Did You Have A Trigger That Started Your Symptoms?

[masterjen]

I was diagnosed 2 months ago, but when I think back, I probably first started showing symptoms 7 years ago. At that time I was finding I often felt bloated after lunch (for which I almost always had a sandwich), so I decided to give up bread. I blamed my symptoms on yeast, and without bread, I felt better. As best as I can recall I no other symptoms until Spring 2009, when I had 10 days of severe diarrhea in absence of any other symptoms (no 'flu-like symptoms such as aches or fever, and no headache that might suggest food poisoning) that caused me to lose weight I couldn't afford to lose. I work-out a lot, and when I started running outside again that Summer, I just couldn't get back into the outdoor-running rhythm like I could previous years, and throughout the Summer and into the Fall my workouts were disappointing: I felt I was losing strength and they seemed to take more out of me than they used to (no longer would get that "tired but energized" feeling after a workout). Also during these summer and fall months I had intermittent pressure and occasional bloating in my stomach, but it was so intermittent that it was easy to find something to blame: too many ab crunches, too much root beer, etc. Over Christmas I had extreme bloating and gas after every meal that would seldom completely go away. I was just starting to get my act together to see my doctor about it, when in mid-Jan. of this year I had severe abdominal pain that landed me in emergency, and then got tests, etc. No diagnosis of the problem in the ER: I did some online research later at home that suggested I might have celiac, and talked about what I found out with my doctor. One thing led to another, and I was diagnosed with celiac in Feb.

I have been very unhappy in my job for the past 5 years, I had been working out hard to try to get back to where I felt I should be physically, and over Christmas I was very upset and concerned about a close friend (personality changes and possible involvement with selling drugs), so maybe "stress" had some kind of triggering role for me.

[DonaldandAlanda Evans]

I was in a motorcycle accident that seemed to bring on the bad symptoms.

[ewmyers]

About a year ago my guts started acting funny after eating sushi. 6 months later the symptoms had become cyclical and I was able to self diagnose internal parasites. I took an herbal remedy ParaGone for 2 months, until I stopped seeing any more intestinal flukes. My symptoms were much improved, but still present, and no longer tied to anything I could figure out. I asked my doctor, he had me tested for celiac disease, and the final diagnosis (biopsy) came last week. I was only eating wheat about 3 times per week before, now zero.

[Skylark]

For me it was a severe flu in my early 20s. Unfortunately, it took 12 years for me to figure out all my GI problems, anxiety, and chronic fatigue were celiac disease.

[Emsstacey]

I have had symptoms all my life, but the stress of paramedic school caused symptoms to step up a bit. Had an EGD that dx only gastritis and bloodtests that revealed anemia and low platelettes. I don't think I was ever tested for celiac. Fast forward 12 years to age 30 and ended up with Lyme. The combination of Lyme and extended antibiotics left me feeling 100 years old with extreme fatigue and joint pains. Ended up dx with osteopenia and very low vit d. Bloodwork showed high dgp. Have not pursued further testing as the docs here are not very up to date with newer research and I am tired of being a guinea pig.

[Rebecca Madrid]

I'm so glad this was started! I thought I was weird for having no symptoms all my childhood. I was always the one with the iron gut, could eat anything no problem and wash it down with a glass of milk.

I guess the symptoms such as fatigue, depression, inattentiveness, and low iron kicked in around my second term of grade 12. I'm going to hazard a guess that the stress of exams, acceptances, and life choices may have played a role. The symptoms increased gradually during a summer of 44 hours a week supervising evenings at a Tim Hortons. Along with the stress, my diet consisted of mainly Tim's bagels, Timbits, and muffins. Should have been a danger sign. All this while I was on very high doses of ferrous fumerate (gluten free) and the side effects really got me.

Next came the stress of travelling from home in ON to school in NL. Introducing a weekly dose of around 6 beer did not help. After being diagnosed with depression, and bulimia (love the healthcare out there) I finally started to research my symptoms. I ended up self-diagnosing by trial and sticking with it. This was three months ago.

About two months ago Norwalk swept through our Residence community. As the first in my house to get it, we didn't know what to do. I ended up spending the night in the emergency waiting room, and mainly the bathroom. I finally had to reaproach the triage and ask for care, and the most i received was, "its a bug". After the Norwalk, I haven't been able to tolerate any gluten whatsoever.

