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Getting Others To Understand Celiac


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22 replies to this topic

#16 kabowman

 
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Posted 28 September 2004 - 09:45 AM

I am also discovering how wonderful and understanding my family has been. My husband helps out at resturaunts and at home and my oldest son now reviews all the food I buy for myself since he finds items that I miss. I have my own shelf in the fridge and everyone leaves my "special" (i.e., expensive) food alone. Even if it sounds much better than theirs like my cashew butter (since I am peanut intollerant)! Occasionally they will joke about contaminating me (kiss) or my food but, that is all it is, just a joke. They have been truely supportive. They also see the difference in my well being and notice how horrible I feel after an accidental contamination! I am really fortunate and wish it could be that way for everyone.

Ditto to Plantime

-Kate
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-Kate
gluten-free since July 2004

Other Intolerances:
Strawberries and Banannas (2007)
Nitrates (April 2006)
Yeast (which includes all vinegar so no condiments) (Oct. 2004)
Peanuts (Nov. 2004)
Soy (Oct. 2004)
Almonds (Sept. 2004)
Corn (Sept. 2004)
Lactose/Casein (1999)

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#17 stef_the_kicking_cuty

 
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Posted 28 September 2004 - 10:30 AM

Hello Stacy,

my husband had the same reaction first. Then i found something to compare it for him, although it's not the same. He has an allergy against different kinds of pollen. Well, i said to him, if i put only one pollen into your nose and expect you not to sneeze. That would be quite silly, wouldn't it? Mostly he says yes. And then i say, see, that's the same with gluten, if it's only a breadcrumb, it makes me sick.

And @ Charlotte: I don't think it's fair. I wonder how much they suffer, if you're not there anymore. It's very easy to speak out mean words and not notice it. I wonder, if they know how much they hurt you with that. It's not your fault either, that you're sick. And how can he say "you do what you want, it's your life". Even if you wouldn't want to eat glutenfree, you had to. It's not a choice you can actually make. As your husband he should support you better. You love each other the same. In good times and in bad. My mother (and i'm pretty sure, she's celiac too) had breast cancer earlier in life. And i'm pretty sure, that my dad's behavior did it's part to cause the cancer as well. He loves her with all his heart, but sometimes he just makes/brings her down or offends her (also in front of friends) without noticing it with his stupid behavior and that's why she's depressed all the time. And what you wrote about your husband reminded me of my dad. The very same pattern. Just stupid. My advice, just cook something out of your glutenfree cookbook and don't tell your husband it's glutenfree. Do that for several weeks and keep on saying nothing. Sometimes they don't even notice. And once he notices you can counter and say that you fed them glutenfree for a month (or how long you did till that time) and they didn't even notice. Then he can't say anything anymore, because if they didn't complain before, they obviously liked it. Or you cook one glutenfree and several gluten meals. When i have a free day and i have time to cook i cook a little bit more for myself and put it in the freezer. So i don't have that much work, once my husband likes something else with gluten. And besides, they should be glad, that they have the opportunity to eat healthier, because that's what glutenfree food is and that you also care about their health. In my head i hear my mother-in-law speak to my husband: Suck it up!!! It's good to have the mother-in-law on your side...lol.

And there's also no kiss after glutenbeer.

Lots of greetings to all, Stef
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Stef

Next goals:
Results for 2011:
1x PA State Champ (I defended my title in pointfighting) and also again Grand Champion in pointfighting
August 20-27: Karate and Kickboxing World Championships in Germany (my homecountry)
gluten-free since 07/21/2004
Shermans Dale, PA

#18 Guest_gfinnebraska_*

 
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Posted 28 September 2004 - 10:32 AM

