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Totally Glutened...
#16
Posted 02 December 2004 - 02:51 AM
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!
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#17
Posted 02 December 2004 - 03:34 AM
well i also understand the whole family thing. my grandmother made thanksgiving this year and it was 99% gluten-free. my mother and i provided the turkey,bread and cornmeal for the stuffing. my grandmother worked her behind of so that my parents and my family could eat gluten-free. it was the aunts that cause a fuss. my aunt called and was griping about how the dressing was going to taste gross bc it was gluten-free. my grandmother explained that it is the exact same as non gluten-free except we had to provide the gluten-free cornmeal. she couldnt grasp that. she was so mad that she brought her own dressing. that caused an even bigger fuss bc she had to do that. my mother also baked all the pies and to my aunts surprise they were pretty darn good. but all the other non celiac members were upset bc she made it all gluten-free for the 5 of us. when there was 10 of them. but my grandmother stuck to her guns. she even let eneryone know that if the spoons out of each bowl left that bowl sh ewas going to let them have it. i think she has been more supportive of the whole thing bc of how sick my dad has been. she has watched him go in and out of the hospital. shes already lost one child and now has my father with celiac disease and one of my aunts with some deteriorating disease. it turned out to be wonderful. every year our family fights over the chocolate covered cherries my grandmother makes and in the end i nicely stole my aunts 4 cherries she had hidden in the kitchen. revenge is tastefully sweet in this case. i hope you get better and that your family will one day come to understand that gluten is gluten no matter how you look at it.
christi
#18
Posted 02 December 2004 - 12:55 PM
Positive DH biopsy 4/19/04
#19
Posted 02 December 2004 - 06:50 PM
I'm in Australia. Yes I do have a problem with oats, rice, maybe corn, I know peanut butter is out
I tried a rice ceriel, which ended up tasting like a really badly made rice pudding.
That was before I realised that rice makes me really sick as well.
It seems that we don't have the great variety of cerials that you have..I may have to immigrate!
I've been having scrambled eggs...boring!
Now, I'm trying to think of something nourishing for lunch. I tried gluten-free bread. I didn't like it at all. I'm not a bread eater anyway, so I probably won't miss it too much.
It will be great to feel better. I'm looking forward to that!
Maggie
Working towards wellness.
gluten-free (or trying to be) since December 1st 2004
positive blood test - Oct. 2004
positive biopsy -Nov. 2004
#20
Posted 02 December 2004 - 09:05 PM
Maggie,With Christmas coming up, there's going to be get-togethers with family and friends.
Some of them are great, and understand about coeliac disease and gluten intolerance. While others we will be having a meal with are totally ignorant, but sweet people. I'm hoping there will be food there which is ok for me.
Many times i just eat before i go. I've found it far easier to not expect any suitable food at all, and i have a MUCH better time than reading all the ingred labels and having to decide whether to bother correcting person X's "so it's an allergy?" question and wondering whether any backseat chefs thought 'it needed a little more ______' and used a non-gluten-free version of an ingred while a gluten-free brand sat nearby. And on and on.
I'm better off just leaving the issue at home and enjoying myself.
This'll be my first xmas gluten-free, and now i realize i don't really know what i'll do. I'd like to bring something to eat at the table during THE dinner. Hmmm 23 days to figure it out !
Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.
Gluten-free since 12-03
Dairy-free since 10-04
Soy-free since 5-07
#21
Posted 02 December 2004 - 11:18 PM
Somebody asked me what I had for Thanksgiving at my daughter's house: TURKEY! It was great--so moist and flavorful. And I sat quietly enjoying it as the others ate. I eat mine with lots of Kraft Mayonnaise on it. No one gave me a moment's trouble. Of course I've had years to help them get used to the idea that most foods are poison for me, so that helps (I'm intolerant of all grains, milk & dairy, egg whites, and yeast). I've managed to lose about 20 pounds and keep it off, so that helps too, while everyone else is always struggling with their weight.
Here's the part I really like--I went shopping and bought oranges for Ambrosia Salad (it also has cocoanut & walnuts), canned pumpkin to mix with egg yolks and brown sugar to bake, raspberry sorbet and vanilla soy ice cream to cover with pecans, my own turkey, and a few other things that sounded good, then I prepared them before I went to our family dinner, so when I came home I celebrated my own little Thanksgiving, all by myself, after having a beautiful day with my family.
