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1999 Celiac.com Feedback

From: Macniven, Jennifer
Subject: Thank You!!

Thank you so much for taking the time and putting so much effort into the Celiac Support Page. I am finding it very informative and also reassuring.

Since changing diet, I have significantly improved. I have gained around 14lbs in weight, I am no longer so pale, my bowel functions are close to
normal and the depression has lifted. I do, however, still suffer from a mental confusion or sluggishness. Given that I was an above average scholar,
gaining a degree in French Language & Commercial French, I find it very frustrating now when I struggle for words. I also notice that my attention
span is not good. Despite this, I still hold down a very successful career and speak at large conferences both here in the UK and also in the US.

I thank you once again for your excellent web page. At one time, during my struggle to find out what was wrong with me, I thought I was going mad. I only wish I had been able to access the Web back then and visit your page.
My very best regards,
Jennifer Macniven


Date: Mon, 10 May 1999 17:37:33 EDT

thank you for your responses, as a newly diagnosed coeliac i found a lot of conflicting advice. You have managed to make some things a lot clearer.
thank you, kind regards,
Sandra

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From: Pat Shechter
Date: Wed, 2 Jun 1999 12:41:10 -0400

First, I want to give a huge (and long overdue) THANK YOU for the Web Site!! It has been so very helpful to me as I learn to live gluten-free and as my body recovers from the years of damage gluten did to it prior to my diagnosis. Even before I was diagnosed (in late April 1998), my
gastroenterologist, strongly suspecting Celiac Disease, suggested that I begin to acquaint myself with the disease and the changes I would likely
need to make by looking at the resources available on the Web. Your site was one of the first I found, and I have returned to it often in the past
13-plus months. So many, many thanks.
Best regards,
Patricia Shechter


From: L and J Morden
Date: Sat, 17 Jul 1999 15:02:14 -0400

Please forgive the familiarity but I feel I know you so well. Your web page is a very big part of our lives. Our oldest daughter, Emma was diagnosed as Celiac when she was only 8 mos. old. Thanks to the web page we have gotten many creative answers to some of lives many
challenges; including birthdays, sleepovers and the like. Thank You to you et al.
Lloyd Morden


Date: Wed, 22 Sep 1999 15:29:24 EDT
Subject: Re: Utah Research Project

I want to thank you for your very informative web site. I have had 3 sisters diagnosed with Sprue since July. (Two of them were biopsy proven and the other was the overall clinical picture along with positive blood tests.) In your Miscellaneous Information Page, you had included information about several research projects that were recruiting families with two or more biopsy proven cases. With the second biopsy proven case coming back this week, we finally qualified. Now everyone in the family will be able to be tested. We have one sister who has been denied testing by the insurance company, and several other family members who do not have any insurance at all to help cover the costs.

I spoke with Jeff Black today, and our family is now being included in the project. Jeff was very interested in the fact that there are 3 out of 6 siblings diagnosed with this, and c=several other suspected cases. Again, thanks...without your website, some of us would never get tested
at all.
Blessings, Judy Harp


Date: Sat, 9 Oct 1999 16:22:07 EDT
Subject: Harvard Family Health Guide

I edited and contributed to the Celiac information in the newly published Harvard Medical School Family Health Guide. The Editor in Chief, Tony
Komaroff, MD, asked me to recommend the single best Celiac site for their web pages and I recommended your site without reservation, since you have done such a marvelous job coordinating all the celiac information. Your site is highlighted on the FHG web site.
Thanks for all you have done,
Jane Spector Davis


From: Zeca Martins
Subject: from Zeca Martins - Sao Paulo - Brazil
Date: Tue, 26 Oct 1999 12:05:32 -0200

Congratulations for the new look of the Celiac site! I do not remember if I had already told you, but my project to change the Brazilian law about foods (I want all the food packages to show also the inscription It does not contain gluten, as well as the government provides all diagnostic support) has been accepted by the Brazilian Federal Congress and it is under technical analysis. Your internet site gave all the important information I needed to develop the project. So, thank you very much!!!
Best regards,
Zeca Martins

