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When Did It Start?


CMCM

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CMCM Rising Star

Just kind of curious here....did all of you always have problems your whole life, or did symptoms start at a later date? I know it can get "triggered" by something....my mom, for example, said there had been some weird incidents at various points in her life, but nothing ongoing. Than at around age 42 or so she had a hysterectomy, which would be a traumatic event, and the celiac disease kicked in full force right after that. I think it took around 8 years to get diagnosed, though. I'm just wondering about the rest of you....was it sudden or did it develop and increase over time?


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RiceGuy Collaborator

Looking back, it seems I always had some sort of health problems, which I can now see were probably gluten related. However, I also know that things were getting worse over time. That was probably the damage taking its toll and so forth.

There were various things along the way which I believe contributed, worsening the whole thing. Though the symptoms might not show up for some time, it's well established that gluten intolerance is something you are born with.

Rachel--24 Collaborator

I was very healthy all my life. During a stressful time is when my symptoms came on and for 3 years I suffered. I went from completely healthy (I think I thought I was invinceable :rolleyes: ) to thinking for sure I would die.

nettiebeads Apprentice

I had a cast iron stomach throughout high school. No real problems until I was 35. First an ulcer caused by misuse of NSAIDS. Then the next year I had (all at the same time) a very severe sinus infection being treated with strong antibotics, worked full time, school in a different county at night two times a week, very very disfunctional home life. The D started while I was on the antibotic, thought it was related to that. So six weeks after I used up the meds, still had the D, only it was worse and really different from regular D. (those with celiac disease probably know what I mean) and went to the dr, got put on the gluten-free diet, and voila! celiac disease!!

Annette

jerseyangel Proficient

I have been sick for about 20 years or so. Up until about 2 years ago, my main symptoms were nausea, dizziness and mild anemia. I became consistantly sick with persistant D, depression, anxiety, tingling, numbness and skin problems in mid 2004. I think that my C-section in 1984 may have initally triggered it--I can't remember ever having stomach problems before that. In March of 2004, I had an in-patient surgery (with general anesthesia) and following that, the celiac disease kicked in big time. My Dr. told me that surgery, childbirth, breastfeeding, or a traumatic event can all trigger celiac disease. Looking back, it makes sense. Who really knows? :(

jenvan Collaborator

Off and on issues as a child, but especially from junior high on. I've always had health "issues" :)

Guest DanceswithWolves

I'd have to say my relocation to another state and taking on a new job with someone I thought I trusted. Sure, it was a wake-up call...but I haven't been the same since. I wasn't eating correctly every day.


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KaitiUSA Enthusiast

Was healthy as a kid and then when I got mono I never fully recovered because that triggered the celiac. I was 14 when I started getting sick and 16 when I was finally diagnosed.

darkangel Rookie

I can remember having "stomach aches" and constipation as a child. I complained enough they did an upper and lower GI when I was around 12 or 13. Found nothing. Had problems off and on thru high school. In college, I was diagnosed with IBS and TMJ. Got a bad case of mono my junior year and had to drop out for a semester. Struggled with IBS off and on 'til I was "upgraded" with a dx of ulcerative colits in my mid 20s.

Recently had blood tests done for celiac disease and everything came back normal. Still looking for answers.

Carriefaith Enthusiast

I started having "issues" in juinior high, but I didn't start getting extremely sick until I was 22. I think it was the stress from writing my ungergraduate thesis and trying to do well in all my courses that really set it off. That was a very stressful time in my life.

Rusla Enthusiast

All my life I have had health issues, kidney etc. When I was 20 I got asthma, allergies etc. The last 6 years were the years of my anemia, and other weird things along with skin things which is probably DH. My burning stomach started 6 years ago and so did a great deal of my teeth, hair and stomach problems. So this could have been an underlying thing my whole life.

traveljunkie Rookie

I can totally relate to the antibiotic trigger. Not only did it spiral my health, it also affected my son. After a very strong dose of antibiotics for bronchitis we both could not eat anything without major diarrhea. We went on the Brat diet and that includes toast...big mistake. For 4 months we couldn't go anywhere or eat anything. We both lost weight. I could afford that but he couldn't..he's skinny as it is. So after much research, we found gluten intolerance and within days we began to heal. We are also vegetarians and alot of the the faux meat are packed with gluten. I would get itchy and have burning diarrhea after eating it. Bingo!!

We have been gluten free since and very healthy!

Another trigger I recently heard about was my husbands client asked for two ovens to be put in their kitchen. My hubby questioned this and was told her husband has celiac brought on by running a 10 k race. He had D and lost 30 lbs in a month. She had mentiomed celiac to the dr but he laughed and told her to stay off the internet. They found another doc and did a biopsy... sure enough his villa were flat!!

Looking back at both my health and my sons, I can see we've always had a intolerance to wheat products. Thank god I mainly cooked rice and stirfrys! I probably saved us from worst damage!

Katydid Apprentice

<_< My husband had symptoms off and on for about 15 years before he was diagnosed, but they were sporadic and would come and go. Then about 5 years before he was diagnosed, they started coming more frequently. Every 4-6 weeks, then 3 weeks.

He was alone with my mother at our home when she died (unexpectedly). They were very fond of each other and exceptionally close for in-laws. His symptoms became severe and constant from that day on. We have always assumed that was his trigger.

