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No One Understand What I Have!


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12 replies to this topic

#1 moussyluv

 
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Posted 05 August 2005 - 08:58 AM

Hello All :P

Im new to this forum so I'd like to introduce myself. my name is Wanda and i was diagnosed w/celiac about 3 months ago. I've lose a lil over 25 lbs and can say that right now, i feel a bit better then i did back then. i've read stories about ppl still feelin sick for months and months, but i've been pretty careful w/what i've been eating.. Im not gonna lie and say i dont find myself in the bathroom but i can say its not as much as before. I have my good as I also have my bad days. :blink:

I want to bring something up tho and would like some feedback on what I can do. My friends and family know about my disease. My mother especially believe it or not still gives me "grief" about this.. by this i mean, she says its all in my head. she refuses to believe that its "hereditary".. whatever! I know what I know and it just kills me b/c I've tried to educate her about it but she doesnt really want to "hear me". She had a BBQ last wkd for my brothers bday and I kinda knew that I wasnt goin to be able to eat, so I ate b4 I got there.. I've told her how to prepare my foods , if she was goin to cook for me, etc.

But sure enough, when I got there, there was NOTHIGN FOR ME.. she said she seasoned a pc of chicken and rib for me, but HELLO, IT WAS ON THE SAME RACK AS THE OTHERS.. she doesnt believe that it has to be cooked separately and it just drives me NUTZ.. so i sit there, and just stared at everyone eat. I was embarrassed b/c everyone now thinks that I just want to diet. ugh! :o
I dont know what to do anymore.. I dont want to go to BBQ's for this reason. I have a baby shower to go to at the end of the month, and SURPRISE SURPRSE, its at a Park.. BBQ, or catered food.. what ever it is, I WONT BE ABLE TO EAT.. the thing is, I was asked to cook, and how funny would that be for me to show up w/Gluten Free Food so they can have a taste of my life, right? I couldnt tho. I couldnt do that to my friend who is pregnant.. Poor girl, but poor me..
I strongly beleive that no one takes what I have seriously and it just hurts ya know? I know im goin on and on but I just thought I'd share my thoughts.. I needed to vent and y not to "CELIACS" like me.. :(

Ta Ta!
Wanda
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#2 elonwy

 
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Posted 05 August 2005 - 09:10 AM

Its definitly a struggle. We have a staff lunch coming up, and they ordered nothing I can eat. I got the list of what they ordered and called the catering company and they are sending me a plain peice of meat with some veggies on a special plate with my name on it. Work is easier because they can get in trouble. As far as BBQ's .... I'm going to one next weekend. I'm going to eat before I get there, read everything on any label I can get my hands on and not eat anything off the grill. As far as cooking food you can't eat... NO WAY. If I'm cooking, everyone is eating gluten-free. If my BF wants something else, or anyone wants something else, they can cook it themselves after I'm done and use diff utensils. Grrr people are irritating.
One thing I'm finding, is that with some people that are having trouble "getting it" I repeat my description of it and use the word Allergy. People understand Allergy more than "Genetic auto-immune disorder". Maybe that will help. Or "if I eat that it makes me sick". After those two, if they still don't get it .... not much I can do.
Not sure if that helps or not.
Elonwy
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Positive Bloodwork 7/8/05
Inconclusive Biopsy 7/20/05
gluten-free since 7/23/05
Never felt better.


"So here's us, on the raggedy edge, come a day when there won't be room for naughty men like us to slip about at all. - Malcolm Reynolds"

#3 moussyluv

 
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Posted 05 August 2005 - 09:24 AM

Thanks.. right now i am at work, and they ordered PIZZA FOR THE OFFICE.. Mind you, they all knooooow, i cant have it.. they ordered salad adn thought that would be ok, but but once again, i cant have.. drowned w/parm cheese and croutons.. i wont touch it.. so im sitting at my desk, just working and keeping to myself eating my gluten free animal crackers.. lol :D

im trying to post a pic of me, but i dont know how.. do u know how? can u help? :D
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#4 lbsteenwyk

 
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Posted 05 August 2005 - 09:52 AM

I bet you could do a completely gluten free meal for your friends baby shower and no one would even know it. If you can plan the menu yourself and your friend doesn't have to have any particular foods you could try this menu:

*BBQ chicken breasts w/ gluten free BBQ sauce - there are lots of brands that are gluten-free- Kraft has several.
*PotatoSalad - you may be able to purchase this if you call the company to verify it is gluten-free - or you could make your own with a gluten-free Mayo (Hellman's is gluten-free)
*Bush's Baked Beans - all are gluten-free except their Chili beans
*Corn on the Cob
*Green Salad - there are many mainstream dressings that are gluten-free (again, Kraft makes several)
*Ice Cream Sundae's for dessert - Hershey's choc syrup is gluten-free - nuts, pineapple, fresh strawberries, marachino cherries, etc. Bryers and Edy's Ice Cream are gluten-free, except for some of the flavors that contain obvious gluten.

