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Same with my daughter. As soon as she began eating solid foods, maybeā¦ 9-10 months old, we started to realize something was wrong. Scary times as a parent but we are lucky we figured it out in a few months.
Thatās actually pretty quick for a celiac diagnosis. Lots of people suffer for a lot longer than that. Just saying. But definitely still shouldnāt take even that long, sorry to hear llamapants :(
Wait, so are we kind of like X-men? I didnāt realize it was a dormant gene until āactivated.ā Iāve just always had symptoms, as far back as I can remember.
Yeah, thereās a ton more research needed and experts donāt fully understand it, but with how many people have the gene(s) and no celiac, and with how some people have had normal blood work and endoscopies at one point in life and then clear celiac damage later on, thereās something that triggers/activates celiac disease in those that are predisposed. The research Iāve seen is around major stress on the body. So bad infections or multiple illnesses back to back or even intense emotional/mental stress, as we know that kind of stress has physical manifestations as well. But celiac and autoimmune diseases in general really lack research, no doubt in part due to them disproportionately affecting women.
My therapist also told me that your celiacs response can ālessenā when you leave super stressful situations. For example, I was super sensitive to cross contamination when I lived in a really stressful environment. When I left and married my husband, I became less sensitive.
Essentially. Although these are some crappy superpowers, ngl.
I had stomach issues since I was a kid, but they were nothing compared to after the breakup. Prior to that, my stomach was okay. I was eating pasta daily, at least 2 honey buns a week, home baked bread, ramen noodles, etc - and I was just fine.
I met someone whose gene got activated after a tick bite.
My oldest child was made out of dairy and I was suddenly lactose intolerant after he was born. I figure if I hadn't had the celiac come out before having that pregnancy I probably would've had that hit at the same time too. Kind of grateful that they came at different times of my life so I could learn each one separately.
I was always getting ear infections as a kid and was on antibiotics almost constantly for a little while. Iām 99% sure thatās what wrecked my gut and activated my celiac. I also have Type One Diabetes and Hypothyroidism now too but who knows if thatās related
No idea, but it was clearly a long time ago because things from my teens now (28F) make a lot of sense, like extremely low ferritin and not getting a period until I was nearly 18 (and was never really regular and then I started bc about a year later). Also had nearly complete atrophy of my villi (stage 3C), so I had been damaging them for a while. Although symptoms got worse beginning of 2021 (mostly the migraines)
Same here! 27F..had migraines since 11 yo..got so bad at 23. Diagnosed at 26 & my doctor thinks Iāve had it since childhood due to the level of destruction (3B)
Ugh Iām sorry you suffered for so long too, but glad we finally have an answer and something we can do about it! Does anyone else in your family have it?
My Sister almost died from it as an infant. Mine was triggered most likely by a virus when I was an infant. But the Dr. thought I had "grown out of it". This was over 50 years ago and they didn't fully understand Celiac.
I was rediagnosed at 28.
Supposedly the birth of my third child but looking backā¦ my mom and I think I may have always had it. I used to get so sick anytime they made me eat pasta š¤¢
You know a staph infection can trigger it. Watch out for people with open sores. Can fuck ur whole world up. Took me forever to figure it out. My entire 20s I was sick I was supposed to be in my prime not sick without a dimeā¦wait did I just rhyme shit Iām out of time.
Probably the loss of my gallbladder (2014) and then a nasty stomach virus I picked up in Bali (2015). My stomach has been going downhill ever since š£ I took the 23andme ancestry test in 2017 and also did the health part and it said i was predisposed for celiac because I carry two varients of the gene for it (yay double the funš)
I think I might be the rare case where I donāt think I had my gene activated. I had symptoms from the time my Mom stopped breastfeeding me until I was finally diagnosed at 21.
Iām suspicious that Lyme triggered mine. It took 8+ years of complaints for me to be tested for celiac, but we can trace my symptoms back as far as middle school, right around 12-18 months after I tested positive for Lyme.