I'm happy to see that not everyone is GI since birth

[Mari]

I had some symptoms of celiac disease by the time I was four years old, I remember my mother telling me I could not eat certain foods and then as I grew there were problems with depression, lack of stamina, my leg bones aching, slow growth and itchy skin. When I was 19 I got a Salmonella infection in my gut and was in the hospital for a few days and this seemed to have started intestinal problems. In my 20's and 30's the Drs thought I might have an autoimmune disease but couldn't diagnose it. My health deteriorated and by the time I was in my 40's I had to quit working and move to the country to avoid city pollution. I was finally diagnosed at age 70 and it was just great to learn that I could finally do something about recovering my health. I have also been unable to stop smoking even now after 4 years gluten-free.

[Looking for answers]

I was never the same after a surgery when I was 14. I had severe stomach pain and D throughout the rest of my young adult life and into college. At 25, I started working out really had. One day after a rigorous hike, I looked down at my leg and gasped when I discovered fat loss - it looked like someone had tied two invisible rubberbands around my legs. I found some obscure research - doctor never saw anything like it - that suggested a link with autoimmune disorder. I convinced my doctor to run an autoimmune panel, and viola! . . . crazy numbers came back...they couldn't figure out if it was Lupus, Sjogren Syndrome, etc. However, I never had any symptoms of those diseases. I did my own research, decided to go gluten free, everything cleared up and here I am today.

[*Daniella*]

Good topic! I didn't have a single symptom until I deployed to Iraq when I was 25. I spent months in Iraq wondering what was wrong with me. I thought it might have been triggered by the series of anthrax shots but to this day I have no idea. One day I was perfectly healthy then the next I was sick. Either way, I wouldn't trade my Iraq experience for the world and I would do it all over again knowing the outcome.

[GlutenFreeManna]

I'm not sure what was the trigger. I was healthy and symptom free up until my mid 20's. While in grad school I started having stomach issues of and on. It was diagnosed as gallstones. I was told to alter my diet--cut back on fatty foods and avoid anything with high acidity (tomatoes, onions, peppers) which could bother me. Ironically most of the veggies I eat today with no problems were on the no-no list. I turned to eating mostly bland foods--bread, pasta, crackers etc but it didn't work. I would get so sick to my stomach and start throwing up bile. This went on for about two years before I ended up very sick in the hospital and having my gallbladder removed in an "emergency" surgery. Looking back I wonder if my gallbladder was not the problem at all but a symptom of celiac's disease. I did feel a little better for about a year after having my gallbladder removed, but I never felt like I regained my strength and stamina I had before. I felt really weak and old most of the time. I gained a ton of weight and didn't eat well at all. My health was up and down but not super bad for a few years. When I got married I rented a very old house in the country with a black mold problem. While living in the house I got sicker than ever before. We had to break our lease to move closer to a doctor and friends that could help us. I had dropped out of school and was unable to work I was so bad. We discovered the mold growing behind the fridge the day we moved out. I slowly got better outside of the moldy house, but still had many, many health problems. I was tested for Lymes disease, epilepsy, heart problems, MS, Lupus, sleep apnea, diabetes, hypothyroidism, and probably a few other things I'm forgetting; the doctor was trying to rule out as many things as possible to arrive at a diagnosis of either chronic fatigue syndrome or fibromyalsia (sp?). After about a year out of the moldy house I saw a special on tv about how dangerous mold could be and put two and two together that maybe I had health issues caused by the mold. I started reading about food allergies and intolerances due to mold exposure and other special diets and stumbled upon celiac's disease in the process. I decided to do an elimination diet because I was pretty sure certain foods bothered me but I had trouble figuring out what exactly. And that's where I am today. I don't know if my gluten-intolerance started with the gallbladder problems of if it was triggered by the moldy house, but I know it was one or the other. I do remember that I started getting really sick from eating pizza after the moldy house. I thought it was the cheese because I had some mild lactose intolerance before, but it turns out it was the crust and the cheese making me sick.

[quincy]

I know many on this forum have had symptoms all their life , while others started later in life, and I'd like to hear about it.

My story is that I was eating anything I wanted with no symptoms at all (that I know of) until age thirty, when I traveled to Peru on a climbing trip. I got just a little sick from the local bacteria and took a single dose of Ciprofloxacin (common antibiotic for gut bugs).

