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Celiac Awareness Month: 5 Things a Celiac Would Like You to Know

Celiac Awareness

May 1st marked the kick-off to Celiac Disease Awareness Month – a month dedicated toward bringing awareness to a very misunderstood condition.

The theme for the 2014 campaign by the National Foundation for Celiac Awareness is “Heroes Within Us,” recognizing that heroes do not always wear a cape or leap over tall buildings in a single bound. A hero is one who does extraordinary things in the face of difficulty. And everyone who battles a food intolerance, sensitivity or allergy is a hero because it is very difficult to navigate a strict diet in a food-focused world.

What is Celiac Disease?
Celiac disease is not simply an allergy to a certain food. CD is a genetically-based autoimmune disease that is triggered by the ingestion of gluten, a protein found in wheat, barley and rye. When a person with celiac eats gluten, an immune reaction is set into motion that damages the villi in the intestine which consequently interferes with the absorption of nutrients. There is no cure.

It is estimated that 1 in 133 Americans has celiac disease, however, more than 80% of them are undiagnosed or misdiagnosed. This is because there are many, many symptoms that lead someone to be tested for celiac disease. But, the average time to a confirmed diagnosis is sometimes 6 to 10 years! During that time, a celiac can suffer a great deal of damage. OR, confusingly enough, may not have any of the classic symptoms of bloating/gas/abdominal pain, diarrhea/constipation, fatigue, tingling or numbness in hands/feet, joint pain, poor weight gain, delayed growth, rash, etc.

Because the disease is becoming more common – or at least we are becoming more aware that it exists – a gluten-free diet is becoming more well-known even among lay-people. In fact, according to one industry group, gluten free products have reached $20 billion with continued growth into the next several years expected.

However, there is a confusing issue out there. Gluten-free has also been embraced by those who feel that it is simply a more healthful way to eat or that it will be the key to ultimate lasting weight loss.

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Unfortunately, while the popularity of gluten-free diets have made it easier for a celiac person to find great gluten-free alternatives (we once had to pay extraordinarily high prices in specialty stores for such products), it has also made the term “gluten free” seem trendy and not medically necessary.
But for a celiac, gluten-free is a medical necessity. The only treatment for the condition is a strict, lifelong avoidance of even the slightest amount of gluten.

To help with bringing a better awareness to celiac disease and gluten-free living, here are some common misconceptions celiacs would like to dispel:

Yes, even just a little bit will hurt me.
One would never – ever – offer a person who has a peanut allergy even a tiny bit of nuts. While celiac disease is not technically an allergy, even the slightest amount will still hurt us. No, we won’t stop breathing. However, continuing to eat gluten despite our disease increases the risk of serious malnutrition, osteoporosis, thyroid disease, and even certain types of cancers (such as lymphoma). So, when you have someone who is questioning every bit of your food preparation technique, please know that we are doing it because we do actually need to avoid every bit of gluten.

I did not choose this disease. It chose me.
As I mentioned above, celiac disease is a genetically-based autoimmune disease. We did not choose to have to live with such a strict diet, so please do not label us as “high-maintenance” or “picky eaters.” We are just doing the best with the genes God gave us.

The disease is not all in my head.
Celiac Disease was first discovered in the 1st century by Greek physician Aretaeus of Cappadocia. It was much more rare at the time, but it did exist. Over centuries worth of research, we now know celiac is a very real disease where the body reacts inappropriately to the ingestion of gluten. The specific gene affected has been narrowed down to either DQ2 or DQ8 and the missing autoantigen identified as “tissue transglutaminase.” The disease process can be confirmed with blood tests and an EGD which takes a biopsy of the small intestine and tests it for damage.

Being gluten free is not so simple as just "avoiding bread".
It would be so much simpler if all we had to do was order a burger without a bun or pick the croutons out of a salad. There are many - sometimes hidden - sources of gluten that a celiac must be aware of. Wheat flour is used in so many products, including gravies/sauces, soups, and as an additive to a side dish - such as topping a casserole with cracker crumbs. Wheat or gluten-containing grains are also sometimes used as a filler or flavoring in some processed foods. Every detail of a food label must be scrutinized, and even then we can't always be 100% sure. Some labels for example will use a generic term such as "natural flavorings" which do not disclose the source of such additives.

Please be respectful of my needs.
Above all, celiacs do not wish for you to bend over backwards to make them top priority. However, we do ask that you respect our needs. Don’t lie to us about the food you are presenting to us. If we ask you not to use the same spoon for our meals that you use in your own pasta dish or ask that you use a clean cutting board for making our food after yours, please understand that we ask this because we want to stay healthy. If you can’t accommodate a request, simply say so without judging. We will understand and appreciate that you at least took time to consider it.