What Do You Think Triggered Celiac For You?

[Guest Doll]

Hi everyone...I haven't been around in some time, busy with school, and I found that this board tends to keep you on here for much longer periods of time than one would like....

Plus, as you can see from my sig. Celiac certainly is not a picnic, but it's not the worst of my "collection" of autoimmune diseases. Type 1 diabetes and Hashimoto's give me much more grief! Focusing on Celiac just doesn't seem right when I have that to worry about...

I do get frustrated with Celiac though, don't get me wrong!

As well, one poster here not so nicely suggested I need to go to the Delphi (?) forum, because I'm Canadian. I remember telling her that I didn't realize that American and Canadian Celiacs had different forms of the disease. I just thought that she was rude, and it turned me off the forum. She was upset because I told her that it was IMPOSSIBLE for a Celiac to react to topical gluten through touch, it has to be absorbed through the intestine. She was describing a gluten ALLERGY, which is very different from Celiac in terms of immunology. She also tested negative for the Celiac genes and antibodies. She might have some form of allergy or intolerance, but anyone can agree that she does not have Celiac, and what she was describing does *not* apply to Celiac. It has been proven time and time again that gluten is not absorbed through the skin, and I have yet to hear one officially dx'd Celiac (not a person with a gluten IgE allergy) say they react to only touching gluten.

But, I did miss you guys, and I did like to discuss research related topics. I recall posting my "2 trigger theory" for Celiac Disease (and all autoimmune diseases). You can search my posts if you want to read more. I always said that gluten is NOT the initial trigger for Celiac, it is secondary. Same goes for all autoimmune diseases. There must be a virus or bacteria exposure as the initial trigger, and only then does your body react to gluten.

My example is this: Kids with the antibodies and genes for Type 1 diabetes are at high risk for the disease, they may or may not get it. Even with antibodies, the children have normal beta cell function, produce normal amounts of insulin, have normal blood sugar, and react normally to a glucose load. They do *not* have diabetes. They do not appear to have active beta cell destruction, so this rules out the idea of constant regeneration keeping up with the autoimmune destruction.

My personal story before I developed Celiac Disease was that I was under MAJOR stress (prone to virus infection), and I was sick with a cold or flu at least once per month. Celiac symptoms for me just appeared in a short period of time (for 21 years of my life I had never reacted to gluten in any way, and I think I was screened at some point due to having Type 1 diabetes.) All of the sudden, I started having the big D 3x per week, I went from a size 7-8 to a size 4, had bone-crushing deep bone and joint pain at night, trouble walking, talking, and balancing, severe fatigue, constant dangerous random low blood sugars, dizziness, nasuea, vomitting, panic attacks, an irregular heartbeat, neuropathy like pain (tingling and shooting pain in my arms and legs), a rash, mouth sores, elevated billirubin, severe depression, and even suicidal thoughts. All of these symptoms come right back even with CC. I now am the "1 in 4000" extremely sensitive Celiac, and react violently with even a trace amount. Apparently this is a rare presentation in an adult diagnosis/presentation, which I know, because I used to scarf down pizza and beer without a thought...it is a shock all-around.

I also have had the same horror stories as you. I was told I had "panic attacks", or that "you're normal". My endo even said that "all people get tired after they turn 18". She also told me I had no problems, because "you're blonde". WTF?!!! Lucky for me, once the GI symptoms showed up regularily, I knew I needed to be tested for Celiac or Addison's. And I demanded to be tested. My EMA and TtG levels were both off the charts positive (I think this is >100). I was diagnosed with bloodwork and based on my clinical presentation. I did have a biopsy though (and I did it awake...I know I'm crazy!). I don't trust the nurses when it comes to my insulin pump. I have heard too many horror stories from other Type 1 diabetics who almost went into comas while under.

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!

1: Am J Gastroenterol. 2007 Jun 15; [Epub ahead of print] Related Articles, Links

Fate of Five Celiac Disease-Associated Antibodies During Normal Diet in Genetically At-Risk Children Observed from Birth in a Natural History Study.

Simell S, Hoppu S, Hekkala A, Simell T, St

[Queen Serenity]

Doll,

It was the birth of my second child that triggered mine. But, this is not the only trigger. Any kind of trauma to the body can bring out the beast. It is a genetic disease. It lays dormant in most people who have it, until an event that hurts the body. After having it for 12 years, I have read all of the research. It sucks big time, and there's nothing we can do! I also have hypothyroidism. Another dreaded effect of having this. I feel for you, though. You have it worse then most. It must be crazy to try and manage a diet!! Anyway, I conducted a survey on this site about Irish heritage and Celiac's, and you would be suprised by the amount of people with Irish genes! I hope that you get some more answers. Good Luck!

