2002 Celiac.com Feedback
In 1994 I was diagnosed with celiac disease, which led me to create Celiac.com in 1995. I created this site for a single purpose: To help as many people as possible with celiac disease get diagnosed so they can begin to live happy, healthy gluten-free lives. Celiac.com was the first site on the Internet dedicated solely to celiac disease, and since then it has become an invaluable resource to people worldwide who seek information about celiac disease and the gluten-free diet.
In 1998 I created The Gluten-Free Mall, Your Special Diet Superstore! which was also another Internet first—it was the first gluten-free food site to offer a shopping cart-style interface, and the ability for people to order gluten-free products manufactured by many different companies at a single Web site.
I am also co-author of the book Cereal Killers, and founder and publisher of Journal of Gluten Sensitivity.
Date: Mon, 21 Jan 2002 12:04:04
Subject: Thank You!
Thank you for your excellent
website! One of my wonderful California cousins, Steve, found your website
back in 1995 when I was newly diagnosed with celiac disease so thats how I learned
about your www.Celiac.com! I just got hooked up on e-mail as of last Wednesday!
Could a person get any slower than this!!! :) Its a MailStation thing
without a PC. Thanks for all that youve done and continue to do for us
fellow celiacs, Scott!! Ive been spreading the news about your website
since 1995 here in the Fargo (ND)-Moorhead (MN) communities!
Date: Fri, 29 Mar 2002 08:16:53 -0500
A friend of mine has been suffering
for about three years. Her story is almost identical to yours. Yesterday
her doctor asked her how much bread she was eating, A lot, she likes sandwiches.
The same doctor she has been going to for years in addition to the specialists
he has referred her to. I think he has just discovered Celiac Disease.
He never asked about bread before. In any case I got on the Web, started
searching and found your page. I feel so confident that we have found
the problem and that she will finally get some relief. If he doesnt run
the proper tests we will find someone who will. Thanks for your Web Site,
now we have some direction.
Have a good day.
Subject: Celiac running for office?
Date: Sat, 8 Jun 2002 01:22:12 -0400
I hope all is well with you.
I hope you are still running the site, I havent been here much over the
last year. I have sent many people to the site though. Scott, I am running
for County Commissioner in my district down here in South Florida. In
my political life I will try to spread the information about this disease
as best I can. My first step is to put it in my bio part of my campaign
page. It is a start. I referenced your site as the leading authority on
the web, and I hope that is okay. You changed my life, and where I am
now is because of your efforts and the whole internet thing.
Thank you, and I hope this news item is of interest to you.
Request for Information
Date: Thu, 20 Jun 2002 8:3:4 -0400
You have a fabulous web site with a wealth of information.
Thank you so much.
Subject: support group
Hello :) My name is Trisha Lyons. I am a registered dietitian and have celiac disease. Your site was a lifesaver when I first was diagnosed! I have been referring people to it ever since. Thank you!
Thank you very much!
Trisha Lyons, R.D., L.D.
Thank you for your wonderful site. It saved my life and the lives of my 4 children. Could you please add asthma to the list of diseases caused by celiac disease?
I cannot thank you enough!
All the best,
Date: Thu, 18 Jul 2002 13:19:25 -0400
Subject: Thank you !!!!
Thank you for your site.
I found out I was celiac because of your site, especially through Ronald Hoggans articles that I read four years ago.
It ended years (found out at 40) of suffering.
Thank you very much, you changed my life, actually you gave me a life.
Date: Sat, 2 Nov 2002 09:25:56 -0800
Hi- I was hoping to relay a message to Scott here......
My 12 year old son was recently diagnosed with Celiac Disease. Hes had abdominal pain since he was 2 yrs old, (when I quit nursing him) Hes been worked up, had an appendectomy, lactose intolerance tests, his doctor was going in the direction of Chrons disease and Kyle was going to be scheduled for a lower GI scoping. Hes been surviving the acute stomach aches with Donnatal and Tagamet..
I am so thankful to finally have changed doctors, Kyle had a blood test and now we have answers and ways to make his stomach pain manageable, and I am grateful for this web site. Thank you.
