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Chrissie32

Minimisation By Family/friends.

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Hi guys...I do hope I'm posting in the right section of the forum...

Anyway, do any of you find that family and friends you discuss Celiac with tend to minimise it or see it as being nothing to worry about? I have told a couple of people and the general response has tended to be along the lines of "Oh, it's common isn't it" or "You'll be ok, it's not life threatening."

It's really making me feel like I can't discuss it with anyone and that I might even be worrying about celiac more than I should.

Anyone had similar thoughts/experiences?

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Hi Chrissie - and welcome. I find that many people really don't understand the severity of the strict gluten free guidelines for managing this disease. Education is key. Some people may never care enough to understand.

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I think sometimes, people compare Celiac to what it could have been, like cancer. We are lucky that we are " cured" by a few diet restrictions. So people think.....that's not so bad. They just haven't figured out all the ramifications of the gluten-free diet and what a pain in the a$$ it can be. Close friends and family will see as you go along, a few may never get it.

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Yep - all the time. However, I have noticed recently that I focus more on those who are a bit rubbish about it than the friends who are supportive (probably because the rubbish ones are louder about it!). If it's someone I see regularly I try to make them understand and I know my parents needed a few weeks to get their heads around it but the more they see me improve and when they saw how badly my two run ins with gluten affected me, the more supportive they become. I also have an aunt who immediately went out and got even more clued up than me on the diet and prep requirements (inc. separate kitchen stuff for the few times a year I stay with them) but still says sometimes that maybe in a while gluten won't affect me so much. She knows I don't think that but as she makes so much effort to keep me safe food-wise (I trust her not to test that little theory!) and always looks out for me at family gatherings when there is food about I'm not going to pick at it. I guess others would but as far as I'm concerned she helps keep me safe and supports me so that's good enough for me.

I also have a few friends here at uni who find the diet (and how 'strict' I am about it) endlessly funny despite understanding the disease. I point blank told one of them the other day that she was the hardest thing about my diagnosis - that shut her up. Funny thing is, she is showing coeliac symptoms and refusing to get tested, I suspect there's a link. 

 

As Jamie said people need education and some people also need time (and yeah, some just don't care unfortunately!). For those that do a relatively simple explanation, a bit of time and some experience with you, especially if you're newly diagnosed, might help. Hope so! Oh and you can always discuss it here :D 

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It is human nature not to like to have other people tell us that we are wrong, even it that is a simple as trying to share information they may not otherwise have reason to learn. 

But when it comes to food, people seem to be even more particular.

My guess is that in a few months, you'll be tired of talking about gluten as well and it will rarely come up in conversation. I tend to answer even direct questions as succinctly as possible because I don't want people to see me as a person with celiac, rather, I'd prefer to be associated with the interests and accomplishments that I actually choose for myself.

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I don't think I have an issue with that.  My family and close friends saw my declining health and building disabilities for many years.  The change they have seen since going gluten free is plenty for them to see that it is a "real" health concern for me and don't question it or belittle it....thankfully.  Otherwise I don't discuss it with casual friends because it is really none of their business.

 

Colleen

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Yes, I think that if you haven't been through it, you just can't relate or be very helpful.  Even the thoughts above included people getting it because they are watching it happen.  My family thought I was just trying to be super-healthy.  After two years they seem to be finally coming to grips with my desperate needs.  It helps to find friends that are struggling with gluten like on this forum.  Some of us have a great need to talk about it.  I would talk about it with people that have been through and try to keep talking about to others around you to a bare minimum.

 

I kept talking to my husband about it even though I knew he was sick of it.  I figured there was no choice, because he was my husband and ought to know.  Sometimes now he seems genuinely interested and sometimes just sick of it.  I am sick of it too, but I have to live here.

 

Dee

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Celiac runs in my family, so when we get together, gluten-free is a given. However, I'm quite sensitive and am intolerant to dairy and soy on top of that, so just knowing "oh, it's gluten-free" is not enough. I want to see labels. I want to know who made it. I feel like some celiac family members think I'm overreacting or going overboard when being hesitant to eat at certain restaurants or in someone's else's kitchen, etc.

Anyway, it does seem that since the gluten-free diet is so popular people see it as "oh, that thing, no biggie", but they don't realise that it's a life long daily struggle.

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I had the same thing happen.  "Oh, there's PLENTY of gluten-free food out there now, you won't have any trouble!"  Yeah, sure, thanks.

 

I'm only at about 6 weeks gluten-free, and I can say those types of comments have stopped.  Some people ask me how I'm doing, my MIL asked me if it was hard (I told her yes).  I especially like the people who say "You won't have to eat that way long, will you?"  Oh, no, only the next 40-50 years, you know, until I die. 

 

I like to start listing off foods that have wheat that people don't usually associate with wheat, just to get the point across:  soy sauce, marinades, BBQ sauces, etc etc.  Eyes get wide then, and I think they start to get it.

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Education as others have said.  Sigh!  I get the "Well, it won't kill you like a peanut allergy will".  Well, probably not but do you want to hold my head while I puke and pass out for hours???   A co-worker told me it was just a diet thing and I would be fine.  A good friend rolled her eyes like I was making things up.   Takes time  for other around us to get it, and to some extent they never will unless they live it!  

