Tag: societies

I received a very interesting email from Karla Zaldívar, the President of Asociación de Celíacos y Sensibles al Gluten de El Salvador (ACELYSES) last week. Ten international celiac associations from nine countries are joining together to ask the World Health Organization (WHO) to recognize Celiac Disease in the catalog of non-communicable diseases. They are also asking the WHO to declare February 15 of each year as the World Gluten Related Disorders Awareness Day.

If one thing is missing within the United States and the world it is a cohesive voice, vision, and mission for the advocacy of Celiac Disease. In countries such as the United States, Brazil, and the Czech Republic, there are multiple celiac associations. This makes it difficult when trying to pass legislation. In my opinion, these organizations work against each other and not together for the greater good of the people with Celiac Disease. Seeing an initiative such as this one with support from multiple countries seems promising to me. Let’s hope that more countries join in this international support of Celiac Disease awareness and advocacy.

You can read the email from Ms. Zaldívar below. I encourage you to share this with your country’s Celiac association. This is a very interesting initiative.

Dear Celiac Association members:

Please, receive warm greetings on behalf of the “Association of Celiac and Sensitive to Gluten from El Salvador” (ACELYSES for its acronym in Spanish, Asociación de Celíacos y Sensibles al Gluten de El Salvador), Central America.

Considering that:

1. Experts around the world and the World Gastroenterology Organization (WGO) stated that the prevalence of celiac disease is 1% worldwide.
2. The epidemiology of celiac disease has iceberg characteristics—there are far more undiagnosed cases (below the waterline) than diagnosed cases (above the waterline).
3. Despite the efforts of the associations by educating and raising awareness about celiac disease even there is much ignorance of this condition, which is evident with the high deficit of early celiac diagnosis.
4. In some countries, celiac associations have the establishment by law of the national celiac day. At this time, according to the World Health Organization (WHO), there is no international or global day of celiacs, that day must be approved by the General Assembly of the United Nations or by a specialized agency of the United Nations, such as WHO, FAO and UNICEF.
5. The spectrum of gluten-related disorders are:
   i. Autoimmune: celiac disease, dermatitis herpetiformis and gluten ataxia.
   ii. Allergic: allergy to wheat.
   iii. Not allergic not autoimmune: sensitivity to gluten.
   (Source: http://www.biomedcentral.com/1741-7015/10/13 )
6. One of the most remarkable moments in the history of celiac disease has been shedding light on the cause of autoimmune disease. There is consensus that celiac disease, belong to the category of autoimmune disorders and in this case, is the only one with known etiology. A Dutch pediatrician, Willem Karel Dicke (February 15, 1905 – 27 April 1962) who proved that gluten was the offending agent.

It is evident that it is essential and urgent to make arrangements to make visible, at the highest level in the whole world, the issue of gluten-related disorders and that prompt action must be taken to minimize the impact of this problem of public health which is currently unattended in the majority of countries.

At this moment, the following associations are also supporting this initiative:

• Spain: Federación de Asociaciones de Celíacos de España (FACE)
• Panamá: Fundación de Celíacos de Panamá (FUCEPA)
• Ecuador: Celíacos del Ecuador
• Perú: Asociación de Celíacos del Perú
• United States: Celiac Disease Foundation and Celiac Support Association
• China: Gluten Free China
• Guatemala: Asociación Celíacos de Guatemala
• Colombia: Fundación Colombiana de Celíacos
• El Salvador: Asociación de Celíacos de El Salvador (ACELYSES)

In addition, renowned experts also support the initiative: Dr. Salvador Peña (Netherlands), Dr. Eduardo Cueto (Argentina) and Dr. Alessio Fasano (USA).

Therefore, a request to the Director-General of the World Health Organization (WHO) has been sent so this organization adopts resolutions to:

1. Include celiac disease within the WHO catalogue of non-communicable diseases (NCD)
2. Declare February 15 of each year as the World Gluten Related Disorders Awareness Day. ACELYSES has proposed that date as a way to recognize the invaluable contribution of Dr. Willem Karel Dicke. Each country can continue celebrating the national celiac day. Regardless of that there is a world day for the entire spectrum of gluten disorders.

On behalf of associations that have come together for this initiative I kindly ask your support for by means of: 

• Contact your World Health Assembly delegates in your country. Also, whenever possible, you can contact and request the support of the Board Executive national member (See http://www.who.int/governance/eb/en/ ).
• You can share and promote the initiative with other organizations or people who work for the benefit of people with gluten-related disorders and that can help with the support inside the WHO.

To read this entire initiative in Spanish, please click here.