I'm A Celiac For Attention

[IntensePort]

Do any of you have relatives or friends that think your lying, either that you do in fact have celiac or that the allergy is so severe?

Because I was diagnosed so late, some of my friends "accept" that I don't eat gluten or dairy, but they assume I'm making it up.

[mouse]

There are many on here that have family and in-laws that don't believe that this is serious. Some even have spouses that have a problem with the Celiac going gluten free. It is not a nice situation. Be patient and the ones who have your problem will be answering in length. Hopefully they can give you some direction in dealing with this. Good Luck and Welcome to the forum.

[tarnalberry]

Do any of you have relatives or friends that think your lying, either that you do in fact have celiac or that the allergy is so severe?

Because I was diagnosed so late, some of my friends "accept" that I don't eat gluten or dairy, but they assume I'm making it up.

There are many on here who have noted just that, but at the end of the day, as long as they accept it, and don't try to shove gluten down your throat, it doesn't, in the end, matter if they believe you or not, as long as they respect your decision. Actually, kudos for them to respecting your decision when they don't believe you (minus one kudos to them for thinking you're lying, so it's kinda a wash, though. :-P)

[VydorScope]

This baffles me. If I had a friend that said " I can not eat such and such for such and such reason" I would never say "YOUR A STUPID LIAR EAT UP NOW!" THats just shuch an alein concept with me that I still cant understand it.

[Ashley]

My Dad is one of these people (folks divorsed and I live with my Mom) . The fact that I lost nearly 80 pounds and being in a state of malnutrition didn't mean anything to him. This was some silly little disease. I am not sure if he thinks I'm making it up, but, I haven't been to over to his house since God knows when (sad, I know. ) However, everyone on my Mom's side and my friends are VERY supportive. There's going to be an idiot in the crowd. Just ignore and be thankful for the folks you have that DO care.

[Nancym]

Oh yeah, this seems to be a common reaction. Husbands, parents, wives, strangers... all need to be wised up with a clue by 4".

[penguin]

I have only had one friend that reacted that way, and we were actually sitting in a restaurant. She said something to the effect of, "well if you were sick for so long why weren't you always sick? You can't be that sensitive, you would have been sicker" I was really good at hiding being sick. I mean really, why did it always take me so long to pee?

Cut to 10 minutes later when I'm glutened by my supposedly safe hash browns

She got the point.

Irony: Her mom is allergic to wheat (eats it anyway) and her cousin has *the exact same mystery symptoms* that I do, but won't get tested for Celiac I'm rather annoyed with this friend.

[dlp252]

This baffles me. If I had a friend that said " I can not eat such and such for such and such reason" I would never say "YOUR A STUPID LIAR EAT UP NOW!" THats just shuch an alein concept with me that I still cant understand it.

I agree with this and feel the same way... Even if one of my friends or family said "I don't want to eat X because they sky will turn brown", I might think to myself, gee that's silly and probably not possible, but I would respect their desire to not eat X if they don't want to to.

[Jnkmnky]

My husband's entire side of the family thinks... BELIEVES I made up the Celiac disease. My mil also claims I made up the fact that our first child had a stroke at birth... The fact that he was in the NICU for two weeks after birth, on Phenolbarbtal (sp?) for a year for seizures, and received speech, physical, and occupational therapy for three YEARS didn't sway her one bit. Some people are nuts. It's best to eliminate their interaction from your life completely if you can. That's what I've done. She's not allowed to interact with my kids at all. All I can see her doing is sneaking the celiac kid gluten to prove me wrong. I'd have to physically harm her and go to jail.

[floridanative]

My husband's entire side of the family thinks... BELIEVES I made up the Celiac disease. My mil also claims I made up the fact that our first child had a stroke at birth... The fact that he was in the NICU for two weeks after birth, on Phenolbarbtal (sp?) for a year for seizures, and received speech, physical, and occupational therapy for three YEARS didn't sway her one bit. Some people are nuts. It's best to eliminate their interaction from your life completely if you can. That's what I've done. She's not allowed to interact with my kids at all. All I can see her doing is sneaking the celiac kid gluten to prove me wrong. I'd have to physically harm her and go to jail.

Jnkmnky- good for you!

I agree - if someone doesn't respect your disease - for any reason - it's probably best to rid them from your life if possible. Life is too short to be with people that don't care about your needs. I still say a LOT of people want to think Celiac isn't real when they themselves have symptoms that might worry them that they could have it too. Many people would rather endure chemo than give up their beloved gluten. Sad but true and I know more than one of them.

My first trip post dx is next weekend for Easter (really for niece Christening or we would not go) and I'm not concerned about my SIL who we stay with, but my FIL's wife who is staying there too. In 16 years she can't accept the fact that I hate broccoli. This is no joke she tries to serve me broccoli every time I'm at her house. I can't imagine what she'll do when I tell her 500 times that I can't eat something. Should be fun - NOT!

