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tasha

How Did You Acquire Celiac?

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Hi,

I didn't really know where to put this but here it goes...

Just out of interest, I was wondering how everyone here acquired celiac...born with it? induced by illness/pregnancy?

Its been confusing for me to try and figure out how long I have actually had celiac disease and what actually caused it so I am interested to hear people's stories.

Obviously there is the genetic element, but I think I acquired it after food poisoning when I was in Belgium in Aug. 2004. The next day we travelled to Spain and I ended up in the hospital for 4 days there as, during the food poisoning, I got a terrible infection. Anyway, it is my belief that from my stay in the hospital there (where I was given very high doses of antibiotics and was in extreme pain) that I got celiac, in addition to external endometriosis. The doctors don't seem to want to ever help explain this to me. Its difficult to try and get answers when you have to see so many specialists and there is no communication going on.

Regardless, I think I'm pretty lucky to have been screened for celiac when I only complained of dizziness to a doctor at a drop in clinic at my school two months later. I think I only had celiac disease for those few months until i was diagnosed for sure by biopsy in April 2005. It is hard to tell though, because the previous January I would feel dizzy once in a while after exercise. Maybe illness sped up the process? It seems like my doctors don't consider the body as a 'whole' at all that is affected by everything, at least in my somewhat uneducated opinion :)

Anyway, please share! Thanks.

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I don't really know to tell you the truth. <_<

A doctor I saw yesterday told me it was there my whole life....slowly doing damage. Certain circumstances either caused it to progress with noticeable symptoms or the damage just finally took a toll on my body. I was under alot of emotional stress at the time and had Graves Disease also. He said the thyroid problems were likely caused by the gluten intolerance to begin with though. Not really sure on this. :unsure:

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I started having stomach problems when I was 17, but looking back I can see all kinds of non-GI symptoms throughout my childhood. I developed DH in 2003, I had a very small surgical procedure on my arm that got infected and I ended up getting a bad case of impetigo from that. That is when the DH appeared, I took antibiotics for the impetigo and just when it was almost healed I got this terrible rash that never went away.

I was finally diagnosed in April of this year at age 27.

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If Celiac is genetically determined then that gene came with you at birth.

It is often discussed that the actual development of the disease requires a 'trigger' - illness, pregnancy, trauma. I have read of several people who first manifested the disease after having mono. Claire

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I started having GI problems when I was 17, right after I had mono. But I started having noticeable problems in school with brain fog, memory and concentration when I was in 4th grade. (Most of my symptoms are neuro rather than gastro, so I think there's a connection to my problems in school.) Parents and teachers said that I just wasn't "applying myself". I remember being really tired all the time starting around that point, and even earlier. The summer between 3rd and 4th grade we moved from VA to CA, and I was really sad at losing all my friends, but I don't know if it would have constituted enough of an emotional trauma to trigger anything. But I did have chicken pox in 2nd grade, so maybe that was it.

Nancy

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Hi Tasha,

I also got dizzy after excercise. My most recent problems began about 5 years ago. I would break out in hives, achy joints, retain water and terrible moodiness. Then I started getting dizzy/lightheaded after a workout or eating certain foods. The drs tested me for the usual, heart, thyroid, low iron. I did have anemia and took iron suplements. I was fine for a while and then I started having more and more diarrhea, I would get ill after eating breakfast(toast) or if I ate at subway(buns). Then I had bronchitis and was put on antibiotics. That's what triggered my body to have a meltdown and after many months of tests and self diagnosis, we finally figured it out to be gluten intolerance. Within days of going gluten-free, I felt so good and had normal bm's. So I think...no, I know I've had gluten intolerance my whole life, but it took the antibiotics to "trigger" it.

Charlene

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The "genetic element" is how you get Celiac Disease, however, it depends on if you show symptoms or not that gets you diagnosed. My symptoms started when I was an infant.

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Looking back, I had symptoms as a child (anemia, I would only eat potatoes morning, noon and night because they didn't hurt my tummy, etc.). But in my early 20's I went down on vacation to Jamaica and got food poisoning, which triggered the severe symptoms.

Karen

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I too feel that we are born with the gene, probably dmamge is being done all through our lifes and then something triggers it to become overactive. My sister ate dirt as a young child and we both remember that she was diagnosed with a vitamin deficiency then--she had to take this medicine that we called bug juice. I have always had a very touchy tummy, as a child I would get car sick. I think pregancy triggered me. It became much worse when my sister lost her first baby--at that point, I developed panic attacks, agoraphobia, anticipatory anxiety--all from chemical imbalances. My sister has celiacs and so does our father. I feel that some of my kids have it too, but they dont want to know as of yet. I cant talk them into being tested. Deb

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Probably another intestinal problem triggered it for me... (malrotated intestines) ... if it's possible for that to trigger it.

Edited by Coulter

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I think for me it was the C-Section I had in 1984. It was after that that the anemia, and nausea began. If I knew then what I know now.......

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My understanding is that you are born with it but depending on you as a person it does different levels of damage.. and that the normal hormonal swings that you go through from say 12 to say early 20's is very effective in masking it. In cases where that happens, I think no one 'gets it" till they did enough damage to impact them enough to see a doctor. The human body is designed to compenstate where it can, so it takes a shock that puts the system behind (ie, sickness, pg, etc) futher then it can catch up with its damaged recorces to notice it. Plus its offten a gradual proccess, and ppl tend to "adapt" to it with time.

