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2004 Feedback

Date: Thu, 22 Jan 2004 09:48:56 -0500

I found out that I had celiac sprue 3 years ago. I just wanted to thank you all for such a great web site. Of all the places on the web for celiac I find yours the most informative. I learned things here that I havent found anywhere. I signed up for the free news letter and I will visit your site regularly. Thankyou for helping me understand more what is going on with myself. Lets get more doctors aware of this as I have had systoms of this disease sense since the age of 16 ( I am currently 33) I am very poor I wish that there were more enexpensive alternatives to replace the foods I now cant eat. Thanks to your site I realize that I need to save money to get tested for type 1 diabetes. Thankyou again for your informative site.
Christine Thomas

Subject: Article in Feb. 04 Readers Digest
Date: Sun, 1 Feb 2004 10:39:17 -0800

Hi Scott-

Your work on is greatly appreciated! Im a long-time nurse (42 years) and the grandmother of 4-year-old Katie who was diagnosed shortly before her 3rd birthday by her mother (my daughter). Katies diagnosis has not been confirmed by an official lab test or procedure, but it is obvious by her symptoms. She has been on a strict gluten-free diet since we first became aware of her problem. Contrary to my wishes and advice, they chose to continue with the diet and have her tested when she is a bit older. I believe this is based on the fact that Katies dad is in a bit of denial, thinking she will outgrow it.

Keep up the great work!

Date: Sun, 08 Feb 2004 11:31:37 -0500
Subject: Rice Beverages

Dear Mr. Adams:

I first want to express my sincere appreciation for your website. Because of the information it provided, I was able to diagnose the cause of my daughters asthma and skin rashes. In addition, I have cured my own, chronic bronchial and sinusoidal infections. THANK YOU!
Robert L Fireovid

Date: Thu, 12 Feb 2004 17:50:00 EST

Hello Scott, I want to tell you how absolutely fabulous your newsletter is. THANKYOU!

Yesterday, I received an e-mail about subscribing to the newsletter. I assumed that
because I am a subscriber, my subscription must be running out so I renewed for
another year. Please check to be sure the renewal that I did yesterday will extend my
current subscription. Thank you again for a fabulous newsletter.

Laurie Whitehill

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Date: Fri, 14 May 2004 07:53:44 -0500
Subject: Re: Update Update Dear Scott,

It never ceases to amaze me...the information you provide lines up so well
with our experience with gluten intolerance and numerous issues related.

The article Are Commensal Bacteria with a taste for Gluten the Missing Link
in the Pathogenesis of Celiac Disease? by Roy S. Jamron is excellent. I
believe you have hit on the biggest breakthrough with celiac disease and
gluten sensitivity...that being the role of bacteria.

This bacteria issue is something Ive become well familiar with in our search
for answers for myself, our daughter and a friend. In my case, Klebsiella
pneumonia and Helicobacter Pylori were present, in our daughters case and my
friends case, no pathogenic bacteria was found. But, in each of our
situations, we were lacking adequate amounts of friendly bacteria
(Bifidobacteria and lactobacillus). I believe this is the missing link.
Perhaps not the presence of a pathogenic bacteria, but simply the lack of
healthy bacteria. Each of us had been prescribed numerous antibiotics in the
past as well.

Thanks so much for the work you do. Great Job!

Grace and peace to you,

Bonnie Hafeman

Subject: Re: Free Food
Date: Wed, 1 Dec 2004 05:21:31 -0500


In 1996/1997 I was dying. I was around 31 years old. I had gone bankrupt, could not hold jobs, and was close to destitute. I could only work two days a week and was living in a small one bedroom apt. I had accomplished nothing in my life that I wanted to, never had a girlfriend (sick all the time), and was starting to lose my eyesight from bleeding in the back of the eye. When I went to the toilet, and I did often, it was all water...and nothing was digested. My stomach grew out like the children in Africa who starve does.

I knew I would not last long. My goal was to get better so all I ate was healthy food. Lots of grains- wheat, rye, barley, etc- in soups and other ways...and I was failing. It was all I could do to work those two days to pay the bills as the rest of the time I spent in bed or near the bathroom.

I remembered my mother saying I was sick as a very young child (one or two?) and after many specialists they could find nothing wrong and I was dying. The Doc said try taking him off gluten for a few months and see. It worked, I did live. But I was never really healthy...and never near 100% in studies or attention.

As I lay there realizing I would be dying soon, I looked up gluten on AOL...and your site came up first. I saw the symptoms (a few of which were mine such as diarrhea, ADD, lethargy, and the like.) and I realized I was on to something.

The next eight years have seen vast improvements in some parts of my life. I am slowly getting at goals I have been yearning to do for decades (such as the website, originally a magazine). Unfortunately the test has been not bingeing and realizing the community is wrong. I am now in the midst of the 14th day free of ALL grains. Only fruits, vegetables, meat, and water have gone into me. I am feeling much better for the first time, though still run down. I cannot eat anything except basic food groups or I think I will never get away from the addiction, for addiction it is.

Although I am struggling now financially I am still healing and find I am able to work more than I was even 4 years ago..

If anyone needs to pay someone it is I paying you. As I said in a letter once, your site changed my life and I have spent many an hour talking to people to help change theirs too. All I can say is my political aspirations revolve around the truest sense of making the world better and helping all people. If I ever get to a state or federal level you will hopefully feel proud that you were part of it and any good that I can do while up there.

Thanks for everything.

Bob Hoffman welcomes your comments below (registration is NOT required).

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