Date: Sat, 6 Nov 1999 17:32:04 -0800

You are one of the few sensible voices in the celiac community and I have always found everything you posted anywhere to be rational and unemotional, which is wonderful. I always get the feeling your efforts for the celiac community are pure and that you have no political agenda. That is EXTREMELY rare as Im sure you already know. You are a very special guy!
-Joe Clemens

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Celiac.com Celiac Disease & Gluten-Free Diet Forum - All Activity

Make sure that you ask the doctor how long she has to stop the supplements before you have her levels tested and be sure to take them all with you when you have the appointment so the doctor knows what she is taking.

Talk to your doctor. With your family history and symptoms he/she may be able to diagnose based on resolution of your symptoms and family history. Also check with your local hospital if it has it's own lab. Mine covered any labs at a greatly reduced cost based on a sliding fee scale. Did you have an MRI before they did the spinal? Celiacs with neuro impact will have white spots on an MRI that resemble the lesions found with MS. Many neuro doctors don't know this. I went through what you did and they did a spinal on me also based on the MRI results. If my doctor had know what the UBOs (unidentified bright objects) were I would have been diagnosed a couple years sooner than I was. Make sure if you supplement that you ask your doctor which ones you need to stop taking and for how long before they do a blood test to check levels. Sublingual B12 is a good idea when we have nervous system issues, but needs to be stopped for at least a week for an accurate blood level on testing. I hope you get some answers and feel better soon.

Thanks for that. Will get her tested for deficiencies. I did take her to a naturopath and get her on a bunch of vitamins, but she never was tested via bloods, so will get on to that, thanks

Hi Could a mod please move this post: and my reply below to a new thread when they get a chance? Thanks! Matt

Hello and welcome Firstly, don't worry about it but for ease your post (and hopefully my reply) will probably be moved to its own thread. That will make it easier for others to see it and reply and also help Galaxy's own thread here on track and making sense. The antibodies that the celiac tests look for can drop very quickly, so... maybe? Celiac is difficult to test for, there are different tests and sometimes someone doesnt test on one but does on the other. If you can get a copy of the tests and post it here the community may be able to help explain the results. It may have shown damage to the villi, the little tendrils in your intestine that help you extract nutrients from your food. Celiac is one, but not the only, way in which they can get damaged leading to a vast number of potential symptoms and further making diagnosis a tricky proposition. Definitely, there's a connection. Here's a page that explains it in detail: https://stomachachefree.wordpress.com/2012/03/21/liver-disease-in-celiacs/ Fantastic It sounds as if your doctors were happy to diagnose you on the basis of the endoscopy? It may be then that you've found your answer. I hope so, you've clearly had a rotten and very scary time. I'm sure with the positive reaction to the diet you want to go on and get healthy, but I would only add that you should discuss this with your doctors, because they may want to exclude other potential causes if they've not confirmed celiac at this point. Check out the advice for newly diagnosed here: To your family I'd simply say that celiac is a disease of the autoimmune system, the part of our body that fights diseases and keeps us safe. In celiac people the autoimmune system see's the gluten protein found in wheat, barley, or rye grains as a threat to the system and it produces antibodies to attack it and in doing so attacks it's own body as well. It's genetic in component so close family members should consider a test if they have any of the many symptoms. There's roughly 1 person in 100 with celiac but most of them don't know it and are risking getting or staying sick by not finding out. There's further info for them and you here: https://www.celiac.com/gluten-free/announcement/3-frequently-asked-questions-about-celiac-disease/ I'm going to ask a mod to move your post and my reply to a new thread, but wanted to give you an answer first The good news is you've found a great site and there will be lots of support for you here. You've also got 'lucky' in that if you're going to have an autoimmune condition, celiac is a good one Most react really well to the gluten free diet and you will hopefully have much more healing to come! Best wishes Matt