Sharon Barnes, Kyles mom :)
I too, have to tell you how really great your newsletter
obvious you put a great deal of time and energy and love into the
preparation of it. The most important thing my Doctor told me to do when
I was first diagnosed with Celiac disease, next to taking all gluten out
of my diet, was to learn, and learn and learn as much as I possibly could
about the disease. Your newsletter is so full of useful information, I
cant wait for the next issue to come out.
Thank you for a job, very well done.
Date: Tue, 12 Nov 2002 14:01:25 -0600
Scott, I want to say thank you for your newsletter. It has
helped me so much. Im not sure I had Celiac Disease but the symptoms
you described for yourself really fit me, from the pain in the right side
to the off and on diarrhea. I did not have the weight loss associated
with the other symptoms, but I had something and the research I did has
enabled me to not have it any more. When I got rid of gluten I got rid
of more than the digestive problem I was having.
For instance, I WAS diabetic for 4-5 years, and when I went on the gluten free diet, my blood glucose counts went down, down, down - now Im normal ! I WAS about 30# overweight, but began to lose weight and the 10# I lost has made a difference.
An interesting observation about the doctors and diabetes - neither of mine ever sought to find out what caused it. They simply treated the symptoms ! "Your mother had it?, your father had it? Now you have it."
I notice that our local grocery has put in a health food section and they carry a lot of gluten-free items. To me that means there are a lot of people who are discovering this health connection.
30-40 years ago I read (I think it was Adele Davisbook) that when the big bakeries started up here in the States, we all started using highly refined wheat products and that has led to a lot of health problems.
I appreciate all the work you have done to help others, and I just wanted to say, Hey, Im one of them.
Thank you again.
Subject: questions from a newly-diagnosed celiac
Thank you so much for investing so much time into your website.
recently been diagnosed with celiac disease, I found the information on
your website to be far more comprehensive and informative than any other
source that I have. The nutritionist I have been assigned to does not even
have information that is as current as yours.
Subject: Re: Info? Help!
Thank you so much for your reply! I wasnt sure Id get a detailed reply, never mind a personal note. I greatly appreciate it! Thank you for the information regarding the health and life insurances, it is a blessing in disguise, one I hadnt thought of. Looking at it that way, even if I dont get the disability $$ I will probably still have saved.
Thank you for your website. It is solely because of the information and ability to network on your website I was able to get on track so quickly and get back to health and back to life! Thank you......
Date: Mon, 9 Dec 2002 07:25:28 -0600
Good Morning Scott,
I was especially interested in the Malignancy in Celiac Disease article, as my mother was never diagnosed with Celica but died from what was then termed a rare form of cancer. Her mother and sister also died with the rare form of cancer. We are now understanding that the probability that she had Celiac and didnt know it, lead to her death.
The doctors at M. D. Anderson, Houston, Tx told us her primary cancer was in her stomach not in her ovaries as was suspected. The doctors wanted my siblings and myself tested then, however we felt we wanted to bring our mother home as she was given 2 months to live. After caring for her until her death I put off having myself tested for any digestive problems. Later, becoming very sick myself I was checked time after time by local specialist who kept telling me I was just experiencing depression systems. Finally a young doctor had blood drawn, sent to Mayos confirming what he thought I might have. CELIAC!! biopsies confirmed that I had Celiac. I have been gluten free since and feel better in most ways.
My daughter was diagnosed with stage 2 of Celiac this past spring. She suffers from severe headaches, has juvenile diabetes, and Thyroid disease. The doctor tells her she has the complete triangle now.
Again, thank you for your very informative newsletters.
Keep up the good work.
Subject: Thank you
I want to Thank you for the wonderful and informative website. Its been a tremendous help to us after our 3 (now 4) year old daughter was diagnosed. We went through testing as you did, however, our daughter experienced seizures. Also, due to her immune system being so weak, she had pneumonia 2 times in 5 months. Then, she was diagnosed with asthma. I understand what its like to be frustrated with physicians who dont know what theyre trying to treat. We had a wonderful gastroenterologist that has helped out beyond expectations.
Thank you again for taking the time to have created this site.
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