Where Did It All Begin?

[Lailalachina]

Hello everyone,

I have a query about triggers of Celiac Disease.

I'm a newbie here and not yet diagnosed (awaiting results of bloodtest), though I tried a short spate of gluten/dairy free living with definite change if not improvement. I'm back on the gluten again for all the tests. I've been shadowing for a while and much appreciate the wealth of information proferred here.

So far my symptoms fit Celiac disease perfectly, but what confuses me is the suddeness with which it all seemed to begin for me. What have others experienced?

For my part, a lifetime of asthma, hayfever etc as well as regular headaches made me into a congested kind of person who suddenly realised I'd been taking codeine-paracetomal tablets far too regularly for nearly 6 years. I decided to clean up and withdrew gradually from my habit over a period of 6 months. I haven't touched the stuff since July 2006, and I've had D along with an everchanging variety of other symptoms nearly every day since.

I obviously triggered something off (there's no way the tablets could have masked all my symptoms), but I've found no evidence of codeine/paracetomal associated GI problems (and my liver feels fine), so I wonder what the mechanism was.

What do other people find? I've come across vague suggestions of other people who also experienced a very sudden onset of symptoms, although I thought the general trend was a gradual decline over years. I have vague memories of the odd flare-up now and again over the last 6 years, but nothing like what I experience everyday now.

Over the last 6 months malabsorption and malnutrition has made me feel like I'm declining rapidly with new symptoms of aching joints and cracked skin etc appearing regularly.

Did anyone else experience this kind of sudden dive into ill-health? Or did a latent/mild unconcerning condition suddenly develop into a frenzied dash to the loo?

If sudden, what was the trigger? Physical, emotional, lifestyle change etc...

I'm asking this out of curiosity. It's the one area that never seems to be discussed at length. Once people have the symptoms, we seem to face forward in search of relief, diagnosis and/or solution, but why and how did it all start in the first place?

I'd be interested to here,

Laila

[sherylj]

Hello everyone,

I have a query about triggers of Celiac Disease.

I'm a newbie here and not yet diagnosed (awaiting results of bloodtest), though I tried a short spate of gluten/dairy free living with definite change if not improvement. I'm back on the gluten again for all the tests. I've been shadowing for a while and much appreciate the wealth of information proferred here.

So far my symptoms fit Celiac disease perfectly, but what confuses me is the suddeness with which it all seemed to begin for me. What have others experienced?

For my part, a lifetime of asthma, hayfever etc as well as regular headaches made me into a congested kind of person who suddenly realised I'd been taking codeine-paracetomal tablets far too regularly for nearly 6 years. I decided to clean up and withdrew gradually from my habit over a period of 6 months. I haven't touched the stuff since July 2006, and I've had D along with an everchanging variety of other symptoms nearly every day since.

I obviously triggered something off (there's no way the tablets could have masked all my symptoms), but I've found no evidence of codeine/paracetomal associated GI problems (and my liver feels fine), so I wonder what the mechanism was.

What do other people find? I've come across vague suggestions of other people who also experienced a very sudden onset of symptoms, although I thought the general trend was a gradual decline over years. I have vague memories of the odd flare-up now and again over the last 6 years, but nothing like what I experience everyday now.

Over the last 6 months malabsorption and malnutrition has made me feel like I'm declining rapidly with new symptoms of aching joints and cracked skin etc appearing regularly.

Did anyone else experience this kind of sudden dive into ill-health? Or did a latent/mild unconcerning condition suddenly develop into a frenzied dash to the loo?

If sudden, what was the trigger? Physical, emotional, lifestyle change etc...

I'm asking this out of curiosity. It's the one area that never seems to be discussed at length. Once people have the symptoms, we seem to face forward in search of relief, diagnosis and/or solution, but why and how did it all start in the first place?

I'd be interested to here,

Laila

[CMCM]

Here's what I think: For the most part, it really does look like ACTIVE celiac disease is "triggered"...it can be a physical event such as surgery or childbirth, or it can also be a traumatic emotional event. For my mom as an example, she had a hysterectomy and her serious problems began right after then and continued on for 7 years until diagnosis. However, with all the information out there now about celiac disease, she realizes that she actually had symptoms most of her life, but they were things you live with....such as you yourself have experienced.

Same for me. I think I also had asthma, migraines and very annoying digestive upsets most of my life. I'm not totally sure active celiac disease was ever triggered with me, and I can never know unless I spent a lot of months eating gluten and then got an endoscopy to find out...and I'm not going to do that.

