How Did You Acquire Celiac?

[psawyer]

The genetic factors are, obviously, present at birth. But it seems that something more is needed as a trigger to activate the latent disease. Typically this is something that puts a high level of stress on the body in general and the immune system in particular. An infection, an infectious disease (such as flu), pregnancy/childbirth may be the trigger. Mononucleosis (mono) is commonly cited as a trigger in people who have the necessary genetic factors.

Other autoimmune diseases are also thought to have both a genetic element and a trigger. This is why many people who are born with the genetic tendency for type 1 diabetes do not have the disease at birth, but develop it at some later point in their life (mostly as a child or adolescent, which is why the disease used to be known as Juvenile Diabetes--I developed it at age 31, long before my celiac disease was diagnosed).

A trigger may also escalate symptoms in someone who already presents celiac disease, and may push them to the severity that leads to a correct diagnosis after years of hearing stories about irritable bowel, acid reflux, heartburn, etc.

[Claire]

A trigger may also escalate symptoms in someone who already presents celiac disease, and may push them to the severity that leads to a correct diagnosis after years of hearing stories about irritable bowel, acid reflux, heartburn, etc.

It is an unfortunate truth that often we have to get worse before we can get better. I have a friend whose husband fights going to a doctor because they always tell him "come back when it's worse", I had to pass out and hit my head on the bathtub before I really began to get attention. The chances are the passing out incident was related to a 'bug' that was circulating at the time and had nothing whatever to do with the issues I have been trying to resolve for years. Anyway, this year I have had more attention than any one patient needs. No answers yet though. Claire

[Merika]

I "got" celiac when I was 19, just after a noxious combination of prescription drugs, one of which is now off the market (for side effects, and oh yeah, killing a few people). Hospitalized, weight loss, way off electrolytes, funky heart stuff...but nothing to get me diagnosed. That came 12 years later, after my mom was diagnosed and I got tested.

Looking back though, there were signs here and there that something wasn't quite right. I wasn't a "sickly" child. But every year we'd go on family vacation and eats tons of gluten and my stomach always felt off and nauseaus - i figured it was the change of water or whatever. At home we didn't eat much gluten. And when my dad started cooking gourmet-ish American foods we were eating a lot more gluten. He'd make these really fancy delicious pizzas and I'd end up in the bathroom 15 minutes later, lol - I figured it was the copious cheese and a lactose thing.

Then, things got worse in college - dorm/student food was super high gluten. I was always hungry and could never find anything to eat. I would go to dinner the minute the cafeteria opened, while my dorm pals dilly-dallied about and made it down an hour later. I was like - dudes - I'm starving, let's GO

But the year in school I lived above a bakery that friends worked at was the worst, lol - free muffins and bread every day. And I didn't really know how to cook , so that plus pizza and I was in pretty bad shape that year - I thought I was just stressed. And I was, but I think it was actually the gluten causing the stress causing me to not deal well with things that year. And THEN the medicine came....which set everything off.

But looking back, damage was being done all the way along, I believe. Oh, and it got worse 12-18 months after I had my baby (still undiagnosed but 10 years of symptoms at the time). I actually did really well pregnant.

NINI - maybe a new thread needs to be started for this....how did you cope with a little kid while you were in the midst of celiac horrible symtpoms. I still have trouble with this....

Merika

[Guest nini]

NINI - maybe a new thread needs to be started for this....how did you cope with a little kid while you were in the midst of celiac horrible symtpoms. I still have trouble with this....

Merika

I was fortunate that my hubby was a lot of help with my daughter while I was so sick... I mean, I dunno how I coped, I just did... ya know, just did what I had to do... I was also working at the time and a lot of times would have to either call in sick or leave work early... daughter was also in daycare a lot during this time. I'm not proud of that, but I didn't really have a choice. Sometimes I would take her to daycare then go back home and be sick all day... then pick her up in the evening... The women that ran the daycare told me they were really worried about me. Once I got dx and started getting better, I made sure I went back and told them what had been wrong with me... they were so happy to know that I was getting better.

