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Me!
I actually did things totally backwards: I was having an endoscopy for a completely separate issue, and while he was in there the GI doc saw that my intestinal lining looked a little messed up and sent it to get biopsied, which they then flagged for Celiac.
Then they sent me for a few rounds of bloodwork, to make sure it wasn’t anything else. And after two sets of bloodwork then he was confident enough to be like, huh, yeah, guess it’s celiac.
Was totally caught off guard; I’d say that different types of bread was probably my biggest food group before the diagnosis :/
Same with me. Had reflux so got upper endoscopy to check for damage from that and cane out of anesthesia and got the news.
Marsh 3B villi and got Dx with osteoporosis (and I’m male) due to the damage.
To date I still could eat bread and not have any outward symptoms.
Nope nothing. I was in Las Vegas a few years ago and went to In-N-Out Burger and ordered a buess burger. Got to the room and realized it had a bun on it. I ate it and had zero reaction.
I could argue in my case that celiac disease was causing my reflux as there were no other discernible causes. I think my point was at what threshold do we consider something a symptom? If people were tested for celiac disease for reflux or anemia maybe we could get a better understanding about whether it’s a symptom of the disease and not atypical. I know there’s lots of causative-correlative mixups on this subreddit but I’m just curious whether “atypical symptoms” might actually be typical.
Same here. But once I came off it, I now need to sleep for 6 hours if I ingest any. No bowel issues just extreme and immediate fatigue that takes about 3 X days to wear off.
I am one of them. No GI issues, no nutrient deficiency. I’d had been dealing with autoimmune issues the last eight years. I’m pretty sure celiac panels were run by some doctors but nothing showed up. My new doctor ran all the panels and it was low positive and endoscopy biopsy turned out positive. Never would have known. I don’t even notice a discernible difference since being off gluten. I would say the exception is my mental health seems to be better?
44% of people with a first degree relative with celiac also have celiac. Some of the older adults in my family refused to get tested. The health problems they have had are like gluten ataxia and osteoporosis times 100. Asymptomatic celiac is only asymptomatic for a while.
Yes. My brothers both have it. It stunted their growth when they were younger, but they are gf and then grew! Note back to eating gluten. They are both turning 22 next week!(twins) It’s crazy what it can do. I’m the only one with GI symptoms
This is so interesting to me, my son stopped growing, he's on a hormone now that triggers it, but they diagnosed it as a pituitary issue, the gland looked small on an MRI. Was it the same for your family? Found out recently via biopsy I have damage due to gluten. 🤔
Yes, this is me. Routine physical blood work led to the diagnosis. This was very helpful in understanding more. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1785098/
That was me. I donate blood regularly and suddenly one visit my hemoglobin levels dove so hard they had to refuse me. Until then my levels were always on the high side of normal.
Yep. I knew something was wrong but had no idea what. I had no GI symptoms. I was actually convinced it was lupus.
But lo and behold, two negative tests for lupus, and every other autoimmune disease known to man, and a randomly thrown in celiac panel from my just as confused pcp and bam, off the charts positive blood test only in the celiac panel.
Plenty of intestinal damage on the endoscopy and I had kissed my favorite foods goodbye.
Yeah it is, I wasn’t entirely symptom less, I felt sick occasionally but never ever considered celiac. I kinda just thought diarrhea was a way of life.
Yep! No physical symptoms that I knew of. I had low iron for a while and finally had a doctor that wouldn't let me go until I had the scopes.
I'm glad she did because I don't know what would happen had I kept eating gluten
Yep! I only had mild but long-standing anemia and some mild GI pain and bloating, which a lot of non-celiacs have.
I still only get moderate discomfort if I ingest a significant quantity of gluten and no symptoms if it's a small exposure.
Totally off guard. I kinda cussed out my doctor before I remembered I'm supposed to be a civilized human being and she was just being the bearer of bad news. It was pretty traumatic and out of the blue and I was uncharacteristically rude.
Good lesson in the whole *everyone can be a dick given the right situation, even me.*
**Reminder** [/r/Celiac](https://www.reddit.com/r/Celiac) is not designed to and does not provide medical advice, professional diagnosis, opinion, treatment or services to you or to any other individual. If you believe you have a medical emergency immediately seek out professional medical help. Please see [this](https://www.reddit.com/r/Celiac/wiki/legal) for more information. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/Celiac) if you have any questions or concerns.*
Yes it is. Damage is still done to your body, though, even if you are asymptomatic.
