Early Learnings and Advice for New Celiac Patients

[Kimbalou 17]

Almost every time I tell someone I have Celiac, they respond with "Oh, I think I have that too!. I have the same symptoms as you!" In my previous post I mentioned my coworkers eating all those cupcakes and cookies. A friend/co-worker of mine keeps telling me she thinks she has Celiac, so I keep encouraging her to get tested for it if she really thinks she might have it. She had no problem wolfing down a cookie at our meeting, so later I told her she must not think she has it. Then she started talking about how she thinks she might be a hypochondriac, etc etc. and that she doesn't take it seriously (meaning: thinking she has it) At first I thought she meant she doesn't take the disease seriously....so I had to ask her what she meant.

Anyway, do you hear this type of stuff from people? I've had at least 5 people tell me over and over they think they have it after I tell them I have it. It's almost like I want somebody else at work to find out they DO have it so they would know how I feel!

Ok, I know I sound angry now. But this is the only place I can vent where people will understand. Sometimes I get really pissed off that I have this disease!!

thanks for listening!!

[Kimbalou 17]

I guess my question is also: how do you handle people like this who keep talking about possibly having it but they don't do anything about it? I just get really tired of talking to people like this. I think I need to just ignore them.

[mommida 161]

I think I need to ignore people too!

[bridgetm 28]

We should start a little utopic-type community where 'food' means real food, from the earth rather than lab-concocted. No crops either of course.

[Kimbalou 17]

We should start a little utopic-type community where 'food' means real food, from the earth rather than lab-concocted. No crops either of course.

um, ok.

[Asianmom 4]

I think people do not understand the underlying issues with Celiac. It isn't just an "allergy" to wheat. The lining of your intestine gets ripped out! The risk of stomach cancer increases....do people realize how serious this is? Ok...sorry just venting. I never have people say they have it too.....although I think many more people have it then they know! It is hard to ignore people at work who are constantly saying this. You could bring up the seriousness of it, or how much better they would feel if they would just try the diet...or heck IDK, just tell them to quit talking about having it unless they want to DO something about it...ok probably wouldn't go over well. teehee!

Vent on here as much as you like! I just get tired of people just saying it's no big deal for me...and then planning meals at restaurants where I have nothing to eat....or just try this...when I can't. It gets frustrating to me because I think people think it is just this allergy that happens and if it does big deal...don't eat it again! THANKS for letting me vent too!

[Kimbalou 17]

I think people do not understand the underlying issues with Celiac. It isn't just an "allergy" to wheat. The lining of your intestine gets ripped out! The risk of stomach cancer increases....do people realize how serious this is? Ok...sorry just venting. I never have people say they have it too.....although I think many more people have it then they know! It is hard to ignore people at work who are constantly saying this. You could bring up the seriousness of it, or how much better they would feel if they would just try the diet...or heck IDK, just tell them to quit talking about having it unless they want to DO something about it...ok probably wouldn't go over well. teehee!

Vent on here as much as you like! I just get tired of people just saying it's no big deal for me...and then planning meals at restaurants where I have nothing to eat....or just try this...when I can't. It gets frustrating to me because I think people think it is just this allergy that happens and if it does big deal...don't eat it again! THANKS for letting me vent too!

Thank you! You know how I feel! I don't think people really do get it. It isn't just an allergy, you are right! I have many other symptoms that go along with this disease..previous miscarriages possibly due to Celiac, carpal tunnel syndrome, tingling feet, foggy head, headaches, joint aches, etc etc!! I think these people are just trying to get attention or something. They are saying they need Immodium a lot, a lot of diarrhea, etc but they don't get tested. Maybe they are afraid to find out they might have it. It's just so annoying after hearing about it 20 times

[cdog7 3]

Weird. Once in a blue moon someone will tell me they wonder about some nagging symptom, but they're obviously not too bothered or they'd have done it already. Usually I just acknowledge that yeah, sure, maybe that's a gluten thing

[shopgirl 67]

Maybe I'm in the minority but only people who are close to me and medical professionals know I'm Celiac. I didn't tell my co-workers because they don't need to know and I'm not particularly worried about someone sneaking up behind me and stuffing a slice of bread in my mouth.