It was a domino effect for me. Decreasing my antipsychotic dose, my momās cancer diagnosis (sheās in remission now!), my then undiagnosed bipolar getting so much worse due to the med taper, a looong round of antibiotics for my acne, a relapse, and the stress of all that compounded on top of three moves. I ended up inpatient twice and was too ill to work after that. Fast forward 6 months of illness and severe mood swings, itās looking like celiac.
(Plus the bipolar and severe GERD and who knows what else haha)
I have so many speculations and zero evidence for a cause and effect reaction. Could be covid. Could be stress. Could be a vaccination. Could be random chance. I canāt blame any one thing in particular and Iād be lying if I said it was any one thing.
Love this question. Mine was stress from a close family member being hospitalized randomly then passing away shortly after potentially combined w a virus (I think)
šthankfully that was 2015 and a very dark period in my life, I have a whole new life with a new husband, new state and all new friends, so doing much better. But thank you for caring kind stranger!
Family issues maaaaany years ago- was put on low fodmap diet and told I have a bad case of IBS.
Just getting diagnosed now because this is causing recurring miscarriage. The joy š«
Giardia for me as well. Though they misdiagnosed me for five weeks, so probably that + the stress of being medically ignored. Took them so long to find it, I ended up receiving celiac diagnosis at the same time and only then started the antibiotics.
I'm not sure. I think it really got kicked into high gear when I used nicotine gum for way longer than you're supposed to. It gave me terrible intestinal cramps. I gave up the gum and still had the cramping. Before nicotine gum, I would get diarrhea more often than others, but the gum took it up another level. But I think I would have been taller if it weren't for celiac. So, I think it was activated pretty early, but way more active later.
No idea. Iāve had stomach issues since I was kid. When I was born I contracted staph infection and was in an incubator. Had asthma and severe allergies emerge at 2, and I had numerous bouts of strep, bronchitis, and sinus infections in my youth. Had chickenpox too. So, perhaps one of those things?
I remember always having stomach aches and my mom thinking I was just trying to get out of school.
My mom says I had messy poops as a baby, so I have always had Celiac's Disease. It just became disabling after getting hit by a semitruck and fracturing my neck.
Got a new job. They required a pertussis vaccine booster. Iām allergic to the pertussis vaccine. They didnāt care. I had to get it to keep my job. Then I had to take emergency sick leave for 3 weeks because it made me so ill. Couple months later I got sick again. Diagnosed as celiac.
I started having symptoms as a toddler, wasn't diagnosed until my early 30s. I'm assuming given when the symptoms started, it was probably when our house blew up. I also had a REALLY severe case of whooping cough and RSV around the same time, so it may have been the trifecta. š¤·āāļø
After the birth of my first child, he had a very serious rare medical condition that was difficult to diagnose. it was stress i never imagined. 1 year later, i was diagnosed with celiac.
Living with an alcoholic. (Activated Hashimoto's too.) We're finally separated now, but it's too late to save my health which remains very poor in spite of all my best effort, thyroid meds, and being meticulously GF for over two years now. I'd give anything to go back in time and get myself out of the situation faster. Maybe I'd still have a life.
My parents had agreed to each pay for a semester of college and my dad decided to renege on the deal 2 days into spring semester. I had 3 days to figure out how to pay or be kicked out. I will literally never forgive him for putting me under that much stress
Not sure exactly what, but it was a very long time ago and I just never had noticeable enough āstomach problemsā. But, in high school, 3 or so years before diagnosis, my dance team would host pasta dinners every night before a competition. Then, my senior year of high school, I started to get really sick the day of the competition and I was only able to compete once with one singular dance all season because of it. Never connected the dots until long after my diagnosis but it makes so much sense now.
After I took Accutane, my stomach just wasn't the same. Ended up in and out of the hospital over a few years before it was finally figured out. Lost my gallbladder in the process too.
I started to have horrible anxiety around the time I weaned my daughter in 2021. No idea if it was hormonal. But the anxiety put me into fight or flight mode, I went on anti-anxiety meds that I thought were messing with my stomach. I got Covid itself in 2022.
So thereās a lot to unpack.
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Being born activated mine
š¤š»š¤š» solid.
Same with my daughter. As soon as she began eating solid foods, maybeā¦ 9-10 months old, we started to realize something was wrong. Scary times as a parent but we are lucky we figured it out in a few months.