Some fortunite souls like my son have such sever reactions from birth that they get dx'd right away....

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Looking back, I had symptoms as a child (anemia, I would only eat potatoes morning, noon and night because they didn't hurt my tummy, etc.). But in my early 20's I went down on vacation to Jamaica and got food poisoning, which triggered the severe symptoms.

Karen

same w/ me- when i was a kid i was always sick, i assumed it was lactose intolerance (which is funny b/c i can now drink a gallon of milk and feel fine) but never thought anything of it. Then it got worse when i went to college but i attributed it to drinking too much :D went to the GI but he recommended more fiber which didnt help at all. finally about a year ago i got food poisoning from undercooked chicken in a deli and NEVER recovered! it triggered terrible symptoms that were far worse than before and i had to figure out what it was.

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Guest nini

I've had symptoms since birth, but after having mono in my early 20's I progressively got sicker, then after 2 miscarriages and a life threatening pregnancy and c-section my health deteriorated rapidly til I was dx when my daughter was 3.

I always had some manifestation of the disease. My immune system was always compromised. It just kept getting progressively worse especially after trauma and illness.

My daughter showed symptoms from birth.

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I really don't know how long I have had it but almost 8 years ago I was in grave danger with Pernicious Anemia. No one knew why I had it and the GI would not listen about Thyroid or anything else. It was shortly after that when we ended out on strike and I started to have real problems with my stomach but I have had the big D my whole life . It has certainly gotten better since being gluten-free except when I get glutened.

As the thyroid,Celiac and Gluten intolerance was never discovered until this year. It was only discovered because I showed my agressive streak.

It is more than possible I have had this my whole life as I was also very ill as a child.

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It seems like my doctors don't consider the body as a 'whole' at all that is affected by everything, at least in my somewhat uneducated opinion :)

Anyway, please share! Thanks.

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It sounds like, for a lot of us, there are several periods of rapidly appearing symptoms, followed by periods of just adapting to the symptoms because nobody thought to look for celiac.

Nancy

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I got mono and then that triggered the celiac to activate. Was diagnosed at 16 and am now 18.

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I'd barely been sick a day in my life until I got Mono. After that I developed Psoriasis, digestive problems, and had my tonsils taken out a couple of years later. Several years later I was almost crippled with arthritis, found out I have an underactive thyroid and was diagnosed with food allergies. I have been relatively healthy (except for some kidney problems) for the past 10 years since eliminating wheat and several other foods, but just recently discovered it was gluten, not just wheat that was my biggest problem. Still don't know if I have Celiac or not, but will be avoiding ALL gluten forever.

Liz

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To be honest I'm not entirely sure what caused mine to be triggered. I know I had the genetic disposition because how I ended up getting diagnosed was after my 1st cousin found out she had developed it. We know hers was triggered by her pregnancy. I had been getting sick and having symptoms for about 8 years or so and they were getting pretty bad right before I was diagnosed.

To be honest my best guess as to what triggered my celiac is a lot of partying. I know this may sound silly but around the time my symptoms started I had been partying really hard for a few years (drinking only); however when I say this I'm really not exaggerating. At the time I was able to out-drink professional hockey players!

I think this may have pushed my body over the edge. That's my best guess.

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Have had mild symptoms about the last 5 to 7 years. I think it must have been initally triggered with a bout of the flu. This past March I caught a bad case of the flu and I guess that triggered the main outbreak. Dx'd in May and went on diet. Fine now.

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It's funny someone mentioned earlier about their sister eating dirt. That brought back some memories for me. I have to absolutely take the cake on eating the weirdest stuff when I was a kid. I used to love to lick my finger, dip it in the ashes of the ash tray and then eat the ashes.

Also, when I was a kid, all I would eat would be potatoes, morning, noon and night. I can even remember Mom putting the McCain french fries in the oven for me for breakfast. The pediatrician at the time told her to just continue feeding me potatoes, eventually I would grow out of it.....

Looking back now, I realize that was my body trying to tell me something. Eating the potatoes, I mean, not the ashes!!!

Karen

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Well... for me, im 22 now, since i gave birth to my daughter 7/13/2004, i have had off and on stomach pain. I waited about 8 months before seeing a doctor because i lost all my baby weight and thought my body is just trying to get back to normal. Almost everytime i ate and still now im bloated and in pain, not going to the bathroom like i used to. I knew something was not normal. The first doctor told me it was just stress, then the second said oh its a umbilical hernia i was like what!, then i had to get a sonogram. It wasnt that. So she sent me to another doctor, he said that it may be a gal bladder problem so i got a upper gi and small bowel series x rays. He said they were fine, just drink more water. So i tried that, didnt work. Then i saw a gastronologist, two doctors later both told me i had ibs. Then recently i went to another gastronologist that i knew was reccommended, the first thing he asked me after i told him my symptoms was, are you allergic to gluten??? I was like whats that! He knew what was wrong and the other doctors didnt have a clue! Isnt that crazy. Anyways i got the bloodwork that was positive one of the igs was like a 74! And have to get my endo and biopsy next thursday, the doc said no matter what the biopsey says i am with celiac disease, he said my rate on the bloodwork was so high hes 99.9% sure i have damage. Isnt that crazy! Anyone email me if you have a similar experience!

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