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7/10/09 10:28 A

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I did this study and would suggest others to do it. My results came back a little higher than I wanted but better than the last one. I went from 40 to 11. My husband who hasn't been diagnosed should get his report back soon. They did his for free.

 Pounds lost: 22.2 
7/9/09 5:50 P

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Maybe you'd like to find out how you're doing on your gf diet, maybe you'd like to see if a spouse or other loved one is reacting to gluten. If you're a gold standard diagnosed celiac, then consider participating in the above mentioned study.

The letter I received to participate:

Thank you for your interest in our study. We have recently started enrolling participants again in the study (we have received further funding).

Our study is designed to identify factors associated with celiac disease and to find genes that may predispose individuals and their relatives to develop this condition. The discovery of such genes may one day lead to better diagnosis, treatment, and possibly even prevention of celiac disease. The study is funded through the NIH.

To qualify to participate in the study, you must be formally diagnosed with Celiac Disease by small bowel biopsy. Participation involves providing a blood sample and completing a questionnaire. We will send a kit that will include tubes (for the blood draw), a questionnaire, and a prepaid FedEx envelope to send the sample back to us. For the blood draw you can go to any of your local labs, doctors, clinics, or hospitals to have a blood sample drawn. The study will pay for the expense of having the blood sample taken and returned. Once we get your blood we will run the antibody test (TTG), we will send you those results via mail. (I am assuming you are on a GFD, if so, these results should be negative). We run the antibody tests for our participants, many like to see how they are doing on the diet, and see if they are indeed testing negative.

There is no cost to participate and all information is strictly confidential. If you are married we can also include your spouse (we need controls for the study), your spouse will also get the antibody test. Participants will be compensated $25 for their time to complete the questionnaire and provide a blood sample. Please note genetic results are not provided.

The first thing we would need are medical records confirming your diagnosis (specifically the biopsy report AND any celiac blood tests if you had them). You may fax them to me (to our private secure fax) at 949 (824-8482) or send them to our address below. Once I receive your records, I will contact you, and then send the kit(s) to you. I look forward to having you participate in our study. "
(her name is Maryam if I remember correctly)

Quote (in another email I got):
"So far there is no study deadline (we just received further funding) I would anticipate by the end of the year we would stop enrolling."

Also, I asked what studies were done in the past, and these references were sent (if you're interested):

They're searching for non-HLA genes. An article I found online regarding the study:

" initial search to identify non-HLA genes has turned up some regions of interest that warrant further investigation, and Neuhausen says additional families will be studied to confirm and refine the location of the genes.

“Once genes for celiac disease are identified, we will be able to better understand how the disease occurs and progresses, as well as its associated complications and other diseases,” she explains. “This knowledge could eventually lead to the development of preventative strategies and therapies directed at molecular defect(s), thus eliminating severe diet restrictions and medical complications from the disease. Development of a gene-based diagnostic test for celiac disease would allow for a presymptomatic test for celiac disease, as well a test that is informative even for those on a gluten-free diet.”

Be curious!
Health is wealth, and I wanna be stinking rich!

4,433 Days since:  gluten
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