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21 replies to this topic

#1 AmandaD

 
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Posted 02 September 2005 - 05:22 PM

Hi, My name is Amanda in Madison, Wis. I'm 29 and was just diagnosed with celiac today via endoscopy (guess it showed abnormal villi consistent with celiac and I had a positive TTG test)....I am so new to this. Is celiac a super-scary diagnosis or is it something that's really manageable? Any good, positive advice would be sooo appreciated. Thanks.
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Amanda
Positive TTG 9/05
Positive endoscopy 9/05
Doing well with "Sprue"

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#2 KaitiUSA

 
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Posted 02 September 2005 - 05:36 PM

At first it can be overwhelming because so much stuff has gluten in it but once you find the good brands you realize you can have alot of good tasting foods and substitutes for the food you can't have..then it gets easier.
It is very manageable as long as you stay 100% gluten free with no cheating. Cheating on the diet or ignoring the diet will cause major problems so as long as you stay gluten free you are good to go :D

Welcome to the board and you came to the right place. This is a great resource for info and support. You will find the great tasting stuff in no time.

There are lists you can get of gluten free foods and makeups and other products on here.-The Delphi List is what alot of people like..it is quite extensive and 79 pages long of foods and products. You can find more in the product section about it. If you contact celiac3270, he will send you a file where you can download it or it gives you directions on how to get it yourself if you prefer.

There are lists of mainstream brands who will not hide anything either. Gluten can hide under alot but with the following brands they will put wheat,rye,barley,oats right on the label or they will be safe. This helps us out alot so we don't have to call all the time with these brands..if you would like that I am sure you will come across it on the board...it is posted a # of times but I can post it here or email it to you if you would like.

Also, the following link will help with some safe and forbidden foods and ingredients: http://www.celiac.co...html?p_catid=12
  • 0
Kaiti
Positive bloodwork
Gluten-free since January 2004
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"

"One Nation, Under God"

Feel free to email me anytime....jkbrodbent@yahoo.com

#3 AmandaD

 
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Posted 02 September 2005 - 05:40 PM

At first it can be overwhelming because so much stuff has gluten in it but once you find the good brands you realize you can have alot of good tasting foods and substitutes for the food you can't have..then it gets easier.
It is very manageable as long as you stay 100% gluten free with no cheating. Cheating on the diet or ignoring the diet will cause major problems so as long as you stay gluten free you are good to go :D

Welcome to the board and you came to the right place. This is a great resource for info and support. You will find the great tasting stuff in no time.

There are lists you can get of gluten free foods and makeups and other products on here.-The Delphi List is what alot of people like..it is quite extensive and 79 pages long of foods and products. You can find more in the product section about it. If you contact celiac3270, he will send you a file where you can download it or it gives you directions on how to get it yourself if you prefer.

There are lists of mainstream brands who will not hide anything either. Gluten can hide under alot but with the following brands they will put wheat,rye,barley,oats right on the label or they will be safe. This helps us out alot so we don't have to call all the time with these brands..if you would like that I am sure you will come across it on the board...it is posted a # of times but I can post it here or email it to you if you would like.

Also, the following link will help with some safe and forbidden foods and ingredients: http://www.celiac.co...html?p_catid=12

<{POST_SNAPBACK}>


  • 0
Amanda
Positive TTG 9/05
Positive endoscopy 9/05
Doing well with "Sprue"

#4 AmandaD

 
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Posted 02 September 2005 - 05:45 PM

Sorry about that - just learning how to reply (eek!) Your message makes me feel better already. This diagnosis was a big surpise after dozens after tests the only one that came out funky was the celiac one - shocker :o). I have a husband and 3 littles ones (under 5) who are all going to have to make some major adjustments as well.

I will definitely look at the resources you have suggested!!! This board is so full of info, I was stunned.

My husband and I are curious how important "cross-contamination" is going to be. I'm also wondering what kinds of followup I'll need now. I go to see a registered dietician at the Univ. of Wisconsin hospital shortly and then back to my gastro doc to see "how I'm doing"...do I check in periodically with them? I'm also wondering if I'll need to get my whole (blood relatives) family tested?

So sorry to bombard you all with questions :o). I'm a newspaper reporter, so I guess it comes with the territory.





At first it can be overwhelming because so much stuff has gluten in it but once you find the good brands you realize you can have alot of good tasting foods and substitutes for the food you can't have..then it gets easier.
It is very manageable as long as you stay 100% gluten free with no cheating. Cheating on the diet or ignoring the diet will cause major problems so as long as you stay gluten free you are good to go :D

Welcome to the board and you came to the right place. This is a great resource for info and support. You will find the great tasting stuff in no time.

