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University of Maryland Celiac Disease Prevalence Study for the USA - Progress of Study as of September 1, 1999

Currently, the Center for Celiac Research is involved in three critical research areas:

  • Multi-Center Serological Screening Study to determine the prevalence of Celiac Disease in the United States

We have tested 3,998 individuals as part of the Multi-Center Serological Study for the prevalence of Celiac Disease in the United States. Our preliminary findings indicate that 5.7% of first -degree relatives and 3.1% of second degree relatives of celiacs test positive for the disease. These results are similar to those reported previously in Europe, suggesting that Celiac Disease is currently under-diagnosed in the United States.

We are extremely encouraged by these preliminary findings; however, many more subjects need to be screened to put the study into full operation. Your financial help is pivotal to accomplish our goals.

  • New Diagnostic Assay to develop a non-invasive diagnostic test for Celiac Disease

Our scientists have been able to develop a more sensitive, non-invasive, and specific test for Celiac Disease based on the use of tissue transglutaminase. We were able, for the first time, to clone the human tTG gene. Our preliminary results show that the human TtG assay performs much better than the commerically-available tests (including anti-endomysium antibodies and guinea pig-based transglutaminase assay).

  • New Dot-Blot Assay

We have developed a human tTG dot-blot test based on the detection of anti-tTG antibodies in serum or in one drop of whole blood, which can be carried out within thirty minutes. The preliminary results of the dot-blot assay indicate that the assay is as reliable as the human tTG ELISA test, making the diagnosis of Celiac Disease possible at the physicians ambulatory site.

If the sensitivity and specificity of these tests can be confirmed on a large scale, a case can be made on the possible discontinuation of the invasive intestinal biopsy procedure as the gold standard for the diagnosis of CD. This would result in early identification and treatment for patients with celiac disease at a significant cost savings. We will continue to validate these innovative tests during the future blood screenings.

BLOOD SCREENINGS

Blood screenings of first and second degree relatives have been conducted in California, Kentucky, Maryland, Montana, Pennsylvania, New Hampshire, New York, North Carolina, Rhode Island, Texas, and Washington state.

FUND-RAISING UP-DATE

We are happy to report that as of September 1, 1999, the University of Marylands Center for Celiac Research has received approximately $369,494.00 in contributions and pledges. We thank all of you who have made a contribution or pledge.

As we reported in the June update, when we began this effort back in May of 1977, 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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For now, we cannot rely on any outside financial assistance. So please, help us to help you. 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.

DONATION CHECKS

Please make all donation checks payable to the University of Maryland Foundation, Inc. and send with the pledge form or a note saying that the donation is for the Center for Celiac Research. Since the University of Maryland Foundation, Inc. houses all the gift funds for the University, they are not permitted to deposit checks into the Celiac account if the check is not made payable to the University of Maryland Foundation, Inc. Thanks for your cooperation.

UNITED WAY CONTRIBUTIONS

This is another great way to make a gift to the Center for Celiac Research and satisfy your employers request to participate in the United Way Appeal. Please designate under Other The University of Maryland Foundation/Center for Celiac Research, 511 W. Lombard St, Baltimore, MD 21201.

OTHER WAYS OF GIVING TO THE CENTER

For many, providing for important research is an important aspect of their financial planning. If this is true for you, prudent and skillful investment planning can create rewarding opportunities for both you and the Center for Celiac Research. You may interested to know, for example, that:

  • Appreciated securities, held long-term, can be given to the Center without incurring a capital gains tax. And, the full fair market value of the securities is available as a charitable deduction.
  • Life insurance that is no longer needed for family or business protection can provide major support for the Center while producing important tax savings for you.
  • Participation in a pooled income fund or the establishment of a charitable trust, using appreciated securities, for the eventual benefit of the Center can be an excellent means of increasing your spendable income and minimizing income, capital gains, estate and inheritance taxes.
  • The final opportunity to express your lasting commitment to the Center for Celiac Research at the University of Maryland School of Medicine is through your will or revocable trust.
  • Of course, charitable bequests are not subject to the federal gift tax and are not included in the taxable estate for federal estate tax purpose.

WEB SITE

Our web site, celiaccenter.org, has been on line since the middle of June. The research and fundraising updates, as well as updates on the Ninth International Symposium on Celiac Disease, individual and group screening information, blood screening locations, and donation information will be posted on the web site.

NINTH INTERNATIONAL SYMPOSIUM ON CELIAC DISEASE

The Center for Celiac Research at the University of Maryland School of Medicine, the University of Chicago, and the University of California, San Diego are pleased to announce joint sponsorship of the Ninth International Symposium on Celiac Disease to be held August 10-13, 2000 in Baltimore, Maryland. A brochure outlining the program, and registration and hotel information will be distributed to all group leaders throughout the country, and additional brochures will be made available to them for distribution to their members. We anticipate a very large attendance so we advise you to register as soon as possible.

WHAT CAN YOU DO?

  • If you have not made a pledge or contribution, please consider making one at this time. Please make checks payable to the UM Foundation, Inc. Center for Celiac Research, Attn: Pam King, 700 W. Lombard St. Room 206, Baltimore, MD 21201. These funds are administered by the University of Maryland Foundation, Inc.
  • If possible, increase your current pledge or make another gift at this time.
  • 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 organization, companies, trusts or foundations that might be in a position to help. Please contact Pam King at 410-706-8021 if you have any questions or need any assistance.
  • Send contributions to the Center for Celiac Research in honor or in memory of a friend or loved one. Make a gift to the Center in honor of the holidays.

Celiac.com welcomes your comments below (registration is NOT required).





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

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

Please share what was so difficult about starting your account.

I'm new here so please forgive me if I'm in the wrong forum. But I could use some clarity and input.. So I'll try to make my story brief as possible? So about 8 months ago I began itching uncontrollably and after going to the Dr for labs she found my liver enzymes were 5x what they should be and was referred to a gastro Dr. Gastrointestinal Dr ran multiple scans, blood work over the next 2 months and referred me to teaching hospital with a " tumor board" apparently I had a mass within my bile ducts that was blocking bile from liver. Was given a grim diagnosis of rare cancer and told would be dead within the year. Then had an endoscopy done to get tissue of the mass and for some reason it had partially resolved and was no longer blocking bile duct. At this point they could not find and cancerous cells. So fast forward 3 months I'm still in pain and had another endoscopy and the biopsy taken showed high possibility of celiacs. The blood work was negative for celiac but after the grim cancerous diagnosis I had been unable to eat for 2 weeks or so and so I'm not sure if that would have skewed the labs?. How could the biopsy show high possibility of celiac? And had anyone heard of celiac causing inflammation in the bile ducts? I have been gluten-free for 6 weeks and have been feeling remarkably better pain in the upper right quadrant is less, and migraines ( I have had for my whole life) have lessened. So all this to say I don't understand celiacs and how to explain it to family. Or how all of a sudden this happens. Ask if anyone can shed any insight I would appreciate it. Blessings

Thank you for taking the time for sharing that info. Don't we have the best disease ever! There's got to be a better way to cut down the scarring. Yes, I've scratched till it bleed. Can't help it. It's like having a bunch of mosquito bites. Yes, only gluten free now. Still have bursts, so probably am being exposed to gluten. Will need to stop dapsone soon. Good luck with your situation.