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Guest ~jules~

"the Trigger"

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Guest nini
Did you get tested for Lyme by Western Blot? And your daughter? I'm serious, ya know? I thought Lyme was the LAST thing I had. I waxed and waned for several years, but there's a point with chronic Lyme when everything explodes all at once, and it's best to catch it before that happens. Again, like you, I didn't remember any bull's eye tick bites that coincided with my symptoms. There's evidence that fleas can spread Lyme, too, and that there's an epidemic. You might want to consider that as a trigger...so many on the Lyme forum also have Celiac's, that it's hard to look past that.

yes I was tested for Lyme... it was actually one of the first things they tested for. But thank you for your concern. And my daughter was ill from birth so I doubt seriously Lyme was a trigger for her.

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I never remember having any stomach problems until I entered high school--I started to feel sick all the time not to mention I had the most evil Honor's History teacher on the planet who I was terrified of. I would always be so nervous before that class and obviously felt sick because of it. But then I starting feeling sick all the time. My father was convinced it was all in my head, but my mother was not. My parents took me to Mass General in Boston and after seeing a child gastro guy I went in for an endoscopy. They found the bacteria H. pylori in my stomach and I had to take these disgusting horse size pills for a few weeks that left a metallic taste in my mouth. The gasto doctor also thought I was lactose intolerent, so I avoided dairy. But celiac disease was never brought up.

So five years after all this and a positive blood test later I am pretty sure I have celiac disease and have been gluten free for about 5 years. So I guess my "trigger" was the hpylori. Though sometimes I am skeptical that I have it at all-since I still feel sick a bunch, never got really really thin until my diet was restricted so much in college due to the lack of gluten free foods. I had a negative biopsy but because I had been gluten free for 4 years and my intestines were already healed! I am kind of at a standstill right now in terms of progress as my lack of health insurance makes it unable for me to see a doctor.

But anyone else had any problems with H. pylori?

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Am I the ONLY one who can't pinpoint ONE trigger?

It's hard for me to put the blame on any one thing, because I don't REALLY know when my celiac began. If you will notice my signature, I've had problems for many years.

But what's strange is that inbetween those years, I was doing pretty good. [well, sorta...as far as digestive issues I was "OK" ] I DID avoid wheat since 1975, but began cheating around 1990 again. I've had all kinds of problems since then, but digestive issues didn't appear to be the main problem.

That's interesting about birth control pills. I took them from 1973 to 1990.

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What if your body was just trying to do what it was supposed to do and it just appeared to doctors to be an autoimmune reaction? Please take a look at my links. Many people on the Lyme forum were misdiagnosed with autoimmune disease instead of Lyme.

Does your husband spend a lot of time outdoors in the yard? Do you have pets? Please take a look at the Lyme links and check out the Lyme forum as well. It could be dormant right now and could flare in the future.

Have you heard of any cases where Hashimoto's thyroiditis was actually misdiagnosed Lyme disease? My thyroid antibodies are very high and my TSH was too high when I was diagnosed.

S

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Have you heard of any cases where Hashimoto's thyroiditis was actually misdiagnosed Lyme disease? My thyroid antibodies are very high and my TSH was too high when I was diagnosed.

S

Not necessarily "misdiagnosed" but Hashimotos is fairly common in Lyme patients....actually any kind of thyroid disorder is .

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I was always the skinny kid, always preferred rice over wheat, had chronic sinusitus until a couple of years ago and not a whole lot of digestive distress, but hay fever since I was 16 and allergies just going over the top until now and they still do. My trigger was working in a very large, old library on the third floor for 14 years, just below the roof where all the bats flew in and lived and died. To this day, I still love bats, just not the putrefying ones and I cannot go into that library without being sick for some six weeks afterwards.

I don't. :rolleyes:

Thanks to whomever posted the link to dogtorj.net! I got a lot of wisdom from that site and liked it right away after reading that it was a veterinarian's website. I think the vets have more insight than most of the human doctors, jmho.

