Saturday, April 4, 2009

about Celiac disease

In response to Kathy's comment on my last post, here is some information about Celaic:

Celiac Disease (CD)
is a lifelong, digestive disorder affecting children and adults. When people with CD eat foods that contain gluten, it creates an immune-mediated toxic reaction that causes damage to the small intestine and does not allow food to be properly absorbed. Even small amounts of gluten (I have read that one crumb the size of the head of a pin is enough to make someone with CD very sick) in foods can affect those with CD and cause health problems. Damage can occur to the small bowel even when there are no symptoms present. It is not an allergy, it is an autoimmune disease with serious long term consequences such as malnutrition and cancer if not taken seriously. It is estimated that 1 in every 100 people has it and 97% of them are currently undiagnosed. I would list the symptoms here but the list is so long it would take up too much space! So here's a blog post dedicated to the symptoms of Celiac disease.

Gluten is the common name for the proteins in specific grains that are harmful to persons with celiac disease. These proteins are found in ALL forms of wheat (including durum, semolina, spelt, kamut, einkorn and faro) and related grains rye, barley and triticale and MUST be eliminated. Oats should be avoided too, and we do. They are naturally gluten free, but it's just that they are so often cross contaminated in the growing, harvesting and processing. Some people eat them and other say they react to them. It is possible to buy gluten free oats. It sounds easy in theory to eliminate these items from your diet, but I am still amazed at the ridiculous places that gluten hides. Especially in processed pre packaged foods, such as otherwise gluten free foods flavored with Barley malt. It is in many candies, used as thickeners in sauces and soups and as an anticaking agent in many foods. It takes extreem vigilance to follow a gluten free diet.

Corn, thankfully is ok. It does NOT contain gluten. making mexican food one of our favorite meals around here. We also eat lots and lots of corn tortilla chips. Locally made El Matador are our favorite and the factory has confirmed that they are gluten free. We have to consult the internet and call numerous companies to verify if a food is gluten free. There is this law about labeling foods with allergy information, but it isn't really that helpful for people with celiac. They are required to label things that contain wheat, but not gluten which is found in many things that don't actually contain wheat.

Celiac disease is hereditary runs very strong on Rich's mother's side of his family. His mother and grandmother and many of his aunts, uncles and cousins have it and many more most likely have it but have not been diagnosed. It is something we should have been looking into sooner considering how prevalent it is in his family, but we just never really thought about it, I think we were in subconscious denial. Lily and Rich have now been gluten free for about a year. Both of them have seen major improvements in thier digestive health as a result, but for both of them the biggest difference is the almost complete releif from the severe anxiety that they both suffered from on a regular basis. Read my previous post to hear about Daisy's journey.

There is much to learn, Here's some resources for more info:

our local celiac kids support group

celiac kids support group on facebook

1 comment:

Mama K said...

You are amazing! Thank you so much!!