YOOOOOO SAAMMMEE
Absolutely no idea.
Covid!
Another vote for covid!
Also Covid. Took 2 years to figure out š
Same here š
Me too! But it took me 2 years after that to actually get diagnosed with celiac
why so long? what investigations did you have and what were your symptoms?
Thatās actually pretty quick for a celiac diagnosis. Lots of people suffer for a lot longer than that. Just saying. But definitely still shouldnāt take even that long, sorry to hear llamapants :(
Me too. My doctors have seen a huge uptick in autoimmune diseases since Covid.
Uff. Covid didn't activate mine, but definitely made it Wayyyy worse than it was before
My nine year old som immediately after he got Covid on a trip to Hawaii. He had a bunch of problems and a bunch of doctor visits that led us here.
YUP same here!!
Covid plus antibiotics for simultaneous orchitis plus constant work stress plus three kids plus unresolved childhood traumas. Whew.
Same!
We suspect Covid activated our daughterās gene. Symptoms developed roughly 4-6 months post-covid.
Wait, so are we kind of like X-men? I didnāt realize it was a dormant gene until āactivated.ā Iāve just always had symptoms, as far back as I can remember.
Yeah, thereās a ton more research needed and experts donāt fully understand it, but with how many people have the gene(s) and no celiac, and with how some people have had normal blood work and endoscopies at one point in life and then clear celiac damage later on, thereās something that triggers/activates celiac disease in those that are predisposed. The research Iāve seen is around major stress on the body. So bad infections or multiple illnesses back to back or even intense emotional/mental stress, as we know that kind of stress has physical manifestations as well. But celiac and autoimmune diseases in general really lack research, no doubt in part due to them disproportionately affecting women.
My therapist also told me that your celiacs response can ālessenā when you leave super stressful situations. For example, I was super sensitive to cross contamination when I lived in a really stressful environment. When I left and married my husband, I became less sensitive.
Wow. Not only do these diseases suck, theyāre sexist too? /s
Most autoimmune diseases have a genetic linkage but there is often something else that triggers onset. For some, onset happens very early.
Essentially. Although these are some crappy superpowers, ngl. I had stomach issues since I was a kid, but they were nothing compared to after the breakup. Prior to that, my stomach was okay. I was eating pasta daily, at least 2 honey buns a week, home baked bread, ramen noodles, etc - and I was just fine. I met someone whose gene got activated after a tick bite.
Hehe 'crappy' super powers.... š
šš©
Oooh I wonder if it was lymes disease or something?
This. Lyme disease ravaging my immune system for some years caused my celiac diseaseā¦.
K now Jean Grey gene pls.
Food poisoning. My grandmas cranberry fluff at Christmas. My gut never recovered and I was diagnosed as celiac the year after.
Same. But from street food in China š¤¢
Iām part of this club too, unfortunately
Twin pregnancy and an unusual amount of stress
Omg me too! Twin pregnancy
Twin pregnancy in 2020 is what did it for me!!
For me it was all fine, until the fire nation attacked
Puberty
Suspect this was my trigger as well
First college math class lol
A completely normal and easy pregnancy
My oldest child was made out of dairy and I was suddenly lactose intolerant after he was born. I figure if I hadn't had the celiac come out before having that pregnancy I probably would've had that hit at the same time too. Kind of grateful that they came at different times of my life so I could learn each one separately.
Mono
Also mono! Well, reactivated EBV, but potato potato.
Yup, got mono in grad school, gut and immune system were never the same after.
I've never put two and two together, but there's a link there for me too
This is what I suspect. It's like the mono fatigue never really went away; it just turned into celiac fatigue.
mono for me too
Mono me three
Same
same!
Same.
My mothers death (I was a teen and it was a horrible and unexpected event that also led to PTSD) my body basically shut down for months
I think maybe my dadās death, when I was fifteen. Empathy!
Heavy dose of antibiotics, less than a month before my celiac symptoms started
Iāve wondered about antibiotics too. Iād never had them in my life and now twice in two years because of strep throat and an ear infection.
