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Newbie Here


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10 replies to this topic

#1 Guest_talsop_*

 
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Posted 02 November 2004 - 03:14 PM

:o Hi everyone, My name is Terri and I have been newly diagnosed with celiac sprue and it all seems soooooooo overwhelming. I know nothing about this and all the different web sites are so confusing. Any suggestion?
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#2 Guest_jhmom_*

 
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Posted 02 November 2004 - 03:27 PM

Hi Terri and welcome :D

Here are some websites to look over and this website is an awesome resource tool. Also just reading through the posts are very helpful. Good luck to you and take care.

Mainstream gluten-free List

gluten-free Food list **** you must have Adobe in order to view this list ****

What it's like having Celiac

Info on Celiac

Safe and Forbidden Food List
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#3 Guest_talsop_*

 
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Posted 02 November 2004 - 03:35 PM

:) Thank you so much, this will be a big help
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#4 tarnalberry

 
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Posted 02 November 2004 - 03:56 PM

My most important suggestion:
Take a deep breath and remind yourself to be patient.

You ate gluten for a number of years, you've got a pretty ingrained habit to break. You'll make mistakes - don't fret about them, just learn from them. You'll have good days and bad - don't stress about those, just move forward. You'll encounter people who aren't helpful - don't worry about them, just have the confidence to continue doing what you need to do. You may struggle through adapting to a new way of cooking - don't let that intimidate you, just take it one step at a time.

Make sure, for the time being, to stock up on things that are naturally gluten free. Whole foods like produce, meat, and rice/beans that come as they grow, not with anything added to them. Starting simply helps you not worry about contamination or reading every label in detail ('cause apples don't have ingredient listings ;-) ) while you take some time to read information available here and on other websites.
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Tiffany aka "Have I Mentioned Chocolate Lately?"
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

#5 Canadian Karen

 
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Posted 02 November 2004 - 04:16 PM

Hi Terri,

I wanted to first of all welcome you here to the site. You will find a bunch of incredibly supportive, knowledgeable and wonderful people here.....

The gluten-free diet can be so incredibly overwhelming at first. All I can tell you is that you will get used to it. You will get so used to it that you just do it naturally.... It takes time, but just be patient with yourself, it is alot to absorb at first.... Secondly, knowledge is power, and you have to arm yourself with the knowledge. Read, and read lots!!! When you go shopping, take lists with you of things that are okay, so it makes for a more stress free shopping experience.... You can do this, we have all been at the starting gate, and we will help you along as much as you ask us to......

Welcome from Canada,
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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#6 pixiegirl

 
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Posted 02 November 2004 - 04:44 PM

Hi Welcome and I'm new too! I think the adjustment to having celiac disease is made easier or more difficult depending on how you ate before. For me and I'm so new at this I only have a few weeks under my belt, but eating at home is not so difficult. I went and downloaded off of web sites lists of gluten-free food that can be found in my regular store and then I went to the web sites of foods I like, like Hood Milk, Newman's Own and many of them list foods they make that are gluten free. At home we have always eaten very little processed or packaged food so that made it a bit easier for me, I think.

I was big on eating out and I'm disappointed that I won't be doing that as much. I posted in another part of this forum that I'm taking a cruise at Christmas and we notified the Cruise line that I need a gluten free diet and they said they can't do gluten free diets, its Windstar Cruises fyi. However they think there is enough food that I can eat there that is gluten-free. I'm doubting that but I'm still taking the cruise.

So I think you may find that after doing some research eating at home is pretty easy.

Any how, again welcome and I'm sure you will figure it out and it will become second nature.

Susan
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#7 flagbabyds

 
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Posted 02 November 2004 - 07:23 PM

I would like to welcome you to the board! It is an awesome board and you will learn a lot from it!I have been diagnosed since I was a baby, 20 months old. So I know a lot about it. If you have questions you can always e-mail me or PM me.
I have one huge comment:
And it is think positive not negative. When you're negative you get depressed. If you go to the stor and all you see is food you can't eat, you're going to think that you can't eat anything.
Instead you should think that 'Wow I can eat that, that is awesome." you'll be happier. YOu will just be in a better mood because you will be like, I didn't kow I could have that, and that is much better than being like, wow this sucks, i can't eat anything.
Also don't expect to feel better in one day. It may take a couple of weeks to feel a difference because you are so badly damaged, but once you start feeling the difference, you will feel a whole lot better, and it does get better. I promise you it will get better.
People think that this diet sucks, but I have lived with it all my life and there was no gluten-free food back then 13 years ago. NOw there is so much better food and much more variety. I had gross food when I was little, but every year it got a little better, and then in the last two years the food got SO much better. So you are lucky that there is so much food now and it is so much better.
Being diagnosed it a privilage, you won't be sick anymore and you will have so much more energy than you have ever had.
I just want to say that you will be much better as time goes on and you will be glad that you have been diagnosed early and that you won't have to suffer more for the rest of your life and you will feel much better soon.
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Molly

#8 Guest_talsop_*

 
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Posted 04 November 2004 - 02:46 AM

Thank you all for your support. I really appreciate any help I can get. You guys are awesome. I see a dieticain next Friday so maybe they can help me to.
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#9 darlindeb25

 
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Posted 04 November 2004 - 02:55 AM

;) i hope the dietician can help you, but dont be disappointed if she or he doesnt--many in the health field are not as into certain diets as they should be--now if you were meeting with my sister, a celiac dietician, you would learn so much--there was a post in here about a dietician who told the celiac that a little crumb wont hurt--and as everyone tells you--you will get the best info you can receive from these forums--living and learning is the best teacher and we have all become very good teachers :P good luck--deb :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!

#10 Guest_talsop_*

 
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Posted 05 November 2004 - 02:48 AM

Deb, I might have alot of question for you to ask your sister after I meet this dietician if thats ok. I bought 2 book on Celiac sprue so I'm reading them know. Some of the stuff in it is confusing though. One part tells you that you can have mono - dig. and one part says no. ;) dont know which is right
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#11 darlindeb25

 
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Posted 05 November 2004 - 03:51 AM

:D feel free to email me at anytime terri--my sister has helped me a lot--in her cafeteria kitchen at the hospital, there is a shelf for celiac products only--she gives the doctors info they need to know and has even helped patients get testing for celiacs--my email addy is on my post ;) deb
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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!




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