But most of what I've been reading suggests there really does need to be a trigger of some sort, major or minor. So what might be going on prior to a trigger event? Probably just your normal gluten sensitivity, which can cause just as many illnesses, problems as celiac disease.

Hello everyone,

I have a query about triggers of Celiac Disease.

I'm a newbie here and not yet diagnosed (awaiting results of bloodtest), though I tried a short spate of gluten/dairy free living with definite change if not improvement. I'm back on the gluten again for all the tests. I've been shadowing for a while and much appreciate the wealth of information proferred here.

So far my symptoms fit Celiac disease perfectly, but what confuses me is the suddeness with which it all seemed to begin for me. What have others experienced?

For my part, a lifetime of asthma, hayfever etc as well as regular headaches made me into a congested kind of person who suddenly realised I'd been taking codeine-paracetomal tablets far too regularly for nearly 6 years. I decided to clean up and withdrew gradually from my habit over a period of 6 months. I haven't touched the stuff since July 2006, and I've had D along with an everchanging variety of other symptoms nearly every day since.

I obviously triggered something off (there's no way the tablets could have masked all my symptoms), but I've found no evidence of codeine/paracetomal associated GI problems (and my liver feels fine), so I wonder what the mechanism was.

What do other people find? I've come across vague suggestions of other people who also experienced a very sudden onset of symptoms, although I thought the general trend was a gradual decline over years. I have vague memories of the odd flare-up now and again over the last 6 years, but nothing like what I experience everyday now.

Over the last 6 months malabsorption and malnutrition has made me feel like I'm declining rapidly with new symptoms of aching joints and cracked skin etc appearing regularly.

Did anyone else experience this kind of sudden dive into ill-health? Or did a latent/mild unconcerning condition suddenly develop into a frenzied dash to the loo?

If sudden, what was the trigger? Physical, emotional, lifestyle change etc...

I'm asking this out of curiosity. It's the one area that never seems to be discussed at length. Once people have the symptoms, we seem to face forward in search of relief, diagnosis and/or solution, but why and how did it all start in the first place?

I'd be interested to here,

Laila

[alamaz]

I think my major trigger was a bout of meningitis and then food poisoning in high school because i started getting really bad acne after that but looking back I've always had symptoms. I used to be the kid who clogged up the toilet at age eight so embarrassing but no one ever thought it meant i was sick. when i went off to college i don't recall symptoms but then again, most of college was a blur once i left college and moved out on my own and proclaimed i was a vegetarian and started eating mac & cheese, black bean burritos, pasta and cereal as my staple diet things started getting bad. it started with peripheral neuropathy and lots of D and really bad acne. i went from a size 10 to a size 4 in a year but i thought i had just lost my freshman 15 and was back to my high school weight. yikes! things steadily got worse and now at 28 I finally got a diagnosis by request (i had to ask for the blood test).

amy

[Nantzie]

Looking back on my life, knowing what I know now about how my body reacts to gluten, I've had symptoms since early childhood.

When I was 17, I had mono which triggered all the GI symptoms, exhaustion, weight fluctuations, etc.

When I was 30, after my first pregnancy, I developed what I called "30-second-notice" diarrhea where I would have to run to make it on time. My doctor thought it was nerve damage from delivery.

When I was 32, during my second pregnancy, I started having headaches, fibromyalgia-type pain symptoms, worsening exhaustion, mobility issues including difficulty walking.

All my symptoms went away after I went gluten-free.

I do think that somehow it does get worse and we can go through these times of a big JUMP in symptoms. I think that we tend to get used to things. I got used to all my post-mono symptoms. Then I even got used to my post-1st pregnancy symptoms. It wasn't until I had all that AND could barely walk that I knew I was in serious trouble with my health.

Nancy

[tarnalberry]

Some really old topics have discussed this - you might be able to search for them if you're really interested - but I haven't seen it much in well over a year. Mine came on, I think, fairly suddenly after a nine-month long battle with a recurring respiratory infection (probably really a series of them, but I was on nine or ten courses of antibiotics over nine months - and hence a number of courses of anti-fungals for the yeast infections I developed, and there have been hints of a connection between candida albicans and celiac).

[Guhlia]

Mine was triggered after child birth, though looking back I realize I had symptoms my whole life. After I gave birth I just never lost that big baby belly and I was terribly constipated up until I started with the diarrhea. Before that I always joked about having an iron stomach because nothing phased me and I never got sick (to the stomach). I've never even had a stomach flu or bug.

