When Was Your Celiac Triggered?

[Victoria6102]

My question is, what triggered your celiac? Did you one day randomly feel sick and it just never stopped til you were diagnosed, or was it a gradual onset of symptoms?

I'm still trying to figure out what triggered mine. I was 11, and was about to get in the shower one night when I suddenly felt severely nauseous. I thought it was a 24-hour stomach bug. But it went on....a 3 day stomach bug? Week long stomach bug? Nope it just kept on going and hasn't stopped for the past 6 years. It was such a random thing, before that day I felt nauseous, I was super healthy. But I don't know what triggered it cause I was only 11 so didn't have any real stress, and hasn't had any infections. What else can trigger it? Thanks some things about Celiac will always be a mystery

[rosetapper23]

Although I had symptoms since birth, I believe the worst of my celiac was triggered at age 11 when my father left. I immediately became iron anemic, I became night blind, I could no longer clot, my joints became painful, my muscles didn't work right, and my teeth began to break. My celiac waxed and waned throughout my lifetime and once again became very bad when I was 45. I don't know what triggered it then....but it was the last time--I finally sought answers and found out I'd had celiac all along.

[beachbirdie]

My question is, what triggered your celiac? Did you one day randomly feel sick and it just never stopped til you were diagnosed, or was it a gradual onset of symptoms?

I'm still trying to figure out what triggered mine. I was 11, and was about to get in the shower one night when I suddenly felt severely nauseous. I thought it was a 24-hour stomach bug. But it went on....a 3 day stomach bug? Week long stomach bug? Nope it just kept on going and hasn't stopped for the past 6 years. It was such a random thing, before that day I felt nauseous, I was super healthy. But I don't know what triggered it cause I was only 11 so didn't have any real stress, and hasn't had any infections. What else can trigger it? Thanks some things about Celiac will always be a mystery

I can't really say for sure. I do know that my autoimmune thyroid issues (Hashimoto's) started in after a major stress in my life, my dad's cancer and unexpected death. I also was found hypothyroid after my first child, but not autoimmune.

Then, a few years later, I was very sick with an intestinal bug (a norovirus I thought) and it was after that I really started having intestinal pain that I could not seem to get away from for long. I wonder now if it was really just a bug!

So, kind of a "chicken and egg" thing. And if I look back even before the big stress, I was having problems with abdominal tenderness from the time my second child was born. I blamed my Caesarian scar. Now I'm not so sure it was the scar!

I'm wondering now, since my symptoms have never been severe, whether it all started long ago and I just never put the pieces together until now.

I've heard pregnancy can be a trigger, also stress and viruses. So, it's not likely most of us will be able to nail down the thing that activated celiac. Sure would be nice to know how to turn off autoimmune responses, eh?

[mamaw]

I believe this is an on going growing issue that builds up but we never realize it( docs either) until it manifests into the bigger picture...I don't believe it happens in a minute & boom celiac..Celiac for me is like a 1000 piece puzzle , random pieces strewed about until someone starts to put all the pieces into there proper place.Sadly enough this can take years..

I was in my late fifties when I got Dx'd but as a child I was sickly, poor eater, anemic, low concentration skills,sinus issues, skin problems. Then I seemed to get a bit better( I graduated from high school with a 4.0) but by age 24 I had two major surgeries , no doctor ever mentioned celiac to me ...... it took a dx's of ALS & a death sentence from that disease to come to celiac.

Yes I think there are triggers throughout our lives but mainly are never put in the big picture puzzle for many years after...

[Ebonyjade93]

I self diagnosed myself when I was 16 as I realised having stomach pains, nausea, bloating, constipation and chronic acid reflux was not normal.... It all only started happening that year aswell.. I have no idea what would of triggered it,

I'm 19 now and in my opinion I think it isn't just "triggered" I think the villi gets to the point where it can't take it (gluten) anymore... And bam symptoms galore... Im not sure if I am right so please correct me if I am wrong!!

