Celiac Disease Member Introductions


#89

My name is Maegan. I am 21 and I have known about my CD since I was 9 years old. I haven’t always fallowed the GF diet and I started to get really sick again this year. After a long talk with my doctor I am trying the GF diet again. Hopefully this time for good. I am the only one in my family with CD and while they are all supportive of me, none of them really understand what its like. Between my grandfather always asking if i want to go out for pasta and my friends always cooking food they think is okay I’m finding it very hard to stick to the diet. I’m doing my best and looking for friends who are doing the same.


#90

2/13/08

My name is Ellen Gaffney, I live in Pennsylvania. i have had celiac disease for a year now. i do volunteer work for the Philadelphia Celiac Support Group. they are a fantastic organization. You have to join their organization for 25.00 a year but you get a lot of information for that 25.00. You get a huge folder with over 50 pages of informaliton about the disease. You get two newslettera a year that I am in charge of that has over 60 pages of informaiton. Articles on the disease upcoming research on the disease and recipes that I try out personally before submitting them. If anyone is interested in joining the support group please email me at thegcats@comcast.net. I can give you the information on how to get started. You do not have to live in Pennsylvania to join. they also have a celiac buddy list where you can get to know other celiacs andhow they deal with the disease. You also get celiac counselors to talk to to get the informaltion on how to get strted. thank you for your time

Ellen Gaffney
thegcats@comcast.net


#92

My name is Marie. I am 38-years-old and found out less than three years ago
that I have CD but in heinsight, I have probably had it for many, many
years. My physician did a full history and he too thinks I have probably
had it since I was in high school when I can remember having problems.
When I was first diagnosed, I was very faithful to the diet. It wasn’t
easy, as I went many years having whatever I wanted and then was being told
I could only have certain things. I stuck to it and started feeling really
good. So good that I started slipping and having non-GF things once in a
while, which spiraled out of control. The past year at least has been
horrible because I know it’s not good for me yet I still have a very hard
time sticking to a GF diet. It seems easy for a day or two and then it just
seems so inconvenient not only for me but everyone else I’m with, not to
mention expensive to buy separate food for myself versus what my family
(husband and four kids) eat.
So now I’m to a point where I want to get back to eating GF. I just don’t
know if I have the will power. I even started attending a Celiac Support
group here in Madison, Wisconsin. It’s wonderful but it’s only once a
month. Quite honestly, I wish they held as many support meetings as AA!
Good luck - I know it’s not easy!
-----Original Message-----
From: maeg [mailto:celiac-cpt2205@lists.careplace.com]
Sent: Tuesday, February 12, 2008 11:11 PM
To: marieann@phoneserv.com
Subject: Re: [celiac] Celiac Disease Member Introductions


#93

Ree,

It isn’t easy keeping on the diet, However it harding living with the
results. (as you probably know).

Our son has Celiac and my wife (who does the cooking) has finally learned
that it is much easier to make a single meal that we can all eat, with
exceptions that our son can’t eat.

I don’t know if you have stores like Trader Joe’s or Whole Foods out were
you live, but back east they are very helpful at identifying GF foods.
We have also found University of Michigan (I think) very helpful in
having a very comprehensive list of available foods. I hope this is
helpful.

Mick


#95

Hello there maeg my name is steve culp and I have CD I have had it for like 4 yrs now but its not as hard for me as for some I know because my dad has it also so I grew up with it but you just keep doing what you are doing and stay away from it but hear is a idea for you go to amazon.com and look at the gluten free food on there they have a lot of it. But you do need to stay on the diet becuse I had a uncle that did not stay on it and it killed him so be strong you sound like you can do it well talk to you later

maeg celiac-cpt2205@lists.careplace.com wrote:


#96

Thanks Mick!
I know I would be much more strict if it was one of my children on the diet.
I guess I need to treat myself the way I would treat them. I know I would
feel better! :slight_smile:


#98

I have had Coeliac for about 5 years and I am wondering how other people cope and what they are eating?. As there isn’t a great range of free from stuff in this area.