My daughter (who really needs to be g.f but we won't go there) tried for two weeks.  She called me crying and said "Mom.  How do you live like this".  At this point in my life it's pretty easy.  Four years ago I would have been crying right along side of her. 

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Yes, I got diagnosed last week and I have definitely received some insensitive remarks.  People don't realize what an overhaul you have to do on your life, how exhausting and tedious it is, how you have to be paranoid everywhere you go, every time you put something to your lips.  They don't realize the emotional toll it takes on you to realize that you have an autoimmune disease.   They also don't realize how absolutely miserable you can feel when you get glutened.  I wrote a letter to my family and friends to help them understand the severity and how much I'm going to need their help.

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"People tell me it's so easy these days. There is so much food for you people now.' Jeez. It's not the food. It's the social aspect around the food. But we work around it, don't we?! We bring our own food and have a good time without that glutenous crap in our bodies!

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I have yet to tell my family. But I guarantee it will get interesting. But moosemalibu, you hit the nail on the head with what I was thinking....it's not so much finding something we can eat, it's more the questions and looks when I pull a snack bar out of my laptop bag, or take a burger right off the grill before it goes on the "serve yourself" table, or don't have an ice cold miller in my hand.

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Hi guys...I do hope I'm posting in the right section of the forum...

Anyway, do any of you find that family and friends you discuss Celiac with tend to minimise it or see it as being nothing to worry about? I have told a couple of people and the general response has tended to be along the lines of "Oh, it's common isn't it" or "You'll be ok, it's not life threatening."

It's really making me feel like I can't discuss it with anyone and that I might even be worrying about celiac more than I should.

Anyone had similar thoughts/experiences?

I honestly think...  people say really DUMB things to try to make you "feel better" or "be positive."  They are all well meaning but rather silly and deep down they are glad they don't have celiac and hope they never do.

 

Even my ob/gyn tried to minimize celiac as "no big deal" and "everyone's getting diagnosed" to even have the ladyballs to try to tell me how easy it was to find delicious, gluten-free products that are easy to buy and inexpensive (oh if she only knew how I struggle with idiots who buy bags of food and smack down burgers, chicken sandwiches from drive throughs like the convenience is just expected that they can eat whatever product is offered by the happy guys and gals who dish out bags through windows for cash).

 

I feel like I will never know convenience again.  If you think you can give up most of every food you've ever loved, which the MAJORITY of food references relate to (come on, you know the ones:  cupcakes, a pizza party which is the catch-all end of the year or end of the season or birthday party you can no longer attend unless you consume a salad, the entire aspect of baking bread, slices of buttered sourdough, soups in a bread bowl, steaming bowls of macaroni and cheese) they are just stupid.  

 

They are trying to make you feel better.  They have no reason at all to think that it's easy.  

 

Next time they ask, just ask, "Why, how do you, a non celiac patient, think you know so much about my disease?"  Have them name the major 4 or 5 additives you have to avoid but they have NO CLUE what they are (modified food starch, yeast extract/malt extract, caramel coloring, MSG) and they'll quickly be quiet.

 

The most kind and neighborly person I knew gave me a care package when I got my Dx.  She also included a CARD which had a note "I have struggled all my life with GI illness.  I know what it's like.  Here are some items which I think will help you, as they helped me." 

 

IS THAT NOT 100% better than a moron saying how "great" it was to be celiac positive nowadays?

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Next time they ask, just ask, "Why, how do you, a non celiac patient, think you know so much about my disease?"  Have them name the major 4 or 5 additives you have to avoid but they have NO CLUE what they are (modified food starch, yeast extract/malt extract, caramel coloring, MSG) and they'll quickly be quiet.

 

Fortunately, in the US, modified food starch, yeast extract, caramel color & MSG do not contain gluten. On the rare occasion MFS is made from wheat, it will say something like MFS ( wheat) or modified wheat food starch. Of course, malt contains gluten.

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Yes, I got diagnosed last week and I have definitely received some insensitive remarks.  People don't realize what an overhaul you have to do on your life, how exhausting and tedious it is, how you have to be paranoid everywhere you go, every time you put something to your lips.  They don't realize the emotional toll it takes on you to realize that you have an autoimmune disease.   They also don't realize how absolutely miserable you can feel when you get glutened.  I wrote a letter to my family and friends to help them understand the severity and how much I'm going to need their help.

 

Your idea about writing a letter is a good idea, i might have to try that! My diagnosis was confirmed 3 days ago; since then my husband has been taking every opportunity to get me to "cheat" on my gluten-free diet. He doesn't get it at all. It is hard enough as it is.

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I feel like I will never know convenience again.  If you think you can give up most of every food you've ever loved, which the MAJORITY of food references relate to (come on, you know the ones:  cupcakes, a pizza party which is the catch-all end of the year or end of the season or birthday party you can no longer attend unless you consume a salad, the entire aspect of baking bread, slices of buttered sourdough, soups in a bread bowl, steaming bowls of macaroni and cheese) they are just stupid.  

 

 

 

YES!  The convenience is the main issue for me, too.  Planning ahead for meals because I can't really stop anywhere between point A and point B to eat anymore. 

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