What Do You Think Triggered Celiac For You?

[cruelshoes]

Colleen , What do you suppose was your son's trigger?

neesee

He did not have a trigger that we know of. We had him tested after I was diagnosed because he is my first degree relative. He had no outward symptom other than not growing for a year. It really demonstrated to me the importance of having all first deree relatives tested, regardless of symptoms. My older daughter was negative, and we have not tested our baby yet.

[neesee]

He did not have a trigger that we know of. We had him tested after I was diagnosed because he is my first degree relative. He had no outward symptom other than not growing for a year. My older daughter was negative, and we have not tested our baby yet.

It's good you caught his celiac earlier rather than later.

I think it's difficult for most people to pinpoint a trigger. I'm not sure at what point I developed celiac either. I do remember having a severe gastroenteritis when I was 19. My mom had it at the same time. It was the worst we had ever had. It took several days to get better. Mom never did. In 3 weeks time she had lost 20 lbs and had high blood sugar and ketoacidosis. That's when she became a type1 diabetic. She was 44. She lived to be 55.

neesee

[likegiants83]

I can only theorize---my trigger was everything crashing down upon me at once, the stress of rapid change, heartbreak, and also the physical stresses from compulsive exercise and overeating. Between the summer and fall of 2004, I:

• Moved three times, nearly 2,000 miles away from home
  
• Took a semester off from college and started working 60-hour weeks in a high-stress, competitive field
  
• Fell in love, got heart broken
  
• Had onset of depression
  
• Started dealing with stress by eating, over-exercising to compensate which led to an eating disorder
  

Everything just kind of happened at once (in fact, in just a few days' period the breakup, move, and another major let down happened) ...and I think it was simply way too much for my body to deal with.

However, before this, I had had some skin and stomach problems that went back to at least mid high-school, and my mother said that for some reason growing up, the only foods that I ever wanted to eat were BREAD and MILK. Interesting, since I now seem to have difficulties with both... I wonder if I kind of had it all along and was craving the very things that were so bad for me.

[little d]

Very interesting to see Mono mentioned more than once! Thanks again for keeping this thread going and sharing your stories!

Hi Doll I did not have Mono but I did have Walking Phomnia when I was in the 8th grade it hit me pretty hard, I was in bed for a week my mom was really worried. I think that it took me a month to feel like my self again. Because the medicine that was prescribed to me was Aguaminten and I also had a bout of D along with everything else. The week before I was trying to leave school and the teacher refused me to leave class to the see the school nurse because I knew that I had a fever, my fevers are always more internal I may not feel hot to the touch on the forhead like most others. When my mom came home she took one look at me and off to the doctor we went, man I at that time I had never felt so crappy in my life.

donna

[Canadian Karen]

I can trace my trigger back to when I was vacationing in Jamaica and got food poisoning. That was back in the mid 1980's, and I have literally had permanent diarrhea since then. Seriously, nothing but water since the mid 1980's. 20 - 30 times a day. Every day.

I can look back in my childhood though and all the signs were there. I was a terrible eater, all I would eat was french fries, breakfast, lunch and supper (now I know that was my body's way of saying potatoes were the only thing that didn't hurt me!). Also, I used to have "black outs" where I would faint (mom said almost like seizures) but I grew out of those. Also, I used to have pica, and literally lick the ashes out of ashtrays. I have learned during my research that pica can be common in celiac and it is the body's way of searching out the minerals we are missing...... Also, ironically, during my childhood, I had severe constipation problems..... Oh, and let's not forget, the anemia. I can remember going to the doctor every week to get my blood checked, even as a child, I was anemic......

If only the doctors knew back then what they know now...... Oh wait, silly me, what was I thinking. Nothing has changed, has it!

Karen

[confusedks]

This is really intersting. Someone mentioned that an environmental change can trigger celiac. I am not diagnosed yet but have EVERY symptom and in 2004 I moved to New Zealand and that is realllllly when my symptoms started to become apparent. I have always had "a senstitive stomach" and "whole wheat" allergy, but never had heard of celiac. DOes anyone think this is possible, or has anyone experienced this?

