After being in the hospital for a while I decided to make my next video on what I noticed with the doctors and what they knew about celiac disease. A lot of you have probably had your fair share of experiences with doctors when it comes to this, but for me it's been 2 years since my last experience. I was hoping it would be a somewhat better experience but it was not at all..I explain more in the video!
Has your experience with doctors in the past about celiac disease been bad or good? Do you think the medical community could be more educated about celiac in general?
The medical community definitely needs to be more educated on celiac disease. It should be a requirement that they take a class or something on it. It took 33 years, numerous doctors, 4 colonoscopies, and 6 surgeries before I finally stumbled upon an amazing doctor Digestive health doctor, Booker Dalton, in Atlanta who knew EXACTLY what was wrong. He says he tests all his patients for celiac when they first come to visit him to rule it out. God bless that doctor. Now, I am currently pregnant and have been trying to find an OBGYN doctor that is familiar with celiac. It has been HARD to find one. My best friend in Savannah has a 3 year old who has all the symptoms of celiac. She has been getting him tested (for everything under the sun) for 2 years trying to figure out what was wrong. She called me and said that the doctors were putting him on acid reflux medicine and some other type of medicine to try and see if that would cure him. I told her to have him checked for celiac. I said demand your doctor check him. The doctors were unfamiliar with it when she brought it up but she showed the doctors my text on what blood tests to do so they did the test upon her demand and guess what?!......he has celiac and he is 100% cured after going gluten free. Whew, I get fired up when it comes to doctors ignorance on Celiac....
ReplyDeleteThat's unbelievable to me that those doctors didn't even know what Celiac was! I just think about all the kids and people out there who probably have Celiac but don't get tested because doctors aren't aware of it. Pretty sad but I hope it changes soon. Thanks for commenting and sharing your story!
ReplyDeleteThis is Taylor's mother. Like the person who commented above it took until I was 29 to be diagnonsed and it only happened by my own research and learning from a friend who went to a holistic nutritionist about gluten allergies and Celiac. I had horrible stomach problems at Taylor's age and went through hospitalizations and numerous testing - endoscopy, barium testing, etc. and was eventually diagnosed with IBS as a teenager. I knew this was wrong but could not get a doctor to figure out what was really wrong. I suffered for 15 to 20 more years and then figured it out on my own after increased symptoms and problems. I highly recommend that those who have figured out they are gluten intolerant, have a gluten allergy or Celiac to advocate and inform as many people as they know because there are so many people out there suffering with the same problems and have no idea that Celiac exists. It is up to us to speak up and educate about this horrible disease that is affecting so many unaware ignored people who are out there suffering.
ReplyDeleteTaylor, you're awesome! And Laura what a great parent you must be. I'm so impressed with Taylor, his attitude and knowledge of Celiac. You must be so proud! Keep it up Taylor. Young people undiagnosed especially need to hear your viewpoint!
ReplyDeleteProud is a serious understatement. Taylor's dedication to helping others and educating himself to better his health is an inspiration. What's even more inspiring is his attitude. He goes through so much every day with his adrenal disorder and now heart problems and never complains or throws a pity party. He's a testament to what positive perspective and attitude can do. I can say without a doubt that he is my hero and an incredible role model for anyone who is trying to better their health or that is dealing with any type of medical condition. He takes great pride in his work and his responsibility as an advisor in the Celiac/Gluten world seriously. I have no doubt in my mind that he is going to change the world for the better and continue to do amazing things that wlll affect people young and old in incredible ways.
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