Vicki

G.F. 12 years

[Guest Doll]

Doll,

It was the birth of my second child that triggered mine. But, this is not the only trigger. Any kind of trauma to the body can bring out the beast. It is a genetic disease. It lays dormant in most people who have it, until an event that hurts the body. After having it for 12 years, I have read all of the research. It sucks big time, and there's nothing we can do! I also have hypothyroidism. Another dreaded effect of having this. I feel for you, though. You have it worse then most. It must be crazy to try and manage a diet!! Anyway, I conducted a survey on this site about Irish heritage and Celiac's, and you would be suprised by the amount of people with Irish genes! I hope that you get some more answers. Good Luck!

Vicki

G.F. 12 years

Hey Vicki! Thanks for taking the time to read my LONG post! Yes, it is well known that pregnancy can be a trigger for autoimmune diseases. Hormones could play a role here, or being pregnant may make someone more likely to contract a virus through weakened immunity. As we know, all people with autoimmune diseases (Type 1 diabetes, autoimmune hypothyroidism, MS, etc.) have the genetics that make them susceptible to these diseases, and then something in the environment sets them off. Now, various viruses have been implicated in the different autoimmune diseases. I am tying to figure out which ones apply to Celiac. IMResident had posted awhile back with a study that indicated that the adenovirus has been linked to Celiac.

Thanks for being so understanding! Yes, it IS hard to eat! It takes WAY too much time and energy! Counting carbs, figuring out insulin dosages, making sure everything is gluten-free....

Oh well...c'est la vie! What can you do?

As for the Irish heritage thing, that fits into the whole "northern European" genes and Celiac Disease issue. People with Northern European heritage have a higher risk for Celiac Disease and autoimmunity in general. Most people with Celiac are white or have some white ancestors. Places where people are not "traditionally" european but have high rates of Viking invasion also have a higher than normal incidence of autoimmunity. It is also interesting to note that the M1CR gene that is associated with red hair is also linked to poor processing of vitamin D, which has been linked to autoimmune diseases. If you have any blond or red haired ancestors, you may be at higher risk for autoimmunity. It is quite rare in Asians. They seem to not be prone to Celiac. Same for black people who *do not* have any european ancestors.

Please note that I am NOT saying that those with Celiac have 100% European ancestory, or that those who are phenotypically (look) black cannot get it. It's just that the genes for it are found in people who appear to have Northern European ancestors somewhere down the line.

I am not Irish, but I am Scottish, Danish, English, Ukrainian, and Polish. All of my relatives on both sides have light/red hair and blue eyes. I have blonde hair and green eyes. My mom (Ukrainian) has red hair and green eyes.

All of the above areas are quite close to Northern Europe, and it is clear that many people of these backgrounds share the same genetics and/or were influenced by Viking invasion.

That said, I am quite sure there is a viral trigger that plays a role etc., and I hope to find out what!

[SunnyDyRain]

Mononucleosis in 1997, my junior year of high school. Ten years later, I figured it out on my own and demanded to be tested by my GP. It was positive (turns out she only did half the panel), so Here I am 3 months gluten free and only seeing minor improvement. My next step is to see a Homeopathic Doctor to see if I have leaky gut or candidia.

After Mono, I was diagnosed with Epstien Barr, then Depression, and then suffered with Diarriah and hair loss for years. I have been tested for Dematomyositis, Lupus, Cancers, hormone imbalance.

I was referred to a Hematologist by my GP for elevated protien levels. He told me it was an autoimmune disease (he suggested it was dematomysitis), then referred me to a Rhumatologist who told me that I was being tested for "all possible autoimmune disorders" and they all came back normal. Obviously... they missed one!

[celiac-mommy]

Very interesting info!! I am almost 100% Irish, negative for celiac, however my 5 year old daughter is celiac (husband is a French mix and also tested negative) She was completely fine until 2005, in the same month our son was born and she fell at school and broke her arm, was in a cast from shoulder to fingertips for 2 months and in and out of the Dr at least once a week. It was then that she started exhibiting significant symptoms out of the blue! Thank God for our pediatrician who thought to test her right away and a GREAT ped's GI who did her biopsy. Been gluten-free for a year and a half and perfect ever since!

