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Guest ~jules~

"the Trigger"

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Add another one to the Mono list!

Now that I look back I've had symptoms for as long as I can remember, but after mono at 16 I never felt the same again. When I complained of this I was told that things change when you get older, and you never feel like a youngster again. Too bad it took another 20 years to figure out that I had Celiac and that they were wrong. After 6 months of gluten-free I feel like a kid again!!

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I had symptoms all my life. Stomach aches. Especially after a big holiday meal. Which for an Italian you can imagine was filled with home made pastas and breads and such. My parents at the time thought I was just anti social when I had to go lay down after such meals.

Then in May of 2005, I had my son. He was an emergency c-section. After I healed from that. It still took 5 months for the symptoms to get sooo bad I couldnt stand it anymore.

It seems like a lot of people either had mono or difficult pregnancies. I know a few of you just knew all along, since you were children. It just amazes me still that my situation isnt much different than others. I had no idea at the time. I thought I was some kind of freak. I am glad I found this board and found others who had the same "freakiness" that I had! :P


Stephanie

Gluten free since October 05

son born severly premature due to

celiac

"True love stories never end" Richard Bach

"Did you ever stop thinking and forget to start again?" AA Milne

If you live to be a hundred, I want to live to be a hundred minus one day so I never have to live without you" AA Milne

Swimming Instructor #2 and Town Crier of Rachelville

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Guest ~jules~

Ya, I'd have to agree with kari that stress can deffinetly do it, I'm posative that was my trigger....

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well i had to pee ALOT and sometimes it really burned so it was sort of like having a uti alot but no infection. they thought maybe it was intersticial cystitis but then just said it was "hypersensitive bladder". they did a cystoscopy which showed i was fine but while they were in there they stretched the bladder. after it was very painful and the burnign was worse for weeks but not its been much better.

Really lovely experience! I've had it done twice. OUCH. :o


Negative biopsy for celiac 1980

Fibromyalgia 1980

IBS 1980

Interstitial Cystitis 1992

Systemic yeast

Diagnosed w/ Chronic Lyme Disease 2000

Diagnosed w/ Chronic babesia 2000

Tachycardia 2001

Asthma 2005

Have had Lyme and babesia for

about 48 yrs.

Began gluten-free July 19 '06

Native TEXAN living in Missouri

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My trigger was an "acute infectious process of unknown etiology" following a trip to Asia in which I came back with high fever, was given antibiotics for one week, felt better for the week following, and subseuqently developed a plethora of intense symptoms (all the ones that one could possibly have). I also developed orthostatic hypotension (which, for me, was quite possibly the worst symptom of them all) for 3 months straight, with continuous testing and no answers. I had no real symptoms prior to this trigger

The last doctor I was given a consult for was GI, who took FIVE days to diagnose me, while he consulted with all the doctors in the hospital while I was hooked up for 7 days to an IV and could not walk anymore. (It was torture. I had to use a bedpan and all because my legs would no longer support me). If he did not diagnose me, the next speciality was psych. After that, I prob would have died at the rate I was going. It was awful .


Diagnosed 11-11-05 after 3 months of major symptoms, including 2 hospitalizations and 7 ER visits for dehydration and syncope. Otherwise, I had all "normal" blood tests and major scans. During those 3 months, lost 20 pounds, all my muscle tone, and ultimately could not walk for 2 days. Spent 6 days during the second hospitalization hooked up to IV and STILL passing out IN BED due to malnutrition with doctors staring at me AS IF it was all IN MY HEAD

Other related symptoms:

Osteopenia

Hypothyroidism

Gluten Ataxia - three "nodes" recently found in my brain (thought I had MS)

Muscle weakness

Fatigue

Chronic Constipation

45 pound weight gain since going gluten-free!

gluten-free since 11-11-05. Cannot eat bananas, potatoes, or spinach. Recently reintroduced yogurt into my diet and able to tolerate plain yogurt with sugar.

HATE the diet but psychologically tolerating it for my health.

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I'm with the mono group! Had it when I was 15 and started noticing symptoms at around the same time, but then I had a couple surgeries (and a party lifestyle) in college and things got a LOT worse after that. Someone mentioned having bladder problems earlier, and I don't think this has anything to do with my trigger (since I was 4 and 5 when it happened), but I also had three surgeries to have my bladder stretched :blink:

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Guest Mtndog

I had a "sensitive stomach" my whole life but mine came on full-force after my mom died in April 2003. I went from sudden lactose intolerance in June 2003 to losing over 80 pounds by the following spring (I needed to lose about 60 but it didn't stop there and i wasn't trying at all .

The big wake-up call was when I had "stomach flu" two times in the same week. I also had mono when I was younger .

