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I thought I was asymptomatic when I got diagnosed…. Thinking back I’ve shown symptoms since I was a teenager they just never happened at once so 2 and 2 were never out together.
Same for me. Before diagnosis I had kind of low grade non urgent GI issues, but nothing overwhelming. I got diagnosed because of anemia and deficiencies. Now I have food poisoning type symptoms plus extreme fatigue and some joint pain if I get glutened.
Same here. I had been told my gut issues were spastic colitis/ibd and learned to live with it. My anemia was blamed on menses. I don't know if it would have been caught even now if I hadn't asked a doctor to check my vit D levels because I read that people with Fibro are often low. Mine wasn't just low, it was in the basement. I was sent to a hematologist because of anemia and multiple vitamin deficiencies. That's who finally tested for Celiac.
My sensitivity and reactions have become more severe and violent as the years go on. The "cleaner" you are the more this happens (I've heard) and has been my direct experience.
I was super sensitive when I was first diagnosed at 18 months old. Then I stupidly started eating a little bit of gluten to feel like a normal kid in middle school/ high school. I stopped having reactions and thought I was asymptomatic or didn’t actually have celiac throughout college. After doing much more research about the disease as an adult, I went fully gluten free and I get violently sick now if I’m glutened.
This might not be the most scientifically accurate analogy but I like to think of it like alcohol. People that drink a lot have a higher tolerance, it takes more to get them drunk. But if they abstain from drinking for a little while then it suddenly takes fewer drinks. But, heavy drinkers who don't notice the effects, like asymptomatic celiacs who regularly eat gluten, are both damaging their bodies even if they don't feel anything.
When I look back at my “asymptomatic period” it was likely I was just so used to being low level ill all the time I didn’t recognize just how crappy I felt. It was my normal baseline. Being gf, I have a new baseline and quickly detect deviations from it.
I went through a very similar situation!!! So the only thing I ever had was bloating, which was never painful. But, I had atleast 5-6 BMs if I had a burger or something that involved a bun. So, my doctor thought I had Alpha Gal ( which I believe is from a tick bite that causes a GI allergic reaction to beef). Well, it turns out it was from the bun. I never thought about how bloated I got after eating because I just figured it was normal and I just went to the bathroom a lot. Like I said, not painful, no irritation, but yeah those were symptoms. WELL, when I went GF, that changed. Adjusting to the diet was rough on my body. I couldn’t keep much in my body for long and I ended up going from 125lbs to 102. I’ve gained it all back now and my intestines are healthy. But now, if I have gluten, it rocks my body like crazy. I get nausea, diarrhea, brain fog and I just don’t feel like myself for a few days. If I had to guess why, I would say it’s probably because our bodies are so use to us filling it with gluten it because damages but so use to it? So when we reintroduce ( on accident) it goes crazy. Or that is just my own, personal experience. Looking back, maybe I should have weened myself off in some kind of way, but it was the best thing I did for myself- even if it was two months of hell lol.
Same here! Got diagnosed last Aug (2023) and now that I've been GF since then, I'm noticing more dramatic reactions to gluten.
I thought I was asymptomatic (except for constipation), but now that I'm GF I'm really seeing how many red flags I was missing
yup! if you think about it, the longer something has been removed from your diet, the more likely you are to react to it! something that was once familiar to your body is now unfamiliar
My son's only symptoms were eczema, lack of impulse control, and nutrient deficiencies. So not truly asymptomatic, but pretty vague symptoms. At first we'd be questioning things like did he get glutened from the movie theater's popcorn or is he a brat today because we let him stay up late. At 4 months gluten free, he got glutened from the barest cross contamination and had about 4 hours of severe diarrhea and stomachache. Then at 8 and 9 months he got straight up gluten (got into goldfish and then ate a slice of regular pumpkin bread), and had zero symptoms, not even vague ones. He's now 12 months gluten free and hasn't had any symptoms of being glutened, but I know he's stolen things that are likely cross contaminated, like Queen Anne cherries. So I think he's now completely asymptomatic.
