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2005 Celiac.com 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 celiac.com
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 celiac.com 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. Celiac.com 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 celiac.com 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: Celiac.com 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: Celiac.com Update
From: Patricia Dillon
THANK YOU FROM THE BOTTOM OF MY HEART...I HAVE HAD CELIAC DISEASE FOR 25 YEARS AND NOW MY 2 SONS HAVE IT. I AM SURE ONE OF MY SONS EMAILED THIS WONDERFUL WEBSITE TO ME. I WILL BE TOTALLY INVOLVED WITH YOU AND ALL THE WONDERFUL IDEAS, REPORTS ON CELIAC AND THE RECIPES....THANKS AGAIN, WE ALL THANK YOU


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.
Sincerely


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.
Thanks
Bridget


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

Who started Celiac.com 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

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I wanted to collect some of the info on NCGI in one place so that visitors who test negative but may still have an issue with gluten can be directed there. I'll add to this post as I find new links, but feel free to add or contribute anything you think may be of use! Matt --- Useful links: An overview from Alessio Fasano, one of the world's leading researchers on celiac and gluten sensitivity: https://www.youtube.com/watch?v=VvfTV57iPUY A scholarly overview from celiac disease magazine: https://www.researchgate.net/profile/Knut_Lundin/publication/232528784_Non-celiac_Gluten_Sensitivity/links/09e415098bbe37c05b000000.pdf A good overview from a sceptical but fair perspective: https://sciencebasedmedicine.org/a-balanced-look-at-gluten-sensitivity/ Another overview: https://celiac.org/celiac-disease/understanding-celiac-disease-2/non-celiac-gluten-sensitivity-2/ University of Chicago's excellent celiac site's take: http://www.cureceliacdisease.org/category/faq-non-celiac-gluten-sensitivity/ A compelling account in the British Medical Journal from an NCGI patient: http://www.bmj.com/content/345/bmj.e7982 Here's some positive news about a potential new test: http://www.medicaldaily.com/non-celiac-gluten-insensitivity-blood-test-392850 NCGI in children: NCGI and auto immune study: https://www.ncbi.nlm.nih.gov/pubmed/26026392 Also consider: Fodmaps: http://www.kcl.ac.uk/lsm/research/divisions/dns/projects/fodmaps/faq.aspx This Monash study: http://fodmapmonash.blogspot.co.uk/2015/03/the-truth-behind-non-celiac-gluten.html suggested some who think they're reacting to gluten should actually be reducing fodmaps Sibo: http://www.webmd.boots.com/digestive-disorders/small-intestinal-bacteria-sibo

I was just diagnosed in March and I totally feel you. I'm having a hard enough time with determining which lip glosses are safe, let alone all my face products etc. I feel like this 'grey area' is the biggest annoyance with Celiac. So many foods/cosmetics I thought were safe after reading the ingredient list are actually not safe at all! One website says it's safe, one says its not. All these unfamiliar ingredients and even after googling term after term still so many grey areas!! I'm sure in time it gets easier and second nature and you learn by trial and error but holy this constant uncertainty is super annoying haha.

This place is great. Learning a lot. Honestly, I've known people with celiacs in the past, but it never occurred to me that that's what could be wrong with me. But the more I learn, the more it fits. One more thought, the articles I'm reading seem to say that we need to avoid gluten meticulously. I'm certain that I didn't accidentally eat gluten, because I've basically only eaten meat and veggies. But, my family has continued eating as normal. My kids making pancakes and it getting in the air, toast with all the crumbs everywhere, etc. Could that exposure be enough to keep my blood antibodies high? Or does it need to be ingested?

Hey, I had Hashi's some 15 years prior to my celiac disease diagnosis. My doc put me on a very lose dose of Armour. It did bring down my antibodies (by half), but they were extremely high to begin with (anything over 30 was positive and mine initially were close to 4,000). My nodules and enlargement stayed constant. Both actually went away since I have been gluten free! Like Gemini, I am on Armour for life! But that's okay. Just had my TPO checked yesterday, in fact, and now the number is 360. So, better, but that lab range is anything over 15 is positive. No reappearance of the nodules or enlargement. I am also on a low carb high fat diet to treat my diabetes too.

Yes! Call University of Chicago! Switching you from one medication that's not working to another and back again isn't helping you. It's definitely time to look at something else. I'm so sorry that you're not feeling better.