-Rachelle

[Guest Doll]

Mononucleosis in 1997, my junior year of high school. Ten years later, I figured it out on my own and demanded to be tested by my GP. It was positive (turns out she only did half the panel), so Here I am 3 months gluten free and only seeing minor improvement. My next step is to see a Homeopathic Doctor to see if I have leaky gut or candidia.

After Mono, I was diagnosed with Epstien Barr, then Depression, and then suffered with Diarriah and hair loss for years. I have been tested for Dematomyositis, Lupus, Cancers, hormone imbalance.

I was referred to a Hematologist by my GP for elevated protien levels. He told me it was an autoimmune disease (he suggested it was dematomysitis), then referred me to a Rhumatologist who told me that I was being tested for "all possible autoimmune disorders" and they all came back normal. Obviously... they missed one!

You poor dear! Doctors really need to be educated more so they can screen for Celiac sooner. Celiac often presents in odd ways in adult patients, with multiple symptoms affecting all body systems. I hope you feel better soon! Also make sure that you rule out any other autoimmune diseases if you still don't feel better (autoimmune thyroid disease, etc.).

[SunnyDyRain]

You poor dear! Doctors really need to be educated more so they can screen for Celiac sooner. Celiac often presents in odd ways in adult patients, with multiple symptoms affecting all body systems. I hope you feel better soon! Also make sure that you rule out any other autoimmune diseases if you still don't feel better (autoimmune thyroid disease, etc.).

I have had some suspect thyroid issues. My mom is hypothyroid. So I got tested when I was tired all the time. My thyroid was low, but not abnormally. I was put on some synthroid, it didn't do much she didn't feel confedient to put me on any other drugs. I do feel my thyroid is something I need to work on, I'm very overweight... and I have a VERY hard time loosing any. Actually I think my dx was delayed because "celiacs are really skinny... you can't be celiac!"

[wowzer]

I'm not sure exactly what triggered me. I look back over the years of many itchy rashes that were blamed as an allergic drug reaction. I do have a little sister that was diagnosed at a year old with celiac disease. I did have a goiter that was treated with synthroid. I also developed asthma as an adult. I did have 2 biopsies, one came back eczema and the other was spongiotic dermatitis. The natural cure for it was a gluten free diet. I had been complaining about a tingly feeling in my legs for years. That also went away when I went gluten free. I did have blood work that came out negative, but my doctor agreed that I could still have it. I had stopped eating bread and cookies before this. Just didn't eat them not really knowing why. I would buy a package of my favorite cookies, eat one and not bother with the rest. I used to eat more than one at a sitting. I didn't bother with bread unless it was like homemade. Didn't seem worth eating unless it was good. I do think I may have DH. I did have a virus a little over a year ago which my doctor said was the adult version of hand, foot and mouth disease. My doctor agreed that even though my blood work is negative I still could have it. I guess I wish someone had figure it out sooner for me. I have had so many symptoms disappear since going gluten free.

[Ed-G]

I don't know how many are going to roll their eyes, but I started showing symptoms after nine months. I lost weight, developed a distended stomach, and my growth was stunted. I have a brother who wasn't dx'ed until last year, however. He developed digestive problems, especially after drinking beer.

BTW, I am aware if the Irish connectiion with celiac. My ancestry Is almost completely Irish. The only exception is a great grandmother from Toronto.

Ed in MD

[grey]

I think this is a really interesting question. Thanks for opening/reopening it, Doll.

Starting about 16 years ago (I'm in my mid-30s), I have a history of slow healing from surgery/injuries (knee surgery, car accidents) or illness (nasty viral/bacterial bronchitis), profound stress, followed some time later (month or two?) with a 'flare' of my battery of symptoms - fatigue, migraines, and all the neurol., GI; these followed by some improvement or 'remission' after a while. During remission, I never felt good, but I wasn't incapicitated, everything was just hard.

My current 'flare' however, has been the worst, by far, starting probably in jan/feb 06 and continuing on. Starting in October, I really starting dropping weight - I've lost about 50 lbs and I needed B12 more frequently (pernicious anemia), migraines. My primary care md decided that I was really not doing well. I had kind of given up on dx.s, or solutions, and was trying to just make it through each day. My pcp ran a bunch of bloods for possible issues from B12, migraines, and weight loss - and my tTG came back positive.