If you don't like dealing with the strange comments and questions from acquaintances, maybe try closing the circle of people with whom you discuss this?

[mushroom 1,209]

I might say, "Oh, I'm so sorry. You really should do something about that right away. This is a serious problem. We don't want to lose you." Just suggestin'

[Takala 415]

If they want to keep making themselves sick because they won't stop eating garbage, that's their problem!

You are being pro active about your health, while they are admitting that they have a bit of a problem.

I mean, really, what is it with all the cupcakes piled up with 500 more calories of gooey sweet icing on top, littered all over the American landscape like plaque bombs ?

[bridgetm 28]

um, ok.

Then again we have this forum where we don't have to deal with the "Oh you're so dramatic... Just one bite" comments. You just can't get true understanding from anyone who does not have to deal gluten intolerance or Celiac themselves.

[bridgetm 28]

Maybe I'm in the minority but only people who are close to me and medical professionals know I'm Celiac. I didn't tell my co-workers because they don't need to know and I'm not particularly worried about someone sneaking up behind me and stuffing a slice of bread in my mouth.

If you don't like dealing with the strange comments and questions from acquaintances, maybe try closing the circle of people with whom you discuss this?

I don't give much information either. When people come into the lounge and see me cooking some variation on a rice dish every day I always get questions, but unless it's someone who I can tell genuinely cares I limit my answer to "oh it's quick and easy" or "Rice for me is like your Ramen or Easy Mac". If I'm offered food I can't have I turn down the offer saying that I have my own snack.

[Roda 186]

I get the "Oh, I'm sorry" response. I just politely tell them that I'm not sorry that I am eating healthier and feeling good! (as they are scarfing down fast food all the time)

[ElseB 48]

I have a co-worker who seems to think that "Celiac" is an umbrella term for all food allergies, sensitivies, intolerances, etc. He's lactose intolerant, but then talks about how his family doesn't understand about celiac...but I know he's not celiac because he eats gluten all the time!

My other petpeeve is people who equate the troubles of finding gluten free food with being vegetarian. I was talking to a colleague about how we keep our house gluten free to avoid any possible cross contamination. He starts talking about how he can sympathize because when he and his wife first moved in together she was vegetarian and he wasn't. Sorry, soooooo not the same thing!!!!!

[mariefnp 1]

Just to say, I haven't been tested for celiac, but have a HUGE amount of symptoms... but I do have RA (rheumatoid arthritis) and when I tell people that, they say ..."oh I have that in my finger"...um yeah right, like WTH??? I have widespread joint pain, have to take terrible meds to control it and STILL have pain, they just don't understand the flippin' disease. RA does NOT equal osteoarthritis....*sigh* sorry, I know it's a celiac site....(I'm having my labs done tomorrow) but celiac is a life long chronic illness, and so is RA and I KNOW what you mean!!!!!

[boysmom 3]

I guess my question is also: how do you handle people like this who keep talking about possibly having it but they don't do anything about it? I just get really tired of talking to people like this. I think I need to just ignore them.

I just feel sorry for them for choosing A FOOD over good health. If they genuinely have celiac disease or have reason to suspect it, and choose not to seek diagnosis or change their diet, it's really not much different than the alcoholic or drug addict saying they might have a 'little problem' and then not taking action to correct it. I know relearning how to eat is huge, I've done it, but it's been worth every bit of it when I can get up in the morning without pain, keep up with my children all day, and still have two brain cells left to spend some time with my husband at the end of the day!

[ravenwoodglass 1,346]

Just to say, I haven't been tested for celiac, but have a HUGE amount of symptoms... but I do have RA (rheumatoid arthritis) and when I tell people that, they say ..."oh I have that in my finger"...um yeah right, like WTH??? I have widespread joint pain, have to take terrible meds to control it and STILL have pain, they just don't understand the flippin' disease. RA does NOT equal osteoarthritis....*sigh* sorry, I know it's a celiac site....(I'm having my labs done tomorrow) but celiac is a life long chronic illness, and so is RA and I KNOW what you mean!!!!!

Just a quick off topic note, after your done with your tests go gluten free for a while and see if it helps no matter what the results. I have had my arthritis in remission now for 8 years and while my joints still look gnarly they work and my pain, which all the meds never helped, is now totally gone...unless I get glutened.

