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2002 Celiac.com Feedback

Date: Mon, 21 Jan 2002 12:04:04 EDT
Subject: Thank You!

Thank you for your excellent website! One of my wonderful California cousins, Steve, found your website back in 1995 when I was newly diagnosed with celiac disease so thats how I learned about your www.Celiac.com! I just got hooked up on e-mail as of last Wednesday! Could a person get any slower than this!!! :) Its a MailStation thing without a PC. Thanks for all that youve done and continue to do for us fellow celiacs, Scott!! Ive been spreading the news about your website since 1995 here in the Fargo (ND)-Moorhead (MN) communities!
Sincerely,
Lynda Nelson


From: Norm Brunette
Subject: Thanks
Date: Fri, 29 Mar 2002 08:16:53 -0500

A friend of mine has been suffering for about three years. Her story is almost identical to yours. Yesterday her doctor asked her how much bread she was eating, A lot, she likes sandwiches. The same doctor she has been going to for years in addition to the specialists he has referred her to. I think he has just discovered Celiac Disease. He never asked about bread before. In any case I got on the Web, started searching and found your page. I feel so confident that we have found the problem and that she will finally get some relief. If he doesnt run the proper tests we will find someone who will. Thanks for your Web Site, now we have some direction.
Have a good day.
Norm Brunette


From: Robert Hoffman
Subject: Celiac running for office?
Date: Sat, 8 Jun 2002 01:22:12 -0400

I hope all is well with you. I hope you are still running the site, I havent been here much over the last year. I have sent many people to the site though. Scott, I am running for County Commissioner in my district down here in South Florida. In my political life I will try to spread the information about this disease as best I can. My first step is to put it in my bio part of my campaign page. It is a start. I referenced your site as the leading authority on the web, and I hope that is okay. You changed my life, and where I am now is because of your efforts and the whole internet thing.

Thank you, and I hope this news item is of interest to you.
Bob Hoffman


Subject: Request for Information
Date: Thu, 20 Jun 2002 8:3:4 -0400

You have a fabulous web site with a wealth of information. Thank you so much.

Louise Parish


Date: Mon, 24 Jun 2002 10:19:45 -0400
Subject: support group

Hello :) My name is Trisha Lyons. I am a registered dietitian and have celiac disease. Your site was a lifesaver when I first was diagnosed! I have been referring people to it ever since. Thank you!

Thank you very much!

Sincerely,
Trisha Lyons, R.D., L.D.


Date: Mon, 24 Jun 2002 09:14:20 -0700
Subject: asthma

Dear Scott,
Thank you for your wonderful site. It saved my life and the lives of my 4 children. Could you please add asthma to the list of diseases caused by celiac disease?

I cannot thank you enough!

All the best,
Susan Carmack



Date: Thu, 18 Jul 2002 13:19:25 -0400
Subject: Thank you !!!!

Thank you for your site.

I found out I was celiac because of your site, especially through Ronald Hoggans articles that I read four years ago.

It ended years (found out at 40) of suffering.

Thank you very much, you changed my life, actually you gave me a life.

Johanne Johnson


Subject: Finally a reason!!!
Date: Sat, 2 Nov 2002 09:25:56 -0800

Hi- I was hoping to relay a message to Scott here......
My 12 year old son was recently diagnosed with Celiac Disease. Hes had abdominal pain since he was 2 yrs old, (when I quit nursing him) Hes been worked up, had an appendectomy, lactose intolerance tests, his doctor was going in the direction of Chrons disease and Kyle was going to be scheduled for a lower GI scoping. Hes been surviving the acute stomach aches with Donnatal and Tagamet..
I am so thankful to finally have changed doctors, Kyle had a blood test and now we have answers and ways to make his stomach pain manageable, and I am grateful for this web site. Thank you.
Sharon Barnes, Kyles mom :)

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Date: Sun, 3 Nov 2002 17:41:44 -0500

I too, have to tell you how really great your newsletter is. Its
obvious you put a great deal of time and energy and love into the
preparation of it. The most important thing my Doctor told me to do when
I was first diagnosed with Celiac disease, next to taking all gluten out
of my diet, was to learn, and learn and learn as much as I possibly could
about the disease. Your newsletter is so full of useful information, I
cant wait for the next issue to come out.