Margaret

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Guest ~jules~

Wow, mono seems to be an obvious trigger in alot of people here, very interesting....It seems that physical and emotional stressors contribute to celiac surfacing. I wonder is it more common to find out when wheat is introduced as an infant, or is it more common to have it surface as an adult? It seems to me, that its more common in adulthood.

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Wow, mono seems to be an obvious trigger in alot of people here, very interesting....It seems that physical and emotional stressors contribute to celiac surfacing. I wonder is it more common to find out when wheat is introduced as an infant, or is it more common to have it surface as an adult? It seems to me, that its more common in adulthood.

Interesting question. I looked around a little and what I found seems to bear you out.

Here's one:http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1490146

"Until recently, the typical presentation of celiac disease was thought to be a severe malabsorption disorder of childhood.1–3 It is now increasingly recognized that symptoms of celiac disease may appear at any age, and several surveys have identified the peak age of onset of symptoms in the fifth or sixth decades of life.4–7"

"Several surveys of patients with celiac disease in the United States document that the majority of patients first present with symptoms as adults."

Although one thought that it might just be because it's not tested for in children as much as it should be: http://jaapa.com/issues/j20051001/articles/celiac1005.htm

"In the United States, celiac disease is most often diagnosed in adults, which is probably a result of the lack of a specific screening protocol in children and the limited knowledge of celiac disease and underestimation of its prevalence among clinicians.6"

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I guess my "trigger" was my own birth! :) It showed up in the normal range of when you start feeding a baby/toddler more and more whole foods. I got sicker and sicker. So, I guess I've always had it... no trigger necessary. I guess I'm lucky...some of your triggers sound worse than actually Having Celiac!

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Guest ~jules~

Well yes I think I would rather of "known all along" than gone through what I did. Good realization.... :blink:

As far as celiac developing in the 3rd, 4th and so on decades of life, I really do wish that it was something that we screen our children for automatically, but really how far off is that? In our lifetime, hmmm I doubt it. I guess I can only say that those of us who have celiac, along with a member, or members of the family have a responsability to screen our children to prevent them from any suffering as well. I don't know if I will ever stop bothering my parents and siblings to get tested. Eventually they will probably go just to shut me up. :lol:

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Guest ~jules~
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.

Thats also very interesting, considering I have had acid reflux for oh, about 3 years. I've been on prevacid for 2 years, and I was one tums and rolaid popper! I was sick with this for 1.5-2 years before my dx....That's an interesting study...

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I'm not sure what my trigger was. I've always been kinda sickly. Got horrible heartburn and stomach pains etc when I was 15-16. I saw a gi back then. He did an upper-gi thing. I was "fine". I got sicker and sicker almost by the day! I thought I was gonna die. I couldn't get out of bed. Cut to 6 years later, my bloodtest results were "borderline". My doc (who only tested me at my demand) said that my quitting gluten nearly a week b4 my test didn't matter. I don't know. It doesn't matter to me anyway, I feel incredible since going gluten free. And my husband's stomach pains (that he's had since childhood) are gone too! But trigger? Probably stress. I haven't been tested 4 lyme but I've been told that tic's don't live in oregon. I've never seen one anyway (lived here my whole life). But I could research it more.

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Add me to the Mono list. I had it at seventeen and digestive issues were more apparent after that when it came to gluten. What is mono and doesn't it seem strange that so many of us caught a disease and we are identifying it as the trigger, what if it is the cause?

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Add me to the Mono list. I had it at seventeen and digestive issues were more apparent after that when it came to gluten. What is mono and doesn't it seem strange that so many of us caught a disease and we are identifying it as the trigger, what if it is the cause?

I hope this answers your question (from): http://www.mayoclinic.com/health/mononucleosis/DS00352

"Infectious mononucleosis (mono), or glandular fever, is often called the kissing disease. The label is only partly true. The virus that causes this disease is transmitted through saliva, so kissing can spread the virus, but so can coughing, sneezing, or sharing a glass or food utensil. Mononucleosis isn't as contagious as some other infections, such as the common cold."

"The cause of mononucleosis is the Epstein-Barr virus, although similar signs and symptoms are sometimes caused by cytomegalovirus (CMV). Full-blown mononucleosis is most common in adolescents and young adults."

