Did You Have A Trigger That Started Your Symptoms?

[WheatChef]

My trigger was when my voice started cracking. Yay puberty!

[Becksabec]

About the age of 20, I started having a lot of stomach issues. They did all these tests on me, and couldn't find anything, and I ended up being diagnosed with a bunch of different disorders based on symptoms alone (IBS, GERD, gastritis, etc). Of course, the treatments for those things didn't really help. It wasn't long after that when I started having problems with what my doctor referred to as "unknown food sensitivities". I would get pretty sick, and also break out in hives, on and off over several years. They did allergy testing, but never found anything.

At the age of 25, I got mono which also caused an enlarged liver and anemia (which didn't go away until I went gluten-free) and things started to go downhill from there. The stomach problems started getting a lot worse, after that. I continued to have problems with the anemia, and I reached the point where I couldn't get out of bed barely. At age 27 (just a couple months), I had a DH outbreak, and was diagnosed that way.

[Roda]

I had bad constipation with an impaction as a baby and toddler. Seemed alright as a child and teenage years with occasional bloating and constipation. Early to mid 20's had increasing problems with bloading and constipation. I had a friend that was an ultrasound tech that was using me as a guinea pig to try out a new machine. She was scanning my thyroid and it looked abnormal. She pulled out her text books and pointed to an image of what a thyroid looks like in a patient with hashimoto's disease and said that is what mine looked like. I went to my doctor and "fibbed" about being tired etc. so he did thyroid tests and all came back normal (this was around 1997 i think). Fast forward to 1999 and I was having extreme fatigue and feeling icky. I went off birth control pills thinking that they were making me feel bad. I had been on them over 8 years. I got pregnant right after quiting them, but had an early miscarriage. I had blood work through a work screening that showed abnormal thyroid tests. My doc at the time didn't think it warrated any treatment. I got pregnant again (planned) and then miscarried at 12 weeks. I changed docs but still was not on any thyroid meds until after the second miscarriage. I became pregnant about 2.5 months after. Pretty uneventful pregnancy with the exception of bad tachycardic episodes which led the doc to test my thyroid antibodies and they were positive. I had to laugh when the endocrinologist diagnosed me with hashimotos disease. I did have preterm labor but deliver full term. my major trigger was after I had my second son. I had to avoid all kinds of foods because he would either get rashes on his head or server colic and scream. I inadvertently was gluten light for the first 10 months I was breastfeeding and as he outgrew some of his problems I started adding foods back in. In Feb of 2006 I started having tachycardic episodes. I was referred to a cardiologist who could find nothing wrong but put me on meds to lower my heartrate. Quit taking them because I couldn't function. It wasn't until the end of the year that my hemablobin and hematocrit finaly went low and they said I was anemic. In 2007 I started seeing a new endocrinologist who tested ferritin and it as off. I never really got much better even though my thyorid was being treated and was good. I found the link between the thyroid and celiac. I probably have had a gluten problem a long time. I don't think my second son's birth per se was a "trigger" just that when I watched what I was eating for him It had a profound effect. I always commented to everybody how great I felt those first 10 months. I am actually greatfull for my little Russell, because if it wasn't for him I don't know what the outcome would have been.

[RideAllWays]

Yes. The trigger that started it all was being impaled at the age of 4. No one was home and I had to rescue myself and scared the dickens out of a neighbor when I went to her home covered in blood. I developed DH (Mom was told I had 'poison ivy in my bloodstream) and ataxia soon after. I also developed severe depression at that time which was a problem off and on until I was finally diagnosed at about age 46. I became worse and developed off and on stomach problems after my twin died right before our 16th birthday. The tummy issues and depression were always attributed to stress because my Dad was an abusive alcoholic. After 10 years of trying I finally had my son and things got a bit worse but the s--- really hit the fan after my DD was born. Instead of my occasional tummy issues they became daily and progressivly worse. I developed more severe ataxia and eventually had very painful D on a daily and nightly basis and developed the rest of the problems you see in my sig.

