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    Do you have questions about celiac disease or the gluten-free diet?

Guest ~jules~

"the Trigger"

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I think my trigger was when I got stomach flu (the night before we were going into Disneyland. I was with my friend & her family. So I never even got to go into Disneyland. I just drove 7 hrs. there & the next day 7 hrs. back.) But it seemed like my stomach flu never went away. So that's when I got suspicious & started doing my own research. And someone in my family also has it. So I told my doctor that, & she ran a blood test, & it was positive. But they still have to do a bioposy. But I'm 99.99% sure that I have it.

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In the course of 3.5 months, a close friend of mine was shot (by her schizo brother) and paralyzed from the waist down, another close friend was dx'd with cancer (he died a year later) and my sister's first child, my first nephew died the night he was born. They revived him just to give the parents time to say goodbye as he was brain dead.....he had reflux and choked to death and well it was the worst thing we'd ever been through.

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I'm not sure I can attribute it to one specific event, really. I "only" have gluten sensitivity, though, so I'm not sure if that matters to your question. I do remember that at about 15 I started having hypoglycemic episodes. I think it was overall stress from my home life.

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You can add me to the mono list. I've had it not once but a fun filled 2 times!! Once at 9 (I was so sick my mom thought I was gonna die) and once at 19 in combo with strep. I don't think those were the triggers though. My mom said I threw up a lot as an infant but that all seemed to go away and never had any problems and was really a very healthy kid. I developed cluter migraines though as a young teen. Those also seemed to fade into the woodwork for a long time.

The first GI thing I can remember is during my second pregnancy when all of a sudden I couldn't drink milk any more and my stomach always felt burny. Also during that pregnancy my auto immune system went CRAZY. Acne, asthma, severe seasonal allergies....it was terrible. All of that disapeared by the time my dd was 11 mos. and stopped nursing. From that point on I was fine until last year. The trigger for me was moving, going to school and working, each full time, my fiancee (now husband) being stationed in Korea, taking care of 3 kids alone and the final straw was a horrible almost relationship ending fight that DH and I had. Oh, and I almost forgot my mom falling and breaking her shoulder which we later found out was bone cancer. Shortly after that I started getting a weird rash that wouldn't go away. Was diagnosed with DH about a month later. Once I went gluten-free I realized that I felt really good even though I never realized that I had felt bad. Developed hypo-thyroid about 4 months later.

Since going gluten-free I have felt great. The only intentinal glutening I've had was the 6 weeks before my EGD where I was told to "load up" with anything gluten containing. OMG was I sick. Almost daily migraines, unbearable itching from the DH, extreme fatigue, ataxia and the list goes on and on. There were actually a few days my DH wouldn't leave to go to work because he was afraid he would come home to find me dead.I lost my entire summer, my poor kids put up with me always being "sick" and it was terrible. Surprise, surprise the biopsy was positive. I went back on the gluten-free diet the day of the EGD and within 2 weeks all of the symptoms went away.

So here is my question. Is it possible that I just triggered and developed celiac at 35 or was it a life long thing? When I had the EGD there was some indication of celiac however my bloodwork was very good. My GI thinks it was due to the fact that I had been gluten-free for a year before the test. Who knows....I don't think anyone ever will and really it doesn't matter the results are still the same. Now I"m fighting to get my kids tested. I have a strong suspicion that my sister and dad have it as well but they are adults and I can't force them to have a blood test, lol.

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I don't know Ty's trigger. Ty just turned 7, he was diagnosed about 2 1/2 months before his sixth birthday. He was very healthy, never sick as a baby or young child, rarely complained of a stomach ache. In hindsight, he never ate much whole or 60% wheat bread but would eat buns, cake, cookies and load up on spaghetti. Once he was potty trained I was not privy to his bathroom habits, but since he was never doubled over in pain after a spaghetti supper, and never spent hours messing up the bathroom, we had no idea anything was wrong until right after he started kindergarten. He was falling asleep at the supper table practically daily and we discovered celiac after a period of time on liquid iron and blood test results indicating he was not absorbing it properly. So, starting school?

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Mine was similar to the mono thing, but I never actually had mono. Everyone in my college dormitory got sick with a stomach virus; I woke up one day and thought I had it too because I went to the bathroom and fainted. (They all thought I was drunk--I WISHHH!!! I was drunk!)

Anyway, after that the exhaustion, nausea, and relentless dizziness very near did me in. They kept testing me for mono, but never came up positive...

Dxed with orthostatic hypotension too.

I don't know Ty's trigger. Ty just turned 7, he was diagnosed about 2 1/2 months before his sixth birthday. He was very healthy, never sick as a baby or young child, rarely complained of a stomach ache. In hindsight, he never ate much whole or 60% wheat bread but would eat buns, cake, cookies and load up on spaghetti. Once he was potty trained I was not privy to his bathroom habits, but since he was never doubled over in pain after a spaghetti supper, and never spent hours messing up the bathroom, we had no idea anything was wrong until right after he started kindergarten. He was falling asleep at the supper table practically daily and we discovered celiac after a period of time on liquid iron and blood test results indicating he was not absorbing it properly. So, starting school?