When I was looking for information on Celiac initially, I found alot of medical sites that recognized mono and stress as being triggers. They didn't explain how they triggered it though, which was kinda disappointing.

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I haven't been tested 4 lyme but I've been told that tic's don't live in oregon. I've never seen one anyway (lived here my whole life). But I could research it more.

Lyme disease is found in all 50 states. Ever traveled outside of Oregon? The incidence is higher in some states more than others, but pets travel all over the US and could carry the disease anywhere.

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Not necessarily "misdiagnosed" but Hashimotos is fairly common in Lyme patients....actually any kind of thyroid disorder is .

I can't hurt to rule out Lyme. I've been tested, but that was a long time ago. I did live in Connecticut for 8 years, yeah, the home of Lyme disease! But, I'm pretty sure my illnesses started before the move.

S

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Well, looking back I had problems early on. I had diarrhea so bad when I was 3 that I had to be hospitalized for dehydration. Then I had some kind of allergy issue (my mom doesn't remember the specifics) but I was taken off milk for several months and had to sleep with a down pillow.

Throughout my early teens, I didn't have gastric symptoms but I did have asthma and chronic sinus infections. Weird for a teen to have sinus infections every winter, eh? No one else seemed to think it was odd.

Well, that sort of went away and we fast forward to mid 20s. I don't really remember when the diarrhea started, I have just always been prone to it. It would come and go, but never really seem to be related to anything. The back pain started around this time as well.

Fast forward to age 30 and my pg with my 3rd child. Yes, this PREGNANCY did me in! It was a difficult pregnancy, and for the first time in my life I was introduced to heartburn! After he was born I was sick for MONTHS with sinus infections, bronchitis, and ear infections. The sinus infections had started to reappear a year or two before this, but for three months after my baby was born I went from infection to infection to infection....

Then the migraines came. Never had a migraine before age 31, how strange is that? Around this time I experienced a lot of stress. I was between jobs working for peanuts as an intern and DH cut back to part time to go back to school so we were broke, and within 3 months my two younger children were diagnosed with neurological conditions (the oldest had been diagnosed a couple of years earlier with Asperger's).

The heartburn became a daily thing and I started taking prevacid. I started having panic attacks and chronic anxiety, and now I'm on meds for that. The diarrhea sort of crept up on me, and eventually this spring it got to the point where I had diarrhea every day. Endo was fine, blood tests were fine...then I got arthritis.

That was the final straw for me! I finally went gluten free. I didn't care what the doctors said, SOMEthing was going on with my digestive system.

So there you have it...pregnancy + stress was my trigger!

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Interesting stories and yes, it does sound like Mono is evil! Have never had it....dont' quite now what triggered mine. Have been depressed quite literally all my life, I remember being SO sad as a very little girl and crying all the time. Became suicidal in junior high. Always very skinny and VERY low blood pressure....but worked out religiously and climbed, hiked, skiied, everything for all of my life until about four years ago. Periods of very heavy drinking.....lots of good times in between the depressions! Always have had brain fog and confused thinking and logisitical processing disorders.

First and only surgery in 2001 (appendectomy), then a year later, a HIDEOUS case of systemic/edemic poison oak (103 fever and the infection settled in my elbow - I should try and post that pic here! :o ), then a horrid case of clostridium difficile from all the steroids and antibiotics to treat poison oak- lost 20 pounds in two weeks and felt on the brink of death. I think I've had diarrhea since then (2002) and just thought it was nerves.....

moved back to Fresno in 2004.....worked frantically restoring an older home that may have been haunted, had a freakish nervous breakdown of some sort, couldn't keep food in and had to move to my parents' for three months. Crazy.

But I remember asking my mom one day, during the breakdown....."do you ever just have streams of brown mucus coming out of your butt?" :huh: (sorry, I know that's gross but I'd had it for about three years and thought nothing of it!)

Ravenwoodglass....I can't believe YOUR story and all you've been through.....wow.