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I really have no clue here, but I figured what the heck its worth a shot....Does anyone know if bladder problems have anything to do with celiac? I've noticed alot of you have been sick since childhood, the only thing I remember is always being very thin, constant bladder infections since childhood, and depression. Hmmm I wonder, I tend to think too much, :P can ya tell....

Yes, I had bladder problems that were related to my Celiac and osteoporosis! And thinness too, and depression a tiny bit.

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Guest AutumnE

Well its a varied question for me. I developed auto immune disorders all throughout my life but after the birth of my dd I developed really bad sciatica, diarrhea and loads of weight gain. I had urinary tract infections when I was little but I don't think its related since it was fine when my celiac disease was at it's worst.When I had a cath/scope done they said I had an extremely large bladder (holds close to 1000cc's) because as a child I would never use a public toilet and it stretched it out.

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My neurologist blames a really BAD endocrinologist that I changed to (insurance) who took me off the synthroid, and I developed full-blown Hashimoto's. He thinks that the gluten intolerance was a "watershed" effect of autoimmune diseases that I developed. Another doctor thinks that it was Coxsackie (sp?) virus that I caught from one of the kids I was treating . . . you normally don't get it as an adult, and I got REALLY sick --- pneumonia in both lungs upper & lower lobes, infection in both ears, maxillary and frontal sinuses on both sides, lymph nodes throughout . . . . but kept working long hours, not stopping . . . . that MD said that my body couldn't take the huge amount of illness I had plus the extreme hours I was working and decided to fight back!

Oooooooh, AutumnE -- 1,000 cc -- that's HUGE. That really is stretched out . . . . try to "re-train" your bladder by going every three hours -- after having kids, you can develop some real problems . . . . PM me if you want . . . . I am a PT who treated women's health and pediatrics (talk about a weird combo . . . ), but I can give you some pointers with regard to that . . . . .


Lynne

Courage does not always roar. Sometimes it is the quiet voice at the end of the day that says, "I'll try tomorrow".

"There's not a word yet, for old friends we've just met. Part Heaven, part space, or have I found my place? You can just visit, but I plan to stay, I'm going to go back there some day." Gonzo, in the Muppet Movie

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I've had alopecia areata since I was 14 (I'm 37 now) but otherwise had no symptoms, and an iron stomach, until I was 32. I had just gotten married, moved, started a new, stressful job, when my insurance changed my birth control pill prescription from brand name to a generic. My symptoms started the day I took that first pill. I switched back as soon as I could, but the combo of stress and whatever was in that pill must have done it.

My symptoms were extreme bloating, water retention, high blood pressure, severe abdominal cramping. My doctor at the time diagnosed sodium sensitivity and put me on an extremely sodium restricted diet (<500 mg per day) plus strong diuretics to keep the blood pressure in check. It didn't work very well. After 4 years of no results and seeing multiple doctors, I did an elimination diet and discovered I was gluten sensitive. After 1 month of gluten free, I'm off diuretics, the bloating is diminished, less water retention, my blood pressure is disgustingly low, and I can't remember the last time I felt this good.

I had to argue with my GP for a celiac blood test, it came back negative. I'm allergic to surgery :rolleyes: so I won't do the endoscopy. I'm waiting on Enterolab results, but I don't really care what it says, I'm not going back to gluten.

One more bladder anecdote: as a teen I had frequent UTI's. I started avoiding oranges and grapefruit (I definitely get more UTI's if I eat a lot of citrus) and take cranberry tablets. Haven't had a UTI in years.

~Li


~Li

Celiac, dx Sep 2006

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I started having intestinal symtoms a year or two after having my son. I had some other symptoms for much longer though (such as dark under-eye circles and tonsillitis that wouldn't go away). I didn't think of gluten intolerance until my mom suggested it after I had intestinal problems for 6 months.

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Went back to college and got Mono. I didn't realize it until I was in the hospital with horrible abdominable pains and hadn't eaten in two days (except for some crackers and piece of bagel "to keep up my strength" :wacko:).

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I've had tummy troubles my entire life. They eased up during my teen/early 20 years. I had small "episodes" of digestive issues with my 1st and 2nd pregnancies....and the third was just fine. However, my labor and delivery with him was SO crazy insane fast.... !

It was immediately after my 3rd was born that I started having more and more issues.

I believe childbirth was the trigger that caused me to come "out" of remission. (If there is such a thing as remission)


Jayhawkmom -

Mom of three....

Jay - 11

Bean - 8

Ian - 3

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Guest AutumnE

Thanks Lynne :)

It is huge! When I go I REALLY go :) I do try and go every couple of hours but I havent noticed much of a difference. I had a csection so thankfully no bladder problems here so far :)

When I had my first ultrasound with my daughter I had to pee three times and lean all the way over to try and empty it. I was only seven weeks but they couldnt see her hardly at all because my stupid bladder was in the way. I had to literally push as hard as I could down there on my skin to see her and measure her :lol:

I'll pm you :)

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The stress from the death of my sister's first baby was my full blown trigger. That baby would have been 25 this last March. I think my 2nd pregnancy was the beginning and that son will be 30 in December. Deb


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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Am I the ONLY one who can't pinpoint ONE trigger? I was fine... no symptoms whatsoever... till one day I started having diarrhea... no other symptoms. No pain, bloating... nothing.