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My trigger was a stressful pregnancy, I believe. My second pregnancy, I had hyperemsis gravidarum (which is EXTREME morning sickness), 24 hours a day, for 4 months, to the point of dehydration on several occasions. Then I had a kidney infection (and I only have one kidney, so that's always serious for me). Then, I started in pre-term labor at 25 weeks. I was put on hospitalized 9 times between 25 weeks and when my daughter was born at 33 weeks. I was on two different medications to stop labor - both with horrible side effects, vomiting being one of the worst. At 33 weeks, I started into kidney failure and they stopped all my medications and by daughter was delivered. She was fine, just small, actually able to breathe on her own, because I had gotten shots to mature her lungs. I lost a TON of weight pregnant, was about 15 pounds below my pre-pregnancy weight when I went home from the hospital - and it all started after that. My symptoms have always been severe indigestion, alternating chronic and diarrhea, feeling full all the time.

I still don't have an official diagnosis - I'm self diagnosed and gluten free almost 2 months. I feel better than I have in years.

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A few of my symptoms showed up during pregnancies but the main trigger was when my husband left me for 5 weeks (and moved in with someone else). He came back and when the realization of what he had done hit him, he hit bottom and had to quit his job. Three months later he went back to work but we couldn't make ends meet so I ended up having to get a job as well. A few months later I had diahhrea for 6 weeks straight and the rest is history. So my main trigger was definitely STRESS.

BTW, it was a bit of a rough road but my marriage is wonderful now and hubbie and I are best friends.

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Stress kicked me over the hill.

Years of IBS and slowly loosing weight and constant lower back ache.

It triggered in one specific day....and for two months I was house bound with a toilet no more than two feet away. :blink:

Diagnosed with an endoscopy and biopsy.

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I think for me it was Lyme Disease. Not really sure because I also had ALOT of stress and Graves Disease...everything was happenning at once. I'm thinking it all started with Lyme though. <_<

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My situation is strange... I was on birth control for 22 years.. (minus the time to have kids) everytime they switched me to generic, and that sent me for loop, so went back to normal. So My Dr finally took me off at age 40 and all my symtoms started.. bloated, tired, depression, foggy brain, hard time staying focused, migrain headaches... it was horrible. I thought I was loosing it!! So very happy I have now been gluten free for 3 1/2 months (had a few accidental glutens, and that wasa bad)

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I actually think I have had this most of my life.

I was a skinny, spacey kid with undiagnosed ADHD (I'm blonde, so it was expected :blink: ) My ADHD has gone away since going on this diet, but, I am still a little spacey.

If not since childhood, my other guess is that it all started back in January 1990 when I caught a bad virus / flu (mono? ) on top of two car accidents 6 weeks apart back in 1989.

By May 1990, I had back to back upper respiratory infections, extremely low blood pressure, orthostatic hypotension, horrible level 10 pain from head to toe, severe cognitive problems, myoclonus, ataxia, muscle spasms in my neck and shoulders, visual disturbances, headaches, bladder spasms, nueropathies in both hands and feet, fatigue, stabbing pains all over and a sleep disorder. I think that is it ...

It was a very bad year for me. :(

Since my orthostatic hypotension, myoclonus, ataxia, muscle spasms, most of my visual problems (new glasses ???) and fatigue have cleared up just in the last few months, there has to be a connection.

I have had IBS most of my life, but didn't get severe "D", "C" and cramping until 2004.

Marcia

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Put me down on the "mono" train too! I had it when I was seventeen. However, My Celiac's did not rear it's ugly head until the birth of my second child, when I was 28. My theory on the "mono" thing is this...I think doctor's could not explain the illness, so they just said it was mono. I believe it was Celiac's showing itself, and it just wasn't recognized. I did suffer a nasty bang to the head before getting "mono", so I believe in my own case, that I was actually suffering from Celiac's.

Vicki

gluten-free since Sept. 1995

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Not sure. I believe mine started in college--at least that is when I was told I had IBS, started getting a new type of mouth ulcer, and started getting more and more fatigued, more and more joint pain. I guess it could have been mono, but I have been associating either with my father's diagnosis with lymphocitic leukemia or post traumatic stress.

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Sometime in my 30's, I got one of those really nasty, in-bed-for-a-week flus. I was living alone, and when I finally broke out of the feverish delirium, I realized I was really, really hungry. I had no energy whatsoever, so I made the easiest thing I happened to have on hand: speghetti with sauce from a jar. I polished off a bowl and went back to bed. When I woke up again, I had big red splotches all over my neck, and one eyelid was swollen shut.. After a week, I went to a doctor who gave me hydrocortisone to put on the red spots, which helped for a few days. Then they got gruesomely worse. A friend said "Those look like hives. Do you have a food allergy?" Hm. Bought a book on food allergies, did the elimination diet, kept a food journal, discovered that any corn or wheat product brought the hives back.