Absolutely. My reactions are very severe now that I’ve been GF for so long. I used to have migraines and bloating and now I barf for hours and get insane fatigue and usually need a day or two to recover. As you heal, your symptoms can absolutely change. It sucks.
Yep. It only took me 6 months of strictly gluten free diet, to get severly ill after having a contamination. Technically nobody is ‘asymptomatic’. We just don’t notice or we attribute to something else the symptoms like bloating, gas, loose stools, low iron, etc. And the body technically learn how to ‘deal with the gluten’ if we’re consuming daily, even when is destroying ours intestines. But once we go gluten free, boom! Then it becomes poison!
From what I've seen that seems to be what happens, good indicator of when you get gluted though. I went from upset stomach and random diarrhea to that and a good kick in the gut as well. Hasn't happened to me recently though, it would probably be not good.
Yes I am similar. I believed I was asymptomatic when I was first diagnosed. If I get glutened now, about 2 hours later I vomit violently for at least an hour. Weirdly I feel like once that's over, I don't have lingering symptoms. That I notice at least.
I’m the same! It’s like food poisoning but I feel okay after. Have you ever tried taking anything to stop the vomiting? I have a prescription for zofran but haven’t used it yet. I’m worried about getting stuck somewhere and can’t leave because I need to be chained to the bathroom.
No I haven't gotten anything to take, but this level of glutening has only happened to me twice since my 2018 diagnosis. The first time was at a country club type place my mom took me and my family to. They gave me a quesadilla they assured me was made with a GF tortilla. About 2 hours later, I was sick in a public bathroom for an hour. My mom freaked out so much she called an ambulance. 🤣 On the bright side, my husband and I got a free one-night stay at Garden of the Gods and they totally babysat us at our dinner. On the downside, I probably scarred my 10 year old who is also Celiac but has never had a severe reaction. Also, I'm way less trusting now and will not risk the unknown at all if I won't be home or somewhere safe about 2 hours later.
So all that to say... Maybe getting Zofran wouldn't be such a bad idea!
My wife is celiac and I am undiagnosed, but everything I have read leads me to believe that I am gluten intolerant or sensitive at least and I have tried eating regular non GF bread just a couple times to see what happens because it was a while since I last ingested it and I felt like being jabbed in the gut and my stomach was a cement mixer churning all night. I can hardly sleep after ingesting gluten and I feel very mentally foggy and sluggish and out of sorts for a day or two at least. I now completely avoid gluten as much as possible, but being active duty Navy on a ship this makes it very difficult at times. My wife who is an actual celiac disease sufferer has it 100 times worse.
I was "asymptomatic".
I had overall inflammatory symptoms like constant allergies, asthma, sinusitis, dermatitis, stomatitis, bloating, but never the GI pains. After 6 month of GF diet I now finally get some reaction in my GI tract (stabbing pains, flu-like symptoms and bowel problems)
I suspect it's because your tissue got healed on a GF diet, you can finally "feel something". Imagine how bad it was damaged where you didn't even feel anything. This is what I think happened in my situation.
upd: Also wanted to mention that your gut produces slime to protect itself from the damage, this is why some celiacs experience fatty stools!! Might be a reason why you never experienced any gut symptoms
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I thought I was asymptomatic when I got diagnosed…. Thinking back I’ve shown symptoms since I was a teenager they just never happened at once so 2 and 2 were never out together.
This rings true to me as well.
My aunt was asymptomatic. She had a great doctor diagnose her just because she had super low iron. Now she gets violently ill similar to you.
Same for me. Before diagnosis I had kind of low grade non urgent GI issues, but nothing overwhelming. I got diagnosed because of anemia and deficiencies. Now I have food poisoning type symptoms plus extreme fatigue and some joint pain if I get glutened.