I only think this because I went back to gluten for a while and at the start I was okay but I got sicker and sicker as time went on... So I'm not sure... Maybe that's something to do with how sensitive you are... Haha okay getting off track... I'd love to know more aswell about it all

[Cara in Boston]

I had zero symptoms until I was pregnant with my second child. Suddenly I had "bathroom issues" (as my husband call them), gassy, headaches, etc. I thought it was just a pregnancy thing and that it would all go away once I had the baby. All during his preschool years I was at the doctor with some odd complaint - usually convinced I was dying of something terrible. (Heart palpitations, dizzy spells, etc.) I was put on medication for GERD - but the symptoms still came and went.

At age 5 we noticed a sudden change in behavior in my son. He was tested for Celiac and when I started reading about it, I realized I had all the classic symptoms. (Son had none - weird). He tested positive, I had a blood test and tested positive as well. I went gluten free with him and things quickly improved.

This is why I mention Celiac to ANYONE who has random symptoms . . I really wish someone had brought it to my attention years earlier. So easy to fix! I could have saved myself years and years of worry and saved my health insurance tens of thousands of dollars on MRIs, EKGs, etc. etc. etc.

Cara

[NorthernElf]

I was 34 and had a wicked bad virus for a week. You know you get the flu and your stomach cramps and you can't keep anything in ? I had that for a full week - I wanted to die. Sounds dramatic but when you expect something to last a couple of days & it just won't quit, it's horrible. At the end of the week I was in the ER getting fluids by IV and a shot in the butt to stop the intestinal spasms. After that it took some time - probably close to a year - to figure out to eat without getting sick. Part of it was denial (how could it be gluten, I've eaten it all my life) and part of it was a doctor who didn't think I could have it...& I believed her.

Honestly though - I have had 'stomach issues' all my life - first scope at 20. Sadly, none of the tests I had looked for celiac disease - got the old IBS diagnosis. I guess I don't look like the celiac stereotype.

[frieze]

My question is, what triggered your celiac? Did you one day randomly feel sick and it just never stopped til you were diagnosed, or was it a gradual onset of symptoms?

I'm still trying to figure out what triggered mine. I was 11, and was about to get in the shower one night when I suddenly felt severely nauseous. I thought it was a 24-hour stomach bug. But it went on....a 3 day stomach bug? Week long stomach bug? Nope it just kept on going and hasn't stopped for the past 6 years. It was such a random thing, before that day I felt nauseous, I was super healthy. But I don't know what triggered it cause I was only 11 so didn't have any real stress, and hasn't had any infections. What else can trigger it? Thanks some things about Celiac will always be a mystery

?puberty

[1974girl]

I have wondered if puberty triggers it too. My dd was 11.

[RonSchon]

When I was 30, out of the blue two separate things happened... I started gaining weight uncontrollably, and started having occasional bouts of Gout.

Weight, low energy, and constipation simply became the reality of my life. Then, when I was about 45 the symptoms increased to include joint pain, back/kidney area pain, brain fog, and reduced vision acuity.

I'm 46 now, and it came to a head in June when I was only able to get out of bed for short amounts of time.

[nvsmom]

I think I've had it my entire life. My mother told me that as a baby I was C and often needed help to get things moving; this is back in the day when cereal was introduced at 2 weeks old.

As I young child, I remember crying because C hurt so much and having wicked stomach aches. I got my mom to take me to a doctor and he told us that "she is one of those people who gets stomach aches after they eat." And that was that. I learned to suck it up for the next 30 years.

I have had other autoimmune problems/diseases that I can trace back to a trigger of stress, trauma, or medication, but not celiac. I'm pretty sure I've had it since I was an infant.

