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Congress Hears First Ever Testimony on Celiac Disease

Celiac.com 05/25/2004 - On April 27, 2004, for the first time, individuals with Celiac Disease testified before a Congressional Committee.

Lisa Murphy, and her son, Colin, represented the ACTF before the House Appropriations Subcommittee on Labor, HHS, and Education. They did an outstanding job outlining what celiac disease is, who it affects, the need for NIDDK to develop a research plan for CD, as well as the need for greater physician and patient education (The Murphy family, of Chappaqua, NY, was featured in a Feb. 2004 Parents magazine article about CD).

The Labor-HHS Subcommittee determines how much money NIH receives each year. Having individuals with Celiac Disease provide information about the disease is critical to securing funding for research.

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After hearing the testimony, Subcommittee Chairman, Ralph Regula (R-OH), asked if food labels were a problem for celiacs. Not missing a beat, Lisa offered an emphatic, Yes, then highlighted problems she has encountered. Rep. Nita Lowey (D-NY), sponsor of H.R. 3684, the Food Allergen Labeling and Consumer Protection Act, and member of the Subcommittee, explained the bill was drafted to help individuals like Lisa, and Colin.

The celiac community has waited a very long time for this incredible opportunity.

The American Celiac Task Force is grateful to the entire Murphy family for graciously agreeing toshare their story, and for helping to make this historic day possible.

Allison Herwitt
Co-Chair, Legislative Project
American Celiac Task Force

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1 Response:

 
Karen Winslow
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
30 Apr 2012 4:44:06 AM PDT
Hi Scott...do we have any info on when this bill (Rep. Nita Lowey (D-NY), sponsor of H.R. 3684, the Food Allergen Labeling and Consumer Protection Act) will come up for a vote? We should all become active and contact our Congressional Representatives to vote positively on this bill. Other than your great site, we need to work at getting the word out in the mainstream as well.




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Wish we could see her follow up studies from the last 5 years.

Thank you, Awol cast iron stomach. It's really hard to tell which ingredient(s) is the wrong one for me. I think I'll eliminate all additives as much as possible because they are unhealthy anyway and then if that doesn't work I'll eliminate corn and dairy, too.

Has anyone ever experienced issues with Bob's Red Mill products? I've noticed that their products are not certified gluten free or at least that's my assumption after reading the packages.

Odd. And I wonder why she thinks she doesn't have Celiac? But her little experiment does show that some people may be going over board with new and separate pots, etc

Interesting article. I do wonder how she was 'misdiagnosed' though and how she came to the conclusion she wasn't celiac.