1998 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. In 1998 I created The Gluten-Free Mall, Your Special Diet Superstore!, and I am the co-author of the book Cereal Killers, and founder and publisher of Journal of Gluten Sensitivity.View all articles by Scott Adams
From: Alan Sheffield
Id just like to express my appreciation for your effort and concern
in putting up this site. I dont know how many people its helped, but
idea alone is wonderful. Im glad to see that there are still people in this world that are concerned with others welfare. Keep up the good work.
I originally found out about celiac disease through this site. My little
sisters friend was suspected of having the disease. Her family had a
history of it, and her mother had asked me to find some information on it. I hurriedly read about it, and printed some information for her (she later found out that she didnt have the disease, and her reactions were unrelated).
Sometime later, I returned and read some more. My fanatical biology teacher
has assigned us to write an extended essay on a biological function/problem/something.
Ive looked around on your site, and several others, and am confident
that I will be able to find the detailed
information I need (the class is taught at, no joke, a college level--a little heavy for a Freshman, but it will save me time later).
Thanks again, and good luck!
Date: Tue, 03 Feb 1998 17:33:50 -0600
From: RM Molloy
Just a note to compliment you on your excellent site on Celiac Disease;
Unless you object, we would like to allow our patients to link to your
site through our own site under a section on our webpage entitled Patient Support. We are a group of 6 Gastroenterologists in Milwaukee, Wisconsin (Milwaukee GI Specialists, S.C.). I will email you again when our site is up and running. Congratulations on your excellent website!
R. Michael Molloy, MD
Date: Fri, 13 Feb 1998 13:43:39 +0600 (PAV)
We are doctors immunologists from Pavlodar Kazakhstan. We are involved
in the problem of different diseases due to intestinal and skin disorders.
We suspect that some of our patients have celiac disease. The matter is
that we have no available serological tests for CD. We would be very grateful
to you if you provide us with email addresses of the institutions distributing
laboratory kits for CD. We like your web site very much. We think it is
interesting and useful not only for celiac disease patients but for medical professionals
Thank you very much.
Doctors H. Junusov and M. Valivach
From: Judy Parelman
Date: Mon, 23 Feb 1998 22:08:51 -0600
Thanks for all of your hard and diligent that you do regarding this web
site. I have found it to be an enormous help. In fact, I cant imagine
how much more difficult it would have been to function with out all of
the info I have learned from you.
Date: Fri, 17 Apr 1998 00:02:02 +1200
Subject: You beautiful people
Wonderful, Marvelous, I believe that you should all be awarded first
prizes. Keep up the good work great. Im not a coeliac but my brother
He was rescued from death by a coincidence. After being tested for coeliacs in 1988, the test came back negative. He went on to suffer very severe symptoms, with no apparent change needed to his diet. His bones started to break, he broke his back and was admitted for psychiatric treatment because everyone thought hed become a obsessively depressed person. Nobody tested for coeliacs again until 1991. At the end of the day, the first test from 1988 proved to have been misread by the laboratory or doctor or someone and the results then, if they had been interpreted correctly, would have saved my brother from severe health disorder, financial ruin and a marriage breakup. After all, who wants to live with a dying depressed bankrupt.!!!!
After the second test in 1991, it was discovered that my brother had coeliacs and his gluten free diet has brought him back from the dead. Hes alive again and trying to put his life together again. Its not easy. As his brother (and accountant) Ive been able to keep him afloat and out of the clutches of the IRS etc. But when things went bad, I wasnt there (I lived on the other side of the world at the time). In short, weve been able to pick up most of the pieces together since 1992 although I must admit, its still hard going at times.
I am absolutely shocked that coeliacs is not more widely known. Thats
certainly not your fault as you people are doing excellent work by
keeping the celiac.com together. Keep it up. You have our support. Where do we send a donation !!!!!
Ill keep browsing through your site and looking for more info. Once
again... great stuff. excellent.
Keep it up. Thanks a million bye now regards,
-Peter van Bussel
Subject: Great Job
Date: Mon, 1 Jun 98 07:31:54 -0000
From: Connie Pearce
Scott, youre doing a great job. Your Celiac Web Site is
extremely helpful to all of us. I just wish you had that magic cure you
could pull out of the hat to help us all. But who knows, maybe when the
medical professionals become better listeners and are better educated,
might just be a cure. Thanks again,
Keep a Positive Thought,
Date: Sat, 13 Jun 1998 12:59:21 EDT
Two years ago I was really sick, was going down the usual diagnostic
pathway with a colonoscopy etc., having all the tests come back negative
but still feeling very ill. I started with a search for IBS info and arrived
at your site via that pathway. As soon as I started reading it, I realized
my symptoms exactly matched those described. With NO help from the doctors, but a lot of help from your site, I correctly diagnosed myself with CD. I couldnt agree with what you said above more. The LISTSERV wouldnt have helped me then because I didnt know I had CD. Keep up the good work Scott, you are doing more good probably than you know. Thanks so much for the help. You may have saved me months, maybe years of misery!
Date: Tue, 9 Jun 1998 17:18:54 EDT
I agree with you and two years ago when I was put a gluten free diet by my skin doctor for DH, your web site was the first one that my husband found for me and it was so exciting to print up all the interesting information you provided on my condition. I was so excited! I was not interested in learning how to access information on my own until last September when I was diagnosed with Celiac by intestinal biopsy and felt I needed to meet people like me. That is when I learned how to join the Listserve and have since then looked everything up by myself.
I still am thankful to you and your website and still enjoy the updates
you send to me. I look up every update and many times will print them
up for my files.
