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2005 Feedback

Sent: Sunday, January 23, 2005 9:01 PM
Subject: Celiac? Whats that??

I entered wheat gluten in Google, I was amazed by the information that I got from some of the web sites on celiac disease. Ive been X-rayed up, down and all around, all kinds of tests for everything you can think of during the last 25 yrs. Ive been diagnosed with Grovers disease, atopical dermatitis, my legs itched (excruciating) for over a year, my skin is easily bruised. Im borderline anemic. Huge amounts of gas (flatulence) and several more signs, symptoms, all related to celiac disease AND not one M.D. has brought up the possibility of celiac disease, let alone test for it! After going on a gluten free diet a few days ago,(and dairy free) Im feeling a lot better. No more gas attacks, no more belly pains etc. Thanks to CELIAC.COM Im getting my life back. Bob Thompson

Date: Sun, 30 Jan 2005 18:34:25 EST
Subject: info request

Dear Scott,
I am a Registered Nurse. i work with the developmentally disabled. There have been quite a few of our patients with Down syndrome, that have been tested positive for Celiac disease.
I am putting together a presentation on celiac disease for our staff. I found your website to be very informative and easy to navigate. Please let me know if you have any further resources for me .
Thank you
Maureen Gavin RN,C CDDN

Subject: RE: Request for permission to reproduce selected information on
Date: Wed, 9 Feb 2005 15:52:48 -0500

I would also like to take this opportunity to thank you for your efforts in producing web site. Seven years ago my symptoms became sever enough that I could no longer work on a regular basis and I started what turned out to be the long process of finding the root cause of my illness. I lost count of all the doctors I saw. I lived in pain from colitis and other side effects of celiac. Several doctors labeled me a "drug seeker" and discounted anything being wrong with me. At some point I decided that I needed to be proactive in my own diagnosis and started research. My wife first came across celiac disease and after eliminating some other candidate illness I insisted that I be retested for celiac which came back positive. Even then I found that I had to "educate" my own doctors about the illness and actually it took my own recovery after starting a gluten free diet for my doctors to accept that this was indeed the problem. was an invaluable resource during this period. Had I not had your site available, I do not know if we would have put all the pieces of the puzzle together and might still be searching. While not full recovered, I am making progress. I never dreamed how difficult it would be to eliminate gluten from my diet, nor how sensitive I would become to contamination. Most of my contact now comes from things like obscure additives in foods and health care products. The lists you have provided at have become invaluable to me. Thank you and I hope that I can help make this information available to others that need it. I know that others in my family also suffer from some degree sensitivity to gluten and has suffered all there lives from the results. I am convinced that my mother died from complications caused my it. She died of cancer some years ago. While I will never be certain of this, I can take steps to prevent the same thing happening to me. My daughter also shows some signs of being gluten sensitive. Perhaps she will not have to go through what I have, and you have played a big part in this. I know how much effort you have put into making this web site and maintaining it. You have given much and I want you to know that this effort has not been for naught.

Thank you again,
Paul Montgomery

Subject: Thank you
Date: Tue, 29 Mar 2005 13:45:36 -0500

Just wanted to say thank you for a great site. I am adapting to the gluten free diet. Your listings and several resources are perfect and clear. The site is easy to negotiate. I cant thank you enough.
Margaret Collins

Date: Tue, 26 Apr 2005 07:07:24 -0700 (PDT)
Subject: Re: Update

Great issue, Scott! Thanks for all the hard work you do. I was diagnosed
almost 9 years ago and there wasnt nearly as much action as there is now. I
truly feel this diagnosis is a gift for long life and good health.
Norie Erickson

Date: Thu, 5 May 2005 09:44:05 +0200
Subject: Re: celiac&depression

Dear Scott, as you might imagine, I was hit by the gluten free experience (why would I otherwise have sent you this abstract?). As many others, I stumbled into your site by chance, and, wow, there was not only the story of my own life, but the story of my whole family ... Ive been gluten-free 2 months, man this is the most exciting&interesting period of my life.

This gluten thing is HUGE, and its coming towards us like a tsunami ... can you imagine, when people collectively start to understand, the cause of ALL our cultures health problems ... IT WAS THE WHEAT STUPID !

Youre making revolution! Fantastic work! And thank you for saving not only my life, but the lives of my 2 children, my 8 brothers and sisters, and my 16 nieces and nephews! And several friends, colleagues & neighbors Ive approached cause I believe they might benefit from this diet ... Of course they are not all gluten-free yet, but they now have the facts (theyre kind of pondering them), and as soon as they start getting really crappy, they now have a life-saving option!

wishing you the best, Ines

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Date: Thu, 25 Aug 2005 20:09:36 EDT
Subject: Re: HELP!

Thanks Scott, I have always meant to sit down and write to you, I truly appreciate all the help and guidance you have given me via your web site. I was diagnosed 5 years ago with Celiac Disease after a lifetime of terrible health, starting off as a failure to thrive baby, my health history is one disaster after another, many of them quite serious, a few life threatening. I was seeing 5 specialists for 5 inflammatory conditions to different organs by the time I was 48 and going down fast, I had a constant temp of 100 +and was burning up with inflammation, my immune system was just shot. I was lucky enough to have a very smart husband who found mention of the disease in the Lancet, we had the tests done and it was the best thing that ever happened to me, the world is a new place and I am pretty well most of the time. After finding your site I could buckle down to the work of getting completely gluten free, I have achieved that and while everything is still not perfect its a vast improvement, I no longer have to take the rounds of drugs, antibiotics, anti-inflammatorily, anti-virals, prednisone and cortisone enemas have stopped. You have truly been an inspiration as well as a friend from afar. Best regards, Kirsten

Date: Thu, 15 Sep 2005 13:56:56 -0700 (PDT)
Subject: Re: Update
From: Patricia Dillon

Date: Thu, 29 Sep 2005 13:52:43 EDT
Subject: Thanks

I simply wish to thank whoever has been responsible for providing this site.
I have recently come to believe that I am Celiac, and your site (through a friend), has provided me with alternatives that I didnt know existed. So, thank you very much.

Date: Fri, 11 Nov 2005 11:53:31 -0800
Subject: CORN PROBLEM????????????

Dear Scott,
I dont spend much time on the internet because of many reasons. However, whenever I receive an update from you, I am always pleased and enjoy the information that you dispose. It is so nice to know that there is help when you need it, in regard to gluten intolerance.
Thank you so very much for your response.
Terry Dellasala

Date: Wed, 7 Dec 2005 05:53:18 EST
Subject: Re: Message Board

Thanks so much. I wrote you for advice a while back Scott, regarding advice because I was so sick...not sure if you ever got it, just wanted you to know Im still having some problems but the Doc at the mayo clinic helped me greatly. If it were not for your board I would have never heard of him.

Date: Thu, 8 Dec 2005 18:04:01 -0800
Subject: Forum Subscription New Topic Notification ( Gluten-Free Celiac Disease Forum at

Who started and is responsible for maintaining this wonderful website? I would just like to say thank you to whomever you are. You have provided a source of great knowledge and encouragement to all of those who have been fortunate enough to stubble upon you in our quest to find answers, support and encouragement. I could not survive a gluten-free life without you.

Thank you from the bottom of my heart. Your efforts, and those of all the members of the forum are forever appreciated.

Because of the advise of others here and reading there trials and tribulations, I, after 15 + years have finally gotten some answers. And more importantly, my son will not have to suffer the way I did because I now know that you have to question your doctors, ask them for certain tests and be vigilant in finding the answers and causes to the symptoms.

Laurie welcomes your comments below (registration is NOT required).

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