When I look back, I remember multiple doctor visits in my childhood due to severe constipation. And pretty much every winter since I could remember, I lost about a week or two out of the year to the flu.

I figured it was just food allergies. My sweetie was the one who pointed out that I get pretty nasty digestive symptoms, too, and he thinks I'm celiac. He's probably right. I haven't been tested, but since the wheat allergy is a definite (anaphylactic reaction to my last accident) I don't feel the need to have any tests done. The end result is the same: gluten-free for life. After reading many posts here, I am really worried about Mom: she has many of the common symptoms. I'm also now worried about my MIL, because I realized that she has a lot of symptoms, too! Or maybe I'm just seeing Celiac everywhere. Anyway, I suggested she check out this board, so now I should be careful of what I post! :P

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First I think I was 1 1/2 years old when I had my first trigger- I fell down a flight of stairs, had severe digestive problems so bad that my parents put me on an ellimination diet- stayed off wheat until I was 3 years old. Was not officially diagnosed with Celiac, but back then in the 70's they thought it could "go away" anyway.

Ate normally for 29 years...

Then the the birth of my first child was my second trigger this past summer. 3 months post partum I started having bad cramping all the time- lasted longer then the stomach flu could have and went in to the dr. Had the blood test done for celiac and it came back positive. Now eating gluten free for the past 4 months!

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i was beginning to lose weight noticeably due to minor villus blunting, but a rough patch with the boyfriend sent it over the edge. i was down to 110 (from 125 normally) at my lowest---and i'm six feet tall. thankfully, we're still together, but it's interesting to think that i might not have been diagnosed at this point if it weren't for our temporary issues.

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my trigger (still not totally positive i have celiac-but pretty sure) was really weird but i have heard it can be a trigger. I started eating a healthy diet suddenly(before was eating really unhealthy). I introduced alot of grains into my diet and have been having severe digestive problems ever since. That was 2 years ago

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Guest cassidy

I think my trigger was my own birth. I was sick from day one. It got a bit better from age 10-18 but I have always been sick. Too bad it took 29 years to figure out what it was, but at least I know now.

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Kidney stone, went septic,anemic, 6 pints of blood, intensive care 4 days, hystorectemy(sp) lost 60 pounds in 3 months, 54 years old. Diagnosed about 1 year later, after losing most of my muscle tone and energy. Good Times :P

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Cancer surgery in 2001; followed by episodes of D off and on ;followed by decreasing ferritin;then biopsy and diagnosis in 2003. Can only remember vague GI symptoms as a child, so I believe the cancer or operation was my trigger. Autoimmune thyroiditis followed 2 years later.

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I'm not really sure---looking back I suspect I had celiac most of my life. I generally felt tired after eating . . . not so much that others would necessarily notice, but I sure did.

About . . . oh . . I'd say 4-5 years ago or so, I started to feel *really* tired right after breakfast. I thought it could be something I was eating (especially because I was getting hives as well sometimes), and it crossed my mind that it could be wheat, but I wasn't sure. Anyhow, one morning I started throwing up and then made an appointment with my allergist to be tested. I had a positive skin prick test followed by a positive blood test.

Eliminating wheat made a huge difference. Fast forward a couple of years---*more* allergy problems (recurring hives). Testing helped me to identify some more culprit foods, but my allergist also put me on an elimination diet. I kind of knew that rye and barley were problematic, but the diet is when I noticed that oats were a problem too. I continued to eat them but infrequently.

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Much like Helena, I probably have had this most of my life. Perhaps it was triggered by mono at age 14 (although celiac not diagnosed until 2 months ago at age 51) - I didn't even have any allergy problems until after having mono.

All of my adult life, I knew I had food sensitivity issues, but had a hard time identifying them. Over the years, I became sensitive to more and more foods, which I knew because of the resulting symptoms. I also had increasing fatigue and some other associated things along the way, like hypothyroid, infertility issues, and chronic sinus problems. Yup, it's been fun!

But I think the final straw that led to a debilitating downward spiral was stress at work, starting about 3 years ago. The fun increases! Oh, yes!

I am just thankful to be on a path toward healing now.

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I don't know of a specific trigger. I apparently had a lot of colic as an infant and couldn't drink cow's milk for the first year or so. Most of my life I had what I felt was a "sensitive" digestive system, and I always knew I had trouble with dairy. My mom's celiac disease was definitely triggered, though. For her it started with a vengeance after a hysterectomy. She feels she had always had "reactions" most of her life, but they weren't terrible. But after her hysterectomy, she was in terrible shape and almost died (she got down to 80 lbs) of malabsorption. I think my own symptoms just got progressively worse until about a year ago, when I finally got myself tested and found out what was going on. But no specific trigger that I can identify. I still think my symptoms are worse with dairy than with gluten, although I can see that gluten plays a role.

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