Kassandra

[Susan-in-NC]

I cannot say for sure when MY celiac was triggered. I am 50 and just Dx, but looking back have had mild symptoms my whole life but only recently had a Dr. put things together.

But, food for thought -- I was hospitalized at 3 months old with chicken pox and german measles AT THE SAME TIME. In fact my current Dr. ran a titer test on me to check on the antibodies for when I went back to college (they required vac or proof of antibodies in blood stream). He was adamant that there was no way possible for an infant to have those two dieses at the same time at that age. My mom always swore to this (had long involved story about her divorce and the hospital bill for my treatment causing the breakup). Anyway, I feel my immune system was already compromised at that early age.

I do know that my older sister was looking through photos from long ago and called me. I was always told how fat I was. She said I was all boney elbows and knees with a huge bloated belly. Course now I am very overweight and having real trouble controling my weight. Dr. said my body was in starvation mode and was 'saving' any fat it could latch onto. I don't know about that, we'll see what gluten-free does for that.

Susan

[carriecraig]

I'm in agreement 100%. I've been saying this a long time as well....autoimmune disease doesnt just "happen". Autoimmune disease requires a trigger....a virus, bacteria, some other pathogen or environmental trigger.

Genetics determine types of autoimmune disease you are susceptible to. Sometimes a pathogen can go undetected in the body for a lifetime...triggering a mulitude of autoimmune problems. If the culprit (or culprits) can be identified and treated effectively....development of additional autoimmune problems can be prevented. Some autoimmune conditions can be resolved....such as autoimmune thyroid disease.

WOW - I'm a little late to the party here, but I ALWAYS thought it was the 7 Grain bread, and wheat Thins, and all of the other "healthy" multi-grain foods that I was eating that triggered my Celiac. If I think back, it could be getting married (April), moving to Manhattan 2 months later (June), my grandmother dying 3 months later (October), and the stress of being out of work for 6 months (Jun - Jan). It was in Jan when I started to have symptoms of Celiac.

I was originally diagnosed with IBS by my PCP and was told to eat a bland diet for 2 weeks. When that didn't work, I went to a gastro in NYC on a friend's recommendation, and within 10 mins of talking to the doctor, he said, "I'm pretty sure you have Celiac. We'll do the blood test and endoscopy to confirm, but I'm 99% positive." And, he was correct...

I also have asthma, allergies and psoriasis. And am Irish...

Thanks so much for opening my eyes...

[blueeyedmanda]

I think for me it was an exposure to meningitis and a bad bout of Swollen Glands all at once. It seems I was never the same after that. I was so sick my last year of college. Just thinking of having to get a fulltime job was enough to send me to the bathroom This sick me lasted from 2001 to 2004 and then I found out about celiac. I was 40 lbs lighter and looked like death was coming it was bad. Thankfully everything is better now...I am a lot heavier but well I will get that in control one of these days.

[Janeti]

I'm so glad that someone thought of this. For me, I always had something going on. Fevers, sore throat, dry itchy, itchy patches, bruises everywhere, D, C,. But it wasn't until I had my first baby, when I developed joint pains, severe brain fog, ataxia, chronic sinus infections, and finally Hashimotos. I think that it was the difficult birth of my son, which tore my uterus. That was in 1985, and it wasn't until 2006 when I wasn't able to make it out of bed anymore. I kept telling the Drs that something wasn't right, and they kept telling me that I was depressed I pray for more awareness, and more patience from the Drs. What are the chances? Janet

[BettyL.]

Anyway, that is my story, I want to know what YOU think triggered your Celiac, and how were you diagnosed. I have added an article below.

Please note: I am referring to Celiac Disease here, I am assuming "gluten sensitivity" (no positive antibodies) or gluten allergy are not triggered like an autoimmune disease.

P.S. I forgot to initially add "bruising" to my list of symptoms! My legs were COVERED in bruises! I looked like I played hockey!

I just found this thread and find it very interesting. I am not sure what trigger my Celica. Now that I know about it, I realize that I probably had it most of my life. I would have minor symptoms. Stop growing at 13 years old, No weight gain; no matter how much I eat. Hives at various times and a lot of allergies. BMs 3-5 days and always constipation. Cramps and nausea with my periods. After I started working at the hospital I started to gain weight and became overweight. I am now 76 years and wasn't diagnosed until I was 62 years. The reason, I had 2 brothers who were celiac disease and the 3rd one was being tested. Looking back I know that many members of the family had it.