Kay

Just kind of curious here....did all of you always have problems your whole life, or did symptoms start at a later date?  I know it can get "triggered" by something....my mom, for example, said there had been some weird incidents at various points in her life, but nothing ongoing.  Than at around age 42 or so she had a hysterectomy, which would be a traumatic event, and the celiac disease kicked in full force right after that. I think it took around 8 years to get diagnosed, though.  I'm just wondering about the rest of you....was it sudden or did it develop and increase over time?

<{POST_SNAPBACK}>

danikali Enthusiast

I've had things all of my life, but they would come and go. When I was born, I was hospitalized because I couldn't take any kind of milk (mom's, formula, soy) but then had to have rice milk. At age 6, I had night tremors/panic attacks for about a year; they never found anything and it all went away. High school, I was "diagnosed with IBS and irritable bladder" and then college hit, I got mono, "IBS" got worse after that, then a stressful year (moving to another state, new job, new school, new relationship, family issues, surgery) and then IT ALL STARTED GOING DOWN HILL. Bladder problems got worse, bowel problems got worse, got "gastroenteritis" on vacation and then EVEN WORSE! Muscle problems, joints, migranes, irritability, depression, more panic attacks, etc. etc. etc. :blink:

So, I would say, I was def. born with this, and there were signs my whole life that I was doing "something" wrong (eating bad foods for me)........but being sick everyday was my body saying, :o "okay, change this "something" NOW!"

:)

-Danielle

mightymorg Rookie

That's an interesting question. I know I was always constipated growing up, but I didn't know that wasn't good...I thought it was normal. I remember always having a tummy ache. Plus, I could eat a gazillion calories a day up through high school and still be bony without doing much.

I didn't start having the rest of my sypmtoms (and the others getting much worse) until after I met my fiance...odd, though, because I'm honestly the happiest I've ever been. However, I did have anorexiastarting about 2 years ago, and I think that did a number on my GI system and helped instigate this ordeal.

NYCisTHEplaceTObe Rookie

i was diagnosed with epilepsy when i was six and had on and off stomach issues. however when i was 12 i got mono and then i never really fully recovered from it. i really think that that is what triggered all the symptoms for the last 8 years. at one point my doctor told me i probably had chronic fatigue syndrome as an after effect of the mono, but i don't think that was quite it. he just didn't know what else to say lol

CMCM Rising Star

Guess I'll add my own story....First 6 months of my life I had terrible colic, my as yet undiagnosed celiac mom couldn't even breast feed me, cow's milk didn't work, parents finally gave me goat's milk. I guess later I could handle cow's milk, but my whole life I've kind of instinctively avoided milk....didn't want to drink it, wasn't much into ice cream, etc. My mom couldn't remember much of note until I was about 6, when I got real sick and then oddly, had some long episodes of burping endlessly. Strange... Anyway, I didn't think a great deal about these things, but I sort of think I had a "sensitive" stomach my whole life and all thru my 20's. In my 30's I was hit with migraines, and started noticing a lot of upset stomach episodes, stuff related to that, and at some point I thought maybe I was lactose intolerant. I never thought I could be celiac because I didn't get violently ill like my mom, and I didn't get underweight like she did. However, most of my life I've been a good, slim weight (never skinny, though).

All my digestive woes got worse and worse, and then I sometimes had what I guess is heartburn type episodes, and I could never figure out what triggered it. Also a chronic cough which could get very out of hand. Also asthma like symptoms, and it was so bad at one point I got tests for asthma, and they said I didn't have it. Go figure. Still not thinking wheat yet, though. At 49 I had to get a D&C for uncontrolled bleeding, which had gotten so bad I had a terribly low iron count and was white as a ghost and so weak I could hardly walk. I almost had to get a transfusion, but escaped that by a couple of weeks rest and heavy iron supplements. Looking back on this episode and thinking of how things can suddenly trigger celiac disease in a big way, I do believe everything just got more acute after this. About 1.5 years ago the migraines strangely just went away, but the digestive stuff got worse. There was a point where I thought there was virtually NOTHING I could eat that would agree with me. This was about the point where I did the Atkins diet (by now, I'd also put on about 20 lbs. which I simply could not lose, even though I didn't eat all that much). After just a few days on Atkins I felt really really good, which surprised me. I had to eat more meat on this diet than I ever did (I'm not a huge meat eater), I ate a small bit of cheese, which strangely, didn't bother me at all. I had one salad a day, but of course no sugar, no dairy, and no WHEAT. And I easily lost all the weight I needed to. Going off Atkins, the 20 lbs came right back, so did the bloating and other problems. I guess it's all pretty obvious, even though I haven't done the official tests yet. I'm resisting the obvious conclusion, I guess. But there you have it. Probably not even a need for the tests...

nettiebeads Apprentice

Yep, there you have it. You gave yourself a test, although you didn't know it. It's called the diet challenge - no wheat, no problems. Gluten, problems. You could stay on gluten and get tested, or decide today to go gluten-free and feel better! Although if you could get a dr. to do a biopsy it would be interesting to know how much damage has been done to your intestines, or if it is indeed celiac disease or gluten intolerance, but either way, the "cure" is the same - NO GLUTEN!!

Seriously, do consider the gluten-free diet, who knows how much harm you have done and are doing to your body. Your body seems to agree with the gluten-free diet, so I think you know which direction you should go next.

ianm Apprentice

i had symptoms off and on all my life but in my 30's they became unbearable.

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      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
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