All my symptoms (and there are a lot of them) fit - I ended up a classic adult celiac presentation with total villous atrophy and severe inflammation (dx May 07). Even though I was in the hospital last week because of malnutrition and malabsorption - 'celiac complications' - I'm definately doing better. I completely ran out of reserves and used my body up - it's a good thing I was overweight or I would have been in the hospital a lot sooner.

One thing that's interesting to me is that I was given a blood test for celiac (I don't know what kind) four years ago, and it came back not showing anything. So, I've clearly done a lot of damage since then. I wish that there were better tests because I could have saved myself a lot of pain and risk if I'd been dx then. I also can't help thinking of all the money I've thrown into the medical system that I couldn't afford.

Oh, and I'm Irish too...

[Rachel--24]

You can search my posts if you want to read more. I always said that gluten is NOT the initial trigger for Celiac, it is secondary. Same goes for all autoimmune diseases. There must be a virus or bacteria exposure as the initial trigger, and only then does your body react to gluten.

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.

Now, various viruses have been implicated in the different autoimmune diseases. I am tying to figure out which ones apply to Celiac.

I'm not sure which viruses are linked to Celiac directly but there has been research implicating Candida Albicans as a trigger for Celiac. As we know intestinal candida can overgrow at any time if the conditions are right....stress, antibiotics, hormonal changes, diet, infection, mercury exposure from amalgams, etc, etc.

In many conditions the overgrowth is temporary and the situation corrects itself...however if Celiac were triggered due to the candida overgrowth...that would not correct itself....and would remain a life-long autoimmune disease set off by consumption of gliadin.

Dr. Nieuwenhuizen, from the research group TNO Nutrition and Food Research, published a paper in the June, 2003, Lancet. He links celiac disease with Candida albicans. Dr. Nieuwenhuizen, knowing the actual sequence of proteins which trigger celiac disease from the published work of other scientists, had searched the databases available to him through TNO to see if the same sequence existed in other places. It turns out the identical sequence of proteins occur in the cell walls of Candida albicans.

These Candida gluten-like proteins turn out to be the yeast's "hypha-specific surface protein" nicknamed Hwp1. This is the yeast's version of Velcro and allows it to attach and hang onto the endomysium in the wall of the intestine. It is also targeted by transglutaminase, the enzyme which acts on the gluten protein and serves as a target for immune antibodies. Candida species which don't have this Hwp1 protein can't attach themselves to the digestive tract.

Basically once candida adheres itself to the intestinal wall it is targeted by the immune system. Gluten, having an identical sequence of proteins can then also become targeted by the immune system.

As we know the immune system doesnt "forget" so if an individual were genetically susceptible to Celiac...the immune system would continue to launch an attack everytime gluten is consumed. The intial trigger was not gluten but the immune system now "recognizes" it as an invader.

You can read more about this here....

Open Original Shared Link

https://www.celiac.com/st_prod.html?p_prodid=859

I'm not sure about other pathogens and Celiac. Its hard to say since candida (being an opportunistic organism) can take advantage while the body is under stress from any other infection or temporarily weakened by antibiotic treatment, medications, trauma, etc.

I'm also in agreement 100% when it comes to wheat allergy and non-celiac gluten intolerance. They are producing a different immune response than what is seen in Celiac Disease.

A gluten intolerance which isnt Celiac is usually casused by leaky gut.....this can also produce serious symptoms...but is not triggering the same autoimmune response. In this case testing for Celiac would always come back negative if the individual is not genetically susceptible.

In this case there would also be a "trigger".....what is causing the leaky gut to begin with?? Its always involving bacteria and yeast....an imbalance of normal gut ecology (dysbiosis). Too much bad bacteria....not enough good.....candida will always overgrow in this environment.

[darlindeb25]

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.

I think it is wonderful that those of you with diagnosis' found good doctors, yet there are those of us who suffer the same disease and never found a doctor who listened or didn't have the funds to pay for needed tests. There is no doubt in my mind that I am a celiac too, yet I do not have a piece of paper that says so. My sister is a diagnosed celiac and our father is gluten free too. For many years, my sis and I both had severe itching, iron deficiency

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

My tummy has always been touchy. I think my trigger was my 2nd pregnancy, he is 30 yrs old now. I spend many a night sick. When I was pregnant with my 4th son, 5 yrs later, everything intensified. My sister lost her first baby, very stressful time. After his birth, I started taking birth control pills and was sick 80% of the time. My family doctor told me I was suffering from some very tough virus. Surprising to us at the time, I became pregnant with our last child. Now, I realize I was not absorbing the birth control pills. I was so ill durning that pregnancy, I lost 40#. My daughter was born with a birth defect, no hip socket on the left side and now, at 24 yrs old, she has intolerance's too.