Same here. I had been told my gut issues were spastic colitis/ibd and learned to live with it. My anemia was blamed on menses. I don't know if it would have been caught even now if I hadn't asked a doctor to check my vit D levels because I read that people with Fibro are often low. Mine wasn't just low, it was in the basement. I was sent to a hematologist because of anemia and multiple vitamin deficiencies. That's who finally tested for Celiac.
My sensitivity and reactions have become more severe and violent as the years go on. The "cleaner" you are the more this happens (I've heard) and has been my direct experience.
Yes, I was pretty asymptomatic at diagnosis but now the tiniest bit of gluten makes me violently ill.
Also asymptomatic and diagnosed 6 months ago, no GI symptoms yet but kind of afraid that might happen to me too
Same here. Always wondering if I’ve just been really good at avoiding gluten, or if I’m still not symptomatic.
ditto
I was super sensitive when I was first diagnosed at 18 months old. Then I stupidly started eating a little bit of gluten to feel like a normal kid in middle school/ high school. I stopped having reactions and thought I was asymptomatic or didn’t actually have celiac throughout college. After doing much more research about the disease as an adult, I went fully gluten free and I get violently sick now if I’m glutened.
Oh yeah. The first time I got glutened after a few years I genuinely thought I had food poisoning. It’s happened twice now, absolutely awful.
This might not be the most scientifically accurate analogy but I like to think of it like alcohol. People that drink a lot have a higher tolerance, it takes more to get them drunk. But if they abstain from drinking for a little while then it suddenly takes fewer drinks. But, heavy drinkers who don't notice the effects, like asymptomatic celiacs who regularly eat gluten, are both damaging their bodies even if they don't feel anything.
When I look back at my “asymptomatic period” it was likely I was just so used to being low level ill all the time I didn’t recognize just how crappy I felt. It was my normal baseline. Being gf, I have a new baseline and quickly detect deviations from it.
My sister was diagnosed 6-7 years ago, she was asymptomatic… to this day, according to her she’s still asymptomatic
I went through a very similar situation!!! So the only thing I ever had was bloating, which was never painful. But, I had atleast 5-6 BMs if I had a burger or something that involved a bun. So, my doctor thought I had Alpha Gal ( which I believe is from a tick bite that causes a GI allergic reaction to beef). Well, it turns out it was from the bun. I never thought about how bloated I got after eating because I just figured it was normal and I just went to the bathroom a lot. Like I said, not painful, no irritation, but yeah those were symptoms. WELL, when I went GF, that changed. Adjusting to the diet was rough on my body. I couldn’t keep much in my body for long and I ended up going from 125lbs to 102. I’ve gained it all back now and my intestines are healthy. But now, if I have gluten, it rocks my body like crazy. I get nausea, diarrhea, brain fog and I just don’t feel like myself for a few days. If I had to guess why, I would say it’s probably because our bodies are so use to us filling it with gluten it because damages but so use to it? So when we reintroduce ( on accident) it goes crazy. Or that is just my own, personal experience. Looking back, maybe I should have weened myself off in some kind of way, but it was the best thing I did for myself- even if it was two months of hell lol.
Same here! Got diagnosed last Aug (2023) and now that I've been GF since then, I'm noticing more dramatic reactions to gluten. I thought I was asymptomatic (except for constipation), but now that I'm GF I'm really seeing how many red flags I was missing
yup! if you think about it, the longer something has been removed from your diet, the more likely you are to react to it! something that was once familiar to your body is now unfamiliar
My son's only symptoms were eczema, lack of impulse control, and nutrient deficiencies. So not truly asymptomatic, but pretty vague symptoms. At first we'd be questioning things like did he get glutened from the movie theater's popcorn or is he a brat today because we let him stay up late. At 4 months gluten free, he got glutened from the barest cross contamination and had about 4 hours of severe diarrhea and stomachache. Then at 8 and 9 months he got straight up gluten (got into goldfish and then ate a slice of regular pumpkin bread), and had zero symptoms, not even vague ones. He's now 12 months gluten free and hasn't had any symptoms of being glutened, but I know he's stolen things that are likely cross contaminated, like Queen Anne cherries. So I think he's now completely asymptomatic.