I just want to give you a big hug.

[Spacegirl99]

When I was 13, I was told (by my pediatrition) that I had mal-absorption issues that I inherited from my grandmother and that I would need to take iron supplements b/c my body "just didn't process iron from the food I eat." He never bothered to look into why. When I was 16, I became a vegetarian b/c I thought that it was the meat in the hamburgers I was eating that was making me sick. I only felt better for a few months and then I started to feel sick again every tiime I ate until I got pregnant with my son. After giving birth, it seemed to go away. (I did gain ADD and depression symptoms, though.)

My son (who is 8 now) was having issues concentrating at school and I read that a whole-wheat, no sugar diet could help combat ADD, so I decided to try it (before then, I never ate whole-wheat.) After about 2 weeks of being on the all-whole-wheat diet, I got really sick. I stopped eating because hunger was easier to tolerate than the gut-ripping torture and extensive potty-time that came afterward. This went on for 4 1/2 months. I'd had it with doctors b/c only a few months earlier, I'd spent 2 1/2 months having extensive tests run to find out why I was breathing in 99% oxygen and my body was only using 60% of it (they never found the reason); I only went to the doctor because my SIL was convinced that I had galbladder disease and that I'd die if I didn't have it removed. So, I went and was very lucky that my dr. was out of the office and I got someone else in the office who immediately suggested celiac disease. Here I am now, 6 months later. I've been gluten-free since I left her office and all symptoms have cleared up (except when I get glutened, of course.)

[mushroom]

When I was 13, I was told (by my pediatrition) that I had mal-absorption issues that I inherited from my grandmother and that I would need to take iron supplements b/c my body "just didn't process iron from the food I eat." He never bothered to look into why. When I was 16, I became a vegetarian b/c I thought that it was the meat in the hamburgers I was eating that was making me sick. I only felt better for a few months and then I started to feel sick again every tiime I ate until I got pregnant with my son. After giving birth, it seemed to go away. (I did gain ADD and depression symptoms, though.)

My son (who is 8 now) was having issues concentrating at school and I read that a whole-wheat, no sugar diet could help combat ADD, so I decided to try it (before then, I never ate whole-wheat.) After about 2 weeks of being on the all-whole-wheat diet, I got really sick. I stopped eating because hunger was easier to tolerate than the gut-ripping torture and extensive potty-time that came afterward. This went on for 4 1/2 months. I'd had it with doctors b/c only a few months earlier, I'd spent 2 1/2 months having extensive tests run to find out why I was breathing in 99% oxygen and my body was only using 60% of it (they never found the reason); I only went to the doctor because my SIL was convinced that I had galbladder disease and that I'd die if I didn't have it removed. So, I went and was very lucky that my dr. was out of the office and I got someone else in the office who immediately suggested celiac disease. Here I am now, 6 months later. I've been gluten-free since I left her office and all symptoms have cleared up (except when I get glutened, of course.)

How is your son doing with his concentration issues? Have you tried him on gluten free too??

[kayo]