[cdfiance]

I'm definitely no expert but just wanted to add that my fiance's Celiac came on pretty hard and fast after she had a viral pneumonia that turned into a pretty bad bacterial pneumonia requiring hospitalization. She had no GI symptoms before that but when she was able to eat after the worst of the pneumonia was over she began vomiting and having severe diarrhea every time she ate. At first her doc thought she had gotten C. Difficle from the antibiotics.

The way her doctor explained it to us was that anything that affects the immune system can trigger Celiac in a genetically susceptible person. She said if an infection hadn't triggered it for Alex, she might have ended up getting it after a pregnancy because the body's immune system is supressed during pregnancy so it doesn't attack the foreign fetus but then surges after delivery causing a gretter incidence of autoimmune diseases like Celiac.

From reading this board and other information sources I have definitely seen that Celiac can affect people in very different ways. I guess Alex was lucky in way that she had what most doctors think of as the "classic" Celiac symptoms so that she didn't have to spend too long mis/undiagnosed like some of the horror stories I have read about on here and elsewhere. Unfortunately her fairly prompt diagnosis didn't save her from almost complete villous atrophy. Celiac is definitely a weird disease!

Ryan

[Kyalesyin]

My wife was always sickly, overweight and tired and always had bad skin, which looking back on it could well have been DH and other celiac symptoms, but she had glandular fever when she was 18 and things got drastically worse after that.

We just assumed that the constant tiredness was from the glandular fever hanging on.... then she had a laporoscopy because she was getting agonising abdominal cramps all the time, and everything went downhill from there. Took us a year to work out that gluten-free was the answer, but it seems to have worked.

[once and again]

I was diagnosed with Celiac disease in the late '40's - as a toddler. Severe diarrhea and bloated belly after introduction of cereals to diet - I was breast fed up to that point. Back then the gluten connection was not known and my parents were told I would "grow out of it." It seemed that I did. I never really liked bread that much and my mother didn't use a lot of prepared foods, so my diet was probably pretty much gluten free. I also cook mostly without prepared foods and did not like to eat hamburgers or other fast foods because I really didn't like sandwich type meals. Would usually try to go somewhere that I could order a salad. I remember having problems with diarrhea off and on and usually thought it was food poisoning. So, not a regular occurence. However, in 2002 - 2003 I began having lots of gas and feeling uncomfortable. Also had an unexplained rash - that turned out to be a newly developed allergy to asparagus - but it lead to my being tested for gliadin, but only after a year of being treated for other things, despite the fact that I had explained about the celiac diagnosis as a child. My gliadin levels were ten times higher than normal and I was at stage three in terms of damage to my villi!

Both the stomach problems and rash occured after my father died after 7 years of sufering from Alzheimer's. The last 15 months of his life was consumed with helping my mother care for him. So, the stress of that seems to have triggered both the celiac and the asparagus allergy.

When I read postings on this site I see lots of familiar things - bruising - I've always brusied easily. I've also been underweight and petite. Until age 55 I was a petite size 6. Also had problems with infertility - endometriosis twice and fibroid tumors.

About a year after I was diagnosed, my 88 year old paternal aunt was also having lots of problems with Diarrhea. Suggested that she be tested. She also has celiac! She had always had "stomach" problems as did her mother - my paternal grandmother. Even though they all knew about my diagnosis as a child nothing ever gave them the idea that it could be genetic. Shows how much progress we have made in terms of that type of knowledge.

[johnsoniu]

I was dx'd after a bout with an intestinal parasite and the three most stressful months at work ever. I don't know if it was a cummulative effect or not. I'm pretty sure I actually had the parasite since I got better for about two weeks after being treated for that, then it was a rapid downhill slide that landed me in the hospital with malnutrition and my celiac dx.

[elye]

One of the amazing things about this disease, and perhaps most aggravating, is the vast differences in symptoms, time of onset, test results, etc. within its afflicted group. I had NO symptoms of celiac when I was diagnosed (I had sub-clinical low iron, that was it)...and therefore no obvious triggers. I suppose I was just living quietly with intestinal damage for most of my life, and stumbled upon the diagnosis through a very with-it family doctor. Amazing how we all differ!

[Debbie65]

I was diagnosed as a failure to thrive baby so I don

[mommida]

I had various vague symptoms until my last pregnancy brought on the major "D".

I have read articles that have shown a link between QUITTING smoking and onset of Celiac symptoms.

L.

