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University of Maryland Celiac Disease Prevalence Study for the USA - Fundraising Update September 1, 1998

Center for Celiac Research Multi-Center Serological Study Update As of September 1, 1998.

The University of Marylands Center For Celiac Research has received approximately $190,000 in contributions and pledges. Thanks to those of you who have made pledges and gifts, we have been able to purchase and install a dedicated computer system. The six (6) regional centers have begun minimal screening of study participants. Thanks to a partial grant provided by the University of Trieste, we now have one of the leading international experts in entiendomysium celiac disease assisting us full time in our lab.

We have tested 1178 samples as part of the Study for the Prevalence of Celiac Disease in the United States. Our preliminary findings indicate a 6% positive finding of first-degree relatives and 3.4% positive finding of second-degree relatives of Celiacs. These findings are in the same range as were found in most of the European studies done in previous years.

As we initially stated in our protocol, we will need to test a total of 45,000 blood samples. All the tools and players are in place - now we need the necessary dollars to put the study into full operation. Blood testing and shipping charges will increase significantly in direct proportion to the samples processed.

We thank all of you who have made gifts and pledges. The Celiac community has been very supportive of our grass-roots fund-raising effort.

When we began this effort back in May 1997, we suggested that if 1000 Celiacs, relatives or friends would make a commitment to pledge $200 per year for three (3) years we would be on our way to funding this extremely important study.

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To date we have received ONLY 122 pledges in the amount of $70,335. We have also received a significant number of cash contributions, and as previously announced we were blessed to receive a generous gift of $50,000 from the Oberkotter Foundation.

For now, we cannot count on any financial assistance from the NIH. So once again asking YOU to please help us. Remember we are not asking you to make a contribution, but to make an investment in the well being of every Celiac - now and in the future.

HOW?

  • If you have not made a pledge or contribution, please consider making one at this time.
  • If possible, increase your current pledge or make an additional gift.
  • Discuss the importance of this study with fellow Celiacs, relatives, friends or whoever might be in a position to help. Ask them to contribute.
  • Organize discussions and/or fund-raising efforts with your local support group.
  • Help us to identify possible organizations, companies, trusts or foundations that might be in a position to help. Contact Pam King,

Call (410) 706-8021 for any questions or assistance.

All donations and pledges should be made payable to the UM Foundation, Inc. - Center for Celiac Research, Attention: Pamela King, Director of External Affairs, 700 W. Lombard Street, Baltimore, Maryland 21201. These funds are being managed by the UM Foundation, Inc. Thank you again for your commitment to this invaluable research.

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

We have gone gluten free, our whole house, as of a month ago. It was pretty seamless since I had been gluten-free for 5 months last year. I have found many good recipes, and my picky husband and one of my boys who is also a picky eater, even prefer many gluten-free recipes to the regular ones. My husband did see my point about the size of the gluten protein means nothing. Its a gluten protein period, that's what you are avoiding. It doesn't matter if its hiding in the scratch of your baking sheet and you can't see it. You can't see the wind, but it's still there. I hear you on the anemia. I've been anemic for several years, I just thought it as because I was getting a little older. Has your anemia gone away or do you still have problems with it?

Ennis, it is made out of metal, coated with plastic I think. You have such a hard time, my heart really hurts for you. But you are such a support to those on this board, and a great teacher for those of us who are new.

Thanks everyone! I think its hard for people to fully accept because they cant see the damage it does every time you get glutened. It's invisible. Im glad to know I wasnt being paranoid. I sure was when I was first diagnosed. I laugh at myself now, but its a pretty steep learning curve.

FYI......anxiety is a common symptom with celiac disease and NCGI. It seems to resolve on a gluten-free diet. ?

Yes, I will definitely update you and would love to hear what your experience is. I'm glad I found this forum because you're right--it's nice to not feel so alone. I'm also prone to anxiety--so waiting and worrying is not fun! Cyclinglady, thanks for sharing your experience as well. I do plan to maintain a gluten-free diet for a while at least if the biopsy is negative just to see how I feel.