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floridanative

Why Don't People 'get It'?

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gfp - I agree with you but in fairness I was talking about my own mother being an emotional eater, not accusing friend of doing the same and I honestly don't know if she even knows she eats for all the wrong reasons or not. So she may take offense or not. All I know is that I've bit my lip and ignored hurtful things for too long and I guess I'm just over it now. I'm not as sad as I thought I would be since I don't have to continue ignoring her behaviour anymore. I actually feel relief but the sadness will come later. Thank you for reading!

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The latest things that have happened are:

friend went to health food store that had tons of gluten-free products which she noticed but didn't mention to me or ask if I knew about the store. When I mentioned the store to her and how it's so great, then she said she'd recently been in there and noticed all the gluten free tags. I have another friend that is NOT a close friend who e-mails me about every article she sees on Celiac and told me about a new store near her that carries gluten-free food. Another friend tells me about any place she finds out about that can accomodate a gluten free diner. Another friend offers to ship me gluten free products from CA.

friend invites me to a dinner party and said she'd like me to come even though I have my 'dining restrictions'. She did not proceed to ask what I could eat (if anything) from the menu which she already has planned. Luckily I can't attend as I'll be out of town but I told her I didn't see a lot of dinner parties in my future unless I was throwing them but I'd love to come to one of her cocktail parties. She sent an e-mail reply that in the future if I was in town, maybe we could show up late, after everyone ate dinner and enjoy drinks and even bring a gluten-free dessert to share..........the reply I expected would be something like 'I understand'.

outside of the "it takes time to grieve" and her own personal issues that are thrown into the mix, it sounds like people *are* trying to be very supportive, but in ways that you aren't happy with. those all sound like very well meant ways, and for someone people, might be *very* well recieved. for others, not so much. and that's fine. but those really do sound like genuine attempts at support.

as for the dinner party, I usually don't expect to go into the menu things right away, and would be quite hurt if people stopped inviting me to dinner parties. (which I think has happened a bit because of the diet issues, and it does hurt my feelings.) what a fast way to be ostracized from your friends!

it can be tough to deal with the supportive stuff. we may expect support one way, but people offer it another, and it seems anything but supportive. their intentions are still good, though. (I usually try to let those ones "roll off my back", as it were. :-) especially the "oh, I found this great gluten free thing, here, you should try it" and I find it has dairy - which I can't have. :-/)

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gfp - I agree with you but in fairness I was talking about my own mother being an emotional eater, not accusing friend of doing the same and I honestly don't know if she even knows she eats for all the wrong reasons or not. So she may take offense or not. All I know is that I've bit my lip and ignored hurtful things for too long and I guess I'm just over it now. I'm not as sad as I thought I would be since I don't have to continue ignoring her behaviour anymore. I actually feel relief but the sadness will come later. Thank you for reading!

I know that but if she wants to take it the wrong way she will. I'm not saying you were wrong, I'm just trying to put it in a different perspective that you can't see from because you are in the middle.

Other than that I think tarnalberry is also correct in that people are trying, they just don't know what to do.

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yes gfp - of course you are right.

Tarnalberry - you make some very good and valid points. But other friends invite me to parties and ask what gluten free ricipe website they can go to so they can have things for me to eat. And none of them consider themselves a gourmet cook like the friend I'm writing about. I know it doesn't matter now but the incidents listed above are all about the same person and I have 30 other things I could add. Even though another friend told me that I made the friend in question feel guilty about her eating habits by attacking my new lifestyle head on and doing so well, I guess I was in denial that was the case. Of course it makes perfect sense. Also, I don't think I can have a friend that really won't allow me to say gluten or Celiac in her presence. It was made perfectly clear she didn't care to discuss or hear anything about my new life challenges the first time I saw her post dx. I tried to let that go too but now I see that I can't accept that behaviour in a 'friend' and I also can't change someone to fit my new lifestyle. The reality is that even though I'd like to blame her for making me feel bad the truth is that I can't accept that she chooses to be so unhealthy. I'm not proud of this, just being honest. As I don't see that changing anytime soon (or ever) I need to accept that there's nothing left to say. So in effect, her actions, well intentioned as they may be, made it easier for me to let go of something that is not good for me anymore. I've probably been in denial most of this time that things were going from bad to worse. When she needed me I was there for her - the only friend to walk with her every week per doctors orders. I was rewarded for that by being the only person she never told she was dx'd with diabetes. That was the start of the unraveling of the relationship and I've been in denial ever since.