There are lists you can get of gluten free foods and makeups and other products on here.-The Delphi List is what alot of people like..it is quite extensive and 79 pages long of foods and products. You can find more in the product section about it. If you contact celiac3270, he will send you a file where you can download it or it gives you directions on how to get it yourself if you prefer.

There are lists of mainstream brands who will not hide anything either. Gluten can hide under alot but with the following brands they will put wheat,rye,barley,oats right on the label or they will be safe. This helps us out alot so we don't have to call all the time with these brands..if you would like that I am sure you will come across it on the board...it is posted a # of times but I can post it here or email it to you if you would like.

Also, the following link will help with some safe and forbidden foods and ingredients: http://www.celiac.co...html?p_catid=12

<{POST_SNAPBACK}>


  • 0
Amanda
Positive TTG 9/05
Positive endoscopy 9/05
Doing well with "Sprue"

#5 Rachel--24

 
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Posted 02 September 2005 - 05:50 PM

I havent been doing this very long myself but once you learn about the ingredients and how to shop it just gets easier. The hardest part for me is getting rid of all the "hidden" gluten sources and figuring out what brands are ok. Some stuff *should* be gluten free but then its not guaranteed gluten-free due to possible contamination. Thats the stuff I'm still figuring out.
Anyways,
Welcome to the board :)
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Rachel

#6 KaitiUSA

 
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Posted 02 September 2005 - 05:53 PM

You most definitely need to be concerned about cross contamination. I mean like say your family continues to eat gluten and you make them dinner, well you need to wash your hands before going back to yours, use different utensils and so forth.

You need your own toaster, wooden and teflon things you need to get new ones for you as well.

You will need gluten free products like makeups, soaps, lotions, shampoos, and anything that has any chance of getting into your mouth in any way, shape, or form.

Usually you should get a blood test after like 6 months gluten free. Tests are used to measure compliance. Whatever bloodtests came back positive should be checked.

It is genetic, so your kids should be tested, even if they experience no symptoms. Your blood relatives need to be informed as well and get themselves tested.

Beware of dietitians...many of them know less then doctors when it comes to celiac. Alot have outdated info and don't bother to get updated on it. I was told by one that I can have spelt(which is a form of wheat) Thank God that I knew better.
  • 0
Kaiti
Positive bloodwork
Gluten-free since January 2004
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"

"One Nation, Under God"

Feel free to email me anytime....jkbrodbent@yahoo.com

#7 KaitiUSA

 
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Posted 02 September 2005 - 05:57 PM

I forgot to add:

The slightest bit of gluten can cause damage so it is extremely important to be 100% gluten free and very careful about handling anything that contains gluten.
It has been said that the slightest amount of gluten as frequent as once a month is just like not following the diet because of the damage that doesn't heal due to exposure of gluten.
  • 0
Kaiti
Positive bloodwork
Gluten-free since January 2004
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"

"One Nation, Under God"

Feel free to email me anytime....jkbrodbent@yahoo.com

#8 AmandaD

 
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Posted 02 September 2005 - 05:59 PM

I figured I should be concerned...but my husband seems to think it's going overboard - although the handouts I read from the hospital clearly talked about cross-contamination... :angry: frustrating...

I have a pretty good gastroenterologist (at least I feel good about her because she dx-ed the celiac instead of just telling me it was ibs...) I've heard from my nurse that the dietician actually works specifically with celiac patients, so I'm also hoping I won't have too many problems there.

Does this all get easier and just become a natural part of life - or do you worry about having celiac all the time? I'm hoping it will just gently melt into my normal way of living (which is absurdly busy...)

Many thanks for your replies, again!




You most definitely need to be concerned about cross contamination. I mean like say your family continues to eat gluten and you make them dinner, well you need to wash your hands before going back to yours, use different utensils and so forth.

Be careful if your husband eats gluten and then kisses you(BIG PROBLEM)

You need your own toaster, wooden and teflon things you need to get new ones for you as well. 

You will need gluten free products like makeups, soaps, lotions, shampoos, and anything that has any chance of getting into your mouth in any way, shape, or form.

Usually you should get a blood test after like 6 months gluten free. Tests are used to measure compliance. Whatever bloodtests came back positive should be checked.

It is genetic, so your kids should be tested, even if they experience no symptoms. Your blood relatives need to be informed as well and get themselves tested.

Beware of dietitians...many of them know less then doctors when it comes to celiac. Alot have outdated info and don't bother to get updated on it. I was told by one that I can have spelt(which is a form of wheat) Thank God that I knew better.

<{POST_SNAPBACK}>


  • 0
Amanda
Positive TTG 9/05
Positive endoscopy 9/05
Doing well with "Sprue"

#9 AmandaD

 
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Posted 02 September 2005 - 06:01 PM

Thanks a bunch for your reply Rachel...every little bit helps (especially when you're so new like moi!!!!)


