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8 replies to this topic



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Posted 05 March 2005 - 08:13 AM


I was waiting for my boyfiend at his job, so I decided to check out glutenfreemall and celiac.com. I was amazed at the format, the topics and information. My doctor told me of the site but I just put it to the side. I was diagnosed 9-04 and lost all motivation around 9-05. I just didn't care anymore. I would get upset and just eat anything. (I live alone in Altanta, GA and family lives in Queens,NY and Palm Bay,FL) My family understands what's going on but then again they don't. This becomes so frustating and then depression kicks in. :( I was so moved by the site that I joined and here I am posting this message.

Thanks again,
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Posted 05 March 2005 - 08:43 AM

Hello Charmaine, welcome to the site!
We all know how frustrating this disease can be, especially if you don't have support. Please hang in there and keep trying to stick with the diet, it is so important to your health both now and in the future!
There is lots of super people in this forum that will try and help you :)
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Posted 05 March 2005 - 09:08 AM

Welcome! We are always here to help!

Don't hesitate to ask if you have any questions or need any meal ideas!
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Carrie Faith

Diagnosed with Celiac Disease in March 2004
Postitive tTg Blood Test, December 2003
Positive Biopsy, March 3, 2004



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Posted 05 March 2005 - 09:28 AM

You know I have to say the same thing!!! I was very frusterated with all the no gluten stuff. I wasn't going to try it for a while. (putting my daughter on it) But I posted in the DH area about my daughters condition. And because of another parent who's child had the same problems...it gave me courage and hope that I could do this. I have been so excited to get my daughter well. She loves the new foods she is eating. And my stress is far less than a few months ago.

Thank you to this site TOO!!!!! :D
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4 yr. old Daughter with peanut, dairy allergy & Dermatitis Herpetiformis (not formally diagnosed)
1 yr old Son with egg allergy


Canadian Karen

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Posted 05 March 2005 - 08:19 PM

I'm so glad you guys have found us here.

There are a bunch of really great people here who are both very supportive and knowledgeable and are always willing to answer any questions you might have.

Welcome to the forum!

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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."



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Posted 05 March 2005 - 11:12 PM

I too live alone and in a area where gluten is rarely known or understood. It has been a long learning curve but after two years of perserverance things are nearly under control. One word of warning is after being gluten free for a long period of time and then make a food error the after affects are more severe then previous attacks.

Good luck and keep trying. It does get easier.

Chronic :D
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Posted 06 March 2005 - 04:01 AM

I was diagnosed on 9/04 too... most of my family is clueless too and really don't have the drive to figure it out for me... I was pissed about that over thanksgiving but I've come to a far better place about it. Hey its my disease and my issue and they all have their own problems... I decided I can stay mad at my family forever or just do what I have to do. So I choose to love them and I'll deal with my Celiac issues.

I tend to think every that happens to us in our lives will turn out exactly how we embrace it. If you think having Celiac is a pain or hassle, thats exactly what it will be. If you look at it like a new challenge then thats what it will be.

Someone (I think on this list) said they were so glad when they found out it was Celiac and not some terrible disease.. heck this can be controlled with diet, so essentially its curable. My brother has mouth and tongue cancer.... he has 4 months to 4 years left (odd time table, I know) so in comparison to that, wow did I get off easy!

If you look at it like a path to good health its just easier. If you decide to go totally gluten-free keep in mind you will have slip ups, I've read of some on this list by people who have had Celiac for years... it happens but its no reason to get depressed, you just learn from it and go on! Enlist your boyfriends help... I did that with mine and he is so supportive, he goes to bat for me all the time in resturants and he carries a gluten free card I made on my computer with him so he can show it to the chef at resturants..

You can do this, its not so hard. Also if you have a Whole Foods market around you (check on their web site for locations, they are really almost everwhere) they carry gluten-free baked goods which are really tastey (and lots of other gluten-free stuff) I drive an hour to get to the closest one but its way worth it for me.

Best, Susan
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Posted 06 March 2005 - 09:31 AM

Those are all good points Susan. I've been gluten free for over 15 years and there are still slip ups. When you live in a gluten world, it's impossible to avoid them all. When your family or friends get annoyed when you question something. Just explain that it is your responsibilty to look after your own health (diet), and your health depends on double checking everything that goes in your mouth. You are not doing it to affend anyone. After all, we can't go out and enjoy activities with them, if we are in the bathroom ill! :o
Hang in there and stay healthy!
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Posted 06 March 2005 - 05:55 PM

:D welcome mike'speanut. This is an awesome forum with great people who are willing and available to give support and advice.

We're in this together and here to help.

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Working towards wellness.
gluten-free (or trying to be) since December 1st 2004

positive blood test - Oct. 2004
positive biopsy -Nov. 2004

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