1997 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.
From: Jane Warner
Subject: Thank you & add me to the list
Please add me to your e-mail list. Thank you. Wow! What else can I say after skimming your site? What a lot of thought and work went into these pages, and to good account, too. They are very well organized. I found a wealth of information that will help me get a good test for CD. Thank you, thank you, thank you!
Date: Wed, 29 Jan 1997 13:26:32 -0800
From: Sue Metz
Subject: THANK YOU!
I dont even know where to begin....I only wish Id had this information on celiac disease 10 years ago, it would have saved me SO MUCH suffering and frustration (not to mention $$!!). Please add me to your e-mail distribution for updates. Thanks again!
Date: Sun, 9 Feb 1997 14:22:40 -0500 (EST)
I just wanted to drop you a short note to say how pleased we were to
discover the information about coeliac disease on your
My wife, Val, has very recently been diagnosed, but has probably been suffering from it for 30 years or more. At first, news like that is quite overwhelming and gives rise to a lot of confusion and seemingly thousands of questions. For us this was an especially difficult time as we had only just previously had confirmation that our younger son (14) was diabetic.
The information on Coeliac on your web site was the most helpful that
we have yet come across - and that includes what we have received from
our own health service professionals here in the UK - and
gave us more confidence about reverting to some sort of normality, which
we now think we are beginning to realize. Once again, thanks for your
efforts - they are much appreciated.
- Roger Brenton.
Date: Mon, 10 Feb 1997 00:44:03 -0600
From: John Gruber
Just wish to thank you for your website which I hit in April last year. I am Gluten intolerant and have suffered for many years. Thanks to you I can now say that I am almost restored. The doctors had no idea. Thank you.
Date: Wed, 12 Feb 1997 19:53:08 -0500 (EST)
Subject: To Scott Adams
Scott: Thanks so much for your original Celiac page! You literally saved my life. I had heard about Celiac disease on a TV program, but did not have the full picture of the disease until I hit your site in November of 1995. I had gone thru several doctors in an attempt to figure out what was wrong, including an endoscopy with a gastroenterologist. (My regular MD, who was completely stumped by this condition, asked me if I was claustrophobic!) I suffered with the symptoms of this disease for 2 long years, and within 2-3 days after dumping the wheat I was back to normal. After this ordeal was over, I began backtracking into family history, and quickly realized that my Grandmother had been plagued with this disease, and that my Father had the disease as well. He had been taking Dapsone from his dermatologist for 15 years for various rashes. I quickly put the pieces together and confronted his doctor with this new information. He appeared to be quite stunned by the findings. At any rate, my fathers stomach and skin problems, as well as my stomach problems were all cured your article. I had not experienced any of my Celiac symptoms until November, 1993, (at age 33), when the symptoms appeared after taking daily dosages of Nuprin for reoccurring headaches I was having. Has anyone else been affected by the Nuprin that also suffers from Celiac Disease? Also, have you noticed the irritating Imodium ads on TV lately? They appear to be directly targeted toward the celiac disease crowd. While the ads are portraying individuals in humorous moments, Im sure it affects Celiacs in a very negative way, and I wonder if there has been any contact by your group with the manufacturers of Imodium. Again, thanks for all your help. You started me on the road to recovery and I thank you for that.
Date: Tue, 11 Mar 1997 19:21:01 -0500 (EST)
You cant believe the journey you have sent me on! As a very small child I was diagnosed with CD. All my photos of me show a tiny 4 year old with an enormous abdomen. I guess I was lucky to be diagnosed so early. I ate tons of bananas (but that is another story).
Totally unrelated, at age 16 I developed a terrible skin disease which was finally brought under control in my late 20s with a medicine called Dapsone. I was told at age 16 that I had a disease caller Dermatitis Herpetiformis and it would last 15 years or so...wrong.
Many years later, at age 50-something I had a routine bone densitometry test because I began to see a small hump developing on my back. DX: SEVERE OSTEOPOROSIS! Now that was a shocker! I expected to hear early Osteo, but never SEVERE!
One year later, on the internet you, Mr. Scott Adams put it all together.
I cant believe the connections! My mother has severe osteoporosis and
arthritis, my daughter has multiple sclerosis. I am still in shock! When I added my name to your e-mail list, I couldnt even tell you how you
had connected it all for me. Thank you! You made a real connection for me!