[Rusla]

interesting how many of us noticed an increase in symptoms after having Mono...

How many of us have had Mono I wonder? I had mono at 18 and my gallbladder out at 20, my tonils out at 21 and a tubaligation at that age with a hystrectomy at 35. I remember my big D problems started after mono got worse after gall bladder.

[frenchiemama]

How many of us have had Mono I wonder? I had mono at 18 and my gallbladder out at 20, my tonils out at 21 and a tubaligation at that age with a hystrectomy at 35. I remember my big D problems started after mono got worse after gall bladder.

I had it as a kid.

[Nashville]

I got mono when I was 30, about four years ago. Up until that point I had been very healthy and ran about 3-4 miles a day about 4-5 times per week. Since then, I have not been able to exercise, and I have basicallly felt crummy ever since. I went to every specialist and no one could find anything wrong with me, other than my spleen is still slightly enlarged. I was diagnosed with Celiac two months ago. I am hoping that going gluten free will help my other problems — fatigue, headaches, inability to excercise, etc.

[isthislife?]

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.

I had a positive Ag, TTg, positive for all 3 thyroid disorders, also positive for neuro problems and malabsorption, low vitamin d, migraines, osteopenia, fatigue and shortness of breath, arthritis and overall body pain. I am not looking for to the change of lifestyle diet, but I am sure looking for to having more energy and feeling better.

[aikiducky]

My mom recently told me I used to always have D as a baby, and noone could figure out why... as long as I remember I've had some bathroom issues and gas, but I've always thought it was just some lactose sneaking in somehow. Even when I was practically dairy-free.

I didn't actually get dramatically sick before going gluten free. So I can't say that there was a trigger as such. I think I've either had celiac all my life, or I've been gluten intolerant all my life, and only then it got serious enough to get my attention. Thinking back I had been feeling progressively more tired and less healthy for some years. I had D for abot six weeks before I went gluten free.

Pauliina

[mookie03]

How many of us have had Mono I wonder? I had mono at 18 and my gallbladder out at 20, my tonils out at 21 and a tubaligation at that age with a hystrectomy at 35. I remember my big D problems started after mono got worse after gall bladder.

interestingly enough, i was diagnosed w/ mono when i was a jr in college but never thought i had it... diagnosed by blood test only (after a routine annual physical) and never had a single symptom...so i dont know if it was a false positive or if i had it and was just very lucky. but i had gluten symptoms long before that...since i was born pretty much.

One funny thing ive noticed is that when i was a kid i was totally convinced i had lactose intolerance and now i can drink milk at every meal and not have a problem. but when i see people i knew when i was a kid, the first thing they say when i tell them about celiacs is "Wait, does this mean you can have ice cream again?!" what a bunch of optimists...

[julie5914]

I don't remember having too much trouble as a kid, though I do remember having strange and sometimes detrimental eating habits as an adolescent. I was also always shy and withdrawn, but I think a lot of that was just how I was brought up.

I had mono at 19, a hemorrhagic cyst at 20, and impaction shortly at 20. I am not sure which triggered, but things definitely got worse after that: anemia, fainting, all kinds of gastro trouble, weakness. I was finally diagnosed through an IBS research study at 25.

[tasha]

Wow, thanks for sharing everyone!

Its interesting to see how many people seemed to have been triggered by illness. I definitely thought a lot more people had symptoms from birth.

[pedsarnp]

I was pregnant with my 6th child and experienced a second trimester miscarriage. I hemorrhaged severely and lost a life threatening amount of blood.

Within a few weeks, I began having the abdominal symptoms. I was so weak and fatigued anyway from the hemorrhage that I didn't think much of those particular symptoms.

Within a few months of the hemorrhage I was officially diagnosed.

I will never know if the celiac triggered my miscarriage, or if the hemorrhage triggered the celiac.