I havent been doing this very long myself but once you learn about the ingredients and how to shop it just gets easier. The hardest part for me is getting rid of all the "hidden" gluten sources and figuring out what brands are ok. Some stuff *should* be gluten free but then its not guaranteed gluten-free due to possible contamination. Thats the stuff I'm still figuring out.
Anyways,
Welcome to the board  :)

<{POST_SNAPBACK}>


  • 0
Amanda
Positive TTG 9/05
Positive endoscopy 9/05
Doing well with "Sprue"

#10 KaitiUSA

 
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Posted 02 September 2005 - 06:07 PM

Yea, it will all seem like a normal part of life to you. You will know what to look for and everything and there will be accidents along the way but you will learn from them.
Make sure your husband knows he can't just go kissing you after he has gluten because thats a way for you to get contaminated.
  • 0
Kaiti
Positive bloodwork
Gluten-free since January 2004
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"

"One Nation, Under God"

Feel free to email me anytime....jkbrodbent@yahoo.com

#11 Rachel--24

 
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Posted 02 September 2005 - 06:19 PM

I figured I should be concerned...but my husband seems to think it's going overboard - although the handouts I read from the hospital clearly talked about cross-contamination... :angry: frustrating...

<{POST_SNAPBACK}>


It's definately a big deal. I just got sick this week from eating gluten-free chips that are produced on the same line as gluten-containing foods. You should get the Delphi list Kaiti mentioned...if I had been more diligent and checked the list first I would have read that these chips are no longer guaranteed gluten-free. I've also gotten sick from my lotion. I don't eat out at all right now because that is the easiest way to get cross-contamination. I replaced all my wooden spoons, got some new utensils, new toaster, baking pans and a new colander for gluten-free pasta. I had to change my shampoo and conditioner as well. Yes...once you get used to it I think it'll become second nature to you.
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#12 Rachel--24

 
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Posted 02 September 2005 - 06:21 PM

BTW...If you don't want the quotes to appear in your post...instead of clicking on "reply" go down a little further and click on "add reply".
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#13 skoki_mom

 
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Posted 02 September 2005 - 07:25 PM

Hi Amanda,
I'm new here too, I was diagnosed on Aug 25th. I'm pretty much useless for advice :P However, just wanted to say welcome. I think your DH is probably in shock! Even though I knew for about 5 months that I probably had celiac disease (time from initial bloodwork to get GI consult to get scope), I have still had some real moments of grief and have just had to sit down and cry awhile. 99% of the time I'm ok. In most ways I feel very lucky that this can be controlled by diet....no medication, no chopping off of body parts, etc. I'm a mom as well :) If you ever need or want to talk, you can always e-mail me :)
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LORI

Dx celiac disease Aug 25/05, ate KFC that night and gluten-free ever since

#14 AmandaD

 
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Posted 02 September 2005 - 07:32 PM

You sound like me :o). I was just sort of stunned by the whole thing, but my gastro is pretty much like "hey, amanda, you can deal with this through diet, no big deal" so that has made me a little more calm...even though I've been a gluten QUEEN for the last 29 years...

I just sat around and stared at my kitchen today, even my beauty products wondering how in the world I was going to do this!!! (I guess I'm also exhausted after all the poking and prodding. Glad it's over...)

Do you have a bunch of kids running around with breadcrumbs leaking from all of their mouths like me :o)?? I'm also sitting here wondering if I should have them all blood-tested...ERG!



Hi Amanda,
I'm new here too, I was diagnosed on Aug 25th.  I'm pretty much useless for advice  :P  However, just wanted to say welcome.  I think your DH is probably in shock!  Even though I knew for about 5 months that I probably had celiac disease (time from initial bloodwork to get GI consult to get scope), I have still had some real moments of grief and have just had to sit down and cry awhile.  99% of the time I'm ok.  In most ways I feel very lucky that this can be controlled by diet....no medication, no chopping off of body parts, etc.  I'm a mom as well :)  If you ever need or want to talk, you can always e-mail me :)

<{POST_SNAPBACK}>


  • 0
Amanda
Positive TTG 9/05
Positive endoscopy 9/05
Doing well with "Sprue"

#15 skoki_mom

 
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Posted 02 September 2005 - 08:09 PM

Well, I wouldn't say I was a gluten queen, pasta was always something I could take or leave. Dessert on the other hand is a hard one.
I'm taking it one day at a time. I'm earnestly trying to be gluten-free, but there is no way, logistically or financially, I can restock my pantry, my kitchen and my bathroom in one day. I'm learning as much as I can as fast as I can, but I refuse to beat myself up for making an honest mistake.
FWIW, I am getting my 2 kids tested.
  • 0
LORI

Dx celiac disease Aug 25/05, ate KFC that night and gluten-free ever since




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