Date: Wed, 2 Apr 1997 07:21:34 -0500
Subject: Celiac Website
The other day Cindy in NJ sent me an email in response to my query about dextrins and maltodextrins suggesting that I look at Scott Adams web site, Celiac Support Page. Its incredible and I cannot believe that I hadnt discovered it sooner. I highly recommend this to all of you as its clearly written and extensive. For instance, his Other WWW Sites that deal with celiac disease is 14 pages long when printed out!
That list of 4 pages is Safe & Forbidden Lists. From
there you can go to Whats New?, FAQ, Broad Overview of CD, Celiac in
the 90s, History of CD, Treatment for CE, Diseases Which Resemble celiac disease
and Related Disorders, Research Data on CD, etc. As I said the site is
extensive. If you have any questions, comments or additions for Scott Adams, you can
write him. This man has done us all a great service.
- Sarah Barnett
Date: Tue, 08 Apr 1997 11:40:01 -0700
Subject: Your site
I have entered your web site a number of times. You are certainly doing
a great service to celiacs and DHers. I imagine people get to your site
by searching key words and then it pops up. I talk to many new people who have done research on the Internet first and then find local contacts.
Also, you may or may not know that I am the new (since Oct. 1996) president of CSA/USA. Thanks. Again congratulations on all the good work. Keep it up! Janet Rinehart in Houston.
Date: Sun, 13 Apr 1997 20:56:49 -0700
From: Richard Tanasi
THANK YOU VERY MUCH ! I HAVE JUST BEEN DIAGNOSED AND YOUR LETTER ON THE HOME PAGE DESCRIBES WHAT I WENT THROUGH TO THE TEE. ON -GOING FOR YEARS.I HAVE SURFED THE NET AND BY FAR THIS IS THE BEST.IT GIVES ME PLENTY OF INFORMATION AND DIRECTION. I HOPE MY NEW DIET WILL WORK ITS TWO FOLD BOTH GLUTEN FREE AND LACTOSE INTOLERANT. THINGS COULD BE WORSE. AGAIN THANK YOU FOR TAKING THE TIME AND IF I CAN BE OF ANY HELP,LET ME KNOW. RICK
From: Kathleen Shipley
Date: Mon, 12 May 1997 21:30:02 -0500
Thank you so much for all the time and effort (not to mention money)
that you have dedicated to your web site. It is wonderful! You will never
know how much it has helped many, many people. My husband found it soon
after I was diagnosed. The doctor had diagnosed me quickly, but his information
was pretty worthless. Your web site explained everything and gave me hope.
Please add me to the automatic update e-mail list. Thank you very much!
Keep up the good work!
- Kathleen Shipley
Date: Wed, 21 May 1997 22:04:22 -0400 (EDT)
Subject: Please add me to e-mail list
We are about to start the diagnostic blood tests for our daughter . The
pieces of the puzzle may be coming together and we were wonder if there
is any link to heredity, as my husbands sister was considered years ago
to be lactose intolerant as an infant and has suffered years from unexplained
migraine headaches. There is an * after the reference to headaches as
a symptom. I could not find the footnote it refers to. Could you help
me find more info on it. This page may be very helpful to not only our
daughter who is 2 ½ years old and only weights 23 lbs. and is only 33
inches tall, but may also help her aunt lead a fuller life, free from
headaches. Thank you so much for the time youve spent in this endeavor.
I wonder if you fully realize how much it really means and the number
of people you may reach. Thank you again!
Date: Fri, 23 May 1997 22:03:58 -0400
From: Duane Kling
Subject: Just another fan letter !
I am so impressed with this site i cant even tell you. all the info
i have found is so easy to understand and so helpful .i have told so
many people about you in the past week . keep up the great job and i look
forward to your news letter that i already signed up for. thank you, thank
you, thank you !!!!!!!!!!!
Date: Wed, 11 Jun 1997 01:15:36 -0400 (EDT)
Hello Scott. First, I want to thank you for all the helpful info that
you provide about celiac disease. You have no idea how many you have helped with your
outstanding site. I have a nephew (age 3) that almost died before diagnosed at 18 months. His Mom (my sister) was diagnosed 6 months ago even though over-weight and asymptomatic. I have been printing and mailing them tons of educational material for about a month now. I live in Texas and they live near Windsor, Ontario, Canada. My sister belongs to the Tri-County group near Detroit (Jim Lyles group) as well as a small group in
Canada. The group in Canada does not have anyone on the internet and they have none of the latest info. My sister would like to share some of the
articles Ive sent her with the group members and is currently trying to set up an education committee. One thing we feel very strongly about is that everyone must always be told to verify info and be responsible for their own decisions. Personally, my sis is zero tolerance,
very strictly gluten-free (by USA standards).