Good luck, and welcome to the board. You will find tons of useful information here. And, of course, lots of support when you need to vent!
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Laurie
Mom to:
Hayley age 4, gluten-free at 26 months
Clark age 3, negative celiac bloodwork

#5 elonwy

 
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Posted 05 August 2005 - 10:08 AM

I think people don't like being reminded of how frail we are. My cousin's husband seemed to cringe from it. And "Forgot" constantly. I now have a larabar on me at all times just in case. They are yummy, but you may want to work up to the Cherry Pie, its a little tart. That way I'm never left hungry and feeling left out.
The suggestions for gluten-free BBQ were good. As long as I don't introduce replacement products, noone sofar has noticed a difference in my cooking.
As far as your Picture is concerned you have to go find Avatar in your settings. That will let you upload a pic.
Elonwy
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Positive Bloodwork 7/8/05
Inconclusive Biopsy 7/20/05
gluten-free since 7/23/05
Never felt better.


"So here's us, on the raggedy edge, come a day when there won't be room for naughty men like us to slip about at all. - Malcolm Reynolds"

#6 tarnalberry

 
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Posted 05 August 2005 - 10:22 AM

But sure enough, when I got there, there was NOTHIGN FOR ME.. she said she seasoned a pc of chicken and rib for me, but HELLO, IT WAS ON THE SAME RACK AS THE OTHERS.. she doesnt believe that it has to be cooked separately and it just drives me NUTZ.. so i sit there, and just stared at everyone eat. I was embarrassed b/c everyone now thinks that I just want to diet.  ugh! :o
I dont know what to do anymore.. I dont want to go to BBQ's for this reason.

I have a baby shower to go to at the end of the month, and SURPRISE SURPRSE, its at a Park.. BBQ, or catered food.. what ever it is, I WONT BE ABLE TO EAT.. the thing is, I was asked to cook, and how funny would that be for me to show up w/Gluten Free Food so they can have a taste of my life, right?  I couldnt tho.  I couldnt do that to my friend who is pregnant.. Poor girl, but poor me..
I strongly beleive that no one takes what I have seriously and it just hurts ya know? I know im goin on and on but I just thought I'd share my thoughts.. I needed to vent and y not to "CELIACS" like me..  :(

<{POST_SNAPBACK}>


As for your mom, there's not much you can do. I would encourage you to continue going to the barbeques, but do as you did - fill up well before the barbeque, or bring your own food. It can be tough, I know (I still deal with it), but it's important to transition between thinking of these as food-related activities and focus on the people instead. Yes, it's hard - maybe it always will be; after three years, it's still hard for me. But aside from avoiding these activities in general and losing that source of contact, it's the only solution if your mom's unwilling to learn.

As for your friends, I don't understand "couldn't do that to my friend". gluten-free food can be just as delicious and tasty as anything else. Yes, you CAN cook entirely gluten-free and bring that food. For Thanksgiving, I cook the meal for my family (and in-laws) entirely gluten-free (and casein free), and they love it. I bring in muffins and treats for my coworkers occasionally, and they're entirely Gluten-free Casein-free and they get eaten en masse. When I host dinner parties, I always cook Gluten-free Casein-free (and free of any other foods that a guest may have problems with), and the guests still love the food - though they usually don't know it's Gluten-free Casein-free. Don't be afraid to share gluten-free food - it helps people understand it's edible, and it *feels good* to share food you know is safe for you.
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#7 pmrowley

 
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Posted 05 August 2005 - 10:26 AM

Wanda,

Welcome to the boards! You'll find a TON of great information here.

As for explaining/dealing with our condition, the key is to NEVER be embarassed about it, and don't apologize for it. You couldn't control inheriting this condition, any more than you could control your eye color. Sometimes, it's easier to explain the condition as a food allergy; people DIE from peanut allergies these days, and other people bend over backwards to accomodate them.