[zus888 37]

I'm annoyed with this, too.

My friend just told me that she ran into someone else who said that they have celiac. Apparently, her whole family has it, and they are "careful" with gluten. She claimed to be gluten-free and "cheats." It's apparently not big deal. My friend told her how I was just diagnosed and how I'm planning to "disinfect" (not my words) the whole kitchen. And this girl said that you don't have to do that. She was so unconcerned about it. And, you know, I don't care what she decides to do with her body or her diagnosis, but it bothers me that she's spreading this nonsense around to other people, continuing to spread misinformation around. My friend came to me with questions about it, and I'm glad she was willing to ask me and inform herself instead of believing the tripe coming out of this other girl's mouth. It pisses me off that the efforts I will be putting forth for my own health can be completely invalidated by people like that spreading BS about celiac. I'm guessing that she doesn't have any ill effects from consuming wheat because she isn't really a celiac or that she's not really on the diet in the first place. I have yet to come across a celiac who hasn't gotten sick on accidental wheat ingestion after going on GFD. (not that I know that many...)

[Kimbalou 17]

Maybe I'm in the minority but only people who are close to me and medical professionals know I'm Celiac. I didn't tell my co-workers because they don't need to know and I'm not particularly worried about someone sneaking up behind me and stuffing a slice of bread in my mouth.

If you don't like dealing with the strange comments and questions from acquaintances, maybe try closing the circle of people with whom you discuss this?

Thanks for the advice. I work with medical people, so maybe that's why we talk about it a little too much. I also tend to talk too much in general, so maybe it's time to stop.

[Kimbalou 17]

I don't give much information either. When people come into the lounge and see me cooking some variation on a rice dish every day I always get questions, but unless it's someone who I can tell genuinely cares I limit my answer to "oh it's quick and easy" or "Rice for me is like your Ramen or Easy Mac". If I'm offered food I can't have I turn down the offer saying that I have my own snack.

I like those responses. I hate it when people look at what I'm eating. Sometimes I just bring baked potatoes and salad to work. And I think I should bring my own treats with my once in a while. It's not like I need cupcakes anyway.

[Kimbalou 17]

I just feel sorry for them for choosing A FOOD over good health. If they genuinely have celiac disease or have reason to suspect it, and choose not to seek diagnosis or change their diet, it's really not much different than the alcoholic or drug addict saying they might have a 'little problem' and then not taking action to correct it. I know relearning how to eat is huge, I've done it, but it's been worth every bit of it when I can get up in the morning without pain, keep up with my children all day, and still have two brain cells left to spend some time with my husband at the end of the day!

I agree! I've told this person to just try the gluten-free diet and see how she feels, and she won't do it. So I guess food is more important. Sometimes I think people are just trying to get attention.

[Financialman 10]

One of the things that you don't want to do when you have Celiacs Disease is get yourself upset by worrying about what other people think or say. Who cares! We have enough concerns in keeping from getting sick from cooking from hyopchondriacs and others who don't get it. Your "real" friends and hopefully your family will understand and that's all that matters. So take a deep breath, lighten up, and think about something funny...like this person still eats all this gluten crap and I don't so I have the last laugh.

What most of us forget, including me, is that Celiac Disease in many cases, like mine, causes or accompanies another autoimmune disease. Getting upset over "ignorant" people just makes it worse for us. So who wins in that situation? The ignorant gluten glutten or you? Make it you that wins .

[SaraKat 16]

I haven't really encountered that, but to my surprise I have met a lot of people that thought they had it and were tested for it and it was negative. I've also met a lot of people that personally know someone with it. When I first was dx'd I didn't really know what it was or had really ever herad of it. I just knew it was some stomach thing. LOL

Yeah, I don't get why if people think they might have wouldn't get tested.

[ravenwoodglass 1,346]

I haven't really encountered that, but to my surprise I have met a lot of people that thought they had it and were tested for it and it was negative.

I hope you told those folks about the high rate of false negatives and encouraged them to try the diet anyway. They may not choose to do so but I sure do wish someone, somewhere had clued me in when they first started testing me. No doctor in all the years they kept testing me ever said a word about the high rate of false negatives. Their doctors likely didn't either.