Thanks as always, for helping me put things into perspective.

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I was rewarded for that by being the only person she never told she was dx'd with diabetes.

I think that just confirms your suspicions.

The reason is probably because you were the one went to the Dr's with her and she is embarassed but the way she is dealing with it is obviously deeply inapproapriate.

You presently represent sucess in everything she has failed at.

It is very sad that she can't accept this and I can understand why you can't accept watching her kill herself slowly.

I have a friend doing this though his poision of choice is alcohol and there comes a time when you can't bear to stand by and condone it and you daren't mention it.

I have to admit I had a second friend who I cut off for similar reasons, she was grossly obese (problems walking 50' but a whole hoast of other serious medical problems caused or exagerated by her weight and eating) and I couldn't condone it or say anything ... then 3-4 years later she is awarded a slimmer of the year award and is running marathons and dropped to less than half her former weight.

However in her case she was never nasty to me, I just couldn't cope watching her kill herself and moving away meant we dropped out of touch. She did come to visit and the entire visit was ruined by her being unable to actually go out.

You have to think of yourself first here. She sounds a very destructive person to be around.

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I hadn't realized all of those examples were from the same person. It still sounds like she's trying, but just from a very broken place. My condolences to her.

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I know what you are saying!!!I was just diagnosed about 1 month ago.Blood tests were pos. and the diet has made a difference already(Stilll not 100%).My friends think that I am out of my mind....which does not really bother me.What really hurts is my wife(of 1 year)does not really beleive in Celiac disease.She says that she knows it makes me sick but that there is no way something can cross cont.......and that I am trying to make everything about me.Before I got sick we went out all of the time so I do feel bad for flipping her world upside down...but it's not like I want to tell the world How much I can crap!Anyway I was happy to see your post and the replys!I think this site is going to be a real help!

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gfp - she is destructive but mostly to herself. When I ate gluten, I ignored what she was doing and now I can't. I'd love it if she lost half her weight and won an award like your friend - that is terrific!

Tarnalberry - yes as I rambled on I didn't explain it's just the one person that is the issue. As a matter of fact, if others in my life didn't bend over backwards to be suportive of me (just as I do for them), this one person would surely not stand out as being just the opposite. My heart does go out to her too but if the doctor didn't scare her into taking charge of her health, I know I certainly can't.

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I know what you are saying!!!I was just diagnosed about 1 month ago.Blood tests were pos. and the diet has made a difference already(Stilll not 100%).My friends think that I am out of my mind....which does not really bother me.What really hurts is my wife(of 1 year)does not really beleive in Celiac disease.She says that she knows it makes me sick but that there is no way something can cross cont.......and that I am trying to make everything about me.Before I got sick we went out all of the time so I do feel bad for flipping her world upside down...but it's not like I want to tell the world How much I can crap!Anyway I was happy to see your post and the replys!I think this site is going to be a real help!

Zell - welcome to the board. This site has saved my life literally. If it were not for helpful people on here I would still be eating gluten today, never having pushed for the biopsy. Regarding your wife, I totally understand. When I read about that I thought it sounded 'pretty out there' but then it happened to me. That proved the cc issue is real to my dh and he never questioned it since. He has been my rock throughout this whole thing and I know I would not be where I am today without his unwavering support. Talk to your wife and come up with some ideas like she can go out to eat with girlfriends without you if she needs to. My dh won't buy reg. cookies anymore so sometimes I'll pick up some Enteman's as a surprise for him. I think the spouse of someone with Celiac has to be super supportive and understanding or else there is going to be tension that only adds to the stress of dealing with Celiac. The lifestyle/diet is really overwhelming at first - to both partners. Try and give your wife some room to figure out her new role in your life. It is not easy, or I don't think it would be for me anyway.

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I know what you are saying!!!I was just diagnosed about 1 month ago.Blood tests were pos. and the diet has made a difference already(Stilll not 100%).My friends think that I am out of my mind....which does not really bother me.What really hurts is my wife(of 1 year)does not really beleive in Celiac disease.She says that she knows it makes me sick but that there is no way something can cross cont.......and that I am trying to make everything about me.Before I got sick we went out all of the time so I do feel bad for flipping her world upside down...but it's not like I want to tell the world How much I can crap!Anyway I was happy to see your post and the replys!I think this site is going to be a real help!

I can sympathize with that, Zell... my husband does believe in Celiac, but he's just not a meticulous person by nature, & still can't understand why I get so upset when he gets gluten into my food...

