7.06.2012

Celiac Disease = A burden on society??

Did you know that if you have Celiac Disease you are a burden to your friends and family?

No, not really.

But according to these fine examples of modern society, that's exactly what your friends think of you.


Conversation from above video:
Host 1: You're having a dinner party okay... and you're inviting a dozen people.  And people have food restrictions.
Host 2: All it takes is one.
Host 1: I know.  [Snotty face.]  ...they're vegan, they're gluten-free, they're whatever, they don't like dairy ... la la la!
Host 2: [Naming off weight loss diets.] Stay home and eat your pre-prepared meal!
[Laughing]

Translation: 
If you require a gluten-free diet, don't you dare come to my dinner party because I don't want to make the effort to understand that this is a medically necessary diet for Celiac Disease.

I certainly hope the above comments are only the thoughts of two uneducated ladies and that our friends and family will be better informed.

I think part of the issue lies in the fact that gluten-free seems to be the new trend... and people are trying it out for all the wrong reasons (such as to lose weight).   People have been given the wrong impression of what it really means to be gluten-free.

Don't EVER compare eating gluten-free (or having an allergy) to someone who willfully chooses to follow a certain diet.  It is not the same thing.

And before all the vegans or vegetarians get on my case about this... please keep in mind that I have been vegetarian for 13 years (that's 7 years before this whole Celiac journey). I have dealt with the awkward glares when I refused a meat dish.  And I understand the glares.  I made a choice to be vegetarian.

Being gluten-free -- as a result of a disease -- is a whole different ball game.  Intestinal damage will occur if I do not follow my diet.  I didn't choose to be this way.  I am not trying to make your life difficult.  Trust me... as much as I want to eat your delicious homemade lasagna, gooey garlic bread and apple pie, it's probably best that you don't make a big fuss when I turn down your food.  I can be feisty and I'm not afraid to speak my mind.

I can't help but think sarcastically to myself...
I'm sorry that my disease inconvenienced your life for an hour.  It's something I live with every day and will continue to live with for the rest of my life.  Do me a favour - deal with it and have some compassion.

Please note: I don't seriously think of Celiac Disease as a burden on my life.  It is part of who I am.  In the beginning of going gluten-free, of course I was bitter.  But I realized that this disease is not going anywhere and I had to accept it.

In all honesty, it reminds me of a few occasions when I was planning a dinner outing with a couple of friends.  They suggested locations that weren't particularly accommodating to gluten-free diets.  We are lucky in Ontario (warning - shameless plug!) to have access to hundreds of restaurants offering gluten-free menu options.  I believe we should take full advantage of this fact and show our support to these establishments by giving them our business in exchange for their efforts.  I kindly suggested one of the restaurants on Gluten-Free Ontario and the issue was resolved.

I don't expect the world to bend over backwards for me... all I'm asking for is a little understanding.  It's not fun (and totally unnecessary) to go to a restaurant to watch everyone else eat when there's a much more accommodating option down the street ;)

What are your thoughts on dinner party hosts who think of you as a burden? 

Are your friends supportive of your 
gluten-free diet?

24 comments:

  1. Would they have the same attitude if the person had a peanut allergy?

    I've learned to take Gluten Free options with me when I'm invited somewhere. I take the host aside and tell them I can't eat gluten and ask if they would mind if I supplied my own food. Works very well at barbeques.

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  2. Exactly what Mycroft said above. When going to an event, I always pack my own crackers just in case. I ask the host in advance what they are serving for dinner. I bring my own pre-cooked pasta if necessary. If they are having burgers, I just ask that mine doesnt have breadcrumbs when they are preparing and will bring my own bun if necessary. I concentrate and enjoy on what i CAN eat rather than what I can't. My dad passed away recently and I had a table of gluten and peanut free wraps and cupcakes. Guess whose food was far better!!!??? Work with it, not against it.

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  3. I am so glad the people in my life love me, warts and all, as I do them.