Thank you for a job, very well done.
Annette Leveque


Subject: Thank you
Date: Tue, 12 Nov 2002 14:01:25 -0600

Scott, I want to say thank you for your newsletter. It has helped me so much. Im not sure I had Celiac Disease but the symptoms you described for yourself really fit me, from the pain in the right side to the off and on diarrhea. I did not have the weight loss associated with the other symptoms, but I had something and the research I did has enabled me to not have it any more. When I got rid of gluten I got rid of more than the digestive problem I was having.

For instance, I WAS diabetic for 4-5 years, and when I went on the gluten free diet, my blood glucose counts went down, down, down - now Im normal ! I WAS about 30# overweight, but began to lose weight and the 10# I lost has made a difference.

An interesting observation about the doctors and diabetes - neither of mine ever sought to find out what caused it. They simply treated the symptoms ! "Your mother had it?, your father had it? Now you have it."

I notice that our local grocery has put in a health food section and they carry a lot of gluten-free items. To me that means there are a lot of people who are discovering this health connection.

30-40 years ago I read (I think it was Adele Davisbook) that when the big bakeries started up here in the States, we all started using highly refined wheat products and that has led to a lot of health problems.

I appreciate all the work you have done to help others, and I just wanted to say, Hey, Im one of them.

Thank you again.

Rosemary Perkins


Date: Thu, 14 Nov 2002 18:56:51 -0800
Subject: questions from a newly-diagnosed celiac

Dear Celiac.com,

Thank you so much for investing so much time into your website. Having
recently been diagnosed with celiac disease, I found the information on
your website to be far more comprehensive and informative than any other
source that I have. The nutritionist I have been assigned to does not even
have information that is as current as yours.

Sincerely,
Melinda Mulcahy


Date: Sat, 16 Nov 2002 16:30:32 -0500
Subject: Re: Info? Help!

Scott,

Thank you so much for your reply! I wasnt sure Id get a detailed reply, never mind a personal note. I greatly appreciate it! Thank you for the information regarding the health and life insurances, it is a blessing in disguise, one I hadnt thought of. Looking at it that way, even if I dont get the disability $$ I will probably still have saved.

Thank you for your website. It is solely because of the information and ability to network on your website I was able to get on track so quickly and get back to health and back to life! Thank you......

Jennifer Puckett


Subject: Re: newsletter
Date: Mon, 9 Dec 2002 07:25:28 -0600

Good Morning Scott,
I was especially interested in the Malignancy in Celiac Disease article, as my mother was never diagnosed with Celica but died from what was then termed a rare form of cancer. Her mother and sister also died with the rare form of cancer. We are now understanding that the probability that she had Celiac and didnt know it, lead to her death.

The doctors at M. D. Anderson, Houston, Tx told us her primary cancer was in her stomach not in her ovaries as was suspected. The doctors wanted my siblings and myself tested then, however we felt we wanted to bring our mother home as she was given 2 months to live. After caring for her until her death I put off having myself tested for any digestive problems. Later, becoming very sick myself I was checked time after time by local specialist who kept telling me I was just experiencing depression systems. Finally a young doctor had blood drawn, sent to Mayos confirming what he thought I might have. CELIAC!! biopsies confirmed that I had Celiac. I have been gluten free since and feel better in most ways.

My daughter was diagnosed with stage 2 of Celiac this past spring. She suffers from severe headaches, has juvenile diabetes, and Thyroid disease. The doctor tells her she has the complete triangle now.

Again, thank you for your very informative newsletters. Keep up the good work.
Virginia Comaward


Date: Wed, 25 Dec 2002 18:29:46 -0800 (PST)
Subject: Thank you

Scott,

I want to Thank you for the wonderful and informative website. Its been a tremendous help to us after our 3 (now 4) year old daughter was diagnosed. We went through testing as you did, however, our daughter experienced seizures. Also, due to her immune system being so weak, she had pneumonia 2 times in 5 months. Then, she was diagnosed with asthma. I understand what its like to be frustrated with physicians who dont know what theyre trying to treat. We had a wonderful gastroenterologist that has helped out beyond expectations.

Thank you again for taking the time to have created this site.

Cathey Stone

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That's what I thought! My father has gluten sensitivity and I almost regret telling the doctor that because I feel that made her jump to conclusions because of that. He never had the biopsy either. I feel like doctors think it's just easier to say it's celiac when they show a gluten sensitivity to avoid additional testing, even if that diagnosis doesn't make any sense at all. My doctor didn't even offer the biopsy, and said the blood work was enough. Should I seek a third opinion? I mean, I've been gluten free for 9 months...