I tend to think it is the latter. I was completely 100% healthy and robust prior to the miscarriage and hemorrhage.

[sillyyak]

I had gone to Asia and came back with what was initially some acute infectious illness of unknown etiology. I was placed on antibiotics and got better but some other symptoms remained and lingered, namely, nausea, vomiting, fever and occassional diarrhea. The diarrhea went away for about a month. (This whole drama from start to diagnosis lasted 3 months), but then the diarrhea came back. It went away and that is when the fainting and dehydration started. The nausea and vomitng went away and were replaced with tingling in my arms and legs and chest pain. But for some reason, all of the labs and tests came back negative/normal and the doctors were at a complete loss for what I had. I just got a copy of my hospital chart and the doctors really had no clue as to what I had. Eventually when they called the GI consult, even they did not know what I had. They decided to do a colonoscopy and endoscopy and that is when they found out what I had. It was an awful experience, especially since I had been "clinically asymptomatic" before I went to Asia. I started to panic internally when the doctors were asking ME what I thought I had! Then I thought, well if they don't know what I have and all the tests are normal, then WHO is going to know? A dreadful experience. I am grateful they did not give up looking and were as curious to know what was making me ill. They never referred me to a psych but were going to only IF the GI consult was negative. I was going to self-refer myself IF the GI consult was negative.

The uncertainty and mystery of not knowing was killing me, literally. That is my story.

[dlp252]

I think I've had it a while...when I was a baby wheat gave me eczema. Mom said I outgrew that, and in fact was eating pasta and other wheat products as a child. I have had digestive problems all my life, but that was about it. I started having much more trouble after my father died in 1996, but the major problems started around the time I had major surgery in 2001. I'd never had allergies or respiratory problems before those two events...after my father's death I had several rounds of bronchitis, then after the surgery I suddenly got major allergies with constant/chronic sinus infection and major digestive problems. I didn't start really trying to find out WHY I was sick all the time until about 4 years ago. I've had many of the symptoms on the "list" of symptoms at one time or another in my life though.

[happygirl]

I think that I got Celiac shortly after I had mono. That's when I got very, very sick from it, at least.

[anerissara]

It's interesting reading these posts...it sounds like most people are dx'ed later and it also sounds like many people can trace it getting worse after a tramautic illness or event.

For me, it all started when I was 16. I left for boarding school, which was very traumatic for me...and also the diet at school contained more wheat in general (looking back I can see that most of the food was processed and probably had wheat starch etc.). I had D pretty constantly from that point on, but it wasn't too bad until much later.

After I had my 3ed child it became much worse. I had surgery to have my tubes tied right after her birth, and things got progressively worse until she was about 2. I did notice that I got quite sick around Thanksgiving and Christmas for the first 2 years after her birth--in retrospect probably because I went on baking binges during those holidays and made (and ate!) tons of breads, cookies etc. Finally last year by Christmas I had gotten to the point where I was tired, dizzy, had rashes all the time, my hands were breaking out in little painful/itchy blisters, and I had D that was worse and more often than before. I was retaining water like crazy, too. My dr. said it couldn't be celiac disease because i hadn't lost 15 lbs for no reason lately. I think it's very likely that had I not cut out the gluten on my own I *would* have started losing weight...but at any rate the symptoms mostly cleared up within a few days of going gluten-free. I still am fighting D, however, and keep finding that I'm getting glutened here and there...so hopefully before long the D will go away, too.

Another nice thing is that I quit retaining water so much and actually was able to *lose* weight that wouldn't come off before. I think most of it was water weight. Plus, my stomach...which was always distended before...has almost gone down to normal! Unless of course I get glutened in which case it's right back again.

[Rikki Tikki]

The symptoms started shortly after surgery. Went on for 10 years, went to the doctor who told me I had a positive test for celiac but it was so rare he didn't think I had it, I believed him and didn't even look it up. Then I got really sick for several years before I finally went back to the doctor. Positive blood and biopsy.