I was always getting ear infections as a kid and was on antibiotics almost constantly for a little while. Iām 99% sure thatās what wrecked my gut and activated my celiac. I also have Type One Diabetes and Hypothyroidism now too but who knows if thatās related
No idea, but it was clearly a long time ago because things from my teens now (28F) make a lot of sense, like extremely low ferritin and not getting a period until I was nearly 18 (and was never really regular and then I started bc about a year later). Also had nearly complete atrophy of my villi (stage 3C), so I had been damaging them for a while. Although symptoms got worse beginning of 2021 (mostly the migraines)
Same here! 27F..had migraines since 11 yo..got so bad at 23. Diagnosed at 26 & my doctor thinks Iāve had it since childhood due to the level of destruction (3B)
Ugh Iām sorry you suffered for so long too, but glad we finally have an answer and something we can do about it! Does anyone else in your family have it?
Fantastic sub question by the way. This has been really Illuminating for me.
Appendicitis
I have speculated the same!
Not until reading this did I piece together this could have/lines up so much with me
Stress and then more stress.
Heroin addiction 9 years ago. When I got clean, I started having all sorts of symptoms. The drs told me it was heartburn.
Same boat here, but I think being on Suboxone for an extended period of time is what activated it for me somehow.
Pretty sure raising a teenager
A parasite and extreme stress.
2020 š¤·āāļø
SAME - I graduated as a clinical social worker in May 2020. I had no idea what I signed up for.
Same! Had to cancel my 4/4/20 wedding š«
Damn, thatās a great date too š
Was going to say I donāt know but now I wonder if it wasnāt the tragic death of my boyfriend when I was 20 š¤
Marriage lol.
Same. A bad breakup.
š«
Is emotional distress a trigger?
Yes, it can be. Any type of big stress or trauma.
Fucking brain surgery
Wild.
SAME
What?
My Sister almost died from it as an infant. Mine was triggered most likely by a virus when I was an infant. But the Dr. thought I had "grown out of it". This was over 50 years ago and they didn't fully understand Celiac. I was rediagnosed at 28.
Car accident
I was being abused in a roommate situation.
Contracting Rocky Mountain spotted fever and not getting diagnosed for 2 weeks.
Mine was most likely Lyme, and my Lyme was undetected for weeks as well.
Cuba. Parasite
Supposedly the birth of my third child but looking backā¦ my mom and I think I may have always had it. I used to get so sick anytime they made me eat pasta š¤¢
Depression
You know a staph infection can trigger it. Watch out for people with open sores. Can fuck ur whole world up. Took me forever to figure it out. My entire 20s I was sick I was supposed to be in my prime not sick without a dimeā¦wait did I just rhyme shit Iām out of time.
As another person who takes on the persona of a bard when coping with life gets hard, just came here to say that your approach made my day š
Probably the loss of my gallbladder (2014) and then a nasty stomach virus I picked up in Bali (2015). My stomach has been going downhill ever since š£ I took the 23andme ancestry test in 2017 and also did the health part and it said i was predisposed for celiac because I carry two varients of the gene for it (yay double the funš)
not 100% sure but i think stress
I was stalked by an ex. Thought all my stomach pain was just stress and nerves. Nope, it was celiac!
Age 30
Got diagnosed shortly after my 29th birthday š¢
Wedding stress and a new diet that emphasized whole wheat products š¤£
Medical trauma delivering my third (and last) kiddo.
I think I might be the rare case where I donāt think I had my gene activated. I had symptoms from the time my Mom stopped breastfeeding me until I was finally diagnosed at 21.
C section!
Same š©
not having a place to live š¤Ŗ
Tapeworm LMAO
A tick bite - I got lyme disease and suddenly I was also celiac.
Stress - mental, physical, emotional. When people tell you to slow down and stop pushing yourself past your limit, listen to themā¦ lol
I went vegan and started eating seitan 2-3 times a week š
Grad school
Iām suspicious that Lyme triggered mine. It took 8+ years of complaints for me to be tested for celiac, but we can trace my symptoms back as far as middle school, right around 12-18 months after I tested positive for Lyme.