In 1985 I contracted H. pylori bacteria and feel that is probably what trigger active celiac disease. The bacteria infection was found when an endoscopy was done. My digestive was so bad the doctors could tell nothing. My blood work came back as 2+ for wheat and negative for the rest. So I have no paper diagnose for Celiac. I am 1/2 French and 1/4 English and 1/4 Scotch.

[natalie]

I'm pretty sure of my daughter's trigger. She was 2 1/2 at the time. The family was together at my Mother -in-laws for a family birthday. My son and daughter were playing with their cousins and my niece bit my daughter. It broke the skin, you could see my nieces imprint of her upper and lower teeth on my daughter's arm. A few weeks later the vomitting started.

I'm not sure of my trigger. I found out about my celiac after my daughter's diagnosis. In doing my research, I've had mild symptoms my whole life, worse at times, better at other times. Negative blood work, but Marsh 4 biopsy (completely flat)

[gfgypsyqueen]

Great topic!

I was biopsy diagnosed after three years of active celiac problems. Drs said it was female problems, all in my head, and normal. WTF! I lost 50+ lbs, non-stop stomach problems, constantly ill, etc. All of my recent problems started just before I got pregnant. After the baby was born my health took a rapid decline.

The fun part is that I was a very sick baby. Ihave no idea if I got a virus before I got really sickas a baby. Drs approval was required to take me out of the state for a holiday around 6mth of age. I was the scary sick baby - one look and you knew something was really wrong. Over the years I had the "family bad stomach". Developed a variety of unofficial food sensitivites that would coem and go. Certain foods would make me vommit instantly, when I used to be able to eat them no problem. I never saw a connection to Celiacs even though it is in the extended family.

My family is Irish.

My kids have both food allergies and Celiacs. Both kids had colic BADLY! Now looking back I would bet it was a starvation problem with the oldest since I was sick with undiagnosed Celiacs while nursing her. Yikes! The oldest does not have celiacs, just food allergies. The youngest had no major illness before the Celiac symptoms started. It took about 1.5 yrs to get a "Mom diagnosis" of Celiac. Her biopsy was inconclusive, but she has the gene and is responding very well to the gluten-free diet. She gets the rash and diarrhea as a reaction to gluten.

[HouseKat]

Actually I think my dx was delayed because "celiacs are really skinny... you can't be celiac!"

I think my Celiac was triggered when I was in eighth grade. I had a horrible teacher for two classes back to back that made my life miserable. Around this same time, my two closest friends started hanging out with some bad kids, and they all got in trouble for breaking into a house and stealing stuff. I remember being sent home and/or staying home every day for weeks because food was just passing right through me undigested.

Here I am 22 years later, finally having gone gluten free after two other family members were diagnosed with it. Over the years I'd alsked doctors about Celiac, but they didn't think I had it because I was fat.

[HouseKat]

I forgot to include my background: 1/4 Irish and 3/4 German on my mother's side - the side with two other Celiacs - and English and Native American (Cherokee) on my father's side. I also suffer from polycystic ovary disease and vitiligo.

Kate

I think my Celiac was triggered when I was in eighth grade. I had a horrible teacher for two classes back to back that made my life miserable. Around this same time, my two closest friends started hanging out with some bad kids, and they all got in trouble for breaking into a house and stealing stuff. I remember being sent home and/or staying home every day for weeks because food was just passing right through me undigested.

Here I am 22 years later, finally having gone gluten free after two other family members were diagnosed with it. Over the years I'd alsked doctors about Celiac, but they didn't think I had it because I was fat.

[Guest andie]

O.K. Here is a totally off the wall, unscientific approach to the gluten intolerance thing.

We all have an immune system. Some have one stronger than others. Otherwise we would either all have autoimmune diseases, or no one would have any. Right?

Cancer is an autoimmune disease. Everyone produces abnormal cells in the body by the thousands every day. The body recognizes them and destroys them using the immune system. Those cells that are not recognized as abnormal continue to multiple, getting more distorted each time they multiply and become tumors. The more distorted the cell appears under the microscope, the longer the immune system has ignored them.