It just came!


luvs2eat

Living in the beautiful Ozark mountains in Arkansas

positive blood tests and later, positive biopsy

diagnosed 8/5/02, gluten-free (after lots of mistakes!) since that day

Dairy free since July 2010 and NOT happy about it!!

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Am I the ONLY one who can't pinpoint ONE trigger? I was fine... no symptoms whatsoever... till one day I started having diarrhea... no other symptoms. No pain, bloating... nothing.

It just came!

I'm surprised that so many can pinpoint a trigger!

Viruses dont' neccesarily produce noticable symptoms and stress -- well, who doesn't suffer from stress.

Admittedly, several people here have had some pretty awful stress triggers.

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I can relate to many of your stories.

Like many of you, I've always had a "sensitive" stomach. Had CAT scans as a very young child (4 yrs), as I always complained of tummy aches. Doctors said I was just a high-strung, nervous child, with a nervous stomach.

I had mono when I was 11. My mom thinks that was the trigger.

If you ask me, this may sound strange, but I think what triggered Celiac in my body was when I went on the birth control pill to regulate my period when I was... I think 20? That's when I really noticed lots of stomach issues. About a year or so later, I had an attack of pancreatitis, and was diagnosed with Celiac via biopsy a couple of months later. Doctors believe the pancreatitis was a result of my untreated Celiac.

Who knows how/when it started, I'm just glad I know what's going on now!

- Lauren

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Eating disorders for me. I had worsening forms of disordered eating from ages 13-18. When I went away to college, I finally had the freedom to become full-blown anorexic. I had to leave college, and when I started eating again, I had horrible digestive distress. That was about ten years ago. Everyone said my system just had to adjust to food again, but now I realize it never really got back to normal after that, until I gave up gluten about a year ago.


_____________________

w.g.i.b.s.

High IGG, normal IGA and TTG.

Very positive dietary response.

Gluten-free since 12/26/05.

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Hi all,

I'm definitely sure my trigger was a bacterial infection I got while visiting Puerto Rico in February 2006. Little did I know I had the infection until months later (May 2006). My regular GP thought it was my acid reflux. It wasn't until they did the endoscope and they found, a severely irritated esophagus, a bacterial infection in the stomach and scalloping in my small intestine (my new friend known as the gluten allergy). Walking around with the bacterial infection for 3-4 months untreated must have definitely been my trigger.

Of course, they ran a biopsy on the small intestine and did all the blood tests. Everything confirmed my celiac disease.

The weird thing is, I can eat gluten products (although I don't) and won't feel the effects. Although during that process, if I do eat gluten products I am just attacking my small intestine and would just be waiting for doomsday to occur. So I guess I am glad they caught it when they did. Although, I am still getting adjusted to the new lifestyle. These boards have definitely help tremendously!

Thanks guys ;)

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This was a great idea to see such a variety of triggers.

Has anyone's symptoms ever cycled. My husbands did. He would only get sick about every 4 to 6 weeks, regardless of what he ate. His symptoms never became constant until after his trigger

His trigger was being alone with my mother when she passed away. They were very close; and after that, he was sick every single day until he was finally diagnosed with celiac and went gluten free. By that time he was down to 125 pounds and could not have climbed a stair without handrails. (Now he is so energetic that I have to chug vitamins just to keep up with him...but I love it)

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I'm part of the mono party!

I had mono when I was both 5 and 6, and I started having problems not long after that.


Danielle

Diagnosed with Celiac 1/3/06 at age 20

Also dairy free and soy light

Guardian to 3 boys, ages 4, 3, and 2 who are gluten-free, df, corn free, and soy light

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For me I think it was a divorce, moving across the country and starting a new job all at the same time. I started having digestive symtoms about that time, although I had already been diagnosed with another autoimmune disease 6 years prior to all that.

S

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Guest nini

I did a food demo/lecture last night on gluten intolerance/celiac and why you need to be gluten-free, and the Chiropractor/dietician that did the main part of the lectue with me (it's his baby, I was just helping) believes that overuse of antacids and blockers like Prilosec actually trigger Celiac because they suppress digestive enzyme production among other things. Personally I think that if someone was taking antacids and pills like Prilosec, they already have Celiac, and those pills just make it worse.

Breezy has Lyme on the brain! :lol: (I'm just teasing ya) good advice to also be tested for Lyme, you are right, a lot of Celiacs do also have Lyme.

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