Speaking up about Celiac Disease

Speaking up about Celiac Disease

Did you know that when you're out and about with friends and family in a social situation that you represent ALL of us in the Celiac Disease and Gluten Intolerant Community? That's a LOT of responsibility! The Gluten-Free ‘diet’ has been replaced by the Keto diet and that leaves it up to us to continue to educate and advocate for ourselves. And we need to do that with accurate information.

***It’s not Celiacs…it’s either Celiac or Celiac Disease. While there may be many Celiacs in the room…there is only one Celiac.

***Celiac is not something new…some 8,000 years after its onset, Celiac Disease was finally identified and named. Recognized in the First Century AD by a Greek Physician named Aretaeus, it was called “koiliakos” after the Greek word “koelia” for abdomen.

***Celiac or Celiac Disease is not an allergy…it’s an Autoimmune Disease. You may indeed have an allergy to wheat, rye or barley…but those are not Celiac Disease.

***Celiac is an inherited disease… about 95% of people who have Celiac Disease have the HLA-DQ2 gene and most of the remaining 5% have the HLA-DQ8 gene. 

***Just because you carry the gene does not mean you will develop Celiac Disease…only that you have a propensity for the disease, nothing more.

***Gluten must be ingested to cause trouble…it’s not absorbed through the skin. There are some who do react topically to the presence of gluten…but that is not the majority of those with Celiac Disease.

***Cross Contact (not cross contamination) is a major issue for those with Celiac. Cross-Contact occurs when gluten is inadvertently transferred from a food containing gluten to a food that does not contain gluten. Cross Contact also applies to allergens and it’s the term most familiar to those working in the food industry.

***Not all Doctors are created equal…if your Doctor completed their training more than 5-10 years ago it’s likely they learned very little about what was presumed to be a “rare” condition. It’s not unusual for patients to know and understand much more about their Disease than Doctors do.

***Gluten Intolerance is actually called Non-Celiac Gluten Sensitivity or NCGS…scientific understanding of Non-Celiac Gluten Sensitivity is in its infancy and changing rapidly. Few Physicians understand the difference between Celiac Disease and Gluten Intolerance and it’s believed that many who receive the diagnosis of NCGS may actually have Celiac.

You are NOT alone. Just remember that whenever you’re out and about. For every 100 people you see there is at least 1 just like you. Celiac Disease affects 1% of healthy, average Americans. That means at least 3 million people in our country are living with Celiac Disease—97% of them remain un-diagnosed due to Physicians and Dietitians unfamiliar with the Disease. Many of us tend to remain quiet about our disease. We don't want to be noticed, we don't want to create a scene, and we don't want to become a burden, so we hide. We refuse to stand up for ourselves, to speak out, to teach...and in doing so we don't pave the way for others to follow. We did not choose this disease...for some reason it chose us, and for that reason we need to continue to be seen and heard.