, his dx is fairly recent, and he just may still be dealing with it himself right now, not really ready to talk about it yet. It is strange how food is part of your persona. Maybe it is just too hard for him right now. Personally, I try to avoid the staff room if possible when there is pizza or something in there. My colleagues have the right to enjoy it, but there are times I just feel like sitting there smelling it and not being able to eat it. However, they all know why I'm not eating it and no one makes me feel uncomfortable. But I have always been known as the one who bakes the fancy Christmas cookies, and the one who took gingersnaps on the fishing trip, stuff like that. Well, that part of my identity is still pretty much gone, and I miss her. Sure, I can still bake that stuff, but it's not really very much fun for me anymore. Yes, I can make gluten-free substitutes, but they are not my beloved old recipes. Some of them even taste pretty good, but pretty good is not as amazing as the old stuff used to be. See, having this disease really isn't so much about food, it's mostly about feeling different and having fears about, #1, getting sick, and #2, inconveniencing yourself and everyone else. I'm sure your DH will come around a bit, and I hope he is feeling better.

[bklynceliac]

i have found that people do have a tendency to want to talk about it A LOT when they find out one's illness. It's fine because it's just curiousity and interest, and as said, it's good to educate. But sometimes I don't want to have the same conversation 5 times in one day. I find it's helpful after a few minutes to say "you know I'd love to just relax and get my mind off things, so let's talk about it another time" and that goes over fine.

[Guhlia]

Perhaps the reason your friend doesn't want to talk about it is because of the horrible symptoms that can accompany this disease. Saying "I have Celiac" is sort of the same as saying "I have smelly, fatty, floating diarrhea if I eat the wrong thing" or "If I eat gluten I pass gas that could knock people out in the next county" or "Gluten makes me turn into a psychotic $&*@!". If you really think about it, it has the potential for being embaressing. I personally don't have a problem telling people, but I can see how someone might.

[mamatide]

You know, you talk about being "outed" by others and I already see this in my 5yo. My DH(usband) is always outing her Celiac disease. I think it's quite innocent really but I can see my daughter's face drop when he does it.

I've been meaning to talk to him about that but didn't quite know how to broach the subject... any ideas?

mamatide

[Jestgar]

I think just the way you just said it. "when you mention celiac, little Honey's face looks so unhappy. I don't think she's ready to be "different" just yet.

[All-about-March]

See, having this disease really isn't so much about food, it's mostly about feeling different and having fears about, #1, getting sick, and #2, inconveniencing yourself and everyone else. I'm sure your DH will come around a bit, and I hope he is feeling better.

I agree with this for sure....this is why I keep it under wraps as well. I'm not someone who likes to draw attention to myself esp. to something that may come across as really 'different' to others. Also, like someone else said here, I am still trying to figure out all the ins and outs of this disease and learning to cope with it myself and this plays a part in why I want to keep silent to most people.

However, it is with my significant other that I want to have(and do have) as support. He is the one who shops and reads labels with me, cooks meals with me, listens to my rants and raves etc. He puts up with alot actually!

[MistressIsis]

I usually try to find something I can eat so I don't HAVE to explain but worse is when you're out & the person you're with makes a huge deal out of it to others. I had that happen with someone every time we went anywhere, whether it involved food or not. He almost made it a threatening statement & couldn;t understand why I'd get mad & walk out.

If at a restaurant I tell the server "I'm gonna be your problem customer today" with a big sincre smile , then I order what I want how I need it done an finish with, I have a major food allergy so it needs to be just as I said. That's usually enough info for them, then again, salad with no croutons, bread of any kind & O&V isn;t too hard to screw up.

[tarnalberry]

Nope, not in that situation, and would find it unhealthy. It's not something to be kept secret, as you'll get odd looks by bringing your own food or not eating what's served to you or always avoiding situations involving food. Learning to find a way to phrase it that will work well in front of others and learning to ignore any strange looks (because, more often than not, they're not *bad* looks) are important skills to develop after a celiac diagnosis, unfortunately.