We've been married over 28 years, & this diagnosis is a big adjustment for him. He actually runs a restaurant & has lots of knowledge about proper kitchen hygiene, but once he crosses our threshold he doesn't want to have to think about that stuff anymore. I do 95% of the cooking at home (always have), which is good, because I just wouldn't trust him! I hate to say it but it's true.

Leah

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I've only had time to scan through this thread, but I agree that sometimes friends and family may be trying their best to be supportive but their own self-destructive issues get in the way sometimes.

I've really noticed that my celiac has become kind of a lightening rod for some of my friends' own anxieties about their health and behavior -- in some cases it has to do with their issues with food; in others, it has to do with their issues with body image.

I started to realize that I needed to more carefully evaluate what kinds of people I was inviting into my life and how much I could trust them. Not that I'm going to drop a bunch of people because I'm somehow morally judging their comments and behavior -- just that I'm more aware of the way in which friends can tear each other down sometimes out of their own insecurities. I've got plenty of friends who might not have reacted entirely well to everything all the time, but -- in the long run -- they've all been incredibly supportive in the best ways they know. I've developed a lot more appreciation and patience for the people who really care about me and stick by me.

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I think most of us are just on one side of this. We know what CC can do, how it feels to be glutened, how exciting it is to find something new to eat etc., but I have an inkling of what it's like to be on the other side.

I'm not sure if I should hang my head in shame here, or if my behaviour redeemed me, so I'll just tell the story.

Several years ago my brother decided (deliberate use of word reflecting opinion at that time) he was allergic to milk. He became very paranoid looking for milk products in everything he ate and even began restricting things that *might* have milk in them. (Sounding familiar?)

I just couldn't believe that anyone could be so reactive to something. I really didn't know what his actual problem could be, so I just did what he asked. I spent a lot of time talking to my mom about this because she was having a hard time believing it as well.

I think only my education in inflammation "saved" my brother from us treating him the way many people on this forum have been treated. I told my mom that no matter what the deal was, constant inflammation is bad, and if eating this way kept him from having an inflammed intestinal tract, then we should do it. I read every label before buying something and made sure he had the opportunity to read it too. It wasn't until he starting piecing out multiple food allergies that I really believed it was a food thing and not a psychological thing.

And I owe him heaps of thank yous for training the family to accept food issues. I'm pretty sure if he hadn't conditioned us all, the first time I mentioned this gluten thing I would have been patted on the head with that humoring look that says "you're a nut case, but I love you anyway".

So anyway. I'm a lot more tolerant when people don't get it...

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Yes, I should add that my father has had Type I diabetes since he was three -- he's now 71 and otherwise in perfect health with none of the complications one would expect to crop up for a lifelong diabetic.

When we were growing up, I completely chafed at having to adhere to his strict meal schedule and the fact that I always felt he was overly critical of my own independent eating choices. However, those habits, that schedule and my stepmother's skills at cooking from scratch taught me a lot that was valuable to me even before the celiac diagnosis -- and, now, I can't imagine eating with any less consciousness and discipline.

eleep

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This is a great thread, people! I've been gluten free for one week now. I have been ready to throw in the towel 6 or 7 times...a day!!! Thankfully, my husband is super supportive. In fact, he's remembering to read labels sometimes when I forget.

I did mention my concern about what happens if my tests come back negative (blood drawn last Friday, doc says she'll order endoscopy if blood work inconclusive) and he said, "It doesn't matter. You'll still be gluten free."

I honestly thought he would do a cheer and say we could forget the wacky diet stuff. I was surprised and heartened by his response. Because it might be too easy to forget being gluten free without a diagnosis unless I feel amazingly better!

Others that I tell all have the same response, "Oh, when you get this under control you'll be able to eat bread again. You just need to heal." They get that look of disbelief when I say gluten is gone forever.

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Zell, please let your wife know she can send me an Email through this message board system and I'll be glad to answer any questions she has as regards being the wife to a celiac person. It turned my life upside down too and I & husband had to find a new way to cope with the challenges and issues and limitations.

Several years ago, before celiac of my husband, if a person told me that they couldn't eat gluten I too would have thought they had a screw loose and was in need of attention and that was why the person was eating strangely. Yes, I would have been guilty of dis-belief; but I've seen the light! Now I am fiercely protective of anything and anyone celiac and I try to pass the word onto unbelievers about celiac. I only wish I can do more.