I have been gluten free now for 7 years. I also am intolerant of soy, corn, nightshades, tapioca, red meats, cruciferous vegetables, and must be very careful with rice and many veggies. I also am surface allergic to wheat, oats, soy, and corn. I now have peripheral neuropathy, just had two MRI's an EMG and a hearing test because of severe tinnitus. I was sick for so long, told it's IBS, colitus, nerves, manage your stress better, I had terrible panic attacks, agoraphobia, anticipatory anxiety--all because I wasn't the average celiac who was diagnosed after 11 yrs. I had been sick for more than 20 yrs when I decided I had to take my health into my own hands. My sister had been diagnosed in March and immediately went gluten free and it made so much difference in her life. So in July of the same year, I bit the bullet and followed suit. I was newly divorced, no money, no insurance, I could not afford and endoscopy and now--there is no one who can make me do a gluten challenge simply to have a diagnosis on paper.

[ravenwoodglass]

My first signs of celiac, ataxia, depression, extreme muscle and joint pain and loss of leg reflexes appeared after I was impaled at the age of four. I was alone and had to pull myself free and then walk to a neighbors for help, I will never forget her face when she came to door.

Then I had mono at 15 which added migraines and digestive problems to the mix, mostly constipation severe enough to impact my intestines with D very infrequently. I remained in that 'state' until my second child was born, then the occasional D became a daily occurance for about 10 years until it became day and night with great pain for an additional 5. During the last year prediagnosis I was told by my DD that the family would understand if I commited suicide. If it wasn't for her and my DS I would have.

During the last 10 years prediagnosis I also developed severe arthritis with resulting joint damage, was diagnosed with parathesias, was thought for a long time to have MS etc. All blood testing was negative and I was finally, when close to death diagnosed by an elderly allergist by elimination diet and this was confirmed by my GI when his prescribed gluten challenge caused extreme illness and a GI bleed. I have been repeatedly blood negative and was tested repeatedly by some of the best hospitals in the NYS. Although I do not show up in bloodwork I am clearly celiac and diagnosed as such.

My sons celiac was triggered by a severe infection at 1 month of age, he basically stopped growing but instead of the doctors trying to figure out why they threated to take him away from me. His was excaberated by the stress of boot camp and training for the 82nd Airborne. He was given a medical discharge after a year because of celiac related problems and because they 'blew out' his knees on one of his jumps after he got to his unit. He did show up in blood work once I was diagnosed and IMHO the services should screen folks for celiac before they are admitted and again after boot camp.

My daughter was triggered mostly by the stress of having to live with someone as ill as I was. I can't count the number of showers or shopping trips or walks by the lake that were cut short by my need for a bathroom NOW or the number of times she would hear me crying or groaning in pain in the middle of the night. She was diagnosed by blood and endo. Her symptoms had resolved gluten-free for 2 years when she again went for testing and was told she was fine. She has been off the diet now for 2 years and while she is still doing well, graduated 2 years early with her BS and is now studing for her masters in nursing, she is aware that she will most likely need to go back on it at some future point. I do not push hard even though I know she is causing damage.

[mftnchn]

I haven't a clue. Allergies were diagnosed when I was about 28 but at the time the doctor was suspicious I had that problem from childhood, or at least high school. Lyme disease also probably dated from about the same time. This was shortly after my second pregnancy. Problems with fatigue occurred off and on, sometimes for a lengthy period. (jr hi, hi school and college all had such periods).

Could have started when I was in grade six and was very ill with mumps followed by a kidney infection and out of school over a month. The summer before that I experienced a highly traumatic emotional event as well.

The symptom that led me to identify celiac is constipation, and I have had that as long as I remember. I haven't had blood tests or biopsy due to location, just positive enterolab, and am awaiting dietary response to confirm.

[uclangel422]

Of course I will never know for sure, but my best estimate was that it was triggered by a bout of food poisoning i had at a Chinese restaurant eating dim sum. It lasted longer than a week and so my doctor thought it was MSG poisoning instead and said it should clear up soon. I was sick for another six months before I convinced him to test me for celiac. I know that I am lucky it only took 6 months.