Your info on related disorders has been enlightening, to say the least.
We have several family members that need testing. Our Mom was just tested
by a very good (celiac informed) Dr. and found to only have IBS. Sounds
fishy, I know, but he had a gazillion tests run. She is also diabetic(Type
2) and had colon cancer 10 yrs ago. She gets that awful test every year.
Anyway, we have about half of those disorders that you list in our family
members and, thanks to people like you, we know now that we must investigate
further. We have been helped so much by the net info that we cant help
but want to share with others who really seem in need. Thank you again.
We value your opinions.
- Diane Wright
Date: Fri, 13 Jun 1997 18:02:57 +1000
From: Bruce Gary
Hi Scott, just browsing for info on celiac disease. I got to say this is a really well designed site; uncluttered, logical, and to the point.
Congratulations, it says a lot about you.
Date: Sun, 22 Jun 1997 16:27:41 -0700
Because of contact with your page, I went on a gluten- and lactose-free
diet about a year ago and all my symptoms have disappeared.
Additionally, many other symptoms I didnt even recognize as symptoms any more because I had had them for so long disappeared.
Thank you for helping me make my life happy and meaningful after so many
years of terrible suffering while doctors simply showed me the palms of
their hands and then acted insulted when I cured everything by going on a gluten- and lactose-free diet.
You are a very special guy and I owe my health, vigor and freedom from
pain to you and Ill never forget that. You can count on that. If there
is ever any way you feel I could repay you for all youve done for me,
you have my address.
- Joe Clemens
From: Ruth Campagna
Subject: Thank you
Date: Sat, 19 Jul 1997 14:37:09 -0400
Scott, thank you for all the work that you have done to make so much
helpful information available to us. Just when youve been beaten down
one more doctor who has no clue, it is so nice to be able to hand them a copy of one of your articles with a smile and a suggestion that perhaps
they might find this information useful....and you dont feel so alone.
Date: Mon, 18 Aug 1997 18:14:06 -0400 (EDT)
I have just finished four consecutive hours on your web site and have bookmarked as much information as I thought I needed to help educate my
doctor, myself, and my family.....even our accountant will get drawn into this when it comes to tax deductions! I want to tell you that I am more than impressed with the quality and the quantity of the work which you have presented......and I dont impress easily!! It is just absolutely unreal, and I want to thank you from the bottom of my heart. You will never know how grateful to you and your efforts I am!!
Thank you for being in my life.
Date: Sat, 15 Nov 1997 12:09:39 -0500
Subject: Thank You
Dear Scott, I am a new celiac, (This year.) I live in a rural area and
do not have access to a lot of information on gluten intolerance. There
is a support group for my area, but it is 147 miles round trip on 2 lane
highways. I have joined the group but will not be able to attend much.
Your site is a God-send for me and I would like you to know how grateful
I am for your site.
Thank You; Sue Grupczynski
Date: Sun, 16 Nov 1997 10:49:15 -0500 (EST)
I read your deserved excellent reviews--may I add mine. The best overall
resource, and one I visit whenever you add new items
Date: Mon, 17 Nov 1997 21:38:48 -0500 (EST)
Subject: celiac disease
Please add me to your mailing list. You have no idea what you have done for my husband. If not for your page, I honestly believe he would not be alive today. He has not been able to work for the past 5 years. We hasnt had the money for him to see a Doctor. I have a friend whos son had celiac disease, she said my husbands symptoms seemed the same as her sons. By the way her son was diagnosed while on a business trip in Canada. I got on my computer and found your page, he is following the diet and buys gluten free bread and all the other gluten free products we need. We now believe that all the people in my husbands family have celiac disease. That was a year ago. I have created several recipes and altered many more. Recently, the husband of another friend, who has been very sick for years without doctors finding the cause, took the information I got from your page to her husbands doctor. He finally referred him to a gastroenterologist and was found to have celiac disease. He was 66 year old man who was down to 120 pounds at 6 feet tall. Today he is healthy. I know my husband needs to see a doctor but right now there is just no way. I am trying.
Thank you for doing what you do. We are more grateful than you will ever
Date: Thu, 4 Dec 1997 19:44:06 -0600
From: Dr. Noakes
Subject: Re: celiac list
I know that you are not expecting a reply to your email, but I wanted
to say thanks very much for connecting me to your email list, and also
think your web page is the best out of all the Celiac pages Ive seen. Looking forward to communicating with you,
Department of Physiology and Pharmacology
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