I can't seem to pinpoint a specific trigger. I think I have had food intolerances my whole life. My mother tells tales of me projectile vomiting when I was a baby when she started me on food. I was always underweight and stick thin but it was blamed on my RA. I had stomach aches in the morning after eating cereal with milk but my mother said I was making it up since I hated my school (evil nuns). I struggled with hypoglycemia like symptoms my whole life (never diagnosed). I was always fainting or throwing up. I had bouts of shingles that the docs seemed confused by which I now wonder if they were dh. I remember relatives trying to fatten me up with spaghetti, ice cream and even beer. Oh the irony. People accused me of being anorexic even though I had a ravenous appetite that was never satiated. I used to get up in the middle of the night to eat. The hunger woke me up. In my 20's my weight had even dropped into the 80's. I struggled to get to 100 lbs and managed to get there when I was about 30. Certain foods just turned me off. Looking back I know I had issues with dairy that seemed to come and go. I used to live on crackers, cereal, spaghetti, etc. When I was 35 something changed and I started gaining weight rapidly. I gained about 40 lbs in 3 years after a lifetime of being severely underweight. Doc told me this was normal. Normal??? GI issues arose around this time too. I thought I had an ulcer and went for testing, it was negative. Since I had RA I thought I might have Crohn's. I saw a GI doc and she said, by just looking at me, said I didn't have Crohn's and diagnosed me with IBS but there was no testing. She gave me anti-spasm pills which didn't work. No advice on how to deal with IBS. Needless to say never went back to her. On my own I started eliminating foods from my diet; dairy, coffee, fried foods, etc. Some things made a difference but most didn't. It was trial and error for 4 more years (but mostly error). Years of headaches, GI issues, brain fog, depression, etc. and it was always blamed on the RA or stress. In my heart I knew it was food related. So last year I went gluten free and started feeling better, go a new GI doc, had more tests, etc. Then soy free and now I'm following the FODMAP diet (fructose, fructans, etc.) The rest is history.

[chilligirl]

I've had symptoms since I was a baby - as soon as food and formula started to be introduced. Eczema, constipation, bloody stool, constant ear infections, projectile vomiting, rashes, anemia, always skinny and small for my age by the time I hit a year old.

Later came chronic canker sores, hypoglycemia, joint pain, stomach pain, continued anemia, allergies, asthma, etc.

It seems I was diagnosed with everything BUT celiac disease. The constant anemia was explained as "some people just don't have good bone marrow". The cankers/mouth ulcers as "some people don't absorb vitamins well". The joint pain as RA. And of course allergies and allergic asthma. Oh, and don't forget the ADHD diagnosis, as well as the depression and anxiety. And unexplained infertility.

Last fall, at 29 years old, I asked my doc to test me for celiac disease, at the urging of my dad's girlfriend, who is a nurse. Doc didn't think I had it but agreed to do the bloodwork. Came back positive for celiac, much to his surprise!

I'm curious to see how many of my health issues are actually just symptoms of untreated celiac disease. It's been hard to tell what differences are from going gluten-free, versus being pregnant (I'm due in 2 days - yay!) - I figure I'll have a better idea of what's what in a few months

[Tina B]

I've had symptoms since I was a baby - as soon as food and formula started to be introduced. Eczema, constipation, bloody stool, constant ear infections, projectile vomiting, rashes, anemia, always skinny and small for my age by the time I hit a year old.

Later came chronic canker sores, hypoglycemia, joint pain, stomach pain, continued anemia, allergies, asthma, etc.

It seems I was diagnosed with everything BUT celiac disease. The constant anemia was explained as "some people just don't have good bone marrow". The cankers/mouth ulcers as "some people don't absorb vitamins well". The joint pain as RA. And of course allergies and allergic asthma. Oh, and don't forget the ADHD diagnosis, as well as the depression and anxiety. And unexplained infertility.

Last fall, at 29 years old, I asked my doc to test me for celiac disease, at the urging of my dad's girlfriend, who is a nurse. Doc didn't think I had it but agreed to do the bloodwork. Came back positive for celiac, much to his surprise!

I'm curious to see how many of my health issues are actually just symptoms of untreated celiac disease. It's been hard to tell what differences are from going gluten-free, versus being pregnant (I'm due in 2 days - yay!) - I figure I'll have a better idea of what's what in a few months

HA HA some people don't have good bone marrow.(good one) Mine was our family doc telling my parents I had "nervous stomach." Not diagnosed until after my second pregnancy when I think the stress to the body made all of the chronic symptoms worse, especially anemia. More severe than could be explained by childbirth.