At a work function, insist (albeit very nicely) that if you're going to be included in a meal, that they need to accomodate your diet. It's a little more of a hassle, but no more so than someone with any other food allergies. The population in general needs to get educated on our condition; it's not going away, and for every 10 people we educate, you'll usually get one who becomes a champion for the cause (maybe they have a relative who's been mysteriously ill for a long time... sometimes our efforts can really help someone who has been unknowingly killing themselves.)

As for family; that's always the toughest. I would suspect that your mother might be feeling guilty regarding your condition; after all, she's the one you inherited it from. I would suggest you point her to this Friends and Loved Ones section, and let her educate herself. How were you diagnosed? Sometimes, people need the concrete evidence in front of them; physiological proof like a biopsy result or blood test might be enough to get through her mental block. She needs to realize that you don't blame her for something she couldn't control either, but she needs to know that she MUST support you in this 100%. Whether she likes it or not, you have a genuine, proven medical condition that must be treated. If she's going to refuse to accomodate you, you need to stop eating at her home. Period.

I would say the biggest thing you need to address is your apologetic attitude regarding the whole thing; there's nothing to be ashamed or apologetic about. And you're not *inflicting* gluten-free food on anyone. gluten-free food these days is just as good or better than non-gluten-free food. It's been proven that gluten-free is in general, a better way to live. My wife, who is not a Celiac, eats gluten-free with me exclusively, except when she wants some sourdough bread from a restaurant. If I have friends over, they get gluten-free food. I've never had one single complaint, and more often than not, praise for the food. I've served gluten-free pasta dishes that has prompted people to switch their own diets over in some areas. We had a gluten-free wedding cake that our guests RAVED about at our wedding last year, and the entire catered meal was also gluten-free. It's *your* life. Live it the way *you* want.

Cheers,
-Patrick
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celiac disease diagnosed in 1980 by experimental biopsy procedure
gluten-free ever since!

#8 ianm

 
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Posted 05 August 2005 - 04:15 PM

Some people get and others don't. Your mother is one of the ones that doesn't get it and probably never will. You will have to get some thicker skin and a stronger backbone if you want to stay gluten free. It is your body and it is up to you to protect it. If people get offended because you won't eat their food then that is just TOO DAMN BAD! :angry: You wouldn't ask them to eat rat poison so why should you eat their toxic food. Whenever some idiot blows a nut because I won't eat their food that person just won't be a part of my life anymore, even if they are family.
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If all the world is indeed a stage and we are merely players then will someone give me the script because I have no f!@#$%^ clue as to what is going on!

What does not kill you makes you stronger.
Nobody cares about losers and quitters never win. If you fail with the cowards then what's the message you send?
Can't get it right, no matter what I do. Might as well be me and keep fu@$ing up for you. - Brian Thomas (Halloween, the greatest metal band ever!)

Ian Moore. Self diagnosed at 36 because the doctors were clueless.
Started low-carb diet early 2004, felt better but not totally gluten-free. Went 100% gluten-free early 2005 and life has never been better.

#9 KaitiUSA

 
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Posted 05 August 2005 - 04:36 PM

As said, some people will get it and some won't. There will be times when they order things you wish you could have but don't let it get to you..they can eat their food and we can have ours. There are great foods we can have too.
I have alot of family who don't seem to get it and its been over a year and a half..these people will not get it and that's fine with me. I can get along fine with or without their understanding. Try not to let them bother you. Some may just plain not get it and others just don't want to get it. Either way forget about it and just get some of your own yummy food.

Some friends who did not get it before brought a pizza for me one day and was like well we will scrape the cheese off so you can have that part. Well I went and got some kitchen cleaner and poured it on the pizza then tried to scrape it off and give it to them...and you know what..they didn't want to eat it...but I scraped it off!! :lol: After that it seemed to click with them and they have not attempted anything like that since.
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Kaiti
Positive bloodwork
Gluten-free since January 2004
Arkansas

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#10 nettiebeads

 
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Posted 05 August 2005 - 06:10 PM