[elonwy]

Some people are morons, bottom line. Everyone's been pretty good about it, no-one's outright accused me of lying, and everyone has seen such a huge change in me that they know even if they don't really "get" celiac disease, whatever I'm doing is working, so cool.

I had one 'friend' talk about celiac for 30 min at a dinner and make the most nonsensical comments about herbology being the answer, but she's an idiot and a friend of a friend so I don't talk to her anyway.

My mom went on for a month or so about it being allergies, but that was a self-denial phase and she's now doing great on the gluten-free diet.

You can't convince them other than living your life the way you need to until they figure it out for themselves that its neccesary, or they stop being in your life. With family its harder, but it shouldn't matter if they think you're making it up or not, it just makes THEM look dumb.

Don't let them give you doubt, whatever you do.

Good luck.

Elonwy

PS: I love Grrr! (Doom, doom doom , doooom)

[marciab]

I'm sure my family thinks I am doing this to maintain my figure. I have always been thin, so they think I have an eating disorder. Truth is my stomach has always been sensitive and I get that full feeling quickly.

Dr. Phil called this leveling the other day. Where people who don't feel so good about themselves try to make you look smaller. It makes sense....

Marcia

[darlindeb25]

I have been gluten-free now for almost 5 yrs and that first year, I had to label food in the fridge. I told the kids, anything that said "mom" on it was ok to eat, but no double dipping and always a new eating utensil(like with butter). My odest son looked at my youngest and said, "Mom is just being stupid, this won't make any difference!" My younger son gave him a good talking too, it was wonderful. Joe would of been 19 at the time and Jeremy was 27.

Last week at work, I have been really stressed lately, so things don't roll off my back like a duck and water, as it normally does. A co-worker, Julian, said something foolish about gluten-free and I looked at him and said, "I hope to God you never have to deal with this disease and believe me, it's not fun being me, I would so much rather be "normal" like you!" I appologized later, I normally am not that short with people, but he got me at the wrong moment.

It's out there and most of us do run into these people, but as a general rule, most people do put in an effort to understand. Deb

[Mo92109]

My boyfriend was skeptical until he saw how much better I feel and especially when sees how I react 10 times worse when I am gluttoned since I have been off it. (What's up with that, by the way!)

I have one "friend" who says her Dr told her her body can't process white breads or white flour and each time I mention that I can't have a sandwich with her she's like "well, I am not supposed to either..." AGH!

She also tell me to choose were we go to eat because I am the one that is picky. PICKY? I'd eat everything given the chance! PICKY?

[ianm]

My ex-wife just didn't and still doesn't get it at all and that is why she is an ex. I had a strained relationship with my family for many years because I was an obese, brain fogged loser. They are quite amazed at how I have transformed over the last two years and are very supportive. I think they actually feel quite bad about that time but not much anyone can do about that except move forward. My girlfriend gets it completely and only eats gluten once in a great while. For the most part people have been quite supportive but I am very selective about who is allowed into my life anymore.

[Guest BERNESES]

My sister always jokes that I made it up for attention. I think it's 99% joke, and 1% strange. I think the friend who "believes" me the least (if that makes any sense) is actually a doctor (dermatologist) who I suspect may have Celiac's herself. Ironic.

[Mango04]

My sister always jokes that I made it up for attention. I think it's 99% joke, and 1% strange. I think the friend who "believes" me the least (if that makes any sense) is actually a doctor (dermatologist) who I suspect may have Celiac's herself. Ironic.

I definitely think there are certain people who don't want to believe us, because if they did, they might have to start believing in their own health problems that they'd rather just ignore. Beyond that, I have no idea why other people care what we're not eating. We're simply not putting a certain substance into our bodies. Whyyyy does anyone care?

Maureen - I have a "friend" who says the exact same thing to me about being picky!

[pinkpei77]

yeah.. people are stupid. my fiances aunt made something for dinner and told me it was fine and right before i took a bite she said ' it only has 4 tablespoons of bisquick in it so you should be fine"

what the hell is wrong with people.

not to mention shes diabetic.. here have this.. it only has 4 tablespoons of sugar in it.

[debmidge]

My husband's sister probably has celiac, but won't get tested nor would ever eat gluten-free. That being said she does understand the believe he has celiac disease, but he also has other sensitivities like garlic. For some reason she has in her mind that now that he is gluten-free and looking and feeling better he should be able to eat food that has garlic in it. When we eat over his mother's house (she lives there too and she's the one doing the cooking actually) she insists on sneaking the garlic into the food and telling him that "it's all in his mind."

I just don't get it.

[Guest Robbin]

My husband's sister probably has celiac, but won't get tested nor would ever eat gluten-free. That being said she does understand the believe he has celiac disease, but he also has other sensitivities like garlic. For some reason she has in her mind that now that he is gluten-free and looking and feeling better he should be able to eat food that has garlic in it. When we eat over his mother's house (she lives there too and she's the one doing the cooking actually) she insists on sneaking the garlic into the food and telling him that "it's all in his mind."