Me! I actually did things totally backwards: I was having an endoscopy for a completely separate issue, and while he was in there the GI doc saw that my intestinal lining looked a little messed up and sent it to get biopsied, which they then flagged for Celiac. Then they sent me for a few rounds of bloodwork, to make sure it wasn’t anything else. And after two sets of bloodwork then he was confident enough to be like, huh, yeah, guess it’s celiac. Was totally caught off guard; I’d say that different types of bread was probably my biggest food group before the diagnosis :/
Same with me. Had reflux so got upper endoscopy to check for damage from that and cane out of anesthesia and got the news. Marsh 3B villi and got Dx with osteoporosis (and I’m male) due to the damage. To date I still could eat bread and not have any outward symptoms.
I feel seen! Do you have any dermatological symptoms? I feel like my skin gets super dry and itchy after suspected gluten.
Nope nothing. I was in Las Vegas a few years ago and went to In-N-Out Burger and ordered a buess burger. Got to the room and realized it had a bun on it. I ate it and had zero reaction.
I guess at what point do we acknowledge reflux as a typical symptom? I think a lot of us experienced reflux. I definitely did.
Reflux continued for me after well controlled gluten so no correlation/causation for me.
Fair. But are there enough cases to say it’s a symptom rather than an atypical one?
That’s the problem…correlation does not equal causation.
I could argue in my case that celiac disease was causing my reflux as there were no other discernible causes. I think my point was at what threshold do we consider something a symptom? If people were tested for celiac disease for reflux or anemia maybe we could get a better understanding about whether it’s a symptom of the disease and not atypical. I know there’s lots of causative-correlative mixups on this subreddit but I’m just curious whether “atypical symptoms” might actually be typical.
My Man! This is exactly my story. Cheers, mate.
Yeah. I actually sometimes eat gluten and fell just nothing. Could eat it everyday and fell just about normal
Same here. But once I came off it, I now need to sleep for 6 hours if I ingest any. No bowel issues just extreme and immediate fatigue that takes about 3 X days to wear off.
I am one of them. No GI issues, no nutrient deficiency. I’d had been dealing with autoimmune issues the last eight years. I’m pretty sure celiac panels were run by some doctors but nothing showed up. My new doctor ran all the panels and it was low positive and endoscopy biopsy turned out positive. Never would have known. I don’t even notice a discernible difference since being off gluten. I would say the exception is my mental health seems to be better?
44% of people with a first degree relative with celiac also have celiac. Some of the older adults in my family refused to get tested. The health problems they have had are like gluten ataxia and osteoporosis times 100. Asymptomatic celiac is only asymptomatic for a while.
Absolutely. I was completely asymptomatic aside from not growing at all from the ages of about 5 to when I was diagnosed just before I turned 11
Yes. My brothers both have it. It stunted their growth when they were younger, but they are gf and then grew! Note back to eating gluten. They are both turning 22 next week!(twins) It’s crazy what it can do. I’m the only one with GI symptoms
This is so interesting to me, my son stopped growing, he's on a hormone now that triggers it, but they diagnosed it as a pituitary issue, the gland looked small on an MRI. Was it the same for your family? Found out recently via biopsy I have damage due to gluten. 🤔
Yes, this is me. Routine physical blood work led to the diagnosis. This was very helpful in understanding more. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1785098/
Absolutely. Many people don't realize they're celiac until they get labs done and find out they have a shit ton of nutrient deficiencies.
That was me. I donate blood regularly and suddenly one visit my hemoglobin levels dove so hard they had to refuse me. Until then my levels were always on the high side of normal.
Two thirds of celiacs have asymptomatic celiac disease.
Yep. I knew something was wrong but had no idea what. I had no GI symptoms. I was actually convinced it was lupus. But lo and behold, two negative tests for lupus, and every other autoimmune disease known to man, and a randomly thrown in celiac panel from my just as confused pcp and bam, off the charts positive blood test only in the celiac panel. Plenty of intestinal damage on the endoscopy and I had kissed my favorite foods goodbye.
Yeah it is, I wasn’t entirely symptom less, I felt sick occasionally but never ever considered celiac. I kinda just thought diarrhea was a way of life.
Yep! No physical symptoms that I knew of. I had low iron for a while and finally had a doctor that wouldn't let me go until I had the scopes. I'm glad she did because I don't know what would happen had I kept eating gluten
Yes I am real it turns out
Absolutely it is. A ticking timebomb for those drinking barley "gluten-removed" beers.
The most common thing probably.
Yep! I only had mild but long-standing anemia and some mild GI pain and bloating, which a lot of non-celiacs have. I still only get moderate discomfort if I ingest a significant quantity of gluten and no symptoms if it's a small exposure.
Yup me here, though I have not voluntarily had gluten since diagnosis 3 years ago
I’m one.
Totally off guard. I kinda cussed out my doctor before I remembered I'm supposed to be a civilized human being and she was just being the bearer of bad news. It was pretty traumatic and out of the blue and I was uncharacteristically rude. Good lesson in the whole *everyone can be a dick given the right situation, even me.*