A few days ago, the National Foundation for Celiac Awareness launched their SERIOUSLY, CELIAC DISEASE campaign. This is a research-tested (yes, tested) education campaign for initiating conversation about celiac disease testing with family members. This campaign features the hashtag #TalkTellTest, outlying the three steps of the process. The goal is for those with family members who are at-risk (like my genetically pre-disposed mom and dad – hint hint) to have a talk that is research-based methodology to improve testing rates – and therefore, diagnosis of celiac disease.
This campaign includes the Seriously, Celiac Disease PSA. My arms broke out in chills the first time I saw this video. It’s so accurate – focusing on those who question celiac disease – “seriously?” – as a serious autoimmune condition. How often have you told someone you have to eat gluten free because of celiac, and they say something like, “oh yeah, my girlfriend was going free to lose weight,” or “wow, that sucks, can’t you have just a bite of a cookie?”
There are several points in the video that I just wanted to stand up and slow clap during the PSA. Points that might not be known, and points that are critically important to share with others about having celiac disease.
1. “It’s an autoimmune disease” – Many people think this is just a food intolerance, or maybe even a food allergy. An autoimmune disease causes long-term damage if left untreated, and it’s a disease that involves the body attacking itself upon a trigger. Food is our trigger, which is unique – and sometimes very confusing for people to understand.
2. “Left untreated it can cause…” – I hear that people cheat all the time on their gluten-free diet as a celiac. There is no need to continue to harm your body from the inside out just for a cookie. No cookie is worth it. Left untreated celiac disease can cause numerous issues and other diseases.
3. “It’s genetic” – It’s not random that you have celiac disease, it’s inherited from your genes. Your genes come from your family members, and that’s why it’s so important that if you are diagnosed, your family also gets tested for celiac as well. While you can get a genetic test to determine your risk for celiac disease, it’s often easier and cheaper (covered by insurance) to start with the blood test screening.
4. “…but I don’t have any symptoms” – The asymptomatic celiac is so worrisome for the community. Celiac could be ravaging their body from the inside, with all the risk of an autoimmune disease, but with no symptoms upon gluten ingestion. This tricky type of celiac disease should be screened during the process and I commend NFCA for including this very important point in the diagnostic process. Doctors often won’t test for something that you don’t have symptoms for, so it’s important to request the blood test if you have family members with celiac.
5. “It took me 12 years to get diagnosed” –Celiac disease is often misdiagnosed as many other things. With roughly 300 symptoms of the disease, it can often be mistaken for other digestive disorders (or for me, arthritis, anxiety, etc.). Because of this the length to get properly diagnosed is far too long. We need to get our diagnostic years to diagnosis down to just months – or days.
6. “Take the first step…” – It’s true, the blood test is only the first step. The blood test is really just a screening process, and the next step is an upper endoscopy, to take samples of your damaged small intestine for confirmation of celiac disease. These both need to happen on a full-gluten diet, so the doctor can confirm the damage that gluten has caused in your body. While the process may be hard, it’s so worth it for a diagnosis. Starting small – and just asking for the blood test – is a good way to ease into the process for family members.
7. “Tell them the facts” – Too often is celiac disease conversation full of myths and uninformed “facts.” NFCA has compiled medically proved information about celiac disease so you can present informed facts to family members. Disprove myths and speak the truth to help people understand how serious celiac disease really is.
Now, it’s important to note that this campaign isn’t supposed to be something you forward on an email chain to your whole family. It’s also not something you should tweet, text, or Facebook message to your family members. This campaign is meant to be a one-on-one sit-down conversation that you have with family. This is a serious disease that requires a serious conversation.
After you check out this campaign, does this inspire you to #TalkTellTest with your family? Have you had a positive (or negative) experience trying to talk to your family members about getting tested for celiac disease?Originally posted April 2015