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Another Newbie W/lots Of Questions


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8 replies to this topic

#1 ShortStuff2309

 
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Posted 14 July 2005 - 04:06 PM

I was just diagnosed with this a week ago. I couldn't get an appt with the dietary specialist until the end of the month, so in what little spare time I've had (I'm taking 10 credit hours in 2 months - can you say stressed out?!?!), I've been researching as much as I can. I've found a lot of things that are extremely confusing, though. Like on the list my doctor sent me about what I can and can't have - on the things I can have it says salad dressings, soups, pure instant or ground coffee, , cold cuts, yogurt, etc. But then on the list of things I can't have, it says commercial salad dressings, prepared soups, flavored instant coffee, cold cuts, flavored yogurt, etc. So I'm not sure what the differences are between those things. Also it says I shouldn't have buckwheat but then it says I can. Same thing with rice - it says I can't have packaged rice but then it suggests to have rice. It also says I shouldn't have anything that's seasoned but then it says it's ok. And oatmeal. I'm just very confused by all of this. Any help would be greatly appreciated!

~STARVING!!~
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#2 KaitiUSA

 
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Posted 14 July 2005 - 04:26 PM

You just have to check absolutely everything. Some salad dressings will be ok and others are not. Pretty much for everything that contains gluten, there is a gluten free version.
You can find info on so many great products on here and there are some brands that will clearly list wheat,rye,barley,oats on the label or will be safe. Those brands definitely help us out and they are listed on this site in numerous places(if you can't find it let me know)

Make sure products like makeup/shampoos/soaps and things that can get into your mouth in any way are checked for gluten.

I would stay away from oatmeal...Oats in the US are highly contaminated plus about 10% of people actually react to the protein called avenin in the oats even if they are uncontaminated....too risky for me.

If you need any help let me know and I would be glad to help you out. Hang in there though, it gets alot easier...you'll learn it very quick.
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Kaiti
Positive bloodwork
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Arkansas

Jeremiah 29:11- "For I know the plans that I have for you, declares the Lord, plans for you to prosper and not harm you,plans to give you a hope and future"

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#3 Canadian Karen

 
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Posted 14 July 2005 - 04:57 PM

Hi! Welcome to the board! Any questions you might have, fire away. Our motto is "No question is too stupid to ask", since navigating the gluten free world can be somewhat overwhelming at first. There's a bunch of really great people here who are always willing to help.

It sounds like you got a lot of confusing information! Basically, you have to live by one rule: READ EVERYTHING!!! There are some companies like Kraft who are really good at listing their ingredients and will clearly list if it has any wheat, rye, barley or oats in it. All of the salad dressings, bbq sauces etc. I use are Kraft, and their selection of things that are okay for us is really quite extensive!

Also, if you e-mail celiac3270 (our resident expert here.....), he has a list he can send you that is an extensive list from delphiforums of things that are okay for us. It's really useful and is broken down into convenient categories to make it easier.....

Make sure you read up on cross contamination also. There is a really good list on this site of ways to make your gluten free world safer (especially the kitchen.....).

Again, welcome to the board and I know the community here will be a wonderful resource for you.......

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......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."
Orison Swett Marden


Laughter is the shortest distance between two people.
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"An optimist laughs to forget. A pessimist forgets to laugh."
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"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."
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#4 Carriefaith

 
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Posted 14 July 2005 - 05:20 PM

So I'm not sure what the differences are between those things. Also it says I shouldn't have buckwheat but then it says I can.

I know that can be confusing at first. The safe list says you can have it and the forbidden list says you can't have it ;) When you see stuff like that, then you know that you have to double check the ingredients. For example you can find salad dressings, soups, pure instant or ground coffee, cold cuts, and yogurt that are gluten free and not gluten free. There are many companies that clearly indicate gluten in their ingredient lists like Kraft, McCormick, Hunt's-Wesson, Dove, ect. Some people on the board have the full list

Also it says I shouldn't have buckwheat but then it says I can.

Buckwheat by itself is gluten-free; however, it can be contaminated or mixed with wheat. I eat gluten free waffles made with buckwheat and have never reacted to them.

Also, I noticed that you had starving at the end of your post. I know at first it seems like you can't have anything at all and it seems like you are eating the same thing over and over. Trust me I've been there done that :D If you would like recipe ideas or meal ideas feel free to ask and I can give examples with all the safe products.
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Carrie Faith

Diagnosed with Celiac Disease in March 2004
Postitive tTg Blood Test, December 2003
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#5 MySuicidalTurtle

 
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Posted 14 July 2005 - 05:26 PM

You should try just eating fruits, vegetables, and plain meats to start with. That way you don't have to worry about eating gluten in processed foods while you are learning what you can and cannot have.
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#6 Jnkmnky

 
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Posted 14 July 2005 - 06:28 PM

http://www.glutenfre...?showtopic=7780

This link here at celiac.com has a lot of store items listed that are gluten free. In the parents of kids section here, you'll see this question "What can I feed my child?" asked a lot and there are some really good answers.
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#7 lbsteenwyk

 
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Posted 15 July 2005 - 06:26 AM

Here is a link to a "A Gluten Free Diet Guide for Families" from the Childrens Digestive Health and Nutrition Foundation.

http://www.naspghan....eeDietGuide.pdf

This will will help you get started with the gluten free diet and answer some of your questions.

I'll try to post some other helpful links later. Good Luck!
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Laurie
Mom to:
Hayley age 4, gluten-free at 26 months
Clark age 3, negative celiac bloodwork

#8 ShortStuff2309

 
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Posted 15 July 2005 - 06:39 AM

Thank you so much, everyone. This is all a huge help. I haven't had time to get to the grocery store yet so pretty much all we have around here that I can eat is fruit (which I've been living on for a week!), rice and salad - none of which really fill you up so I've felt so hungry lately! I went through the fridge, freezer and pantry with my dad and showed him everything that he could have that I can't have anymore, plus I wanted to see what we had in there that I could have. Which isn't a whole lot! It's really amazing how many things have gluten in it. And it's no wonder now why I was so sick! All I lived on was gluten. I'd have cereal every morning, sandwiches every afternoon, and pizza or something like that for dinner, plus snacks like baked goods. Gluten gluten gluten!

I do have another question - I've seen whiskey on both the good and bad lists at various places online. Is that safe or not?
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#9 Canadian Karen

 
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Posted 15 July 2005 - 07:32 PM

I wouldn't be able to answer that as I am not a whiskey drinker (bad experience, drunker than a skunk in my teenage years from Canadian Club Whiskey - still can't stand the smell of whiskey...... anyway, enough of that!!!! :P ) Anyway, here is a list of alcoholic beverages that are gluten free:

http://forums.delphi...iac&msg=42463.1

It seems some are gluten-free, and some are not. e.g. Bushmills and Crown Royale are on there as okay.......

Cheers! ;)

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......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."
Orison Swett Marden


Laughter is the shortest distance between two people.
-- Victor Borge



"An optimist laughs to forget. A pessimist forgets to laugh."
Tom Nansbury


"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."
Unknown




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