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For those of you who had to move on from friends that do not fit into your new gluten free life anymore, what did you do or say if anything? I feel like a huge burden has been lifted off my shoulders now that I've admitted I can't continue a (formerly) wonderful friendship with a dear friend of over 7 years. Still I'm waiting for the sadness and realize it will come probably when I least expect it. But now that I've made this decision, I may hear from this person IF I didn't really hurt her feelings by sending an e-mail that if she read between the lines would hurt her feelings. DH thinks she in such denial about her own health issues, she may get hurt but let it go, never admitting what happened and call me up as nothing happened. My e-mail in no way indicated that I did not want to be friends with her by the way.

So I'd like a few different opinions or hints from you who have been in the same/similar situation - even if your story is not about gluten. For instance, my DH said I should be honest and tell the person that I'm moving towards a healthier way of life and she's moving in the opposite direction or something along those lines. She has consistently chosen food over health so me making her feel bad will not be a lightbulb moment for her to suddenly make drastic changes in her life. My thought is just to make excuses until eventually she gets the point that I don't have time for her anymore and of course, she'll never know really why I'm moving on. I just can't find a good way to be honest with her and see no point of hurting her feelings needlessly. I certainly may never hear from her again but I could hear from her next week for all I know and I need some guidance or ideas from others who have gone before me. Thank you if you can share in any way.

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For instance, my DH said I should be honest and tell the person that I'm moving towards a healthier way of life and she's moving in the opposite direction or something along those lines.

To say that is you now making judgements about her lifestyle.

Why don't you just say the truth. You are moving towards a healthier way of life and right now she isn't supportive in a way that you need. You hope that ultimately this doesn't end your friendship but you understand that sometimes people change in different ways. Until you can find yourself in a very secure position with regards to your eating habits, you need to limit your contacts to those people that support you differently than she does.

This gives her the opportunity to ask you how she can be more supportive, or just never talk to you again. But it also doesn't suggest that she is a toxic friend and leaves open the possibility that she does want to help you but doesn't know how.

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Jegstar - all very thoughful tips but I guess I should have clarified that now that I am in a very secure place with regards to my new lifestyle, I can no longer sit back and watch this person slowly poisoning herself with food. I've ignored it for 7 years and I just can't do it anymore. If I were getting paid I could not remember all the ailments she has that are directly related to her obesity. Only one condition is not related that I know of. I wanted to blame her for being so unsupportive so I could feel better but in reality, it's me that can't support her lifestyle anymore. I have to move on and pray that one days she decides to stop self medicating herself with food. So you see, she can't be what I need her to be anymore because that means she has to get heathly and she has proven to everyone she knows that she is not interested in doing that. Maybe I'll get lucky and I won't hear from her.

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Jegstar - all very thoughful tips but I guess I should have clarified that now that I am in a very secure place with regards to my new lifestyle, I can no longer sit back and watch this person slowly poisoning herself with food. I've ignored it for 7 years and I just can't do it anymore. If I were getting paid I could not remember all the ailments she has that are directly related to her obesity. Only one condition is not related that I know of. I wanted to blame her for being so unsupportive so I could feel better but in reality, it's me that can't support her lifestyle anymore. I have to move on and pray that one days she decides to stop self medicating herself with food. So you see, she can't be what I need her to be anymore because that means she has to get heathly and she has proven to everyone she knows that she is not interested in doing that. Maybe I'll get lucky and I won't hear from her.

I do understand that you are secure. I was suggesting a gentle way out for her.

If you burn the bridge too completely, she would have no one to turn to if she did decide to take control of her life. I have no personal experience with this kind of thing, but my sister-in-law left my brother because he refused to take care of himself. Even that didn't convince him to change. Last year he lost his leg due to a complication from an infection (he's diabetic) and we're thinking maybe, finally, he's starting to realize he's killing himself. And it won't be one quick finish, it'll be painful and slow...

I don't think you can change people, you can refuse to participate in their self-destruction, or you can point out to them every single time how badly they are treating themselves. Either choice is for your benefit, not theirs.

Take care of yourself.

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Oh Jegstar - I am so sorry to hear about your brother. We know someone who's diabetic and now he can't feel his feet anymore and fell with my nephew so he's now not allowed to pick up his own grandkids except when sitting down. That is what prompted me to get real about my friend. I mean when she became diabetic when told how not to and then didn't tell me, that was the beginning of the end. I am going to try and leave things open even though I can't be around her for now. Maybe she will come around and start taking care of herself and of course I'd support that effort 100%. I was already there when she tried once before, then food won out and that was that. Thank you for your thoughful comments and my heart goes out to you and your brother.