[Huggenkiss27]

I'm another one that has probably had it my whole life. My parents tell stories of me being 5 or 6 years old and in the bathroom all night long. I remember my dad giving me pepto to settle my stomach all the time too. He's always told me (and still thinks) that it's all in my head because I stress and worry about everything and that's why I have the bathroom issues. He's always told me, "you're just making yourself sick." Geez- thanks for the support!

I think it really triggered for me right before high school because that's when I remember being sick, run down, tired, and in the bathroom all the time. When I was 20 I went to a GI doc and did get a positive blood test for Celiac. He told me to go gluten free for 2 weeks and come back. I wasn't feeling better (and had no clue how to avoid gluten, all i ate was french fries most likely contaminated) so after two weeks he said the blood test must have been a false positive and that I just had the worst IBS he'd ever seen and to deal with it. Now at 28 I started feeling worse than ever and had all the tests run again and got nothing from bloodwork or endo/colonoscopy. But my new and improved GI says she's comfortable with saying I have Celiac and to go gluten free. After 5/6 weeks I feel beyond better!

[Adalaide]

I've been sick literally my entire life. I remember that even in our first house which we moved out of when I was 6 that I was constantly on antibiotics. I lost my voice all the time and eventually had my tonsils out in 5th grade. I had UTIs all the time as well as kidney infections as well as lifelong GI issues. When I was 16 I started randomly passing out for no reason at all. (Of course there was a reason but it took years to figure out and I'm the one who eventually pinpointed it.) When I was about 11 or 12 I had my first migraine... on a camping trip. I thought I'd die of a headache, that was a fun weekend. As an adult I've had doctors playing pin the tail on the diagnosis and even with a healthy diet was diagnosed with scurvy but no one thought to themselves gee, I wonder if there is any underlying reason for the problems with this woman. Morons, the lot of them. The only reason I even know I have celiac is because I needed emergency surgery to have my gallbladder out and had to have an endoscopy to have a stone removed from a duct. Apparently the damage was so bad the GI doc was like zomg, I should biopsy that. In hindsight, it is the best thing that ever happened to me. At the time I thought my life was over.

So I guess the short answer is, I've been all sorts of messed up from the day I was born. Which doesn't surprise anyone who knows me.

[GlutenFreeAustinite]

As a kid, I constantly had eye and ear infections. I distinctly remember the Christmas I was three years old, and I refused to take my eye drops to treat a nasty case of pinkeye. My dad "called" Santa Claus to tell him I was not being a good girl by refusing to take my meds...needless to say, I complied instantly. I was the one kid in ten to go tubing in a river and come out with ear and eye infections (both ears and both eyes one year...yikes). I got bronchitis in the middle of the summer. I have very sensitive skin, and often had unexplainable small rashes that came and went. When I was in middle school, I started having sporadic, sharp, stomach pains roughly twice a month, and they landed me in the hospital where I was diagnosed with gastritis. I was also prone to headaches, but we assumed that they were from dehydration, as I was a year round swimmer who was constantly training outside in the Texas heat.

As a sophomore in high school, I began having migraines every day. Nothing worked. My best friend,a self-diagnosed NCGI, suggested I go gluten-free, which cured me of my migraines. Even gluten-free, I've been susceptible to staph, which makes me think I wasn't as gluten free as I thought, or have another underlying condition at play (I was the one person in a group of 8 campers who got staph after a week-long backpacking trip). Although, if I'm gonna be honest, CC during that trip was extremely high.

So I don't know when it was triggered....I've had a lifelong problem with infections, but I don't know for sure. We suspect my grandmother had it; she had a negative blood test in the early 1990s, but they never biopsied her. She was instead diagnosed with Crohns (and they removed much of her intestines and put in a colostomy for that), ankylosing spondylitis,and a host of other "phantom" issues.