The topic of food never came up in a negative manner, and this is a true triumph, because last Christmas I even bought each family member a Celiac home test kit from Enterlab, at $118 each. When they mostly didn't get used I learned there has to be a better way than talking, so I have resolved to just be the most positive, healthy-looking individual I can be, taking care of myself in such a way that I really will be healthy, and that's the hard part. I'll take my own bag of food anywhere. It doesn't matter to me anymore what anyone thinks. I'm not breaking my diet for any reason. And this week, when exhaustion set in, I isolated to my home and took good care of myself. Now I'm feeling better, so I can help take care of others too. Welda
#22
Posted 02 December 2004 - 11:22 PM
I was pretty lucky for thanksgiving, my inlaws are also gluten-free and we went to their place. My own family on the other hand thinks i'm exaggerating, or overreacting or whatever....my mom has made a point to look for gluten free recipes for me for my holiday baking. But the rest of the family just doesn't get it. I think they look at it as a 'diet', something that you can cheat on when its inconveinient. But really, I'm the only one who has to understand, its my body my choice and my pain.
If you end up going somewhere for Christmas that doesn't have safe food, you might try bringing your own. You can always say that you didn't want anyone to have to go to any trouble because of your ILLNESS. Let them know that Thanksgiving made you sick for days. They will get it or not, but you won't be at their mercy.
#23
Posted 03 December 2004 - 03:27 AM
Since Thanksgiving I've spoken to my mom and sister in law about the holiday... my sister in law says don't be mad at everyone, life is too short, and I agree, I'm not mad I was just disappointed. My mom..... sigh.... well she listened to what I had to say and agreed with me and said she is still learning about Celiac and will be more intuned to my diet issues without nasty comments, which of course was good. But then she said maybe you shouldn't be so sensitive.... well I was sick for 5 days, it tends to make you a bit sensitive! Oh well. We'll see how it goes.
Thanks again, Susan
#24
Posted 03 December 2004 - 05:58 AM
I went with my husband tonight to his work Christmas party. I was glad when the waiters brought out trays of food, as it meant it was a 'help yourself' thing, rather that having to eat what they gave you.
Well, I tried to be sensible. I had salad (it's summer here in the land Down Under) , one baked potato (not a good choice I don't think) a couple of oysters, and roast lamb with mint jelly.
I reckon it sounds like a REALLY good idea to eat before leaving home in this situation, and I will strongly concider taking some 'good' food with me on Christmas Day.
Maggie
Maggie
Working towards wellness.
gluten-free (or trying to be) since December 1st 2004
positive blood test - Oct. 2004
positive biopsy -Nov. 2004
#25
Posted 08 December 2004 - 12:49 PM
#26
Posted 08 December 2004 - 12:53 PM
THis year I was so proud to serve the whole Thanksgiving meal gluten-free and dairy free, from turkey and stuffing to pie. (Yes, it was delicious to all of us, non celiac disease , non allergic and all). We had such a wonderful familymeal. No, this would not happen at any relatives house. It just wouldn't.
Invite people over. A lot.
Sending lots of empathy your way.
P.S. Wish I could invite you over.
#27
Posted 17 December 2004 - 04:40 PM
I got it from a health food store.
I've also been having tinned fruit, mostly pears as they are easier for me to digest first thing in the morning.
So, life is not so bad when I don't have to cook breakfast every morning. I'm not a morning person at all.
Last night, my hubby and I went to our friends place for our regular Friday night get-together. we watch videos and nibble....welll, I used to until I found every time I'd come home in great pain and sick all night.
Last week I gave them a copy of the what celiac disease is, and what the consequences are if a celiac person ingests gluten.
They served us up a lovely baked pork dinner, which was fine with me. It was followed by icecream, which I thought probably had gluten in it. I only had a small amount.
My tummy was fine with it, but I really felt like I'd had a few too many beers. It was hard to concentrate and speak properly, and even to walk straight was a challenge.
Is this a common sign of being glutened, and would I still be causing trouble to my villi if I have the occassional 'normal' icecream??
Maggie
Working towards wellness.
gluten-free (or trying to be) since December 1st 2004
positive blood test - Oct. 2004
positive biopsy -Nov. 2004
#28
Posted 18 December 2004 - 02:51 AM
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!
#29
Posted 18 December 2004 - 11:41 AM
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
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