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floridanative:

Its like this .. there are two things that can happen... you keep nagging and it works or you keep nagging and it pushes her further.

If this wasn't adversely affecting you then its still a toss-up ... leave her to realise or try and lead the horse to water.

BUT it is affecting you adversely.... you could make yourself ill with worry, be rebuffed, insultled and still not help.

Since eleep is very likely to meet the girlfriend of the person I'm talking about soon .... I'll keep details light!

I had a very good friend, addicated to alcohol and I tried, went through wantching him kill himself... knew he was lying to his (our Dr.) ... I tried and tried and just before he left Paris for Maddison he screwed up a flight and wanted to stop with me again at a very inopportune moment (the weekend my girlfriend and I moved in)

I said no... unless he was desperate.... but offered to find him somewhere with mutual friends....

Well the good news he is on top of it, has kept down a job for a record time.... obviously his girlfriend deserves most of the credit but I think also cutting him off politely perhaps shocked him enough to bring about some change?

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gfp - thanks. I will ease out of the friendship which will be easy because my busiest time of year with work is about to start. I don't want to burn any bridges in case my friend does one day decides to get serious about her health. I'm glad to hear about your friend - that is great news.

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i totally agree with it all.. i was diagnosed in may when i came home from school, so for the past 3 months at my summer job has made me not enjoy eating lunch with co-workers... daily i hear "oh just fantasize it's a big juicy whatever" or "you'll always be skinny and ppl wish they got diagnosed with sickness like celiac" one guy made a joke about me eating "dog biscuits" and my all time fav... one of my co-workers is lactose intolerant, and has yet to get lactaid and has the nerve to tell me i'm lucky i dont have to take a pill. i guess she doesnt realize that lactaid would allow her to eat dairy, i would love to have pill to take so i can go out and eat, have a beer, and just eat normal food with friends/fam. ppl's ignorance and their unwillingness to learn is aggrevating. i've accepted that i have this, i like the food i eat, and i make the best of what is handed to me. and their jokes aren't funny, it's offending, rude, and at this point annoying. good thing i go back to school in a couple of weeks!!

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I'm sitting here in ATL visiting my parents and we're going to the lake tomorrow and my mother gives me her run down about how she made gluten-free potato salad, some kimd of gluten-free broccoli salad, that she has chips and salsa, fruit, etc. I brought gluten-free brownies and a few other things so I fill her in on that.

Well.........Do you know that she then looks at me and says "why don't you thaw out some of "your" bread and you can have a peanut butter and jelly sandwich". ARE YOU KIDDING ME??? We just discussed all the great gluten-free foods you've made and you're offering me a PB&J on my thawed out gluten-free bread??? :blink: She then says "well if PB&J isn't what you really want we could swing by the grocery store and get you some turkey from the deli"......CUKOO, CUKOO

I took it upon myself to tell her about this thread....

Just another example of people NOT getting it....HAHA!

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My husband thought I'd never stick to the gluten-free diet, and essentially thought I wouldn't see any improvement in my symptoms once being gluten free. After 2 months gluten free, with no symptoms, and me really sticking to it (no cheating), he realized I was right. He has progressively gotten better about it. He asks me what things are likely (or known to be) gluten free when we eat out, and is supportive of trying any new gluten-free products or recipes.

My dad has been skeptical and has voiced his skepticism, but DH told him, "She really hasn't been sick since going gluten free, and she really doesn't cheat." So he has defended my choice to go gluten free. He's been impressed that I figured out what was making me sick so quickly, since most people average 11 years before they are diagnosed.

My mom has glutened me once before... she has been careful, reading labels, but I am pretty sure it was cross contamination, as she had made the same thing at my house a month prior, but made it at her house and I got sick. I wouldn't doubt it if my dad intentionally added flour to the dish (pot roast) to see if I would get sick. He denies it, but I still don't know. Maybe they used a wooden spoon while cooking it. Dad just rolls his eyes when we go out to eat together.

At work, they all know I am gluten free, but they still get these extraordinary chocolate cakes for special occassions and act guilty and apologize to me while they are eating it. I'm not offended, as I don't expect them to get something special just for me. I just think to myself, "This is a great way to help keep off extra weight." (I was overweight until this past month when I got down to a normal weight). :D

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