Would a blood test for an immune response to cancer show up in blood work? Generally no. Because there is no immune response. Does that mean you don't have cancer? No. Too bad it wasn't that easy!

So........... Think about the amount of gluten you have poured into your body over the years.

I believe a true Celiac diagnosis is indeed a true autoimmune response in the body. That yes indeed your body is saying "This is foreign inside me!" and triggers the immune response. This results in severe response. (ie classic Celiac symptoms) Diarrhea is the bodies way of trying to 'cleanse' itself of unwanted substance.

Gluten intolerance, on the other hand, requires some additional recognition by the immune system.

ie. a bacteria or virus attaches itself to the gluten and therefore the body recognizes these molecules as foreign and attacks them. Because the body 'remembers' what it has attacked it builds antibodies to recognize and 'remembers' them for future invasion. (Is this not the etiology of a vaccine?)

So..............If you get a strep infection, for example, and it somehow attaches itself to gluten the body recognizes the genetic code of these molecules. When the strep is gone (antibiotics), the body in some people 'remembers' the genetic code of the now complex glutens and from then on it attacks whatever gluten is placed in its path. For those with stronger immune systems it is a gluten intolerance and for others a 'Celiac' response.

It would be interesting to develop a test for strong vs weak immune systems and compare that to 'celiac' vs gluten intolerance. Would the IgG and IgA test results vary with this data in hand?

So............. A question?

How many people out there have ever had a strep throat? Or Mono? ( Which is a strep infection) Or tonsilitis? (Which is a strep infection)

Please remember, I am just thinking out loud and this in no way reputes any scientific data, nor disclaims anyones symptoms as trivial.

Thanx

Andie

Sorry if this is kind of confusing to read. It is a difficult idea to say in 100 words or less!

Anyone thinking along the same lines?

[Centa]

Hi andie

Interesting thoughts.

I don't know what triggered my problems, but I've always wondered whether it was coming down with viral meningitis. I also read that celiac sometimes crops up midlife, or at menopause. All 3 of those converged for me.

[Rachel--24]

There are definately alot of theories as to why some of us (who do not have Celiac) become gluten intolerant.

Heres an explanation that is a little more scientific.

Mercury is known to inactivate the DPPIV enzyme which is needed to break down gluten and casein. Any enzyme in the body can be blocked by mercury (leading to other food intolerances) but the DPPIV enzyme seems to be particularly sensitive.

This is more recognized in Autism...but it can happen to anyone at any age.

How many of us have (or have had) amalgams....flu shots??

Even without the exposure from fillings (which accounts for 90% of the mercury burden in our bodies) and vaccines...we are still exposed to mercury in the environment...which has steadily increased in recent years.

It should be noted that the converting enzyme for casein and gluten, Dipeptidyl Peptidase IV (DPPIV), is inhibited by mercury at very low concentrations.

A direct mechinism involving mercury

[Guest andie]

Rachel

Do you think this would explain the response and symptoms in children though? None of them have fillings and would they be old enough to have environmental mercury toxicity? Does mercury cross the placental barrier? I suppose an argument could be made for that if it does.

Children are extremely vulnerable to bacteria and virus' because their immune systems are so immature. Some of these children I read about or even the cases of the adults being extremely sick as children seem to start at a very young age.

For the children that are so young, I think we could safely say that they have Celiac disease. For the older adults it seems to have a trigger.

Just a thought.

Andie

[trents]

First of all, I do not doubt that you have Celiac, or at least a leaky gut (which may cause GI issues even without the genes for Celiac) with your family history. You have said that you have not been tested because of cost, but I'm sure it's likely you would test positive. I would not clump you into the "gluten sensitive" but non-Celiac category. I wish I could help pay for your Dx! If I was done school, I would!

All forms of *Celiac Disease* are in fact "genetic" with an environmental trigger, just like all autoimmune diseases. It is not 100% genetic nor 100% environmental, both are needed for the disease to show itself.

