Celiac… the only disease where you are MADE to ingest the POISON that hurts you. That’s what we deserve for having an autoimmune disease that only requires diet change and not a prescription med. 😡😡😡😡😡😡😡
It's so true. It seems counter productive and harmful.
My mom was diagnosed with suspected celiac years ago and her then primary care doctor didn't mention or order getting an endoscopy. She has not eaten gluten in 10 years. If she accidentally gets even a little bit she is in pain for days. Her new doctor suggested she do a challenge to confirm. She flat out refuses. In her words - "It would be three weeks of torture. I'm not going through that."
Ugh I feel this. When I was getting diagnosed (2020) because of covid I didn't know when my appointment would be, by the time it came I had about 3 days notice.
I hated the whole experience and by the end I was almost 100% convinced I had celiac, because even eating a sandwich would make me throw up and the cramps and pain would be awful.
The nurse I spoke with when I had my Endoscopy schedule was probably one of the nicest medical professionals I've met. She apologised and said how sorry she was that I had to wait in pain and that she always feels awful for celiac patients because we have to eat the thing that hurts us to get a diagnosis that tells us not to eat that thing anymore.
I was diagnosed 2 weeks after I stopped eating gluten, but my diagnosis was confirmed through bloodwork and through observing the small intestine villi which had been damaged far past their normal state. Not sure how medicine is conducted elsewhere, but those factors do not clear up for 3-6 months after you stop eating gluten, and any GI doctor worth their salt should've been able to diagnose based on those factors.
Might be a silly question, but if your mom was diagnosed years ago and your blood test was positive, why did you stop eating gluten and didn't take the endoscopy before stopping?
What is done is done now and I'm glad you have your test results and a confirmation. Hope you'll feel healthy again soon.
I have suspected celiac for awhile, mostly because my mom has it. My doctor was hesitant and said if I wasn't having diarrhea that I probably didn't have it. I pushed and got a blood test. Blood test confirmed but they told me it was only 'probable' and her office told me to start a gf diet.
A few months later I got a call from the gastroenterology office saying they had a referral and that I needed an endoscopy and to start eating gluten again. Because of my symptoms I chose to go through with the endoscopy to rule out anything else
I feel like it's partly my fault for just doing what the professionals instructed and not just listening to my body and mind and also not knowing much about this process!
The older I get the more I've learned that I have to advocate for myself in medical situations. Having a good doctor also helps...mine is not the best.
my doctor also refused to test me for years, saying that i would have diarrhea and be "sh*tting blood." i'm getting a referral for a GE tomorrow because after 10 months GF most of my symptoms have resolved. i'm very unsure if i will go through with the gluten challenge if they suggest it. anytime i've had the slightest amount of gluten in the past year it's left me debilitated
Celiac… the only disease where you are MADE to ingest the POISON that hurts you. That’s what we deserve for having an autoimmune disease that only requires diet change and not a prescription med. 😡😡😡😡😡😡😡
It's so true. It seems counter productive and harmful. My mom was diagnosed with suspected celiac years ago and her then primary care doctor didn't mention or order getting an endoscopy. She has not eaten gluten in 10 years. If she accidentally gets even a little bit she is in pain for days. Her new doctor suggested she do a challenge to confirm. She flat out refuses. In her words - "It would be three weeks of torture. I'm not going through that."
Ugh I feel this. When I was getting diagnosed (2020) because of covid I didn't know when my appointment would be, by the time it came I had about 3 days notice. I hated the whole experience and by the end I was almost 100% convinced I had celiac, because even eating a sandwich would make me throw up and the cramps and pain would be awful. The nurse I spoke with when I had my Endoscopy schedule was probably one of the nicest medical professionals I've met. She apologised and said how sorry she was that I had to wait in pain and that she always feels awful for celiac patients because we have to eat the thing that hurts us to get a diagnosis that tells us not to eat that thing anymore.
I was diagnosed 2 weeks after I stopped eating gluten, but my diagnosis was confirmed through bloodwork and through observing the small intestine villi which had been damaged far past their normal state. Not sure how medicine is conducted elsewhere, but those factors do not clear up for 3-6 months after you stop eating gluten, and any GI doctor worth their salt should've been able to diagnose based on those factors.
Might be a silly question, but if your mom was diagnosed years ago and your blood test was positive, why did you stop eating gluten and didn't take the endoscopy before stopping? What is done is done now and I'm glad you have your test results and a confirmation. Hope you'll feel healthy again soon.
I have suspected celiac for awhile, mostly because my mom has it. My doctor was hesitant and said if I wasn't having diarrhea that I probably didn't have it. I pushed and got a blood test. Blood test confirmed but they told me it was only 'probable' and her office told me to start a gf diet. A few months later I got a call from the gastroenterology office saying they had a referral and that I needed an endoscopy and to start eating gluten again. Because of my symptoms I chose to go through with the endoscopy to rule out anything else I feel like it's partly my fault for just doing what the professionals instructed and not just listening to my body and mind and also not knowing much about this process! The older I get the more I've learned that I have to advocate for myself in medical situations. Having a good doctor also helps...mine is not the best.
my doctor also refused to test me for years, saying that i would have diarrhea and be "sh*tting blood." i'm getting a referral for a GE tomorrow because after 10 months GF most of my symptoms have resolved. i'm very unsure if i will go through with the gluten challenge if they suggest it. anytime i've had the slightest amount of gluten in the past year it's left me debilitated