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  4. What about those who are gluten-intolerant but have not been diagnosed with celiac disease. As some people may know, it can take a significant amount of damage in your small intestine to properly diagnose celiac disease...and the blood tests are not always 100 percent accurate. Those of us who have endless horrible symptoms from eating gluten and who have not been diagnosed as celiac, should also be cut some slack. I do not want to eat gluten-free, but I do want to feel well. I may not have a DISEASE, but I do not want to be constipated, bloated, lose my hair, and feel like I'm unable to move for days. I believe that everyone should respect the choices that other people make to feel better and not just say "It's all in your mind....they didn't diagnose you....just eat it". There's my rant for the day haha.

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    1. I am gluten intolerant and I am very lucky to have some close friends that are also gluten intolerant so that makes getting together to eat much easier. Whenever I go out to eat I tell the waiter I have celiac because then some of them take it more serious. I know it is a "white" lie but it makes life much easier.

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    2. That is true. So often we forget the ones in the "gray area". Thanks for putting a shout out to acceptance for all!!

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  5. I'm not celiac but I do have food sensitivities to gluten and many more foods that celiacs don't have a problem with. I don't give dinner parties and I rarely go to any. If I'm going away for a weekend, I take my own food. If I'm traveling, I get a motel with a kitchenette. There really isn't much choice for us, is there?

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  6. I've found that often I have to take something along so I don't suffer from problems for a length of time later on. Many times I just opt out or take my own meal so I can still mix and mingle.

    Where I find it most disconcerting is at communion time. It sounds weird to say that a small cube of gluten bread about 3/4 inch square can cause discomfort and other reaction for up to one week. However, that has been my experience and now I am having to get some bread and keep it with me so I can enjoy communion with the rest of the congregation.

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  7. Could not agree with you more jax, it's very frusterating! I am lucky however and have some supportive people in my life. Last night for example I was working a night shift, and the girls I work with wanted to order food, however the insitsted I pick the place because I had to eat gf.I told them not woryy about it, I had brought food and would bot starve, however they did not accept this! haha Thought it was very considerate of them , especially consider I have only just started my job :)

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  8. It is ignorant and discompassionate people like this who put celiacs like myself and my mother, as well as many other people with food allergies, in danger.
    @Mycroft: Good point with the peanuts. Do these women also scoff at Sabrina's Law for peanut free schools?

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  9. I have heard people say things like this before, especially with vegans. Personally, I don't like to inconvenience people, even though my everyday eating is inconvenient, so I find the best way to avoid this is just to talk to the host ahead of time, and hopefully they will have at least one thing I can eat, and then I bring some of my own gluten free items to compliment it. Also not having friends as ignorant as these two helps! Luckily I find most people are accommodating, or at least understanding, as many people have food sensitivities.

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  10. I completely agree with your thoughts about making a choice and having to avoid foods due to an allergy. My daughter was diagnosed with Celiac Disease when she was 10 months old (She is now 4) and the first in our friends/family with a food allergy. I have been fairly lucky with the support I have gotten in regards to her diet. Friends of mine have actually ordered special gluten free pizza/cupcakes etc to match the non-gluten free ones at a birthday party so she is able to eat what everyone else is eating. We were "lucky" that she was diagnosed so early as she has become her own advocate. She will tell anyone who will listen that she can't eat gluten because it hurts her tummy, and before she puts anything in her mouth she will ask if there is gluten in it. I am a little nervous for her as she starts school this fall and will have to deal with new sets of friends and parents that may not be as familiar with it. I have already taken some lessons from her self-advocacy and am armed with my info package for her teacher and the school!!

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    1. Just to reassure you, I have been very lucky with my daughters kindergarten class.. They requested gluten free snacks ie fruits and veggies and they also made the playdough gluten free using a rice based recipe.. I only had one parent complain to me!

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    2. That is nice to hear! I am hoping for the best, but being prepared for everything else :-)

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  11. I have great friends! I always bring my own stuff & don't bother informing people anymore. I just show up with our food & if I'm lucky I know what they're are serving and bring my version of it =) If its a burden on anyone, it's me & my kids for the stigma... Never mind the basic GF shopping & taste issues.

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  12. Again just uneducated people making comments about gluten free eating when they have no idea how awful it is to have to eat gluten free. There are over 100 symptoms of gluten intolerance and many people are never diagnosed. If you are eating gluten free by choice then you should not put the problem on to your host/hostess. All you need to do is ask what is on the menu and if it is not suitable then bring your own food and explain. Very simple. Host/hostess should also understand the issue and that it has nothing to do with their cooking.

