Celiac Disease for dummies

May was Celiac Disease Awareness month and I let the entire month slip by without a post.

So, I figured I’d make a little ‘Celiac Disease For Dummies’ guide to help inform my friends and family, and anyone else who stumbles upon this post, about Celiac Disease.

Most people commonly understand Celiac Disease to be an allergy to wheat, rye and barley; this is true.

What isn’t true is that Celiac Disease is an allergy; Celiac is a lifelong autoimmune disease for which there is no cure.

The only treatment for CD is to follow a 100% gluten-free diet.  

Colorado 1 - pablos

Although it is known that CD is a genetic disorder, there is still no known cause of the disease.

For people with Celiac Disease, gluten is the devil; gluten is a protein which is found in all forms of wheat.

When someone with CD eats gluten, the villi of their small intestine are damaged; this interferes with one’s ability to absorb nutrients from food. In short, it means that the body attacks itself every time gluten is consumed.

One of the most astonishing facts about Celiac Disease is that nearly 1 out of every 133 Americans suffer from it.  

Even more astonishing is the fact that approximately 90% of those who have CD don’t even know they have it.

This is especially concerning when considering the facts:

  • Untreated Celiac Disease increases one’s risk of cancer by about 200%
  • Untreated Celiac Disease increases the risk of miscarriage by a staggering 800%

Since the symptoms of Celiac Disease typically manifest themselves in the digestive system, it is often misdiagnosed as irritable bowel syndrome, chronic fatigue syndrome, depression, or other fatigue-causing disorders.

For more information about Celiac Disease feel free to contact me!

Only through education and awareness will we be able to get the funding and attention that this disease deserves.

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Put a label on it

Most people commonly think of Celiac disease as an allergy to wheat. This isn’t exactly true. Celiac is a lifelong inflammatory auto-immune disorder for which there is no known cure.

The only treatment for Celiac disease is to completely eliminate gluten, a protein commonly found in wheat, rye and barley, from your diet.

When someone with Celiac eats gluten, they damage the lining of their small intestine, interfering with the ability to absorb nutrients from food. In short, the body attacks itself every time gluten is consumed, and repeated consumption could lead to cancer, osteoporosis, anemia, diabetes and thyroid disease.

label post-  breadsApproximately one in 133 people in the U.S. are diagnosed with Celiac.

This figure, however, is only an estimate considering only 5 to 10 percent of the affected are aware they have Celiac.

Since Celiac is a multi-system disorder, the symptoms manifest themselves differently depending upon the individual.

For instance, when my sister or I eat gluten, we are plagued with crippling stomach pains for hours, then develop a canker sore the size of Mars a few days after. The combination of the canker sore and sharp stomach pain has kept me loyal* to the gluten-free diet.

*I broke the diet once for a Wegmans sub which, although delicious, taught me that no sandwich is ever worth that kind of pain.

label post - wegmans subMy mother, on the other hand, claims that her only side-effect from breaking the diet is a runny nose. My sister and I both think she just uses that as an excuse to eat chicken parmesan in front of us, but she swears by it.

Due to the variance in both the severity of the symptoms and the way in which the symptoms present themselves, an accurate Celiac diagnosis can be a very time-consuming and expensive process.

It took approximately two years of blood tests, new diets and a biopsy before my sister was diagnosed with Celiac in 2004.

Once diagnosed, most individuals find themselves at a loss and start looking for answers to questions like: what does gluten-free mean? Where do I go to buy gluten-free products? How much more money do these products cost?

Adopting a gluten-free lifestyle is a discipline that requires self-control, awareness and dedication; the effort required to ‘go gluten-free’ has made me passionate about helping others do the same.

label post-  testing 2In order to gain awareness and recognition of the disease, the Celiac community and its supporters have pushed the Food and Drug Administration to officially define what constitutes a food product as “gluten-free”.

Finally, on Aug. 2, 2013, the FDA issued a ruling which clearly defined the term “gluten-free” for voluntary food labeling.

Moving forward, manufacturers can only label a food as “gluten-free” if the product does not contain any of the following:

  • an ingredient that is any type of wheat, rye, barley or crossbreed of such grains
  • an ingredient derived from these grains that has not been processed to remove gluten
  • an ingredient derived from these grains that has been processed to remove gluten, if the result is a product which contains 20 or more parts per million (ppm) of gluten

It is worth noting is that the “gluten-free” claim is voluntary for foods that are gluten-free by nature.

A few other aspects of the rule:

  • the FDA is not requiring the use of a symbol alone or in combination with the term
  • manufacturers (not the FDA) are responsible for ensuring that any gluten-free claims made on their labels are compliant with FDA regulations
  • manufacturers have one year after date of publication (or until Aug. 5, 2014) to bring their labels into compliance with the latest standards

Although manufacturers have become more aware and knowledgeable of Celiac disease within recent years, the FDA’s ruling is still a landmark for those with Celiac whose only option for treatment is to follow a gluten-free diet.

Label post- test stripsFor a professional’s input, I spoke to Emily Kaufman, president at Emport, LLC, a company that specializes in the distribution of GlutenTox, a line of gluten test kits which can detect trace levels of gluten contamination in foods and on surfaces.

“Even before the legislation was passed, I was surprised to see how many manufacturers were interested in GlutenTox,” said Kaufman.

“The FDA’s regulation reinforces the commitment that many manufacturers have already decided to make towards safe products and accurate labeling,” Kaufman remarked.

The FDA’s ruling establishes more consistency in food labeling, which will enable easier identification of safe foods for gluten-free eaters.

I asked my friend Julie Reinstein, an incredible gluten-free baker, about her perspective on the rule and how she thinks it will affect consumers.

“The FDA rule was a long time coming and is both positive and negative for the Celiac Community,” she said.

“The positive side is that there is a now a standard definition for the term ‘gluten-free’. What does concern me is whether the number of products available to us will decline. If products get tested and fail, it could reduce our choices and/or drive up the cost of the product itself,” said Reinstein.

label post - grainWhat do you think:

  • will manufacturers comply with the rule and start getting their products tested to meet the FDA requirements?
  • Will gluten-free food become more expensive due to the increased cost for testing these products?
  • Do you think the availability of gluten-free items will be affected based on these new regulations?

Although there are a lot of questions that will only be answered with time, there is no doubt that the FDA’s definition of the term “gluten-free” will allow gluten-intolerant individuals to make food choices with increased confidence.

[Bread photo courtesy of Flickr / rprata. Wegmans sub photo courtesy of Flickr / mhaithaca. Grain photo courtesy of Flickr / tim_norris.]