Hi! I'm new to this forum too. I've been a celiac for 10 years now and hardly even think about it. Although what does drive me crazy is eating out. I had to go to a conference where we were given a voucher to eat at the cafeteria (FREE FOOD!) but when I got there the only thing available was the salad bar. Oh goody. I could smell broasted chicken (breaded) and all kinds of yummy stuff that was off limits for me. I was terribly bummed out and went out to my car to get my rice cakes with peanut butter on that I had brought just in case. I rarely get bummed out but that day did it to me.
When I was first diagnosed my then mother-in-law couldn't get it. At all. And my coworkers always forget, especially the one that is in charge of catered affairs. It gets aggravating, but you have to stick to your guns and protect your body. My mother keeps forgetting too, but she doesn't cook for me so that's not too much of a problem. Life does get easier. My local health food store has started carrying gluten free mixes so now I can have pizza again!!! And every now and then I make myself a pancake. At first I had a hard time giving up my wheat based carbs, but after a decade of this, I don't think about it too much. Just get real tired of having to read labels all the time, but I know the results of when I (or my husband) don't read them completely. Down to the nth detail. He fed me pregrilled chicken breasts one night, unfortunately afterwords he read the ingredients for soy sauce - soy and wheat flour. That was two weeks ago. Most of the physical stuff was over in four days except for the extreme fatigue. He still feels bad, but life goes on.
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gluten-free since Oct 1996

#11 Guest_nini_*

 
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Posted 06 August 2005 - 06:02 AM

For the fourth of July, we had a BBQ at our house and all the food was entirely gluten-free (except for the buns which were not allowed anywhere near me or my daughter's food and not on the grill) and no one noticed. (oh and except for the cupcakes my mother brought because she thought we were torturing our guests by not allowing gluten...) but my point, the food was all delicious, everyone had a great time, and we didn't make a big deal over substituting gluten-free stuff, we just used naturally gluten-free foods.

I did have to turn down a work related baby shower this week because it was held at a restaurant and the place would not allow me to bring in my own food and they were SOOOO not accommodating when I called to ask if anything would be safe to eat. It was held at lunch time and my schedule didn't allow me time to eat beforehand so I just politely bowed out. Were my feelings hurt? Yes, a little bit, but I got over it. Did I feel left out? You bet... but I accept that non celiac people are not always going to "get it" no matter how much I try to educate them.

I'm convinced both of my parents have celiac, but my mom (even though she tries to understand) still thinks I am being a hypochondriac over the whole thing, even with both me and my daughter having this. I'm pretty sure my sister has it too... but again, unwilling to consider changing her diet because it's too overwhelming for her.
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#12 cgd

 
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Posted 06 August 2005 - 04:34 PM

Hi, sorry everyone is being dense and thick-headed about this. Whatever happened to hospitality? I live in the South, and if you knowingly invite someone to dinner that has a condition or food allergy or whatever, you are obliged to accommodate them. My FIL is celiac, and the in-laws went with DH and I to visit my mother and her husband. I told them beforehand that he's celiac (this was before I started eating gluten-free), and she just asked what he could eat, and we planned meals beforehand. We got him potatoes and rice, grits and bacon for breakfast, etc.

While visiting, my mom's husband found a gluten-free dill relish for his tuna salad, and FIL mentioned he'd had trouble finding it in stores where we live (I live close to in-laws, not to family), so mom's hubby sent him 4 jars of it after we returned home! I know I'm lucky, but this should be the rule, not the exception. Where are people's manners? These people wouldn't shove cookies down a diabetic's throat, so why do they persist in being so indifferent to celiac disease? Grrrrrr!
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#13 ianm

 
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Posted 06 August 2005 - 05:08 PM

I know a few people who have potentially fatal allergies to peanuts or shell fish. They have told me numerous stories of some dumba!@ who has tried to shove a peanut butter cookie or crab cake down their throat. Some people just can't accept that food would make someone sick or even kill them.

One thing I have found since discovering the source of my problem is that most people are just not that bright. In addition to being stupid they just cannot see any farther than today. Most people just don't like learning new things or having to see things in a different way. Fortunately I have made a serious effort to rid my life of these people and look for better ones. Slowly but surely people of intelligence and substance are starting to come into my life. Ironically if it weren't for celiac disease none of the good things happening in my life would never have occured.
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If all the world is indeed a stage and we are merely players then will someone give me the script because I have no f!@#$%^ clue as to what is going on!

What does not kill you makes you stronger.
Nobody cares about losers and quitters never win. If you fail with the cowards then what's the message you send?
Can't get it right, no matter what I do. Might as well be me and keep fu@$ing up for you. - Brian Thomas (Halloween, the greatest metal band ever!)

Ian Moore. Self diagnosed at 36 because the doctors were clueless.
Started low-carb diet early 2004, felt better but not totally gluten-free. Went 100% gluten-free early 2005 and life has never been better.




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