[Marz]

(I'm due in 2 days - yay!) - I figure I'll have a better idea of what's what in a few months

All the best for the new baby, I'm sure you'll feel a lot better once you're not living for 2

Mine was definately a trigger. Although I had a bit of a "nervous" stomach my whole life, I could pretty much eat whatever I liked, and never had to worry about my weight ("Family genes", we called it, since everyone on my Dad's side is skinny. Hah! How true that was!).

in 2007 I took some anti-diarrhea medication, when I didn't need it (in anticipation of having it, when I really didn't want diarrhea to spoil a long road trip!), and subsequently developed severe constipation and eventually impaction after a few months. A few months after that started having occasional diarrea that progressively got worse, and I managed to link it to eating chicken and other various specific foods. Cut them out and I felt a lot better.

Then end of 2009 I had some bad food poisoning and a stomach bug, one after the other. Beginning of 2010 I caught a nasty stomach bug on a Cruise trip to Mozambique. I thought I had malaria, it was so bad! The meds didn't help for the nausea, they just made me sleep! It was also to be the start of occasional panic attacks at night. At the time I was on antibiotics for several weeks for all the "bugs". That was truly a trip to hell and back, but what doesn't kill you makes you stronger right?

Ever since then my stomach has never been right. Started losing weight when I really didn't want to, and getting fevers at night etc, even though tests showed I have absolutely no infections or parasites. Going gluten free cleared up 90% of the problems and a few unexpected life-long issues that I've always had.

So I think it's been there all along, the bugs and food poisoning just kicked it into high gear.

[cdog7]

In my case, my symptoms developed while going through my divorce proceedings. My ex had been abusive, and I was terrified he'd try to do something nasty (nastier?) before it was done - I just wanted out. So I always figured it was stress-triggered. But it's interesting that you mentioned Cipro, as I do remember having a bad infection about a year before my symptoms really started, and having to take Cipro to clear it. Maybe just a coincidence, but who knows.

[rdunbar]

now that i think about it, i had a near death experience in '95 with mushroom poisining, and @ 3 years ago i had a really bad staph infection on my knee. a lot of my symptoms got significantly worse after this I realize now.

[Zizzle]

I was a healthy kid and teen with the exception of UTIs, easy bruising and canker sores. 10 years ago I developed a vicious case of traveler's diarrhea in Guatemala and had self-diagnosed IBS after that. Three years later, a stomach bug in Thailand added lactose intolerance to my IBS. After my first pregnancy, I developed an itchy rash that lasted almost a year. Dermatologists and docs could not ID the rash but they discovered I had sky-high autoantibodies but no recognizable disease. Last year the IBS-D turned into diarrhea that I could no longer ignore. A colonoscopy showed microscopic colitis. My gastro refused to test for celiac because a blood panel 5 years ago was negative. So I went the Enterolab route before going gluten free and realizing it was gluten causing all my problems!

[amoliphant]

My trigger was severe emotional distress...I think the common denominator is, it is kind of like the "last straw" scenario...any kind of stress, whether it be from running (another one of mine), emotional, physical, whatever, it's as if the body gets to the point where, "ok, this is the last straw, I cannot hold this gluten thing off anymore.." and

"thar she blows...!" I believe mine may have actually "started" after the birth of my last child (physical stress) and I just did not figure it out until the emotional distress episode hit and there was no mistaking what I was dealing with.

[DownWithGluten]

I can't think of a trigger that makes sense (like stress or an infection). All I know is that there is an identifiable turning point for me. Just some vacation to Canada, I got "sick" in that special way for the first time that I can remember. I was about 15. Prior to that, I had some digestive issues here and there (bloating, throwing up, some chest pain/side pain after eating greasy food)...but this was the first of what I now call "gluten attacks." When my body painfully expunges itself, and not via vomitting. I was like ...wow what was that? Then a week later, it happened again, only not as bad. Within the next 7 years, this kind of thing happened off and on, and got more and more frequent as time went on. I started the GI doctors maybe 4 years after and heard things like IBS, trouble digesting food, etc. Then it still wasn't another 2 or so years later of it continuing to get worse that I just gave up and went on the gluten free diet which changed it all!

So anyway...no infection or anything traumatic that caused the turning point, that I know of. However, there is a clear time that I can remember when it took a turn for the worse and "began" becoming a chronic thing.

