24353 Celiac Disease Foundation Receives $250,000 PCORI Award for Patient Participation in Research - Celiac.com
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Celiac Disease Foundation Receives $250,000 PCORI Award for Patient Participation in Research


The Celiac Disease Foundation has received an award to promote patient researcher interaction. Photo: CC--Military Health

Celiac.com 05/20/2016 - The Celiac Disease Foundation (CDF) has received an award from the Patient-Centered Outcomes Research Institute (PCORI).

The PCORI Eugene Washington Engagement Award will help the CDF to create a national network of advocates trained in patient-centered outcomes research (PCOR), known as the Patient Engagement Celiac Disease Network (PECDN).

The project is aimed at patients and caregivers who may be eager to participate in research, but who may feel unprepared to work with researchers, as researcher expectations and terminology can be confusing.

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Through this network, CDF will train patients and caregivers to become more involved in research in ways that will impact the treatment of their disease.

The first training program for patients and caregivers will be offered at Celiac Disease Foundation's National Conference April 30, 2016.

Read more at: Bezinga.com

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Wish I could give you a hug. Unfortunately I know how that feels with Neurologists, Internists, Endocrinologists, Rheumatologists, GIs..... I got so tired of crying my drive home after refusing yet another script for Prozac. I do hope your GI can give you some answers even if it is just to rule out other possible issues. Keep on the gluten and we are here for you.

It is too bad that so often a full panel isn't done. Glad your appointment got moved up and hopefully you will get a clearer answer from the GI. Do keep eating gluten until the celiac testing is done. Once the testing is done do give the diet a good strict try. Hang in there.

That makes sense...I cried with relief when I got my diagnosis just because there was finally an answer. Please know that you are not weak or crazy. Keep pushing for testing. It could still be celiac, it could be Crohns. Push your Dr's to figure this out. Best wishes.

Thank you all very much. I actually cried when I got the answer. I wanted an explanation that I could "fix." Now I'm back to thinking I'm just weak and possibly crazy. I know I'm not crazy, but you know.

From what I have read online there is about a 1-3% chance of getting a false positive for celiac disease from a blood test. Was it a blood test that you got done? It may be worth your while to get a biopsy or more testing just to confirm it. I know being gluten free is a pain but it is better than getting cancer or other auto immune disorders.