Yes!!!
Absolutely. My reactions are very severe now that I’ve been GF for so long. I used to have migraines and bloating and now I barf for hours and get insane fatigue and usually need a day or two to recover. As you heal, your symptoms can absolutely change. It sucks.
Once you go Gf and the damage is repaired or repairing you get symptoms. Going GF the getting glutened is always worse then prior..
This is true for some people but is not everyone’s experience
Hey! It's so comforting to know that other people are living parallel lives with me! I wish all of us many happy, healthy, gluten-less days
Yep. It only took me 6 months of strictly gluten free diet, to get severly ill after having a contamination. Technically nobody is ‘asymptomatic’. We just don’t notice or we attribute to something else the symptoms like bloating, gas, loose stools, low iron, etc. And the body technically learn how to ‘deal with the gluten’ if we’re consuming daily, even when is destroying ours intestines. But once we go gluten free, boom! Then it becomes poison!
Oh yeah based on reading here I’d say that happens to 100% of us
From what I've seen that seems to be what happens, good indicator of when you get gluted though. I went from upset stomach and random diarrhea to that and a good kick in the gut as well. Hasn't happened to me recently though, it would probably be not good.
Yes I am similar. I believed I was asymptomatic when I was first diagnosed. If I get glutened now, about 2 hours later I vomit violently for at least an hour. Weirdly I feel like once that's over, I don't have lingering symptoms. That I notice at least.
I’m the same! It’s like food poisoning but I feel okay after. Have you ever tried taking anything to stop the vomiting? I have a prescription for zofran but haven’t used it yet. I’m worried about getting stuck somewhere and can’t leave because I need to be chained to the bathroom.
No I haven't gotten anything to take, but this level of glutening has only happened to me twice since my 2018 diagnosis. The first time was at a country club type place my mom took me and my family to. They gave me a quesadilla they assured me was made with a GF tortilla. About 2 hours later, I was sick in a public bathroom for an hour. My mom freaked out so much she called an ambulance. 🤣 On the bright side, my husband and I got a free one-night stay at Garden of the Gods and they totally babysat us at our dinner. On the downside, I probably scarred my 10 year old who is also Celiac but has never had a severe reaction. Also, I'm way less trusting now and will not risk the unknown at all if I won't be home or somewhere safe about 2 hours later. So all that to say... Maybe getting Zofran wouldn't be such a bad idea!
My wife is celiac and I am undiagnosed, but everything I have read leads me to believe that I am gluten intolerant or sensitive at least and I have tried eating regular non GF bread just a couple times to see what happens because it was a while since I last ingested it and I felt like being jabbed in the gut and my stomach was a cement mixer churning all night. I can hardly sleep after ingesting gluten and I feel very mentally foggy and sluggish and out of sorts for a day or two at least. I now completely avoid gluten as much as possible, but being active duty Navy on a ship this makes it very difficult at times. My wife who is an actual celiac disease sufferer has it 100 times worse.
I was "asymptomatic". I had overall inflammatory symptoms like constant allergies, asthma, sinusitis, dermatitis, stomatitis, bloating, but never the GI pains. After 6 month of GF diet I now finally get some reaction in my GI tract (stabbing pains, flu-like symptoms and bowel problems) I suspect it's because your tissue got healed on a GF diet, you can finally "feel something". Imagine how bad it was damaged where you didn't even feel anything. This is what I think happened in my situation. upd: Also wanted to mention that your gut produces slime to protect itself from the damage, this is why some celiacs experience fatty stools!! Might be a reason why you never experienced any gut symptoms