[K8ling]

I spoke to my mother, and she reminded me that I always had a wonky stomach. It was weird because I would be fine and then BAM I would have a stomach issue. She also said when I was a toddler I threwup a lot if I ate too much bread so she pretty much cut it all out for a while and it got better.

She thinks I have been "defective, digestively speaking" my whole life.

LOL I love her phrase for that.

[celiac-scott]

It's interesting reading people's triggers... I was diagnosed around 3 years ago. I had no symptoms - the only reason I had the test was because my dad has celiac (and of course I need something else in my life to worry about).

So the doctor says I have celiac, but says that my intestines look pretty good, with only minor inflammation. I figure, what the heck, live it up for a few months and when I start feeling bad, change to gluten free. Only that day never came.. so I kept eating gluten. I had blood tests every 6 months or so, and my levels were always perfect, so I didn't see the point in switching to gluten-free.

Then my asthma inhaler gave me oral thrush. This is around a month ago. I started on a new inhaler to treat my very very very minor case of asthma (hindsight - wish I had never treated it) and got a really sore throat. Treated with anti fungal medicine and it went away in a few days.

Fast forward to around a week ago.. suddenly I'm dizzy/lightheaded every day and can barely concentrate. I self diagnosed this as having anemia and started gluten-free and iron supplements. I'm hoping to get past this and go back to eating gluten (yes, I know the risks - no need to post them), but my fear is that now that it's been triggered, it will continue.

My conclusion is that the oral thrush caused all of this. I read something a while ago about oral thrush possibly triggering gluten sensitivity symptoms, and figure this is what happened to me.

[naiiad]

I went through a two year period of extreme dieting - refused to touch fat, carbs (except fruit), or processed sugar. The minute I started eating normally again, I started developing celiac symptoms.

I could have been gluten-intolerant for my entire life for all I know, but it definitely become obvious at that point.

[sfamor]

I'm not sure about a specific trigger although around the time I started having symptoms I did have a particularly stressful job working at a group home for children with severe emotional disturbances. All at once, and totally out of the blue, I developed severe acid reflux, Rosacea, and started having panic attacks, none of which seemed to improve even with medication. I had always been very healthy both physically and mentally and I could not figure out what was happening to me. All of my symptoms were treated individually before finally 7 years later my celiac's was discovered by accident during an endoscopy to figure out why I was having such severe acid reflux (nobody had suspected celiac's and even after the diagnosis the doctor told me the acid reflux was unrelated. Actually it was gone within 3 months!) It drives me crazy to think I suffered for all those years with nobody putting two and two together, but I know some people go much longer without a diagnosis

[aeraen]

Thanks for bringing this thread up. I never realized how people could pinpoint the origins of their celiac.

I actually think I had it all my life as, through the benefit of 20/20 hindsight, I can see many things from childhood on that point to it.

I remember having sudden diarrhea attacks as a child. Not chronic, but common. I also had exercise-induced asthma... as in major coughing attacks when running around playing with my friends, so that I had to sit out and stop playing. I remember being tired (considered "lazy" at the time) and eventually became the kid who would rather read a book than play a sport (hey, who wants to play sports, if you always end up coughing up a lung?)

I was a big sugar addict and wonder if that came from lack of nutrition... looking for energy the only way I could find it? Needless to say, a sedintary lifestyle and lots of sugar made me overweight.

The real change, though, occured when I was pregnant w/ both of my children. No morning sickness for me, but everything I ate went right through me. Sometimes I would have to leave the table w/ dinner half eaten to run to the bathroom. Of course, I thought it was hormones.

It was really DH who convinced me to take it seriously a few years ago, and I stopped eating gluten. It cleared up not just my tummy issues, but several issues that I had no idea were related.

My heart now breaks for that little girl who couldn't run around with her friends. I do think my life would have been so different if we knew 50 years ago what we know now.