Over the following five years I gradually dropped weight (155lbs to 145lbs) without thinking too much of it, because I never felt sick until the last couple of years.

Then I took a two month trip around SE Asia and got really hammered by sickness, winding up in a hospital there for rehydration and antibiotics, and then taking yet another round of Cipro on my own before returning to the US.

Once back, I failed to get better and was dropping weight fast (down to 120lbs) and was wondering if I was going to die. I self diagnosed because the dermatitis herpetiformis disappeared in Asia but came back within a week of returning to the US.

I immediately went gluten-free and simultaneously started taking Digestive Advantage.

I then gained 55lbs in a month, because my appetite was in survival mode and I was eating everything in sight and now it was actually sticking instead of running through me.

It's been a year this month now and I've gotten my official diagnosis from the doc. Things are much better, not perfect, and I'm living life as much as I can. I wonder if I would have ever had celiac symptoms if I'd just stayed in the US and never gotten sick overseas. I'm worried about doing any more 3rd world travel because it might make my celiac worse or just ravage my insides more, making me unable to eat other foods too.

I also suspect my symptoms started after some stupid doctor put me on a 3-5 week cycle of Cipro for what he thought was a chronic prostate infection. I later went to a urologist who told me I did not have a prostate infection and to stop the cipro immediately. Too late, damage done. have never been the same since and whithin a year I was fully gluten intoleran....

[StacyA]

A week after I moved my grandmother into an assisted living facility I had a sudden onset of GI symptoms that led to weight loss, fatigue and night sweats. My PCP thinks I picked up giardia, and intenstinal parasite, at the facility. The medication she gave me wiped out half the symptoms, but not all of them, so she referred me to a GI doctor who diagnosed celiac's. We never confirmed the giardia, but the symptoms matched, and I've read that giardia is a common trigger for celiac's.

[Korwyn]

I know many on this forum have had symptoms all their life , while others started later in life, and I'd like to hear about it.

My story is that I was eating anything I wanted with no symptoms at all (that I know of) until age thirty, when I traveled to Peru on a climbing trip. I got just a little sick from the local bacteria and took a single dose of Ciprofloxacin (common antibiotic for gut bugs).

Over the following five years I gradually dropped weight (155lbs to 145lbs) without thinking too much of it, because I never felt sick until the last couple of years.

Then I took a two month trip around SE Asia and got really hammered by sickness, winding up in a hospital there for rehydration and antibiotics, and then taking yet another round of Cipro on my own before returning to the US.

Once back, I failed to get better and was dropping weight fast (down to 120lbs) and was wondering if I was going to die. I self diagnosed because the dermatitis herpetiformis disappeared in Asia but came back within a week of returning to the US.

I immediately went gluten-free and simultaneously started taking Digestive Advantage.

I then gained 55lbs in a month, because my appetite was in survival mode and I was eating everything in sight and now it was actually sticking instead of running through me.

It's been a year this month now and I've gotten my official diagnosis from the doc. Things are much better, not perfect, and I'm living life as much as I can. I wonder if I would have ever had celiac symptoms if I'd just stayed in the US and never gotten sick overseas. I'm worried about doing any more 3rd world travel because it might make my celiac worse or just ravage my insides more, making me unable to eat other foods too.

Looking back on it, my first symptoms showed up about 20 years ago. But nothing really major and nothing that was really a 'big deal' according to my various drs. I wasn't really sick at all. I started having some GI issues about 5-6 years ago, just all attributed to stress. Then after some oral surgery and the antibiotic I developed a major C. Diff outbreak that nearly killed me. That kicked off my celiac disease full blown and within 8 months I was barely functional physically or psychologically. I was pretty sure I was dying and I wanted to. My Dr. was going to send me to some specialists because she'd run out of things to test for. So my really trigger for the fullblown celiac disease was the C.Diff.

[Dino]

I think it started with me about 4 years ago when I had a stomach virus that ended up getting into my heart muscle. Even though I completely recovered from that I never felt quite right. Over the last couple of years I have been fighting fatigue to the point that they though I might be going hypothyroid even though the labs were not quite there. Over the last 6 months or so started to have nagging GI issues, nothing drastic but they slowly were getting worse. Saw my doctor about it in April (2010) who initially said I had IBS but relented when I pushed. Tested positive for Gliadin Antibodies and have been feeling better than I have in a long time since being gluten free for about a month.

