2001 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.
Your sight is the most informative and easy to navigate that I have encountered.
In less than one hour I have found links, advice and basic
helps to questions that I have been unable to answer. My 10 year old son has hypogammaglobulin Anemia, he was diagnosed with celiac sprue 3 years earlier. Since that time, we have felt he did not have CS...even though our son is doing well, he is not growing and often does not feel well. I will pursue CS again to make sure it was truly a mistake. Our 6 year old son will be going in for tests on January 5, 2001. I had not considered food to be the source of his asthma, respiratory or skin problems, but your sight has made me rethink what I am going to discuss with the Doctor. I am also in the process of testing. I had no idea Lupus, Sclerederma etc. were common. I have both. I have been trying to do a gluten free diet on my own and I actually feel better than I have for a long time.
I feel our families plate is full without adding to it, but
your sight is the ray of sunshine I need to get us through and realize
it isnt so bad. Thank you so very much.
Subject: Thank you
Date: Tue, 16 Jan 2001 14:41:52 -0600
Just wanted to say thank you for your work and information re. gluten. It is great. Thank you.
Date: Fri, 2 Mar 2001 10:20:24 -0500
First let me say that you are a life saver!!! I mean that literally -- YOU SAVE LIVES! The knowledge and information that Celiac.com has provided is amazing and very sincerely appreciated. Through the use of Celiac.com, I was able to determine that my husbands undiagnosable skin condition was DH and that he has CD. I am sure youve heard the stories before, but in my husbands situation, the doctors we visited (Primary care physician, Dermatologist, G/I specialist) had no clue. But something in MY gut (no pun intended) knew that it was DH and CD. After having to sell the GI specialist on celiac disease as a possibility, he agreed that my husband should have his blood antibodies checked to rule out celiac disease (and to shut me up). Sure enough, the test came back clearly positive. And we (me too) are now on our new adventure of a gluten-free diet for life.
Thank you from the bottom of my heart!
Michelle A. Straub
Date: Tue, 1 May 2001 08:28:49 -0700 (PDT)
From: carol poe
Subject: just a word of thanks
Hello my name is Carol Poe, my husband has celiac, and I would just like to tell how much I really appreciate your site. We only just recently found out about celiac and your website has been a great help to us. I read your bio and it sounded just like my husband. We had wondered if we would ever find out what was wrong with him, but thank God we did. He felt completely alone and now he sees he is not. This has been going on for so long his own family (on mothers side) has called him lazy and treated him very cruelly. Now we finally know whats going on and he is a completely changed man. His dads side of the family is truly grateful also for we feel there are several people who have it on his dads side, even a brother who had diabetes and complained all the time about his stomach until he died just over two years ago. If he had celiac then I can only imagine what could have eventually happened to my husband, I owe you more than I could ever afford.
Date: Thu, 3 May 2001 00:27:38 EDT
Scott, I appreciated your level-headed response. It is extremely disconcerting to read some of these allegations, particularly since I have a
21 year old celiac daughter who is just finishing a third year abroad program in England and who, after much thought, made the decision to follow the guidelines put forth in The (English)Coeliac Societys booklet of safe foods, which of course includes Codex wheat starch. She is completely asymptomatic, on the outside anyway, and thus does not know if/when she has ingested gluten, but is extremely diligent and was advised before going by someone whose daughter is extremely symptomatic that the daughter had no problem whatsoever when doing HER year abroad. Our daughter (like the other persons daughter) has found living and eating there much easier than here in the U.S. Ours is also a Type 1 Diabetic. Anyway, I have worried enough about her being there; to have the additional worry about the wheat starch has been unsettling. Thanks. Bev, outside Chicago.
Date: Fri, 04 May 2001 21:27:53 -0700
From: Fred Tanner
Subject: re your website. celiac disease.
I am the 77yr old father of an adult daughter who has just been diagnosed
with Celiac disease... my curiosity about her condition led me
immediately to your web site.... I just wish to compliment you on this effort... had no idea that so much information could be made available
by a single individual, and you are doing a very great thing for those of us to whom this condition is not only unknown but totally
baffling. Thanks. Fred G. Tanner.
Date: Tue, 8 May 2001 20:22:36 EDT
Id like to send my thanks for your web site and the great service it
provides. Keep up the good work there are a lot of us out here who depend
all that you do.
Subject: feed back
Date: Mon, 14 May 2001 21:55:19 +0100
Thank you for a very informative site, Ive found more answers in a few minutes than I have in one year from my sons consultant, thank you.
From: LORRAINE NEDELL
Subject: reiders syndrome
Date: Thu, 17 May 2001 02:28:25 -0400
Your website has saved my friends life!! The doctors didnt have a clue why her weight had dropped to 67 lbs. I found your website, a blood test was done and it looks like she is on her way to recovery. After only one week on the diet her pain level has dropped significantly. Thank you.
Date: Fri, 18 May 2001 12:45:01 +0000
From: Sarah Rudisill
Subject: THANK YOU!
Thank you so much for this site. You have saved my life! Literally! The
doctors only tell you so much. There are other sites out there that are
giving false information that if I relied on those sites I would be constantly
sick. I visit this site every couple of days & have ordered from the
mall! I thank you for your scientific postings. I thank you for your safe & forbidden lists. I thank you for letting me know that there are others
out there. I thank you for enabling me to be able to handle this. Ever since I found out I may have celiac sprue - all the test results are not back yet - I have researched & used this site as a guide. I feel like a while new person. So THANK YOU!
I wish there was something I could do for you.
All my gratitude,
From: Uerz, Lori
Date: Tue, 29 May 2001 09:01:51 -0400
Dear Scott: Just wanted to thank you from the bottom of my heart for producing
this web page every month. When my son was first diagnosed I
spent weeks calling and writing manufacturers about the gluten content in their products. This website is like a life-line for me and I just can not
thank you enough for your time and effort on behalf of people with celiacs disease. My son will be turning 6 in a couple of weeks and has been very successful on the gluten-free diet for a little over a year now and while he has other special needs (Down Syndrome and irritable bowel syndrome), at least I can know that anything I need to know about celiacs I can find out here at your website.
May God bless you & THANK YOU!!!!!!!
Lori Tatsapaugh Uerz
Subject: web page
Date: Wed, 30 May 2001 09:10:35 +1000
I just want to thank you so much for your web page. I have just had to go gluten and dairy free after a long illness and was struggling to find information and someone to answer my most basic questions. Your web site has answered all my questions along with valuable information that I would not have known.
Date: Wed, 1 Aug 2001 21:04:31 EDT
Subject: celiac in children
My son is 12 years old. He has had a bowel problem all of his life. The doctors just took a test and found out what he has. He is an ADD child also. I am so dissatisfied with how we were treated by so many pediatricians. They told me that my child was lazy and that he should be potty trained by now.
After so many missed diagnoses it is good to know that my child is
indeed not lazy and has celiac disease. He has been through the ringer,
treated for diarrhea, constipation. He has had several enemas and rectal exams that I have to lie when it is time to go to the doctor.
Thank you for this informative website. I look forward to receiving your newsletter for the first time.As always, Celiac.com welcomes your comments (see below).
Get FREE Celiac.com email alerts (1-3 email per month with the latest celiac disease research and information, gluten-free recipes, etc.).