Thanks, Barb from NE Ohio
Date: Tue, 9 Jun 1998 00:04:34 EDT
I dont have count of the number of times I have felt better knowing that there were sites such as yours which could help me in gathering more
information....and comfort...during the past year and a half. You are one of my heroes!
From: Mary A. Halas, Ph.D.
This is an overdue thank you for your web site. I have used it so many times in the last three years and it is well-written and invaluable.
Date: Mon, 13 Jul 1998 14:16:02 -0600
From: Shani Byrd
Im a registered dietitian who works at the Air Force Academy. Your site
has been extremely helpful in instructing my clients on their
disorder and in helping them know how to treat it via diet. I think the information you provide is sound, accurate, and extremely useful and
practical I can only hope that dietitians all over the country find out about your site and use your valuable information. Thanks again!
Lt Shani Byrd, RD
USAFA Health and Wellness Center
Date: Fri, 31 Jul 1998 08:35:05 EDT
God bless you for the time energy and expertise you put into your web site. It is the best on the Internet and I know you are helping thousands of people all over the world.
Date: Sat, 15 Aug 1998 05:03:51 -0700
It has been a while since visiting your celiac site... it is still the
best on the net, thanks!
Date: Wed, 26 Aug 1998 12:23:06 EDT
Subject: Thank you for a new Life Scott
In ones life, there are few times when a person comes along who profoundly changes them. I ran across your web site around 5/26/97 and realized that I was a celiac. I was diagnosed as a baby, taken off grains, then put back on. I lifetime of intestinal problems (and no medical advice) has been hell. I have been fighting what i can only call grain addiction, but i am making headway.
I can never pay you back for the door you have opened for me, and i shall
never forget you. Inspired by you, I have changed quite a few lives already
and am working on more. My life long goal is to be in politics on the
federal level. You can be sure I will be there, fighting the ignorance
of this disease, which i no longer believe to be a disease,
but I believe it is a fundamental diet change that all humans should consider.
Thank you O Great One...
Robert James Hoffman
From: Cynthia Rudert, M.D., F.A.C.P.
Subject: Celiac Disease
Date: Wed, 16 Sep 1998 13:54:40 -0400
Congratulations on your wonderful Web site for Celiac Disease. It has been an incredible resource for my patients. I am a board certified gastroenterologist specializing in Celiac Disease in Atlanta. Presently I am following over 100 patients with gluten sensitive enteropathy. I am
also the president of the Gluten Sensitive Support Group of Atlanta and I lecture nationally. If I can help you or anyone with questions regarding
Celiac Disease, please let me know.
Cynthia S. Rudert, M.D., F.A.C.P.
President Gluten Sensitive Support Group of Atlanta
President and Founder of the Atlanta Womens Medical Alliance
From: Zeca Martins
Subject: From Zeca Martins- Brazil
Date: Fri, 2 Oct 1998 01:41:09 -0300
I hope you remember me. A few days ago, I wrote about my son, Miguel. The information you sent me were absolutely GREAT. The e-mail os ACELBRA belongs to Almir, a guy that lives A FEW BLOCKS AWAY FROM ME. And thats not everything: he told me about the only place here in São Paulo were I could find gluten-free pasta, and his wife started a small bakery of gluten-free breads.
So, Miguel started to eat his own pasta and bread for the first time after the diagnosis, without pain or diarrhea. That was a great experience to see him eating pasta and thousands of bread slices. He didnt even look around. Well, we all felt something strange in our throats, you know... we almost started crying.
Now, I and Almir are trying to start something greater, helping ACELBRA to improve its efforts. I mean, we are planning a series of activities involving press releases, advertising (we are both publicists), the creation of a complete internet site (something as you have been doing, but in Portuguese) and so forth.
Thats all by now. And THANK YOU VERY MUCH again. God bless you and all those people who help each other.
Date: Wed, 25 Nov 1998 20:47:11 EST
Subject: The Celiac page
Just a note to say that your page - the way it is structured, the simplicity
of the excellent graphics and, above all, the wealth of useful information
that it contains has to make this the finest site I have ever encountered. My sincere congratulations.
I found it when I searched with just two words - gluten and neuropathy. I have been diagnosed with CIDP -Chronic Inflammatory Demyelinating Polyneurpathy - and after months of the Neurologists knocking down my immune system with all the guns they can find they still have not stopped the cells producing whatever antibody it is that is attacking the myelin sheath.
I have the idea that it is related to what I have ingested most of my
life but that doesnt appear to wash with the experts. Hence my interest
site. Again - a fantastic job - it was certainly a help to me and I am going to go ahead with the serological tests. Doesnt seem like much to loose.
Date: Sat, 05 Dec 1998 05:56:06 -0800
From: Richard E. Jeske
Subject: Thank You
Thank you for the excellent information on your site. I used the lists
of safe and forbidden lists to get gluten free and my symptoms of
fatigue and exercise intolerance were gone in 24 hours. Over the last four years I have slowly lost ability to function to the point where I could no longer work and am on disability. During that time several doctors could not diagnose the problem and had a diagnosis of chronic fatigue syndrome. When a friend mentioned Celiac may be the problem, the symptoms on one of your pages matched mine.
I have had the best 4 days in recent years and plan to be back to work
in 2 weeks. Staying gluten free is a small price to pay to having my
life back. Thanks Again,
Date: Sat, 12 Dec 1998 20:56:17 EST
Scott - many people do not realize you are a real person. Your service to celiacs is fantastic and during this holiday season, we all want thank you for the marvelous job you are doing.
Lets hope more doctors read your page and test more people. Many people are devoting all their spare time to GETTING MORE CELIACS DIAGNOSED and we are thankful for the help you are giving in this effort.
Thanks for a marvelous service. Keep with it!!
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