[Hummingbird4]

Interesting topic!

I was diagnosed at age 42. Up until then, I had zero symptoms and could eat anything I wanted. Suddenly one morning I had a pain in my stomach just under my sternum, and it wouldn't go away. I tried eating crackers but it made it worse (gee, what a surprise!). I had this pain for a couple of weeks and called my doctor. He suggested a round of Prilosec and an appointment with a gastroenterologist. The Prilosec did help, and by the time I went in for the endoscopy, my symptoms were gone. I received the diagnosis two weeks later (pain was still gone), two days before a trip to Europe. I ate whatever I wanted in Europe - my last hurrah - without any pain at all. My bloodwork was also positive, so I reluctantly accepted the diagnosis and went gluten-free.

My trigger: I think it was stress. My daughter's best friend was killed in a terrible accident, two days later my father in law died, and my son was graduating from high school and figuring out where he wanted to go for college. Just a lot of stressful things happening all at once.

[conniebky]

I was unemployed for a year. Then I worked a temp job for a year.

They hired me this past Christmas. After the Holidays is when my symptoms started. I got a HUGE increase in pay, and finally have insurance, PTO, etc.

I don't know, can a good situation be a trigger? It seems the relief from stress made everything go crazy.

[kafeen]

I suspect that the trigger for me was when I had chicken pox at age 9. I wasn't diagnosed until age 26, which was almost two years ago. But the summer after I had the chicken pox was when it all started - I started to gain weight, I was going to the bathroom all the time, I had a lot of anxiety and brain fog, I started to get weird stomach cramps all the time, and I would sometimes throw up for no apparent reason. Around age 12 I was diagnosed with hypothyroidism and anemia. The hypothyroidism got progressively worse throughout my teen years and the anemia came and went periodically up until I was diagnosed, and it was actually the anemia that made my doctor decide to test for celiac, since I had a lot of iron in my diet, and taking supplements didn't increase my iron levels. The blood test and biopsy were both positive. I actually have a cousin with celiac, but it didn't even occur to me that celiac might be my problem, since she is very skinny and I've always been overweight. It wasn't until after I was diagnosed that I discovered that a lot of us actually are overweight! My parents both tested positive after I was diagnosed, and they've always been overweight too. Within a few months of going gluten-free, I felt better than I could ever even remember feeling. Also, this is my first post, so hi everyone! Oh, and to add to the auto-immune diseases, I was diagnosed with juvenile arthritis at age three. They thought it went into remission around age 7, but I developed uveitis about 6 months ago, which my ophthalmologist thinks is probably related to the JRA, since every other condition they could think of to test me for came back negative.

[marie1107]

For my part, I can recall different moments when celiac disease seemed to be triggered (with stress, diet change etc.) but I think the strongest one was when I got a whole lot of vaccines (before travelling abroad). My already very fragile health definitly deterioted.

I have never had to get vaccines again since but I actually would be quite worried if I had to.

[polarbearscooby]

I don't know if I had a trigger...persay.

My life has been full of those 'triggering' events and looking back on life I've always had symptoms...

But they just steadily got worse during my life. Loosing weight, failure to thrive, stress and anxiety, gallbladder attack, had to have it removed because it died inside me, emergency appendectomy, the most embarrassing moment in my entire life, and my final diagnoses. That's my story in a nutshell.....

[lucia]

Afreeclimber,

Interesting that you can relate your symptoms to traveling in SE Asia and then coming back to the U.S. Did you eat much gluten when you were there?

I'd had neuropathic pain for years, but my gastrointestinal symptoms arose only after trips to India. The first time (in 2006) I was there for 6 weeks. My symptoms were severe enough when I returned that I went to the ER where I was told there was nothing wrong with me. Then, my symptoms mysteriously receded after several weeks. The second time I was in India for 3 weeks. That was in January, and I've been dealing with my symptoms ever since.

My working hypothesis is that during the weeks in India I started to detox from gluten. Indians eat very little gluten. Even the deserts are gluten free. When I came back and reintroduced gluten into my diet - bam - I got sick. The first time I think that my immune system probably worked overtime to get me feeling back to normal, but we know our bodies can't keep that up.