[jmrogers31]

With me I believe I always had slight auto-immune issues because I had asthma and used to have to get shots every week because I was allergic to trees, ragweed, mold, and pollen. I was also so skinny that I used to drink those 2,000 calorie weight gain shakes in high school and was 5'10 and 130 pounds despite lifting weights and eating everything in sight. I triggered it severally at age 30. I truly believe and anti-biotic did it. I had my yearly sinus infection and after my antibiotics ran out I was miserabe for months on end. My stomach sounded like boiling water all the time, I couldn't sleep, I had uncontrolable anxiety, and anemic. After 2 weeks gluten free I already started to feel better. Anyone else have issues with antibiotics?

[love2travel]

I was a very healthy baby and kid growing up and a healthy adult until about two years ago when I had severe pneumonia. It is possible it was my trigger but it is not easy to say. My diagnosis was 16 months ago and came as a shock to me as I have never been ill other than the odd cold and that pneumonia. However, I do suffer from severe chronic pain from an accident (which could have also been my trigger??). The only change I notice since going gluten free is that my tooth enamel is now very strong. Just don't know...

[~**caselynn**~]

When I think back I can remember having tonsillitis atleast twice a year, always too anemic to give blood, but it was when I was in college that started to notice the GI issues. Between stress of classes and living the college life of no sleep, parties, and studying I was always down for the count. I mentioned it to my doc at the time, a few times, who said and I quote" if you think bread bothers you then just don't eat it"...good enough, life went on and I was in a roll over and all hell broke loose after that. Miserable wouldn't even come close to describing how I felt. After tons of testing from ultrasounds to cat scans and scopes my gastro said the celiac was there all along and then the added stress was just too much for my system,and it gave in! Oh well, it is what it is, life is good now-- gluten free!

[LauraB0927]

I have been asking myself this question since the day I was diagnosed. I never had GI problems as a kid and led a fairly normal childhood/adolescence. I did get frequent sore throats, sinus infections, and ear infections, but nothing so outrageous that it would cause anyone to wonder. After college (and writing a 2 year long thesis which was incredibly stressful) I was told by my doctor that I was anemic. My anemia was so bad that I developed pica and was eating only shaved ice every day for 3 months. After my mom became incredibly disturbed (and sick and tired of making ice all day), she took me back to the doctor and they gave me an iron infusion since the pills weren't being absorbed. Since that day of the infusion, I quickly gained about 20-25 pounds within a year and continued to gain weight. I am a silent Celiac so I still never experienced GI symptoms, but I'm thinking that this was the time that my Celiac was triggered. I could be completely wrong, but its the only thing that stands out to me.

[nvsmom]

i had no idea that infections are linked to celiac. If that's true, I also was sick a bunch with a few UTIs a year and chronic strep throat; they once had me on antibiotics for a full year trying to get rid of it... didn't work. I had mono and pneumonia at the same time as a teen, and now a days I get sick a few times a year (but I attributed that to having no spleen)... I wonder if it is all related?

[Marie1976]

After I stopped breastfeeding my second child, I started having chronic diarrhea, I was going crazy trying to figure out what was causing it, I thought maybe hormones or certain foods. I was so miserable. My hubby finally insisted I see a doctor about it (I was scared they were going to do all kinds of invasive tests so I kept putting it off) but I finally went and long story short... I have celiac.

Looking back though, I think I did have issues that were celiac-related before that. Sensitive stomach, anxiety, depression, etc. It just didn't get really bad until after having kids. Weird.

[archaeo in FL]

It looks like I'm the exception, but other than recurrent ear infections as a kid, and later recurrent sinus infections (stopped after allergy shots) and recurrent UTIs (stopped when I started drinking more water and less other stuff) I've almost always felt pretty good. (I know that's not exactly normal, but there are a lot of things about our modern life that aren't "normal" for our bodies - like all of the hormones in our meat and dairy supply, but I digress...)

Last year I moved, commuted 4 hours one way every weekend back to work on our house to sell it on the weekends, was working hard at the new job, and thought I was just worn out from that. I continued to get more and more tired, and as a person who couldn't normally take a nap or sleep with any noise I felt then that I could have laid my head down on my desk and slept soundly. My GP diagnosed me as deficient in iron and subsequently also in D, B, and several other vitamins. She was smart enough to do a preliminary Celiac blood test, and found that was positive.

