Adventures in Gluten (and Sugar) Freedom from a southern blogger chick!

Wednesday, May 12, 2010

A call to action

My friend Karen Russell reminded me that at least I get pitched by people who reach out to gluten-free bloggers. The text of this letter below is one way I was pitched in the last two day.

It moved me to action. I hope it will move you to action.


I hope that you will feel better soon… (she reads my blog. I appreciate that...)

I know that I am a complete stranger for you but I need your help.

My husband I are the quiet type who often sit in the back of the room. But things have changed for us. Now I am knocking at very door hoping that people would listen to my plea.

After a year of having a sick child and being constantly told “everything is normal”, our 2 year old son was diagnosed with Celiac. I couldn’t look at it without feeling this overwhelming sadness and anxiety. It has been an emotional rollercoaster. It has only been a month. I still wake up at night worrying about him, about his life, about his future and his health.

As you very well know, there is no cure or treatment for Celiac. It is all about the food you eat or don’t eat. It sounds easy but it is truly challenging. The lack of labeling standard infuriates me. Many food companies still don't disclose the presence of rye & barley in their food products. That’s when I decided that I can no longer stay quiet hoping that things will change. I want to make this world a safer world for my son.

Only Congress has the authority to amend the Federal Food, Drug, and Cosmetic Act to expand the definition of a major food allergen to include rye and barely. So I wrote to the congress to beg them to mend the law.

I am urging all Celiac sufferers & their friends and family to send an email to their members of congress. It will only take 5 mn but it may make a huge difference for all of us... I'd appreciate if you can ask your friends, family & readers to do the same….

The law won’t change tomorrow but it will one day…I don’t want to be a bystander anymore. I want to make it happen with your help & the help of the entire community…

I included a sample letter below.

Find your members of Congress by clicking on your state on the map:

To Whom It May Concern:
Several of my friends and family members have been diagnosed with Celiac disease, an inherited, autoimmune disease in which the lining of the small intestine is damaged from eating gluten and other proteins found in wheat, barley, and rye.

More than two million people in the United States, or about 1 in 133 people have the disease. According to a study conducted by the Celiac Disease Center at Columbia University along with CIGNA HealthCare, the annual mean medical cost of an undiagnosed Celiac patient is 8500$ per capita compared to 7100$ for Celiac patients on a strict gluten free diet. Thus an adherence to a gluten-free diet could significantly reduce the overall medical cost on the health care system.

However, living a gluten free diet is extremely challenging with the current FDA regulations on food labeling. The FALCPA (Food Allergen Labeling and Consumer Protection Act) requires that the eight most common allergens be declared in food products (eggs, milk, soy, peanuts, tree nuts, fish, shellfish and wheat). However, Celiac sufferers have to avoid rye & barley in addition to wheat.

I am requesting an amendment of the FALCPA to include barley and rye in the list of common allergens. This amendment will ensure that individuals, particularly parents of children with Celiac and others providing food to those children, can easily and accurately identify food products containing gluten ingredients.

I am aware that the FDA is scheduled to make a final rule on the use of the term “gluten-free” on food labeling. However this new term is for voluntary use in the labeling of foods. The proposed amendment to the FALCPA will legally require the food companies to explicitly disclose the presence of wheat, rye and barley in their products, making it easier for Celiac sufferers and their caregivers to identify foods that are safe to eat.

For people with Celiac, eating gluten will cause serious irritation and severe inflammation of their guts. For my loved ones who suffer from Celiac disease, avoiding gluten is not a choice, it is a medical necessity and a matter of survival.

Thank you for your attention to this matter.


Much love, Ging


Karen Russell said...

Using blog power for good. Way to rally, Ging!

gfcfmom said...

Hi Ginger,

I thought the mother who wrote you this letter would be helped by my blog, Our GF Family, since we were in a similar situation. Often, as you know, a gluten free diet alone is not enough to undo the damage of Celiac Disease. Often there are still absorption issues you need to get to the bottom of and supplementation is necessary. Please pass my blog along to this mother. I am in NYC and I had a lot of access to alternative doctors so I am trying to help others with the information I have gathered.