It will prolong your life....celiac is a autoimmune disease that causes your own immune system to attack you. The longer your eating gluten the worse it gets, I mean all kinds of other autoimmune disease, food allergies, food intolances. One day you could lose the ablity to eat carbs, or sugars, or become randomly allergic to tomatoes or corn all cause you decided not to be on road to healing I am not kidding here. I am allergic to corn, can not process meats, have another autoimmune disease that makes it so I can not eat dairy or CARBS/SUGARS. I wish I could go back in time and go on a gluten-free diet a decade ago. Worse that could happen you could develop cancer or other complications and yes we have had this happen to a member before on our forums. Think of it like this your just changing brand here I will give you some links to some gluten-free foods, and how to order them, You can even order alot of them online this should help simplify it for you. I suggest thrive, amazon, or one of hte other links from there, Many you can order from the manufacture. https://www.celiac.com/gluten-free/topic/117090-gluten-free-food-alternatives-list/

I know this is not funny for you guys, but I had to laugh about how all of those family members simply ignored your well meant advice. That is definitely head in the sand syndrome. I have tried for a long time to find the connection between autoimmune diseases and my health. With this celiac diagnosis I have finally found it. All of the puzzle pieces are in place for sure and it is going to be my mission to do the best possible in order to get healthy again. What a sneaky disease this is and to think that none of my family members never were diagnosed, despite the fact that both have been in doctor's care all of their lives. It really goes to show that most medical doctors simply seem to completely disconnect nutrition with health. I am scared to give that advice to people when I see them suffering from specific diseases. But there are people that I would like to help if I can. Scared to make those suggestions, because so many times negative reactions follow and all I meant to do was to help that person.

There are definitely things you can do to make it easier on yourself. But all of my ideas seem to cost money and involve cooking. But I'll give it a shot anyway in case you haven't already thought of it. I would buy a small chest freezer and put gluten-free foods in it. Canyon bakehouse sells their fantastic bread and bagels right on their website. You can just buy a case of it. Then if you ever get in the mood for a sandwich or bagel the bread's right there frozen in your chest freezer. If you get invited to somebody's house for dinner find out what their cooking and make your own similar version of it. So for Easter I would make ham, potatoes and broccoli and bring that with me. So when everybody else is eating a fantastic Easter dinner I'm also eating a fantastic Easter dinner. I have other food issues and before celiac I was invited to a friend's wedding. I wasn't going to be able to eat the food they were serving so I made similar food at home. They were serving lamb, ham, vegetables, potatoes. So I brought ham, corn and potatoes with me and heated it up when everybody was going to the buffet to get their food. So when everybody else was pigging out on this great wedding dinner I was also pigging out on a great dinner. And nobody would have noticed if they didn't try. Sometimes you just get in the mood to have a frozen dinner and just don't feel like cooking something. There's two ways you can go about this. I happen to be addicted to Udi's chicken Florentine and think that their broccoli kale lasagna is very good as well. So I'd stock up on that in that chest freezer. glutenfreemall.com has tons of stuff. On Sunday you can make a weeks worth of food and freeze a lot of it in individual portions. After a few weeks you will have several different meals in the chest freezer that you made at home. You can eat those on weeknights when you're too busy to cook. In my family Friday night was always eat out fast food night. McDonald's, Burger King, pizza, fried chicken. So for pizza my plan is to purchase Etalia New York style pizza crusts. Purchase some Escalon six in one crushed tomatoes and freeze in individual portions. Buy some Grande 50/50 mozzarella cheese and freeze in individual portions as well. If on Friday night if I am in the mood for pizza I'll just grab a crust, a portion of sauce and a portion of cheese from the chest freezer and make myself pizza in under 15 minutes. When I get invited to a barbecue I bring loaded potato skins or batter fried chicken wings. Everybody loves them as do I. I by Pamela's gluten-free flour from Amazon six at a time. So I always have some available. For the record, at the moment I am an extremely strict diet and cannot do any of the above. But will go back to that method in a few months.

Yes, I remember as a child being very ill too, could never explain it. The fact that I have several autoimmune diseases speaks volumes. I sure wish I had caught this much sooner. Will have to research to increase enzyme consumption, but we can not look into our digestive system. Trying to concentrate on repairing the damage, not much else that can be done right now.