Taken Seriously

[Jmartes71]

Celiac Disease is not taken seriously and I want that to change. It affects one in so many ways and not being properly cared for is frustrating and inhumane. On our worst days the last thing we are thinking about is going to the the hospital.Im 54 years old and went through the celiac ringer with incompetent doctors not understanding the disease and gaslighting me when not feeling well.Ive learned so much with the celiac community and had to school my new gi whose actually listening and understanding, now, this year 2025 when i was half told in 1994 by colonoscopy and endoscopy..Pregancy doesn't affect the public but it's a reportable condition. I want to make celiac disease a reportable disease to protect the patients from being medically gaslight as I was.I want awareness, I want to not have another go through what Ive been through. In order for celiac disease to be taken seriously, I truly think it needs to be reportable disease to protect the patients. I did email Adam Gray and also my local representative.

[Scott Adams]

Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.