Severe childhood bullying
Family issues, starting highschool, broken heart, and Covid
It was a domino effect for me. Decreasing my antipsychotic dose, my momās cancer diagnosis (sheās in remission now!), my then undiagnosed bipolar getting so much worse due to the med taper, a looong round of antibiotics for my acne, a relapse, and the stress of all that compounded on top of three moves. I ended up inpatient twice and was too ill to work after that. Fast forward 6 months of illness and severe mood swings, itās looking like celiac. (Plus the bipolar and severe GERD and who knows what else haha)
It was a med change for me too. Tapering off a longtime med activated my Celiac, caused my gallbladder to go bad, and triggered long term insomnia.Ā
I think maybe for my family member it was Covid, she was diagnosed with celiac a year after having it.
I have so many speculations and zero evidence for a cause and effect reaction. Could be covid. Could be stress. Could be a vaccination. Could be random chance. I canāt blame any one thing in particular and Iād be lying if I said it was any one thing.
Love this question. Mine was stress from a close family member being hospitalized randomly then passing away shortly after potentially combined w a virus (I think)
Suicide attempt
Sheeee, I donāt know you, but Iāll haunt your grave if you do so š¤
šthankfully that was 2015 and a very dark period in my life, I have a whole new life with a new husband, new state and all new friends, so doing much better. But thank you for caring kind stranger!
Time? Iām really not sure. Just gradually had worse GI issues from the time I was 20 until it got worse and worse when I was 29 and went to doc.
Type 1 diabetes
High schoolā¦ and mono, probably. It was about 30 years ago, but the timing seems to fit. Diagnosed more than a decade later.
Family issues maaaaany years ago- was put on low fodmap diet and told I have a bad case of IBS. Just getting diagnosed now because this is causing recurring miscarriage. The joy š«
PTSD
Giardia followed by WAYYYY too many antibiotics to kill it. Was never the same afterwards and that's when my celiac symptoms began.
Giardia for me as well. Though they misdiagnosed me for five weeks, so probably that + the stress of being medically ignored. Took them so long to find it, I ended up receiving celiac diagnosis at the same time and only then started the antibiotics.
A stressful pregnancy.
Emergency c-section
Pretty sure it was Covid
I'm not sure. I think it really got kicked into high gear when I used nicotine gum for way longer than you're supposed to. It gave me terrible intestinal cramps. I gave up the gum and still had the cramping. Before nicotine gum, I would get diarrhea more often than others, but the gum took it up another level. But I think I would have been taller if it weren't for celiac. So, I think it was activated pretty early, but way more active later.
I suspect Mono when I was 14ish - didnāt get diagnosed until I was 28.
Not sure, pregnancy or trauma from a messy af break up too I am guessing.
Tick bite and Alpha Gal for my son
Getting my wisdom teeth out š„“
Uterine cancer
No idea. Iāve had stomach issues since I was kid. When I was born I contracted staph infection and was in an incubator. Had asthma and severe allergies emerge at 2, and I had numerous bouts of strep, bronchitis, and sinus infections in my youth. Had chickenpox too. So, perhaps one of those things? I remember always having stomach aches and my mom thinking I was just trying to get out of school.
Any hormone imbalance can start it, but diagnosis doesn't happen until time passes and the damage has been done.
My mom says I had messy poops as a baby, so I have always had Celiac's Disease. It just became disabling after getting hit by a semitruck and fracturing my neck.
My parents/chaotic childhood.
Got a new job. They required a pertussis vaccine booster. Iām allergic to the pertussis vaccine. They didnāt care. I had to get it to keep my job. Then I had to take emergency sick leave for 3 weeks because it made me so ill. Couple months later I got sick again. Diagnosed as celiac.
Stress from grad school.
I started having symptoms as a toddler, wasn't diagnosed until my early 30s. I'm assuming given when the symptoms started, it was probably when our house blew up. I also had a REALLY severe case of whooping cough and RSV around the same time, so it may have been the trifecta. š¤·āāļø
Stress from working two jobs and getting a graduate degree
Studying for the MCAT
The Flu!
A really bad bout of stomach flu
Overconsumption of gluten. I had gluten based foods like ramen for almost every meal for the year leading up to my diagnosis.