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  13. For the most part, our friends and family are completely supportive of my son's gluten intolerance - with two glaring examples.... his father does not believe he has a gluten intolerance, (he has been GF for 5 years now - but apparently it's in my head!), so a few months ago he insited my son eat a bowl of Kraft Dinner. My son has Asperger's and one thing he just can't do is stand up to his dad, even tho he is almost 18. So he ate it and was WICKEDLY sick. But whenever he visits his dad, or his dad's family, they completely refuse to accommodate him. My son has refused to see his dad since April (when this happened) and is only willing to go now. We shall see... the other example is with the sea cadets. i have told them all along that I am happy to provide food for my son. or i'll do the shopping for events (after all, kirkland burgers fro Costco are GF!) etc., but was never taken up on it. last spring they had a BBQ, and they did provide GF hot dogs, but they handed one top my son on the bun. He very politely asked if he could have one without the bun and was told to stop being so damn picky and just take it off the bun. I hit the roof when I found out, and asked if they would have asked the cadet with the severe peanut allergy to lift her hot dog off a bed of peanuts. Apparently that's different. . However, my friends have all been awesome and they run menus past us, make suggestions and even come up with ideas that never crossed my mind!

    Thanks for listening to my rant! :-) Yep Jax - it's Sue!

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  14. Absolutely especially since I am always bringing them goodies.

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  15. Personally, I do just feel like staying home and cooking healthy food for myself. I do not enjoy having strict dietary problems when I am out in the world, but when I am at home, I can relax and know that everything I make will be good for me. I don't like to have to think about my limitations, I prefer to think about all the great food I CAN eat, so just being at home, or eating with my closest friends is best for me. At a dinner party, there is always a conversation about my dietary restrictions because they have to be mentioned, and I know that subject is as dull as can be for everyone.

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  16. If they ONLY knew how difficult it is to be gluten free in a 'gluten world', they'd bite their tongues! Obviously, they have NO idea how much it ruins OUR fun, not to be able to eat whatever we'd like. Forget about THEIR hassle - perhaps certain diets are a choice, but if they'd like a gluten intolerant to eat their meals, they'd should be prepared to put up with them stinking up their bathrooms with diarrhea and vomit!

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  17. Some people gladly accomodate and go to an extra effort to make sure I feel comfortable at the dinner party and eat the same thing as everyone else is eating (all gluten free) and a few, note FEW, others make a big deal of it and act like I'm being difficult and like, maybe, just maybe, I should just buck up and eat what they're eating (read foods containing gluten) for a change...afterall, how bad can it be? sigh

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  18. Adventurous "foodie" hosts seem to be far more accepting of gluten-free eating than people who eat mindlessly. Creating delicious gluten-free meals (and I mean delicious for everyone at the table) can be an interesting culinary opportunity that people who are good at cooking seem to embrace when given some education. It was really exciting to recently attend a family celebration where gluten-free, dairy-free, vegan and everyone else equally enjoyed the food.

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  19. My family and friends have been wonderful...I am still not over the feeling that i am putting people out. When i go for family get togethers like Christmas , birthday parties, mother's day and father's day they all think of me and what i need...most will tell me as soon as i arrive if what they brought or made is not gluten free and apologize. I always tell them not to worry there is plenty more i can have. As i have kept a positive attitude they all have too. A lot of people tell me i have opened their eyes to how much wheat they are getting in their own diets and have made changes. When people say they wanna try going gluten free I tell them not to and explain the importance of wheat in their diets! It make me proud they want to be more like me *grin*
    NO one has ever treated me like a burden ....i tend to treat myself like a burden ...because after all food is what connects people! I felt lost when i first went gluten free as the food connection wasn't there like it used to be. But things have improved a lot and i can eat out with friends and family still , they usually suggest the best place i can eat at...makes me feel like part of the clan again hehehehe

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  20. Thank you to all my family and friends that understand my dairy and gluten challenges. For the bozos out there like Kathie Lee and Hoda on the Today show, I am thinking of a place you can stick that gluten-free baguette!

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