It pretty much has sucked although I am more used to it. It's hard this time of year, I want a cookie!

[mommida]

Umm, I think I caught it from a toilet seat.

ROFL Sometimes it gets a little too serious around here!

Laura

I started showing symptoms since I was 10. I've had mono, meningitis, mycoplasmic pnemonia, and 2 pregnancies. The second pregnancy turned all symptoms to "classic". To try and track down the trigger would be a waste of time to me. I would like to concentrate on a healthy future.

[celiac3270]

Funny , but medical studies have actually shown that there must be some trigger. You need to be predisposed to celiac, having one or more genes, but you also need a trigger to set it off. Some triggers have been identified, such as invasive surgery, significant illness (mono, etc.), tremendous stress, etc.

[frenchiemama]

Umm, I think I caught it from a toilet seat.

ROFL Sometimes it gets a little too serious around here!

Laura

LOL

I think I got it from riding a tractor in my bathing suit.

[once and again]

I agree that it is genetic and triggered. I was diagnosed with celiac as a toddler in the late 40's. My parents were told I would outgrow it. The connection to gluten was not made until the 50's, by which time I seemed "normal." However, I have always had a "sensitive" stomach and really did not like bread, pizza, pasta.... would eat small amounts but not like my sibs or friends.

I was re-diagnosed in 2004 at age 57. However, there were symptoms for about 18 months before that. My father died in March 2002 after a long bout with Alzheimer's. It took the entire family working together to keep him at home the way my mom wanted it. Looking back I can see that may have been the trigger for the increased symptoms.

My 89 year old aunt was just diagnosed after I recognized her symptoms. She says she has had stomach problems all her life and so did my grandmother - who lived to be 96!!!! So, I know which side of the family it comes from now.

My son (28 yrs.) is following the diet although he has not been tested. When I think back to his childhood, I recognize the horrible diaper rash (after eating lots of crackers) that I saw described in another thread.

He had had a virus and his stomach didn't recover so he went gluten free.

This site has made me much more aware of the related symptoms. My parents just described the diarrhea. I had that occasionally, but probably not as often because I preferred not to eat bread, etc. I can remember many times though when I thought I had food poisoning - usually when eating out. I have cooked mostly from scratch so probably avoided being a lot worse over the years.

[carriecraig]

I've definitely had problems with stomach aches, D, yeast infections, always tired and hungry, brain fog, and it had gotten worse over the last couple of years. In 2002, I got engaged, planned a wedding in 8 months, got married in April 2003, and moved to NYC in June 2003.

Over the summer of 2004, I jumped on the million-grain bandwagon (after doing South Beach diet for a while. I ate 7-grain bread, breakfast bars, wheat pretzels, 5-grain bagles. I'd say in January 2005, I started really having the symptoms of Celiac - very bloated stomach, D up to 7 times a day, always hungry (i ate more then my 185 lb. husband). By May, I went to a GI that a co-worker was going to, and after talking to him, he said that I probably had Celiac, and did the blood test, endoscopy and biopsy to confirm.

My husband thinks that by eating so much wheat all of a sudden last year, really did me in... I'd say it's probably a combination of that and getting married and moving to NYC within a couple of months really started the ball rolling.

[Lauren M]

LOL

I think I got it from riding a tractor in my bathing suit.

A Seinfeld fan! I love it!

- Lauren

[chuikov]

Funny , but medical studies have actually shown that there must be some trigger. You need to be predisposed to celiac, having one or more genes, but you also need a trigger to set it off. Some triggers have been identified, such as invasive surgery, significant illness (mono, etc.), tremendous stress, etc.

Maybe my family has a very strong genetic predisposition, but the symptoms have always been there for my sister and myself. They have just steadily gotten worse over time. when I was in school I used to have to run to the toilet in the afternoon pretty regularly. People told me I had a "nervous stomach", but it never made sense to me because it happened when I wasn't nervous - it usually happened some time after lunch .