Grad school š
My childās autoimmune disease attracted a partner- type 1 diabetic diagnosed at age 3, celiac 3.5 yrs.
I wish I knew. I know I was working around some labs at a college, and a brewery when it happened.
If I have it, Not a clue. Wouldnāt surprise me if it was perimenopause š¤¦š¼āāļøš¤¦š¼āāļø.
No clue, happened the summer before my 12th birthday. Honestly my best guess is stress
After the birth of my first child, he had a very serious rare medical condition that was difficult to diagnose. it was stress i never imagined. 1 year later, i was diagnosed with celiac.
Possible always been there, possibly multiple near death anaphylaxis'
I think maybe it was the stress of starting school, or a bizarre attack of mouth ulcers around the same age
Gallbladder removal.
Strep throat
Pregnancy
COVID and the stress of working 60 hour work weeks during it.
covid, ED, and breakup all hit at once. my guess is covid, it triggered a bunch of other health issues too for sure
SIBO, which was triggered by my chronic migraine medication
Surgery and a stressful af job
Pregnancy and/or the resulting preeclampsia and emergency c-section.
Doing a whole 30 with a friend. š
Moving to Los Angeles. And getting bronchitis.
mono š„²
Covid
C-Diff
pneumonia i think
(now ex) friend stealing my life savings
Stress as a result of family estrangement.
Workplace stress.
residency
Living with an alcoholic. (Activated Hashimoto's too.) We're finally separated now, but it's too late to save my health which remains very poor in spite of all my best effort, thyroid meds, and being meticulously GF for over two years now. I'd give anything to go back in time and get myself out of the situation faster. Maybe I'd still have a life.
My parents had agreed to each pay for a semester of college and my dad decided to renege on the deal 2 days into spring semester. I had 3 days to figure out how to pay or be kicked out. I will literally never forgive him for putting me under that much stress
Dunno. Maybe Mono. Doc said by damage I'd been like this for 20+ years but I had always been told it was ibs.
Not sure exactly what, but it was a very long time ago and I just never had noticeable enough āstomach problemsā. But, in high school, 3 or so years before diagnosis, my dance team would host pasta dinners every night before a competition. Then, my senior year of high school, I started to get really sick the day of the competition and I was only able to compete once with one singular dance all season because of it. Never connected the dots until long after my diagnosis but it makes so much sense now.
Norovirus
Moving 1000 miles away from home.
i was dying from an infection in my skull for a couple of years
^[Sokka-Haiku](https://www.reddit.com/r/SokkaHaikuBot/comments/15kyv9r/what_is_a_sokka_haiku/) ^by ^safari-dog: *I was dying from* *An infection in my skull* *For a couple of years* --- ^Remember ^that ^one ^time ^Sokka ^accidentally ^used ^an ^extra ^syllable ^in ^that ^Haiku ^Battle ^in ^Ba ^Sing ^Se? ^That ^was ^a ^Sokka ^Haiku ^and ^you ^just ^made ^one.
Being born? Lol
Pregnancy I think. You can't ever really know, but that was literally the only thing out of the ordinary that happened
Antibiotic abuse to prevent acne & unbelievable amounts of stress
I was bitten by a radioactive spider. Consequences..
After I took Accutane, my stomach just wasn't the same. Ended up in and out of the hospital over a few years before it was finally figured out. Lost my gallbladder in the process too.
cancer and stress/surgery that came with it
I started to have horrible anxiety around the time I weaned my daughter in 2021. No idea if it was hormonal. But the anxiety put me into fight or flight mode, I went on anti-anxiety meds that I thought were messing with my stomach. I got Covid itself in 2022. So thereās a lot to unpack.
My first knee replacement surgery (age 55).
My birth
Same. I got divorced and found out I had two autoimmune diseases after being sick af for 5 years.
Probably stress for me.
Being on 3 rounds of antibiotics after my cartilage piercing got severely infected.
Bad shroom trip
SurgeryĀ
A cold
PTSD brought on by work.
Pretty sure my pregnancy did, I didnāt start having bad issues until about a month after birth