After reading Alysa's post "A Lightbulb Celiac Moment", last week, I was inspired to write something about the topic as well. It is so true and so important that celiacs stop explaining their disease as an allergy just to make it "easier" for non-celiacs to understand. I have done it and so have many others. It is an innocent attempt to "dumb it down" and quickly get over the awkward "why I can't eat that" explanation. Really though, it is only furthering the ignorance and misunderstanding of the severity of celiac disease.
As Alysa said, "Because I have been using the word “allergy” I have missed out on opportunities to educate and advocate for the celiac community." She hit the nail on the head with that one. We should be educating every moment we can! It will only bring about the awareness we crave and the safety we need. We are all doing a disservice to the celiac community when we call it an allergy.
So, you may be wondering what the difference is anyway? An allergy is when a specific food is ingested that triggers a severe immune response by the body, mistaking the food as a harmful invader like a virus or bacteria. Thus, the body can react mildly (with sneezing, coughing, itching, hives) or severely (anaphylaxis, trouble breathing, swelling of the tongue or mouth). With allergies, you have the potential to grow out of them, but the foods that trigger the response should always be avoided, no matter the severity. An Epi-Pen is usually given as well.
When it comes to celiac disease, this is an autoimmune disease. An autoimmune disease is when your immune system attacks you own healthy body cells, damaging the cells, tissues, and organs. So when gluten (in the case of celiac disease) is ingested, the body attacks itself causing severe damage to the small intestine and villi (little "hair-like" structures lining the intestine). This causes malabsorption of essential nutrients, vitamins, minerals, etc. when food is eaten as long as gluten stays in the diet. Over time this results in not only present symptoms (pain, diarrhea, migraines, etc.), but severe long-term health consequences such as anemia, osteoporosis, infertility, deficiencies, seizures, tumors, cancer, etc.
The ONLY way to effectively "treat" celiac disease is by adhering to a strict gluten-free diet for life. So when we tell people that celiac is an allergy to gluten, that is wrong. It is an autoimmune disease just as the name says. It is also a genetic disease, meaning out genes (DNA) is altered. If these genes manifest into celiac, then it won't just go away.
When we find ourselves in the position of revealing our need to be gluten-free, whether at a restaurant or to a new friend, we must tell them the truth. Even though this may take a few more minutes to explain and a little more work for them to understand, we owe it to ourselves and other celiacs to advocate for our disease. Alysa also said that when using the word allergy, we know people will be more vigilant about making sure they take all the right precautions to keep gluten away, but if we start explaining out disease for what it truly is, people will start taking this name, "celiac disease" just as serious and important. Removing the negative media stigmas around gluten and educating society on what can be a "life or death" health condition.
Both allergies and autoimmune diseases are extremely serious, but they are different and should be explained as such. Let's all vow to provide the real information when educating and discussing our health conditions with those that do not yet know. Do it for yourself, do it for the other person's knowledge, and do it for the community.
So tell me:
+ Have you simply thrown out the word "allergy" because you know it will get the correct response?
+ What do you find most difficult when explaining celiac disease to someone?
+ If you don't have celiac disease, what confuses you about it?
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