In any case, I know I would have gotten sick sooner or later.

lucia

[i-geek]

I've had mild symptoms with occasional (every 5 years or so) bad flare-ups for my entire adult life and much of childhood/teen years, but I always recovered after a few weeks at most so I just assumed that the docs were right, I had IBS and just had to deal with it. I got sick at the end of August 2009 with a really bad upper respiratory viral infection and didn't take proper time to rest and recover. I think that triggered the switch from mostly latent disease to full-blown disease since my health went steadily downhill from there and didn't start to improve until I went gluten-free right after Christmas. It really was like a switch had been flipped, too. In a way it was a relief. There's a very strong history of autoimmune disease on both sides of my family, and I was dreading the onset of rheumatoid arthritis (on both sides with devastating effects in mom's family) or diabetes (on dad's side but with strong prevalence). Celiac disease IMO is the "best" of the autoimmune diseases- if I stick to my diet, I'm good, and hopefully I won't develop a second disease.

[torimuse]

I had a very specific trigger. Up until November 2008 I could eat whatever I wanted, when I wanted with no symptoms whatsoever, unless you count the fact that I've never liked the taste of whole grain or rye breads. I found out that month that I'm asymptomatic for Urinary Tract Infections, and it seems like every time I get one it's the super-bacteria.

Well, this one in Nov 08 was my first one ever, (age 22) and needless to say, it wasn't discovered until it was too late. The doctor gave me the wrong medicine at first (the bacteria were resistant to Bactrim), and the infection progressed to my kidneys. Before they could prescribe me the proper medication, I had developed a fever of 102*F, dizziness, nausea, the works. After then, foods that I had previously enjoyed made me nauseous, to the point where I had pretty much constant nausea for a year and a half. I've also dealt with constant mild to extreme abdominal pain, headaches, worsening mental issues, fatigue, but no diarrhea or weight loss. I had almost constant constipation, and I actually gained 20 lbs. IBS diagnosis.

Driving 6 hours through the night, maybe two months ago, I bought a 5 Hour Energy drink. Turns out I'm fairly allergic. It was my first ever food allergy, and I think it stressed my system enough to kick my gluten-intolerance into high gear. Unfortunately, that was also when I began delving into the wide world of wheat beer. A sip of Blue Moon left me farting on the drive home so much that I had to keep the windows down on the interstate, but I didn't connect it with the beer until my sister took leave home from Germany. We shared a six-pack of Leinenkugel's Sunset Wheat on the suggestion from a friend, and I was completely miserable afterwards. This led me thinking to everything else I had eaten that left me nauseous and gassy, which led me here. Hi!

[mom2blondes]

Mine was the birth of my daughter. I bled out quite bad after the birth, she came quite fast and the OB didn't get there until 30 minutes after. I had lost a lot of blood afterwards and almost died.

Also, while bf my daughter I had mastitis 3X and thrush the whole time. It was a vicious cycle. It just put my body into a tailspin. I was never the same after that.

[Tina B]

I may have been undiagnosed for a long time because I had a lot of vague GI symptoms as a child. Nothing dramatic but the GP told my parents I had a "nervous stomach". True diagnosis was after my second child was born. Severe iron deficiency anemia that did not respond to iron replacement. H & H 6 and 21. Vague GI symptoms, bloating, gas, occ. diarrhea etc. Hair falling out, dry skin, bruising. Weight loss: down to 102 lbs. Looking back all sign of malnutrition. Blood work showed depleted iron reserves and positive Antigliadin antibodies. Diagnosis confirmed by duodenal biopsy. A GI figured it out when he couldn't find any microscopic bleeding to explain the anemia. So, in retrospect, it got much worse after pregnancy which is considered a trauma to the body. I was diagnosed in 1990.

My husband is an internist and has since diagnosed people as late as in their 70's.

[Almendra]

In my mid-teens I got shingles with impetigo. After that, I noticed strange GI symptoms, but they were embarrassing and caused no pain. I told no one at that time.

I guess through the years the damage increased and the symptoms worsened fairly gradually. When I did tell a doctor about the GI symptoms I was having ~10 years later, she simply wrote IBS on my chart. It took about 15 years total (from symptoms to diagnosis) for my DX with Celiac.