I am the only celiac disease in my family. My sons (19 & 18) say they would kill themselves if they get it... hopefully they are only kidding (eeek!) ~ my daughter, who is adopted, always asks, "Mommy, will I not be able to eat pizza when I become a Mommy??" I have to assure her that she is fine & chances are will NEVER get celiac disease because she is adopted... and doesn't share my genes! I usually cook one meal for them and one for me. I also tend to cook things that are naturally gluten-free ~ meat plain on the grill, etc. My husband is very understanding and never rolls his eyes or is embarrassed when I have to go into great detail when ordering in a restaurant, etc. It takes time... after a few years it will just seem "normal" to you and your husband. After the kids are all gone (2 down, 1 to go) I am sure I will have a totally gluten-free household. That will make life a lot easier! PTL!! No cross contamination issues. :)
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#19 darlindeb25

 
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Posted 28 September 2004 - 11:03 AM

:D i have to add to this section--my oldest son didnt understand why i thought i was special--i had a dish of margarine in the fridge with "mom" on it and he told 1 of my other son's that "mom is being stupid" :( --the other son told him that i was not being stupid and that he is allowed to use my butter, but that he had to be sure there was no double dipping and that taking care of myself was not stupid-------my man and i went to a Boston Market Restuarant that does have gluten-free items on its menu and we ordered our meal--i told the girl that i did not want a biscuit on my plate and she told me it comes with the meal--i repeatedly told her no biscuit--my man stepped in and told her, "she said--no biscuit--she doesnt want the biscuit, she can not have biscuits and if you will not serve her meal without the biscuit, then we will eat elsewhere" :angry: ---hehe, i got my meal, minus the biscuit and i might add, it was very good----he is very supportive of me and reads ingreds too ;) --like the day we bought coffee making sure we had regular and when we left and took a drink we realized it was not reg, but still good----WELL, it was hazelnut and i suggest no one with celiacs ever drink it--i was so sick in such a short time and he felt so bad :unsure: ---by the way--my man always brushes his teeth before kissing me after eating something he knows i cant have----what a sweetheart i have found :D
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Deb
Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

#20 Guest_gfinnebraska_*

 
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Posted 28 September 2004 - 11:21 AM

Side question: Are flavored coffees not gluten-free?? I drink Gevalia's flavored coffee ~ have not noticed a reaction, but that doesn't mean anything. Anyone know if they are gluten-free?? Thanks for the help!!
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#21 darlindeb25

 
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Posted 28 September 2004 - 01:03 PM

<_< i doubt that all flavored coffee has gluten, i just go by my motto: if in doubt, go without :P --my sister told me to stay away from most flavored coffees and i never get cappahino either--i just know the only thing i had that could of made me that sick was that coffee and we cant be sure it was hazelnut, but that is what we were thinking--i didnt even drink most of it cause i dont like flavored coffee--there wasnt anything else i had that would make me sick--at that time i wasnt eating much of anything--cottage cheese and fruit was about it and my peanut butter on caramel corn cakes ;) i know it was that coffee and i dont even know what brand it was--we got it at a hess station in ronkonkama, that's all i remember :rolleyes:
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Deb
Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

#22 debmidge

 
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Posted 30 September 2004 - 02:20 AM

I was so scared when my husband was diagnosed with celiac disease that I no longer buy gluten foods (except: Lean Cuisine frozen for myself and my whole wheat bread which the opening is tied up tight and I clean off the table after I make my lunch for work with it. ) If I can buy the same product gluten-free I do so. It helps keep the kitchen sane and reduces accidental gluten poisioning of my husband.

So my recommedation to the original poster is when you go food shopping select with YOU in mind.
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Husband has Celiac Disease and
Husband misdiagnosed for 27 yrs -
The misdiagnosis was: IBS or colitis
Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,
most prestigious medical groups in northern NJ which constantly advertises themselves as
being the "best." This GI told him it was "all in his head."
Serious Depressive state ensued
Finally Diagnosed with celiac disease in 2003
Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.
Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle
Developed neuropathy in 2005
Now has lymphadema 2006
It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

#23 lovegrov

 
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Posted 30 September 2004 - 06:18 AM

I'd never advise you to drink flavored coffee without checking but every single flavored coffee I've ever checked on has been gluten-free.

richard
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