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University of Maryland Celiac Disease Prevalence Study for the USA

Copyright by Michael Jones, Bill Elkus, Jim Lyles, and Lisa Lewis 1995, 1996 - All rights reserved worldwide.

Memo to the Celiac Community From:

Annette Bentley, NJ
Phyllis Brogden, PA
Sue Eliot, WA
Bill Elkus, CA
Sue Goldstein, NY
Bette Hagman, WA

Joanne Hameister, NY
Caroline Harlow, DC
Marge Johannemann, KY
Mike Jones, FL
Cynthia Kupper, WA
Sandra Leonard, OH

Bob Levy, MD
Jim Lyles, MI
Mary Neville, PA
R. Jean Powell, MT
Carolyn Randall, OH
Ellen Switkes, CA

How can Celiacs in the U.S. get the necessary attention of the medical, business and governmental communities we so desperately seek?

A few short years ago many European countries were experiencing the same frustrations. Today, things are dramatically better. Most have Gluten-Free products readily available; doctors are knowledgeably looking for Celiac Disease in patients; school children are being tested for celiac disease when they first enroll in school; McDonalds sells Gluten-free Big-Macs.

What made the difference was a series of serological screening studies. They concluded, beyond a reasonable medical doubt, that 1 of every 300 in the general population is a Celiac. These tests showed that there was a lucrative market in Celiac Disease; and money speaks.

Since celiac disease is genetic, those of us in the U.S. of European descent should test to the same ratio. This means that there could be more than a half-million Celiacs in the United States.

The technology used by the Europeans to do these studies is even more reliable today. Dr. Alessio Fasano and Dr. Karoly Horvath, University of Maryland School of Medicine (UMSOM), conducted a small scale serological study in the U.S. several months ago. This study showed approximately the same results as those in Europe.

UMSOM has established the Center For Celiac Research, with Drs. Fasano and Horvath, Medical Directors. They have set-up a design for a comprehensive study, in cooperation with several medical centers throughout the U.S., to establish the prevalence rate of celiac disease in this country. The main ingredient missing to implement this three (3) year, $600,000 study is money. Grant monies from federal, state or local governments are just not readily available, primarily due to the lack of interest in a rare disease such as Celiac.

This is why we are putting forth this letter of support. Now is the time to put our money and whatever other resources we may have on the line. Now we can do something to make things better for ourselves, our children and those Celiacs of the future.

We need your commitment to help fund this momentous undertaking. If we pledge and contribute what we are able, we can make it happen. For example: One-thousand (1000) of us contributing only $600 - $200 per year, for three (3) years, will fund the study.

Saturday, May 10, 1997, 1:00 PM at the University Of Maryland - College Park Campus, in the School Of Business Building, Room 1203, will be the kick-off of this once-in-a-lifetime opportunity to make a real difference. Some of our speakers will be Dr. Michael N. Marsh, Manchester, England, Dr. Alessio Fasano, Dr. Karoly Horvath, and other doctors prominent in the study and treatment of Celiac Disease. A detailed program will be posted in about a week.

Whether you are able to attend or not, PLEASE SHOW YOUR COMMITMENT by filling out the attached pledge form and return as indicated. We also need for you to assist us in getting the word out to those who are not on the Internet. Please copy and distribute this letter to members of your local group.

As the new century nears, wouldnt it be great to be on the verge of a new era of Celiac recognition and lifestyle that we helped to make happen?

FOR RESERVATIONS; or more information contact:
Kirk Gardner
Telephone 410-328-4400
Fax 410-328-6817
Internet: welcomes your comments below (registration is NOT required).

Spread The Word

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

^^^^^^ good info, tips and tricks^^^^^^^^^ yes, crumbs will make you sick. also, breathing flour/pancake mix, etc that is in the air because eventually, you're going to swallow some.

Hello I was diagnosed Dec 15 of last year and went totally gluten-free the next day. I actually got worse before I got better - it's a steep learning curve - but now, 4 1/2 months later I'm finally seeing improvement. Hang in there.

Called my GI doctor today to make sure he is going to look at my small intestine and do biopsy for Celiac for my EGD and he is. Thanks for the tip everyone about have to start eating gluten again. The office told me to break my gluten free diet and start eating gluten everyday until my EGD. Here's to being miserable again for a few weeks ???

I can completely relate! The horrible mental effects that I have been living with for years is the absolute worst side effect of eating gluten, HANDS DOWN. Worse than the endless tummy aches, worse than the constant diarrhea, worse than the week long migraines, worse than the daily fatigue and body pain.... I honestly though there was something seriously wrong with me and hated my life because of how I felt mentally. I always felt like I was drowning, not in control of my thoughts, trapped in some unexplained misery. My head was always so cloudy, and I was mad because I always felt so slow and stupid. I would feel so lethargic and sad and empty while at the same time be raging inside, wanting to rip out of my own skin. I was mean, terrible, would snap at the people closest to me for no good reason and just felt like I hated everyone and everything. Think of how crappy you feel when you have a terrible cold and flu - I felt that crappy, but mentally. Some days were really bad, some were mild. I always thought it was because I was getting a migraine, or because I had a migraine, or because I had just overcome a migraine, because I didn't sleep well, because....always a random reason to justify why we have all these weird unrelated symptoms before we get diagnosed. I'm happy to say that I have been gluten-free for about 2 months now and though I am not symptom free, the first thing that improved was my mood. I no longer feel foggy and miserable. For the first time in years, my head is clear, I can actually think, and I feel positive and like I am in control of what's going on in my head. I don't hate the world. I don't spend every day bawled up on the corner of the couch depressed and angry. The release of these horrible symptoms is enough to never make me want to cheat, no matter what I have to miss out on. So insane how a little minuscule amount of a stupid protein can wreck such havoc.

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: Umberto Volta, another leading researcher in the field gives some of the latest findings about NCGI: Presentation slides from Dr Volta's visit to Coeliac UK - NCGS about halfway through A scholarly overview from celiac disease magazine: A good overview from a sceptical but fair perspective: Another overview: University of Chicago's excellent celiac site's take: A compelling account in the British Medical Journal from an NCGI patient: Here's some positive news about a potential new test: NCGI in children: NCGI and auto immune study: Also consider: Fodmaps: This Monash study: suggested some who think they're reacting to gluten should actually be reducing fodmaps Sibo: