I’ve been a bad boy. So many emails that I have not responded to or acknowledged. I swear I do read every one of them, but time prevents me from responding at times. So my apologies to those who have reached out and have not heard back from me. I will give myself a gentle spanking on your behalf.
Here’s an email I received that some of you may relate to. Celiac disease has an amazing of amount of symptoms, but the general population, including way too many doctors, only seem to think that if you don’t have bathroom issues, you can’t have celiac disease. Well…this fellow celiac wants to set the record straight. Here’s her email.
I lost my Mom to cancer in February and while it’s obvious that the loss is profound, I am surprised by one of my grieving manifestations. I am royally pissed off that the diagnosis rate is abysmal in this country. Lack of awareness, uneducated physicians, fad diets…..so many reasons but I think I have a reason to add to the list.
My girls and I were labeled as “atypical Celiacs” because we lacked GI symptoms. I believe that we may be the “typical” and that some of the undiagnosed folks are just like us, and suffering with a myriad of the 300 manifestations that Celiac likes to inflict, but sans the sh*ts. Very often my girls and I are faced with scrutiny from within the Celiac community, when we disclose that we lack GI symptoms.
It’s like you have to be able to throw out endless bathroom stories and sonic sh*ts to be accepted into the real Celiac fold. Why do we go to see a pediatric GI once a year when he looks at us like we’re aliens from another planet?
I would love if you could write about some folks with Celiac that resemble our family, in the hopes that the Celiac family would recognize the possibility that we might just be the norm and work towards helping all of those that are suffering from Sh*tless Celiac. (I think that’s our official diagnosis…..soon to be found in medical text books). Gutless Celiac just doesn’t sound good because we’re pretty flipping brave.
I love your blog….you bring me joy, awareness, and insights. Thank you!
I totally get the frustration. Bathroom issues are the least of my symptoms as well. Though I do have periods where John and I spend a lot of quality time together, my celiac manifests itself in a myriad of different symptoms. It was one of the many items we need to keep advocating about in regards to our disease. Celiac ain’t just tummy troubles. It can affect the entire system. Seriously…no shit.
I’d love to hear from others in the community about this. Do you suffer “silently” and if so, how does that affect you from a celiac standpoint?