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I have read that celiac can pop up after some sort of life trigger. This makes alot of sense to me, considering the stress I was going through when all this started. We had just bought our first house, I had just returned back to work full time for the first time in 4 years, I was going through a 2 year court battle with my ex, and having my own marital problems. Thank god it was only celiac, and I'm not in a nut-house. All that was going on at the same time, and thats when I started getting sick and drastically dropping pounds. I'm just finding all these little puzzle pieces that are all starting to fit into place lately, did anyone else have these realizations after being diagnosed?

Mine seemed to suddenly become much worse after we bought a home bread maker. My symptoms which I had lived with for years became ten times worse and I deteriorated from then on.

It had only become obvious what was wrong with me since I gave up all gluten products as the Dr advised as a trial.

I am very much still finding my way through this and one of the things that really makes me angry is that no-one even the skin specialist realised my lumps on my arms and back were a direct result of being celiac.

Looking back I was warned by a homepathic Dr 18 years ago that I was intolerant to wheat, but after the moth's diet on stone age food my symptoms disappeared and gradually I slipped back into eating most food.

Now I suppose I am stuck with this for life..

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I got sick right after spending a semester in France where I ate all the bread, esspreso, refined sweets and goodies you could imagine. I got a really bad flu and took an overthe counter french medecine called "DOLI-RHUME" which I checked later contains gluten!!!!!

Anyway following my return from France I was sick for 6 months until I started an elimination diet (which at first consisted of only pretzels and bread and then i got informed :P ) Thankfully I have almost immediate reactions to gluten and can tell sometimes within 15 minutes that I've had it. It was clear the problem was gluten and I stopped listening to my GI doctor and started informing myself.

Finally after almost a year gluten free I had a positive result from Enterolabs and now my father is diagnosed as well. He has neuropathy, lymphatic leukemia. Celiac disease seems to be the missing link, in my opinion.

I had DH for years without knowing it was anything but exzema! I was addicted to hydrocortisone. The DH literally evaporated when I went gluten-free and I then I learned that that was just another one of the many symptoms of this great disease.

I did have bladder problems for years in my teens and suspect it may be related. I was diagnosed iterstial cystitis which is like celiac in that there is no cure (except for vague drugs which I"m not interested in taking) and the only effective treatment I found was avoiding "trigger foods". This was I guess the beginning of my special sensitive body skills.....But interstial cystitis I have discovered is also classified as an autoimmune disorder and is a result of the cells in the lining of the bladder becoming irritated for unknown reasons.

So anyway I'm only 25 and feel fortunate that I caught this disease early. Its been four years gluten-free and many things are getting better but its not overnight recovery! I certainly think that its triggered by something in your life: when your immunity is low or overloaded. But then again I have always had a very weak immune system... Or maybe there is a plateau one reaches where the effects are incapaciting and you can't continue status quo?

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How strange.

I always had symptoms - acid reflux, white tongue, abdominal cramping...but when I got Mono 2 years ago I became so immune suppressed because of the celiac that my body wasn't able to deal with all of the infections and walled one off in my neck in the form of an abscess. The doctors were confused that I had mono as well as a 3-inch abscess in my neck. I was in the hospital for 9 days, had surgery and was released with one of the best infectious disease guys in the country still shrugging. I was sick for two years until my trip this past summer and I still didn't know what was going on. When camping in rural Ethiopia with a celiac I was eating wheat bread/wheat pasta and tea for every meal and got to a point where I could barely put one foot in front of the other. I got pretty sick and when I got back and started eating normal food again I was still pretty sick but at the urging of my friend (lucky he was there) I went off for 3 months and realized I felt better than I had in years.

I wish I knew of someone involved in the research that I could send this thread to. It seems very strange that acid reflux, child birth and mono are shared by so many of us.

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I have always had a sensitive/nervous stomach. Also problems with constipation most of my life. I was under a lot of stress when I first started a job (I stayed with that job 14 years though). I was in my 30's when I started having really bad cramps and alternating constipation/diarreah. At one point my DH and I decided we needed more fibre so we started eating a lot more whole grains, whole wheat, wheat germ, etc. The cramps, etc. got worse but I never associated it with the wheat. I also loved barley and oats. So I guess what I'm saying here is that job stress combined with a diet high in whole grain foods probably triggered by gluten sensitivity.

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