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From:
Lin Goldkrantz <[log in to unmask]>
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Lin Goldkrantz <[log in to unmask]>
Date:
Mon, 10 Mar 2008 13:51:37 -0400
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<<Disclaimer: Verify this information before applying it to your situation.>>

Here is the summary of responses I received from the celiac listserv regarding how to become involved in the studies for celiac pills. Thanks to all who responded. I will forward this to the women who said she's interested in participating. Lin


1.The lab is Alba Therapeutics if you're talking about the AT1001. You can get
some info at http://www.clinicaltrials.gov/ct2/show/locn/NCT00492960. 

2. www.albatherapeutics.com The study is through Alba Therapeutics.  You should be able to find the info on their site.  Dr. Ferreria in Hagerstown MD is doing the study. I did it in Nov, Dec. and part of Jan and I didn't get sick, but did have some symptoms.  The study is 4 part.   You can get the max dosage, middle range dosage, minimum dosage or no drug at all.  You take two capsules of gluten with each meal equaling about 1/4 slice of bread along with the study medication.  I believe I was on a low dose, so over time developed symptoms.  There is only one downside, they give you a intestinal permeability test that is unpleasant each week.  That consists of drinking a few ounces of liquid which is super sweet and then collecting your urine for the night and next morning.   I understand that they are looking for newly diagnosed patients now who have never gone gluten free to see if they heal on the medication while still ingesting gluten.  But they may still need biopsy diagnosed patients who have been on the diet for a while.  Dr. Ferreria is a wonderful man and his assistant, Angie, is a delight.  I'm not sorry I participated.

3. Dr. Fasano is at Green Street (I presume Baltimore, MD. Didn't give phone number.)
http://www.celiaccenter.org/

 University of Maryland
School of Medicine
Center for Celiac Research
20 Penn Street, Room S303B
Baltimore, MD 21201


4. celiacchicks.com ....article on testing

5. If you go to the GIG website (www.gluten.net) and scroll down the home page to a portion that discusses the NIH Launches Celiac Disease Website, and click on it, you will locate Celiac Disease Research and from there you will be able to locate Celiac Disease Trials and Trial Results. I felt it was best to give you the information this way, as the link names get rather long and sometimes do not carry over well in emails.

6.  http://abclocal.go.com/wpvi/story?section=news/health&id=5950129
An Action News Special Report

  Lisa Thomas-Laury, Reporter; Dawn Heefner, HealthCheck Producer
February 12, 2008 (WPVI) -- It is an illness that doctors often miss, and it can be years before some patients get the correct diagnosis. In the meantime, one of life's basic pleasures, and needs - eating - is interrupted. Tests are now underway in Philadelphia on a medication that could change the lives of those with celiac, & for many people who aren't yet, aware they have it:Jax Lowell doesn't only KNOW about celiac disease.She literally wrote the book on how to live with it., "The Gluten-Free Bible."But it ravaged her body for years before she knew what it was.Lowell describes her plight before her diagnosis, "I had to be 90 pounds, I had to have 2 bones broken a-traumatically from lack of calcium, pernicious anemia. You name it."For those with celiac, the small intestine can't digest gluten - a protein in wheat, barley, and rye.It triggers an immune reaction that, over time, cripples the absorption of vital nutrients.Dr. Anthony DiMarino, a gastroenterologist at Jefferson University Hospital says, "You can lose 50, 60, 70, or 80 per cent of the absorptive capacity of your intestine."Celiac causes severe stomach symptoms - chronic diarrhea, pain, and bloating, but can also lead to brittle bones, anemia, diabetes, and infertility in women & men.Celiac isn't rare - perhaps 1 in 130 of us have it - it's about as common as high cholesterol. But it is often misdiagnosed.A few years ago, we reported on Flyers & Sixers owner Ed Snider's 20-year ordeal before he got the proper diagnosis. A gluten-free diet is the current approach to treating celiac, but that's a challenge, because gluten is used in many processed foods.And it can take the fun out of eating, as Lowell remembers, "I really wasn't interested in food, because I associated food with not feeling so well."Help could be on the horizon.Lowell is taking part in nationwide tests of AT-1001, a medication that blocks gluten. Here's how it works:The body produces a compound called zonulin - the gatekeeper between cells lining the small intestine.Too much zonulin, and the gates get stuck open, allowing a flood of gluten proteins.Which triggers the crippling immune reaction.The new drug, obstructs the zonulin, keeping the cell gates closed.Dr. Anthony DiMarino, is overseeing tests of the drug, at Jefferson University Hospital, & says so far, he's been impressed.Dr. DiMarino says, "It doesn't have any side effects, 'cause as soon as it stops blocking the junctions, it seems to be destroyed by the body."The drug won't totally replace a gluten-free diet, but Jax says it does allow for a more normal life.Lowell says it would be an amazing step forward, "We can have a little more control of our lives, by letting go of control. With a pill, you can be more spontaneous, you can travel." Trials for AT-1001 are open. For more information, contact Angela Gordon, Celiac Study Coordinator , at 215-955-7979. (Copyright ©2008 WPVI-TV/DT. All Rights Reserved.) 

*Support summarization of posts, reply to the SENDER not the Celiac List*
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