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New Here - Hi All!


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14 replies to this topic

#1 mackersandlackers

 
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Posted 20 July 2004 - 02:38 AM

We are new to this forum - found it through some of the members on UKparents.
Neil, my partner has celiac disease and we have found the last 4 years a bit of a 'mare'! Even his parents do not understand the illness and at family parties never cater for him!

Eating out can be a problem or expensive!

Hope to see you all around! :D
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#2 plantime

 
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Posted 20 July 2004 - 05:48 AM

Welcome! We hope to see you around, too!
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Dessa

The Lord bless you and keep you; the Lord make His face shine upon you and be gracious to you." Numbers 6:24-25

#3 celiac3270

 
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Posted 20 July 2004 - 01:52 PM

I don't like to eat out with celiac disease either.....too bad that is own parents don't help cater to his dietary needs.... :( ........welcome!

-celiac3270
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#4 flagbabyds

 
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Posted 20 July 2004 - 02:02 PM

welcome!
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#5 hapi2bgf

 
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Posted 23 July 2004 - 08:49 AM

Welcome to the club.

My parents and family are supportive in that they ask how I am doing and badger me about my weight loss or gain, but they do not cater anything to me or my diet. It's a fend for yourself diet. Luckily they live far away and don't visit that often. I love them to death and would love to have them around, but they don't make any effort to accomodate my cross contamination issues when they stay at my house for a visit, which makes it hard for me.

Anyway, I have found that this diet really shows you who the people are who love you! My family (hubby and kiddo) & I have local friends who are fantastic about this diet. My three year old knows what foods Mommy can or cannot touch or eat. If a three year old can handle the diet anyone can! The family friends have learned to cook gluten-free meals so I can still come to their house for dinner. We go out to eat and for ice cream and always it is a place that I can eat at safely. They insist on a gluten-free safe place even when I say "Let's go to __ (no gluten-free food) and I'll just bring something or skip".

Although this diet can be hard on you and your immediate family, look around at the friends and family who are interested in learning and helping.

I hope your family gets more supportive over the years!
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#6 castewar

 
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Posted 27 July 2004 - 04:49 AM

Hi, I'm a new Celiac too, what a shock, I've never heard of this diease before
and I love my pasta and batter fried fish. My family are trying to get the hang of
this, as I am, but they don't understand how serious it is.... that I can't have anything
with gluten in it, or that I can't come off the diet for a special occasion then get back on
it the next day. I guess they honestly believe that this is a DIET and not a life-style
change. Anyway I've been reading some past notes and know I have a long way to
go before this becomes normal. I'm going to stick with it because I feel soooo much
better and I never want to get back in the shape I was in 2 months ago.
I'd like to hear from you, This is also a first for me,(posting a note) I don't even know if
I'm doing it right.
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#7 rattaway

 
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Posted 27 July 2004 - 07:58 AM

Hi Castewar,

It does get easier. Just stick to your guns about the food and eventually friends and family will take you seriously. You may come to find that many of them have gluten intolerance too but just aren't ready to admit it. They all will be watching you closely to see how committed you are to the diet and if you are serious about getting better. Misery loves company you know? Once they see how serious you are, you may find that they begin to ask questions about symptoms and find they suffer from some of them. You will be their guide into the wonderful world of gluten-free eating. I love helping other gluten sufferers find a reason for their pain and get a chance to help in a way. I was raised in TX and boy do I know the feeling of giving up batter fried anything. I have however learned to batter fry gluten-free. Try rolling fish & chicken in buttermilk and then into rice flour or cornmeal(gluten-free of course) and add gluten-free seasonings to taste and then fry in a deepfryer. We make catfish and chicken nuggets this way.

:P Best wishes,
Rian
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#8 MySuicidalTurtle

 
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Posted 27 July 2004 - 05:26 PM

Hello! Welcome and I hope you stay. I know how the family thing can go. My relatives only cater when we are in small groups. . .like 3 or 4. . .but only with food at a local store- chips and candy. In big groups they don't seem to care but say "I guess there is nothing here for you, huh?" It' okay though because I don't see them much. Hopefully things will change with his family!

Again, welcome!


Kristina
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#9 scudderkidwell

 
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Posted 28 July 2004 - 11:02 AM

Hi There,

This is also the first time I've posted here.

We just figured out about 3 months ago, from a friend, that my husband, from all the stomach distress that he's had through the years, could have celiac disease. She brought a pamphlet with all the info and from all the symptoms they listed, he had most of them. So. we did some research on different flours and foods that he could he eat and it looked pretty bleak. I went through all my cupboards and got rid of all things that contained Gluten. Man, is it expensive when you first get started, plus you have to be a food chemist is understand the labels on foods. But after the first week, it was amazing the change he went through. He's been gluten-free for almost 4 months. He's lost over 35lbs. Luckily, all our friends and family are very supportive. When we visit, we usually pack his own foods. Breads, cereal, condiments, butter, milk (because he is also Lactose Intolerant), which makes it more fun. The bad part of all this is that we're spending 3 times the price on food. Luckily, there's only the 2 of us. I can't imagine feeding a large family gluten-free unless you had to. I don't have a Gluten problem that I know of, but I've lost about 25lbs on this lifestyle change. Hopefully, eating this way, my husband and I have added on an extra 15 or so years to our life span.

Going out to eat is a real challenge and very expensive. No fast food palces for him. Full service is about the only way to go so he can special order his food. Why is it so expensive to eat healthy and take care of yourself???

Well, I've ranted enough. I'm glad I found this forum. May need some advice from the experts out there. Thanks, Wife of a celiac disease, Jean
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#10 celiac3270

 
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Posted 28 July 2004 - 11:52 AM

The bad part of all this is that we're spending 3 times the price on food. Luckily, there's only the 2 of us. I can't imagine feeding a large family gluten-free unless you had to. I don't have a Gluten problem that I know of, but I've lost about 25lbs on this lifestyle change. Hopefully, eating this way, my husband and I have added on an extra 15 or so years to our life span.

Going out to eat is a real challenge and very expensive. No fast food palces for him. Full service is about the only way to go so he can special order his food. Why is it so expensive to eat healthy and take care of yourself???


Yep....I'm the older of two children in a family of four. I'm the only celiac in my family, so nobody else eats gluten-free, not because the food is horrible or anything, but simply because it is soooo expensive. It is a challenge to eat out. About fast food places, McDonalds fries are gluten-free....cooked in oil that is used only for the fries and hashbrowns. TGI Fridays has a gluten-free menu, as do PF Changs and many other places I can't remember. It is difficult, though, to eat out...nobody gets it....it's rather funny and disturbing at the same time when you ask about gluten and people think you're talking about sugar (glucose).

-celiac3270
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#11 rattaway

 
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Posted 28 July 2004 - 12:11 PM

I have had two friends in the last week say something about french fries," You can't have french fries either huh?" I just ask them, " You do realize that french fries are potato not wheat right?" It is like no one realizes just what gluten is or obviously what wheat is. Duh. :D If I get really angry about someones attitude, I just "kill them with kindness. " I try not to let on that their comments bother me. Sometimes I feel like I am speaking to a little child when I try to explain our food allergy to them. Oh well, I know I am healthier and happier since going gluten-free. No amount of fresh baked donuts, french bread, cakes, ect. at the store could make me want to go back to the agony I was in before gluten-free. I have some good recipes if anyone would like some. Just ask. :rolleyes:

Rian
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#12 scudderkidwell

 
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Posted 28 July 2004 - 12:32 PM

About fast food places, McDonalds fries are gluten-free....cooked in oil that is used only for the fries and hashbrowns. TGI Fridays has a gluten-free menu, as do PF Changs and many other places I can't remember. It is difficult, though, to eat out...nobody gets it....it's rather funny and disturbing at the same time when you ask about gluten and people think you're talking about sugar (glucose).

Yea, I know what you mean. We've been pretty lucky since we live in a tourist area, and work in a resort town. You have alot of tourist that come through with alot of food allergies, so the waiters and also the chefs have to know alot about all the food allergies or you could get someone very sick and get sued. :o Hopefully, as time goes on and more celiac disease info gets out people in the resturant busness will get more educated on celiac disease and food allergies.

As for McDonalds, we avoid that place. Along with Gluten, my husband also has a problem with oily, greasey and fatty foods. That includes peppers and possibly tomatoes. We're not sure if it's the tomatoes or the spices that you use in spegehetti sauce and also taco sauce, does him in too. I know he can't do cheese, so there goes Italin and Mexican foods. :( Man, this is tough and forget the imitation cheese. YYYUUUUCKKKKK!!!!!!! <_<
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#13 rattaway

 
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Posted 28 July 2004 - 12:56 PM

We are sensitive to Hydrogenated oils. I have a hard time with oily foods but I am struggling to let dairy go. I bet I'd lose five to ten pounds in a week if I got off of it though. It does take a lot of time and patience to be gluten-free but it sure is nice to feel good. B)

Rian

I was beginning to wonder if anyone was on this site this afternoon.
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#14 rattaway

 
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Posted 28 July 2004 - 01:03 PM

I just posted a reply dealing with our sensitivity to hydrogenated oils but it just disappeared on me. I am having a tough time as a Newbie on this site. I haven't quite got the hang of it yet. I try very hard to avoid hydrogenated oils too because they seem hard for my husband, two girls as well as myself to digest. I wonder if many other celiacs have the same problem. Too many years of damage maybe? <_<


Rian
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#15 Canadian Karen

 
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Posted 28 July 2004 - 07:04 PM

What you need to do is print off some articles about Refractory Celiac Disease and show them to Neil's family. Maybe then it might sink in just how serious this disease can be. They have to understand that it is not just an "allergy", gluten is actually "toxic" to a celiac's system. If they realize the importance of strict adherence, they probably would be more understanding.....

Welcome to the board!
Karen
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Karen

positive bloodwork, positive biopsy
Celiac, collagenous colitis, hypothyroidism
endometriosis (at age 20)
spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.
Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs
Rhiannon 8 yrs
Daniel & Connor 6 yr twin boys......

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