[mcbeez]

I had mono for eight months and apparently it sparked my Celiac symptoms

[annegirl]

I pretty much had stomach issues from the time I was born, but nothing bad until I got into my 20s. When I was crawling I would constantly "urp" up on the floor. Since I loved mashed carrots my poor parents' carpet was covered in little orange spots.

I struggled with extreme pain from ulcers in my teens but that passed finally as I settled down a bit and for a couple of years I was totally healthy.

It is really obvious to me that while I may have had problems before, my celiac was triggered when I lived in the Ukraine for 3 months. I had avoided bread because I just didn't like it (go figure) but there it became the main staple. It was white and processed and I was used to whole wheat bread and muffins. Immediately I developed gas and all the lovely gastric issues.

Fast forward a few months after getting home, I suddenly started having reactions to all scents, flowers, cleaning products, scented candles etc. This went on for years and then the fatigue, brain fog and joint pain kicked in. I tried doctors (they prescriptioned me to death) and a holistic nauturopath (she insisted I had a chronic viral infection) and was still left hurting so bad that at 27 I couldn't walk across the room.

Finally over a year later I have the answer! Gluten free for 1 month and 4 days and I'm never going back. The difference in my life is night and day. I have coworkers and family members commenting on how different I am (and I was pretty upbeat before). Now I just annoy people by being so happy and perky. No amount of bread is worth giving up this feeling.

[Fire Fairy]

I'm not sure but I think I can narrow it down. In September 2001 there were 3 events that made me very upset all in a one week period. First my constant feline companion. my beloved Billie Jean passed away suddenly of Liver failure. I felt I had failed her. Then one week later was September 11th. The next day my best friend's mother died suddenly. I was the friend who helped deal with the estate which was not in my city. We made day trips back and forth dealing with everything. It was very depressing.

A couple months later my first dramatic weight shift started simultaneously with my starting to date a man I would not recommend anyone date. He wasn't bad but he was good either. He was a drama queen and he drove me nuts! I don't like drama but for some reason I stayed with him a year and a half. During which I drank Pepto from the bottle.

Now if none of that started my Celiac disease going I suspect it was my nasty allergic reaction to Nair in 2002. It landed me in the ER with Doctors and nurses laughing at me. I had to have steroids to get over it.

I don't know if it was September 2001, the boyfriend, or the Nair but I think it had to be one of those 3.

[cap6]

I believe that I too had a trigger, or combined triggers. Stress at work (Social Services), then I retired and in order to get the family healthy I went whole wheat on everything i could. Talk about an over dose of gluten! I've had symptoms on and off all of my life but it was right after the stress & wheat over dose that I became very sick.

[Terri O]

All of these stories are so amazing! I too was called "the iron gut" in my teens, had leg cramps so bad as a child that were attributed to growing pains, never liked bread, depression, anxiety attacks etc etc! I have had several episodes that could have been the trigger for me. Life became pretty bad for me when we moved to the country. I had anxiety so bad that I couldnt drive! So I stayed home and watched other people's children. I was physically pretty healthy I thought...then I self diagnosed Leptospirosis--got it from my dog. I had to go on a long course of antibiotics (doxycycline) and that is when the big D started in earnest. I always felt better when we were camping...read: meat on the grill, potatoes and veggies. When I came home it was the fatigue, brain fog, joint pain, depression again. It got so I didnt want to do anything but lay around the house! I went in for my yearly stuff with a new PA at the Dr office. SHe said we needed to "get on top of" my persistent anemia. "I am going to run a blood test for Celiac." My goodness, it came back roaringly positive and I went on a gluten-free diet.

I have been gluten-free for a month now. Have gotten sick a few times...the gut isnt quite healed and I am wondering if I have other in-tolerances too? My energy level is much better and the best thing is that the joint pain is virtually gone! I think I will be able to stop taking Gabapentin for pain! I am so happy!

Of course it was a physician's assistant I have to thank for finally figuring out what was wrong with me! I think I will send her a thank you card! T