May is Celiac Disease Awareness Month

Celiac Disease Awareness Month is very close to my heart. I was diagnosed with Celiac Disease almost a year and a half ago, and although it’s something I live pretty comfortably with now, it wasn’t a happy or easy diagnosis to get by any means.

Celiac Awareness Month

One in 133 Americans has Celiac Disease, and upwards of 83% (some say it’s closer to 93%) of those living with Celiac Disease have been either misdiagnosed or completely undiagnosed. To me, it’s absolutely stunning to realize how many Americans are possibly living in discomfort who could be feeling so much better by taking gluten out of their diets.

 So what is Celiac Disease exactly?

Celiac Disease is a digestive disease that damages the small intestine and interferes with absorption of nutrients from food. People who have Celiac Disease cannot tolerate gluten, a protein in wheat, rye, and barley. When those with Celiac Disease eat foods or use products containing gluten, their immune system responds by damaging or destroying villi. Essentially, for those of us with Celiac Disease, our bodies see gluten as a foreign substance, and it thinks that in order to protect us from that invader, they must destroy it, but in reality, our bodies are actually hurting our villi. Villi are tiny, finger-like protrusions in the small intestine that absorb nutrients. Normally our villi allow nutrients from food to be absorbed through the walls of the small intestine into the bloodstream. Without healthy villi, a person becomes malnourished, no matter how much food one eats. The only treatment for Celiac Disease is a strict, gluten-free diet.

Celiac Disease Awareness Month

How do I know if I have Celiac Disease?

Although Celiac Disease is called a digestive disease, it can really be a full body illness. Symptoms of Celiac Disease include everything from nausea, stomach pain, and diarrhea to brain fog, infertility and vitamin deficiencies. Celiac Disease has a wide variety of symptoms that can easily masquerade as other illnesses which is why it is so elusive to diagnose. In fact, the average time it takes to diagnose someone with Celiac Disease is six to 10 years, which is an incredibly long time for someone in constant discomfort.

Despite its wide variety of symptoms, Celiac Disease is actually asymptomatic in 60% of children and 41% of adults, meaning they have no symptoms whatsoever. Despite this, Celiac Disease is, in fact, ravaging their small intestines.

I have some of those symptoms. How do I get screened for Celiac Disease?

 The first step to diagnosing Celiac Disease is to consult your physician about your Celiac-like symptoms. S/he will be able to order the necessary tests (like a tTG-IgA test or an upper intestinal endoscopy) that could lead to a quicker and more efficient diagnosis.

I have Celiac Disease. How do I protect myself?

Self-advocating is a huge part of living a healthy life with Celiac Disease. One way to do that is to wear a medical ID. Medical IDs are great for those with Celiac Disease because they can advocate for you when you can’t. There are more than a handful of medications that contain gluten, and in the event that you are rendered unable to speak for yourself, your medical ID can alert first responders to your condition.

Checking ingredients is also a great way to self advocate. Even though a product might appear gluten free or if you’ve bought it before, it’s always important to double check its ingredients because ingredients and processing conditions can change between batches. Check for ingredients like malt, couscous, semolina, and yeast extract. It’s also important to find out if the product was processed in a facility that also processes wheat, barley or rye products because cross-contamination is possible under those conditions.

Choosing a restaurant as a person with Celiac Disease can be difficult, but good planning is the key to a successful, gluten-free outing. Choose a restaurant that has gluten-free options, and let your server know of your requirements as soon as possible. Asking questions is aways a good way to self-advocate. Asking how and where your food is prepared is also important.

Medical ID Cuff


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  • The list of symptoms is daunting/terrifying. My 13 year old has Celiac, but we keep a very close watch over everything and she hasn’t been glutened in a year. Does she still need to worry about those symptoms? Or are those just signs of undiagnosed Celiac?

    • Hi Kristi! Thanks for your question. These symptoms are things to look out for if you aren’t diagnosed with the illness. Since you are already aware of your daughter’s Celiac diagnosis and she knows to avoid gluten, hopefully she won’t experience any of these uncomfortable symptoms.