[Samanthasmomma]

For me it was childbirth, though now i look back and can recognize symptoms from when i was a kid. After my baby was born i thought i had D from being stressed and tired. Almost a year later i finally couldn't stand the pain any longer and went to my family doctor and he figured it out. The dinner that did me in, i will never forget, Lasagna with tons of fresh baked sourdough bread, and two beers. I ate every last bite and practically cleaned the plate. I thought i was going to die that night!!

[dragonmom]

My introduction was when I got really sick with kidney stones, was in intensive care for 4 days, had 4 pints of blood got color for the first time in months, then started losing weight, eating normal stuff. I had always had diarrea , doctors had said nothing to worry about. Lost more weight, not like me , lost energy lost muscle. my joints ached all over. Had a hystorectomy , still was losing weight, no energy, finally went to doctor had various tests and viola celiac disease. Now 2 years later I'm gaining so much weight and can't seem to stop. My idea is my body doesn't want to starve almost to death again.

[SUZ42]

For me it was after neck surgery for herniated discs. Although I now know I've had symptoms my entire life. I always thought everyone felt like I did.

[wolfie]

I had some vague symptoms after high school. I suspect maybe that my struggle with anorexia as a teen may have triggered it. I was down to 95 pounds at 5 ft 7. I was able to get back to a healthy weight with help from my dr. Later on in my early 20s, when we used to go out and drink lots of beer, I would always end up with D the next day. My friends always asked how I could stay so thin..... I would be fine if I didn't drink beer though, so I didn't think much of it and kept on keeping on. Then I had DS......I had some horrible gas pains and occasional constipation & D. Docs said I had IBS. I seemed to be able to track the D to seseme seeds or poppy seeds (funny that they are both on BREAD!). I went on thinking I had IBS and just thinking that that was the way my body would be. Never heard of Celiac or gluten intolerance. I had DD in 2002 and things went down hill. I was having bouts of severe pain & D for no reason. The gas pain was horrible.....Nurse at the drs office said it was due to my c-section and that it was normal. Finally a year later I decided that wasn't the case. Went to a GI and he said that it was IBS and wanted to do a sigmoidoscopy. I declined b/c the C was getting better on a high fiber diet. He never once mentioned Celiac. I was also suddenly severely lactose intolerant. I had enjoyed dairy all of my life up until DD was born. Then BAM! I noticed when my allergist had me cut out milk (I was drinking 3 cups per day) for sinus congestion. Fast forward 3 years....I was seeing a nutritionist b/c I had been struggling again with my eating disorder.....we had been going over foods that I could eat that didn't bother my stomach and the nutritionist asks me "Have you ever been tested for Celiac?" She sent me back to my PCP and had her run a blood test and it came back positive! I went gluten-free right away and noticed a huge difference! I didn't know not to go gluten-free before consult with the GI and endoscopy, but everyone agreed that since I was doing well that I could skip it for the time being and only come back to do it if I wasn't getting better. Since then DS has been disgnosed via endoscopy last June. I really can't pinpoint his trigger....he has had behavioral issues & constipation, but that has pretty much been all of his life.

[aquamarine-queen]

I had a viral infection several years ago that no doctor was able to explain. (Tested for "everything", everything supposedly "negative" - I have strong suspicions it was West Nile Virus.) I had a high fever for over a week, spent 4 days in the hospital receiving IV doxycycline and a month's follow-up of antibiotics at home (for a viral infection??? I got better but never recovered fully. A year after the infection I began having what I thought were extreme hormonal issues (PMS), did some research and testing and learned I had some problems there, including low adrenal function, for which I was eventually treated. But I still didn't feel "right" and my energy level was dropping as time went on. A naturopath treated me with a detox/supplement regimen and recommended I get a thyroid panel, which I did, and was diagnosed with Hashimoto's disease and hypothyroidism (thyroid disease runs in my family; I have a brother with Graves Disease). In the course of researching my new "conditions" I came across some information that suggested that autoimmune thyroid conditions often co-exist with or are even caused by Celiac disease - something I had never even considered!

As I read into Celiac, I realized that I had many symptoms that suggested I might have it and asked my doctor for a bloodwork scrip. And the rest is, as they say, history. I've been gluten-free for 9 days now and the headache I've had every day for over two years is gone! It's a small first step, but it's a step! Funny thing, I have been bloated all of my life (among other things) and I never thought to look into it. I thought it was just "me".

For whatever it's worth, I'm also doing the gene test through Enterolab. Not so much for me ( I already have all the diagnosis I need) but for my highly skeptical family. I figure the more documentation I can produce, the better. Sad that it has to be that way, but such is life.

AquaQ

[sfm]

Hello everyone,

I have a query about triggers of Celiac Disease.

I'm a newbie here and not yet diagnosed (awaiting results of bloodtest), though I tried a short spate of gluten/dairy free living with definite change if not improvement. I'm back on the gluten again for all the tests. I've been shadowing for a while and much appreciate the wealth of information proferred here.

So far my symptoms fit Celiac disease perfectly, but what confuses me is the suddeness with which it all seemed to begin for me. What have others experienced?

For my part, a lifetime of asthma, hayfever etc as well as regular headaches made me into a congested kind of person who suddenly realised I'd been taking codeine-paracetomal tablets far too regularly for nearly 6 years. I decided to clean up and withdrew gradually from my habit over a period of 6 months. I haven't touched the stuff since July 2006, and I've had D along with an everchanging variety of other symptoms nearly every day since.

I obviously triggered something off (there's no way the tablets could have masked all my symptoms), but I've found no evidence of codeine/paracetomal associated GI problems (and my liver feels fine), so I wonder what the mechanism was.

What do other people find? I've come across vague suggestions of other people who also experienced a very sudden onset of symptoms, although I thought the general trend was a gradual decline over years. I have vague memories of the odd flare-up now and again over the last 6 years, but nothing like what I experience everyday now.

Over the last 6 months malabsorption and malnutrition has made me feel like I'm declining rapidly with new symptoms of aching joints and cracked skin etc appearing regularly.

Did anyone else experience this kind of sudden dive into ill-health? Or did a latent/mild unconcerning condition suddenly develop into a frenzied dash to the loo?

If sudden, what was the trigger? Physical, emotional, lifestyle change etc...

I'm asking this out of curiosity. It's the one area that never seems to be discussed at length. Once people have the symptoms, we seem to face forward in search of relief, diagnosis and/or solution, but why and how did it all start in the first place?

I'd be interested to here,

Laila

Laila - All of those earlier symptoms can be associated with celiac. My own gluten intolerance increased rather sharply over the last two to three years - usually they say there can be a trigger. But before that, like you say, there were flare ups.

I have heard that codeine is constipating - so that is one symptom it could have been masking - and it could also have hidden the joint pain, right? Or maybe it was the withdrawal that was your trigger?

Sheryll

[Ed-G]

Mine started right after I began taking solid food -- when I was about nine months or so. Even though I I had a good appetite, I lost weight and didn't grow much at all. After a year or so, my parents took my to my pediatrician, fearing the worst. So was my pediatrician, who didn't want to give a prognosis of death. He did manage to hear of celiac, however, even if he didn't remember the name. He suggested to try it out, just in case, and it worked, I grew six inches and gained a deal of weight in just a few months.

ED

[Eriella]

Mine was triggered by viral bronchitis during the start of a new job.

[VioletBlue]

My two cents. I believe stress has been the trigger all along for me. I believe the first symptoms of Celiac started about ten years ago when I started an incredibly stressful job. The symptoms got worse and better as the stress levels in my life changed over those ten years. Last year was extremely stressful, having to deal with a difficult family situation. I was diagnosed the end of November beginning of December of 06. I am in the process of trying to walk away from that family situation and the stress it creates. For me, just for me, I realize that stress is deadly. I do not want to know what the next manifestation of a stress filled life will be. Celiac is enough. I've learned my lesson. I WILL de-stress my life. Nothing is worth the price I believe I've paid.

[babygirl1234]

i was dx when i was 16 i had bad stomach pains, for a whole year before i was sent to a GI doctor they thlough it was in my head well guess what it wasnt

[chocolatelover]

I think my trigger was stress, though now that I've been diagnosed, it's pretty clear that it's been around forever. The combination of moving often (my husband's in the navy), huge stresses with his job, the colitis--I think it all just came to a head last fall, which is when I started pursuing this aggressively.

I remember in college going to our favorite Italian restaurant (what do you eat there, but bread, pasta, and gluten filled desserts?) and literally running for the bathroom by the time we got home. Every single time. I just thought it was all the rich food, but I guess it wasn't! I can even remember hiking in the woods with my daughter and having to stop to go in the woods and swearing my daughter to secrecy that she wouldn't tell anyone that I had to do that.

Nantzie, I still have that 30-second notice thing going on! Laughed out loud when I read that.