I don't know what to make of "The Gluten Connection" book. First of all, this doctor says his son has a "gliadin allegry", then calls it Celiac. This is not the same thing, Celiac is not classified as an allergy. Second, those with Celiac must have the genes to get it based on what we know, period. If he is referring to an "aquired allergy" to gluten, he should not be calling it Celiac Disease.

Second, this is what is off the website: "If you are gluten sensitive, your body does not have the ability to break down and digest gluten, a protein found in wheat, barley, and rye. Your body reacts to gluten as if it were a virus. It launches an immune reaction that can cause or worsen a wide range of chronic health problems."

This is *not* what Celiac is. They are describing Celiac like lactose intolerance, which is not the case. I say they are talking about Celiac because they mention what sounds like an autoimmune response. It sounds like they are confusing Celiac and an intolerance, or don't know the difference between the two.

Is anyone else here questioning this???

The fact is, only 10% of the population has an autoimmune disease of any kind. Thery're not rare, but this book makes it sounds like the entire population has a problem with gluten. Where do they get the fact that "81% of people" are prone to GI? Beware of books that promise you the moon and instant health. I would hate for someone to think they have "Celiac" when they really don't, self treat themselves, and then get sicker. This seems to happen a lot to some people on the board. I am 100% for anyone who wants to be gluten-free for any reason. I jsut want to point out that gluten may *not* be the cause, and people need to be aware.

P.S. Rachel-24, I am with you 100%. Thanks for your post!

I love reading everyone's stories, thank you!

This is why I don't like the term "gluten intolerance" when used for Celiac Disease. Yet, the term "gluten intolerance" has been popularized by the media and seems to have taken hold.

Steve

[Rachel--24]

Do you think this would explain the response and symptoms in children though? None of them have fillings and would they be old enough to have environmental mercury toxicity? Does mercury cross the placental barrier?

Yes....mercury does cross the placenta. This is very well documented. It is also excreted through breast milk.

A large portion of a mothers mercury burden from amalgams is passed on to the child. Mercury levels in babies correlate with the amount of fillings in the mother.

This is BEFORE the child starts getting vaccinated....which furthur increases the mercury load.

You're right... the children arent old enough to have become toxic from environmental mercury but we (as adults) have accumulated plenty. The child isnt protected from that in utero.

For the children that are so young, I think we could safely say that they have Celiac disease. For the older adults it seems to have a trigger.

Celiac is an autoimmune disease....it requires a trigger at any age.

It can be triggered at birth....or it can be triggered at age 80.

Children and adults can have gluten intolerance which is not Celiac...in order to develop Celiac Disease one has to be genetically susceptible.

The difference between Celiac and non-celiac gluten intolerance is not a weaker/stronger immune system...its genetics as well as as other factors.

[francelajoie]

Stress triggered it for me!

The strees of trying to get a Visa so I could move to the United States and be with my boyfriend...now husband!

[melmak5]

Stress. Two very ill family members, working a full time job and planning graduation, working a part-time job, freelance writing, trying to finish a MA thesis.

[GFinChicago]

The fact that I found out that my Husband was having an affair for over a year was stressing me so much, that it triggered it.

[loco-ladi]

I have not visited this part of the forum in a while and just popped in today and here goes my .0000002 cents:

My "trigger" as near as I can tell was the only surgery I ever had, knew I didnt want to have it but at the time it was surgery or death.... I assume I picked the better choice. It took me alot longer to "heal" after surgery and the 6 weeks the dr said it would take actually took more like 6 months. Things got steadily worse after that.

there are things that happened in my childhood and teens that may or may not have been related or "warning signs" so to speak of having celiac disease or GI, I will never know for sure as I refuse to go back on gluten to get a "proper diag". Had mono, D & C depending on the day of the week, pretty much am the same height I was at 12, depression, thyroid issues, weight issues, the list is endless, not to mention I could sleep for days if given the chance (matter of fact during the mono episode I recall sleeping for about 2 weeks!)

I also have scotch/irish in my background through my fathers side of the family but believe I got my gluten intolerant genes from my mothers side... My mothers side is english (britain) with a bit 'o french mixxed in for good measure (and before ya ask, no red hair but I do have a temper I keep firmly leashed lest I hurt someone)