I just don't get it.

Why do people do this?! I have a friend who said to me, "well, you ate gluten for 40-plus years and it didn't kill you, why do you get sick now?" HELLO! It WAS killing me.

Deb, the garlic/sister in law thing reminds me of something I read in Dear Abby many years ago. A kindergarten boy had a peanut allergy and some kind of class party was going on for which some mother brought in p.b cookies. One of the teachers offered him one and he said no, he was allergic and she told him, "Oh, good grief, one cookie won't kill you," and she made him eat it. The little guy died. This was probably 20 years ago and it left such an impression on me. Who is to say what bite of gluten, or what taste of garlic or whatever could be the turning point for a severe, life-threatening reaction? I mean, the very least a few days of brutal illness. The last time I was glutened badly, my throat felt like it was tightening and I felt it before I realized what I had eaten, so it was not an imagined, paniced reaction. I thought the cookies I had just eaten were completely safe till the throat thing happened, so now I am scared "straight" so to speak --reading things closer--but my main point is, why do people think they know so much more than we do about our own health? I sometimes think some of us get the label of hypochondriac and a certain personality-type is hell-bent on proving it to the world. Like trying to expose fraud or something It is just beyond me. I think, also, as some have said-their own guilt for not caring for their personal health. It pees them off to see someone with discipline. Kind of like a girl I used to know who hated anyone better looking than her. (I guess I was uglier )

[debmidge]

I feel that there is sort of a meanness behind it when a person tries to "prove" that you don't have a health issue. Almost like they know better and they are going to stealthily prove it to you.

Now garlic won't "kill" my husband like the peanut story but it'll certainly give him gastro problems for about a week. It'll irritate his ulcer, gastritis, esophogitis, and hiatial hernia - but she doesn't believe he has them either. Her response: everyone has some of those things and and still can eat FILL IN THE BLANK.

I am very tempted to ask her what medical school did she get her degree from?

[key]

I have been doing this a year and I believe it does get better. THe fact that they have gluten free menu's at PF CHang's and Outback steakhouse tell you there are ALOT of people with this disease. I think as our family and friends become aware of this and start seeing gluten free on everything they become a bit more supportive. THis seems to have been the case with me. My mom is supportive now, but she still doesn't see how it can make my bones ache or why I am depressed after getting gluten. My husband on the other hand that lives with me, is as terrified of me getting gluten, as I am! He has seen the direct affects of it. Plus he doesn't have to put up with the way I smelled before! Ha!! Ha!

Just ignore them and try and explain as much as they want to hear. Also I have found that telling them your symptoms weren't always severe until something triggered them to start. I had symptoms before, but not severe GI symptoms such as D.

Hang in there, it will get better.

Monica

[lonewolf]

My BIL is a pharmaceutical buyer for a large HMO, so he KNOWS that drugs are the best way to treat anything. He has argued with me and says that it's ridiculous to have to be that careful with any food. Last time we ate at his house (he does most of the cooking) he swore up and down that the meat patties he was making just had "ground turkey, onions, garlic, salt and pepper". I ate one and before I got up from the table had a horrible stomach ache and ended up with D for 3 days. My SIL later told me that you can't make that recipe without bread crumbs and she knows he put them in. This is the same BIL that argued with me about changing my diet to treat my horrible psoriatic arthritis. He insisted that without the medication I'd still be doing damage to my joints, that feeling better was just in my head. Ten years, 13 triathlons and 4 years of coaching basketball later he just treats me like I'm a hypochondriac, so I avoid him most of the time. And I will NEVER eat a bite of food at their house again.

[luvs2eat]

So who on earth would dream up this lovely disease rather than enjoying all the stuff we can no longer eat?? Not me!!

[Guest BERNESES]

My BIL is a pharmaceutical buyer for a large HMO, so he KNOWS that drugs are the best way to treat anything. He has argued with me and says that it's ridiculous to have to be that careful with any food. Last time we ate at his house (he does most of the cooking) he swore up and down that the meat patties he was making just had "ground turkey, onions, garlic, salt and pepper". I ate one and before I got up from the table had a horrible stomach ache and ended up with D for 3 days. My SIL later told me that you can't make that recipe without bread crumbs and she knows he put them in. This is the same BIL that argued with me about changing my diet to treat my horrible psoriatic arthritis. He insisted that without the medication I'd still be doing damage to my joints, that feeling better was just in my head. Ten years, 13 triathlons and 4 years of coaching basketball later he just treats me like I'm a hypochondriac, so I avoid him most of the time. And I will NEVER eat a bite of food at their house again.

That is ABSOLUTELY obscene! My MIL was telling me that her next-door neighbor who has Celiac's (she's in her 40's) is really having trouble with her friends who keep saying, "A little bit of wheat in something won't kill you." Her response has been, "Right. And a little bit of arsenic won't kill you either." I like that one.