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 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.

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)

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.

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.

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

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.

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.

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!

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)

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

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

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?

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.

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!

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.

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 )

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?

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

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.

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

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.

A lot of my family still wont believe how sensative I am to gluten, and still dont even believe I have Celiac, even tho both have been true for over 3 years already. They tend to rub it in my face, and offer me food they know I cant touch, or give me a huge lecture about something.

Wish we could all convince the whole world it exists and is real and we arent lying when we have it!

~lisa~

I'm lucky that my family believes me (it took a few weeks for my dad to believe-at first he thought that I just didn't want to eat). Initially, only my mom understood how serious it was, but after a severe reaction to gluten in toothpaste at my dentist's office, they all understood!

My friends are a whole different story. They are convinced that I have an eating disorder(s). Right after I was diagnosed, my friends invited me to a small get together that they were having. I went, but since it was a last minute thing, I didn't have time to grab some of my gluten-free food. When I declined all of the food at my friend's house, they all started telling me that I just use vegetarianism and celiac as an excuse to not eat. Yea right! I was like, don't you guys remember how sick I was before and how I was eating all the time and loosing weight? They had no answer. A few friends were even with me after my first glutening after going gluten-free, and they actually had the nerve to tell me that I was faking the pains and nausea, so that so that I could vomit all of the food that I had just eaten, and no one would suspect that I had an eating disorder. So, according to my friends, I am both anorexic and bulimic! Some people are just crazy! I'd hate to see this ruin relationships, but they are just driving me crazy (everytime I have seen my friends recently, they have brought it up). I'm not giving up on it yet; I think that they just need time to come around. It's so frusterating when people don't believe you!

Danielle

I have friends, family and co-workers who think that I am a whimp. I have had "mysterious" symptoms for years. Lots of pain, lots of sick days. My friends laugh and say "oh, do you have another ailment?". Makes me mad as H---. My boss has muscular dystrophy and uses a wheelchair and is tough as nails. She does struggle every day, but it doesn't mean that I don't struggle too. So, now, I do not say a word to them about how crappy I feel. It's not worth the frustration. Tara

Well, I'm happy to know that I'm not the only one. It doesn't get to me as much as it used to, as I'm getting more and more used to eating gluten-free.

Why the heck didn't your SIL tell you about the bread crumbs!? She's just as bad.

She's the "other" sister-in-law, not married to that BIL, and she was at work and missed the party. The SIL who's married to that BIL (this is all hubby's family) is dingy enough that she believed him when he told me he didn't put in the crumbs.

Okay then, I'll forgive her. THIS time.

I think it's really rediculous how people think you made it up or something. Like you want to have to go through all of that pain if you get glutened. I mean you wouldn't give a person with diabetes a big pound of sugar and tell them "It won't kill you." It's rediculous with some people. Gah I'm sry but ignorant people just make me really mad.

I have a mixed reaction..Luckily for me my dad has celiac's (was diagnosed 7 years ago) so when i tested positive in may my parents and my siblings already knew what to expect.
My boyfriend who I started dating at the end of July has stomach problems as well so he can understand some of what I go through. In fact, I am home for break from school this week and got to see my boyfriend for the first time in 2 months so he planned a romantic day. He researched restaurants that had enough gluten free stuff on their menu (we went to outback) then bought mouthwash to rinse out his mouth so i wouldnt get sick from what he ate. So he is INCREDIBLY understanding.
Some of my friends at school support it, others think i have an eating disorder, and some think I exaggerate my disease and make it too big of a deal...

Its so funny that this thread was pinned today, b/c I recently found out that a (now ex-) friend has been talking about me behind my back and saying that I "diagnosed myself" and "googeled" everything and "made it all up with no proof" and I just can't believe it!

Yes, after my A L C A T, EnteroLab, Celiac Panel, googeling, and arguing with my doc, I was diagnosed. Yes, I looked things up online. If I had not, I WOULD HAVE NEVER KNOWN WHAT TO TALK TO MY DOC ABOUT! Obviously they don't know everything (docs) or I would have been diagnosed many, many years ago.

Anyway, I no longer talk to her. Anyone who thinks I would volunteer to eat gluten-free just for kicks is down right nuts, and can bite me. No one needs friends like that.

Is there ANYONE besides myself and maby three other people that are under than 20? When I was like 12(this was like 2-3 years ago), I found out I was Celiac, not officially diagnosed, but I knew I was anyway, my brother, who IS a celiac, was telling all of his friends that I was only pretending to be Celiac for attention, When in my opinion was the worst part of being Celiac, and some of his friends had younger siblings who were my friends, so eventually one of my friends came up to me and asked me if it was true, I was really ticked off then but now I'm Happy that she asked me becuz I wuld much rather have that then her always wondering if i was an attention freak. I was diagnosed Just a little bit later. But, ya, life's just fine and DANDY!!!

I would have faked such big cramps, that I would have thrown over the table with the food and then puke all over it. I'm sorry, but I hate people like that .

I had one good friend being suspicious. She never told me to my face, that she thought I was lying, but her strange reaction gave me the feeling, that she thought, I was lying. I killed her with friendliness and invited her to a dinner at Outback Steakhouse. When we entered I emphasized the importance that I needed a glutenfree menu. Later on I asked the server, if she knew what I was talking about. She said 'yes, I would need the glutenfree menu, because I can't have gluten, because of several reasons. I'm either allergic to wheat or I'm a celiac.' When my friend heard that, she turned from pale to yellow to green to blue. No comment or stupid looks from her anymore, ever. Problem solved!

How sad is it that your friend had to hear this from some random wait-person at a restaurant that she had no knowledge of before she believed it?!?!?!

ctually,now that I think about it,I seriously have no clue of what ur all talking about... The real reason II don'teat gluten is well... Iguess just for kicks.....
Ps, my other comment was by ma friend....

well, my mom and I both have are celiacs, and some of my "friends" dont believe me b/c they dont understand...but a lot of my family members are hicks, and dont really understand it either...and I am having a really hard time w/ peer pressure...just the other day I went to a friends house, and she made a cake...and it was so tempting...I had two pieces and was sick for a week......but yeah...a lot of my family members think that it is all made up...