axm9237 replied to axm9237's topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsSorry for the late response. I've been having internet trouble. I just wanted to thank you all for your insight. It was very helpful! In weighing the pros and cons of testing, I've decided to just eliminate gluten on my own for now, and if I need to get tested later on, I'll deal with it then. Unfortunately it was the cost of testing that ultimately made the choice for me. There's just no possible way at this time that I could afford it.
axm9237 posted a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsHello, all! This is a long one, but there IS a question at the end, so feel free to skip to that. It all started with an article in Prevention magazine that my mother left on my coffee table. “Could it be gluten?” it asked. “Check off any of these common signs of gluten sensitivity that you experience.” Frequent constipation or diarrhea? Check, both, alternating. Abdominal pain or stomach cramps? Yep. Headaches? Every day of my life. Fatigued even after getting enough sleep; difficulty keeping mental focus; skin rashes; waking up with stiff joints; depression? Always, yes, sometimes, yup, and check. So I decided, okay, I’ll eliminate gluten for the month of June and see if I feel better. Then came the inevitable Internet Research. I try not to get sucked into the catastrophizing that usually happens when people search for medical symptoms and diagnosis on Google. Instead, I tried to focus on what would help me to learn more about gluten and prepare for this month-long experiment. Initially I had thought maybe I have a bit of a gluten sensitivity, but it’s not nearly bad enough to be celiac disease, right? Because I had this impression that celiac disease, for everyone who has it, is excruciating stomach pain and crying in the bathroom because it hurts so badly. I feel like crap all the time, but I manage. But the more articles and blogs I read about symptoms and testing and how amazing people felt after eliminating gluten, the more I got sucked in, and I learned that not everyone with celiac has those super-severe symptoms. As I read personal stories and lists of symptoms, I thought to myself, “This could be me. This could be why I’ve been sick in so many ways for nearly my entire life.” Last fall, I participated in a “cleanse” for three weeks, during which I eliminated dairy, wheat, meat (only for the first week), caffeine, etc. and was basically just eating fruits, veggies, rice, and lentils. If I had been smart, I would have finished it properly by gradually reintroducing the different types of foods and observing my body’s reactions. Those three weeks were probably the healthiest I’ve felt in my life, but I didn’t realize it until afterwards when all my symptoms reappeared, and I wasn’t able to pinpoint the exact cause. I’ve been wavering between just eliminating gluten on my own or actually going to the doctor to be tested for celiac. I don’t have a PCP, and I’m not really one for going to doctors because I haven’t had the greatest experiences with them in the past several years—plus it’s so expensive, even with insurance. Yesterday, I called and was put on a waiting list to see the doctor who seems to be my area’s medical expert regarding celiac; he’s booked through June. I’m not sure why, but part of me feels like that official diagnosis is important to have. Maybe for some kind of validation or something? At the same time, why not just cut out gluten, see if I feel better, and be happy with that, without wasting money on tests and office visits? But then what if I decide, later on, that I SHOULD get tested, and I have to go back on gluten and be miserable all over again? So tell me: what are the benefits of going to the doctor, getting tested, receiving an official diagnosis? Are there any? I saw another thread that was kind of asking a similar question, and I found some good insight there. I was hoping to get some more opinions. Do you think that a diagnosis might make it more "real"? Or make you take it more seriously? I'm glad I found this forum. It's been very helpful as I've tried to become more aware of everything surrounding gluten. :-)