<<Disclaimer: Verify this information before applying it to your situation.>> Interesting stuff. Medical and scientific issues are certainly important -Michael Thorn, RN THE HEALTHY VILLI NEWSLETTER, Fall, 2008 The following letter was sent to the President of CSA/USA, Gary Powers, on behalf of the Board of the Healthy Villi, ending our affiliation with CSA/USA, the first national support group for people with celiac disease and dermatitis herpetiformis. This was not an easy decision. The Board made this decision after careful consideration and a growing awareness that some of the positions CSA/IUSA was taking and some of the statements they were making were in contradiction to information we were getting from recent medical research, other support groups, and advocacy groups. This letter details these differences. When the Healthy Villi joined CSA in 1997, CSA was the dominant voice in the dissemination of information about diagnosis, epidemiology, diet, and treatment of celiac disease and dermatitis herpetiformis. They were there for so many of us who were newly diagnosed and didn't know where to begin learning how to live a gluten-free life. They were, as their newsletter is titled, our "lifeline." For this we are very grateful. However, times have changed. There are now five major national celiac support groups in the U.S. There are numerous publications geared specifically to those with CD/DH as well as other health oriented magazines that include issues about and ways of eating gluten free. There has been a proliferation of research, a more in depth understanding of the epidemiology of the illness, and lots of work on making the public aware of CD/DH. CSA is no longer the only voice. We know that this newsletter reaches a broad audience. Many of you are just becoming aware of the resources that are available to you. Some of you have joined only the Healthy Villi. Others of you may belong to one or more of the support groups. We recognize that whether you are newly diagnosed or have been living with CD for a while, you are always looking to make sure that you have the most up-to-date medical information as well as information about wheat is safe to eat. We know that there is conflicting information out there. The Healthy Villi Board is committed to doing the work to bring you the most accurate and up-to-0date information. July 20th, 2008 Dear President Gary Powers, After careful consideration, the Board of the Healthy Villi has voted to end our affiliation with CSA/USA. Our two groups are educating members with conflicting information. This does a disservice to both CSA/USA and the Healthy Villi. We joined CSA in 1997 when the Healthy Villi was young and looking for the support of a national group. Over the 15 years that we have been in existence, basic and clinical research, as well as national trends in treating celiac disease, have introduced changed in the gluten-free diet. For example: * Scientific evidence shows that distilled vinegar and distilled alcoholic beverages, regardless of the source grain, are safe choices in a GF diet. * Currently, the clinicians of the Celiac Center of Beth Israel Deaconess Medical Center recommend avoiding consumption of oats for newly diagnosed patients, but only until it can be clearly demonstrated that celiac disease is well controlled. After this point, gradual addition of pure oats from a gluten-free facility may be attempted under a physician's guidance. Studies show that eating pure oats can be advantageous for celiac as a way of addition fiber to their diet. * Current scientific consensus is that a food product measured to have less than 20 parts per million of gluten is suitable for the gluten-free diet. The American Dietary Association, the Gluten Intolerance Group, and the Celiac Disease Foundation speak with one voice. They educate people with celiac disease with the same consistent information. CSA/USA takes a different stand. We respect your right to make whatever judgments you wish. However, we, like major national organizations, disagree with CSA/USA about some core GF diet recommendations. On a personal note, I want to make clear that we have no issue with the wonderful people who work for and support CSA/USA. We have enjoyed getting to know you and your lovely wife Kathy, as well as Bill Eyle and Cliff Hauck. You are dedicated and generous people, and CSA is lucky to have you. Our major concern is with the information that is being distributed to the celiac world. We believe our decision is in the best interest of Healthy Villi members. Thank you for your kind understanding. Yours sincerely, Lee Graham, Chair, The Healthy Villi * All posts for product information must include the applicable country * Archives are at: Http://Listserv.icors.org/SCRIPTS/WA-ICORS.EXE?LIST=CELIAC