I will say, though, that in college and grad school I saw a few doctors about stomach trouble. I was told by one to take bulking laxatives - when I complained of diarrhea!! (I did not go back to her, and was furious that I had to pay for a service by someone who was so clearly inept.) Once I cut out dairy and fake sugar and cut back on coffee, my stomach did improve, but was never "normal" - which to me is how I felt back in high school and earlier (when I did not eat well!).

So, for me, it's hard to say. Despite the infections and stomach trouble, I felt pretty normal until last year, and I have always eaten a lot of gluten-containing foods, so I think Celiac was "triggered" for me last year (or not too long before) somehow.

[txgal748]

I believe I have had celiac disease since I was a child. When I was 9 I developed eczema. Of course it took 6 years to diagnose. During my teenage years I would go for a week at a time without sleeping and it did not even bother me. I have always been clumsy, running into door frames, car doors, and running into furniture. In the past few years I have had some aches and pains which I attributed to being 40. Last year I had a migraine. This year I started out having a dull headache everyday. I have had times throughout my life when I would get dizzy. In March I started getting dizzy everyday. After 3 weeks I went to my PCP. She ran some blood test and referred me to a neurologist because she could not figure out my dizziness. I found out from my PCP I had low vitamin D. The neurologist ran a bunch of blood work which came back with low B12 and celiac disease. I have never had any gastrointestinal issues.

[butterfl8]

I can combine the long term symptoms and the trigger! My trigger was some virus that attacked the abdominal lymph nodes. A twisting, pulling pain at various spots on my stomach. After a week, not only did I not get better, but the pain changed and got much worse. Now it was a stabbing pain, and I started on vicodin. The dosage kept increasing in order to keep the pain at bay, and then one night after 2 pills (and 2 slices of pizza and a peice of 3 layer cake!!!) I ended up in the ER. Diagnosis followed shortly thereafter. Of course, once I started learning about Celiac, the picture became so much clearer. My headaches and constant constipation as a kid, migraines and excema in my 20s, and extreme fatigue in my late 20s. Even better, after going gluten-free, no more depression!

[veronika]

I felt amazing until I got a viral infection (my best guess given the symptoms) at the end of my third year of university. After I failed to recover, and after what felt like a million doctors/tests, I was labeled with chronic fatigue syndrome and told to cope somehow. Noticed problems with wheat, dairy back then and cut them both out (for the most part). Survived undergrad, got a degree, moved on to grad school still sick but was able to manage it. Flash forward to last summer, got hit with a terrible stomach bug. I've had horrible GI problems since and have only in the last few months connected my gluten/various food intolerances with my overall health and vitamin deficiencies. Looking back on the past six years, I can now appreciate all the subtle (and not so subtle) clues.

[bartfull]

I was always sick as a child too, but I think my celiac was triggered when my father died. He was my hero and my best friend, and I didn't handle it well when I lost him. To be completely honest, I started drinking. A LOT. I mean every day all day, starting with breakfast and continuing until I passed out at night. I thought the digestive symptoms were from downing sometimes up to a half gallon of tequila a day, often on an empty stomach.

I think I was trying to commit suicide without actually committing suicide. I mean, I didn't want to live in a world that didn't have my father in it, but I knew suicide was so wrong. I figured if I drank myself to death it didn't count as suicide the same way it would if I had put a gun to my head.

Stupid, I know. But by the time I realized that I COULD live with just his memory to hold on to, I had already destroyed my gut.

You know something? I must trust you folks a lot to be able to tell you all of that. You've all been so good to me, and even though it's an ugly story, my trust in you folks is my gift to you. Thanks so much for everything!

(And no, I don't drink at all anymore.)