My heritage is Irish on my Dad's side and Russian Jewish on my Mom's side. It is my mothers side of the family that has all the celiac symptoms including hypothyroid, etc. Although i do not know my Dad's side as well as my Mom's side.

[dally099]

i love this topic, i figure that mine triggered after a hysterectomy i had last year. i had my 4th and finall baby in jan1, 2006 and march 13,2006 i went in for my hysterectomy. i tell ya it kicked me in the ass something feirce, i have never been sick "dont have time" and i was out of commision for allmost 12 weeks even though the doc told me it should only be 2. had a fairly normal summer but in october/november i started to notice that i was swelling all the time and had horrible "D" and stinky and floaty and well you know what i mean. then the aches and pain started in the joints. im a runner so i thought that it was joint pain from over training, but then my energy was gone and i couldnt work out any more by xmas. my hands and face would be soooo swollen in the morning that i could barely breathe some days. i had head to toe hives, this weird looking zitty rash on my thighs, and my hands on the palms were itchy like crazy and had little blisters, the "D" and the joint pain and exuhstion got worse. new years day my hubby had to take me to emerg as my hands had swollen to about 4 times there normal size. not to mention that on new years i weighed in at 109lbs, 5 ft 4.5". but he took me to the doc when by the end of jan i was down to 97lbs. my doc was concerned to say the least, thryoid is normal so i started checking on the web and realized that maybe it was celiac. one doc told me probably not as i wasnt sick enough, but my doc said at the end of feb he would test me, but this was 2 weeks into going gluten free so my bloodwork came back neg. however the change in me by then was evedent and i saw him again in march and i had allmost all the weight back on and was running again (slowly mind you) and just felt better overall, sooooooo i did enterolab and here i am.

im curious to know if anyone else had this happen after a hysterectomy, i had endometriosis since my teens i suspect, lots of cycsts and fertility issues with my first 2 kids (no probs after them with the last 2 though). great thread!!

[ItchyMeredith]

I have DH and I have had only 2 episodes both of which occurred when I was exactly 2 months post partum with my babies. My first episode lasted until I stopped breastfeeding and my second one I am still having (I am still breastfeeding).

I have Irish, English, and Swedish heritage.

[Rosewynde]

Doll,

I've read up a lot on Celiac Disease since the GI doctor told me he was testing me for it. I'd never seen anything on the difference between Celiac Disease and gluten intolerant before so thanks. I found that rather fascinating. I'm also interested in the idea that someone else presented, that you can have minor problems that then go away and come back worse the next go around

I also wanted to say, don't get upset when people don't understand things on here. Most are new to thing and won't understand and/or haven't done research. Even those of us that have don't know everything. Like with most public boards, your better off not letting it stress or upset you, take a bit to respond, and then respond with facts and personal experience instead of pure emotions.

I'm hoping this will help someone out there so i'm going to give a full accounting (sorry for the length). As for what triggered my problems, I'm not sure how far back to go as we don't really know for sure when this all started and what is related to it and what is not. At this point it's all guesswork as to exactly which stomach problems were involved and which weren't. I'll put down what I think is connected.

I've been lactose intolerant to cows milk, and all products made with it, since I was a toddler. I inherited this from my mom, who had very bad health problems since birth, because when she was a child you didn't breastfeed, you fed your child cows milk from a bottle. With both of us and my brother, this intolerance goes up and down. Sometimes a small amount will set it off sometimes we can have huge amounts with no problem. With lactaid pills this problem mostly goes away.

I didn't have other stomach problems till early 20's, before I had kids. I had a really stressful time at a new job and suddenly developed stomach problems. Bending over at all hurt and it was hard to sleep when my abdomen and stomach would get achy and painful. We finally pegged it down to a problem with bloating caused by gas and related to the stress. A bit of Malox and reduction of stress helped this problem go away.

Oddly enough I had no problems with my first child, except getting pregnant to start off with. When I stopped Birth Control pills I had no periods for a while and they found high levels of male hormones, it was diagnosed as Polycystic Ovarian Disease. It was my second child that brought the return of stomach problems. I was 7 months pregnant with my second child and we took our first child to Disney World because of some free airplane tickets. While there i got severely dehydrated and taken to the hospital. They said was low on potassium, gave me pills, told me to drink lots of fluids, and stay in the hotel for at least 1 day. I did the rest of the park in a wheelchair and spent a lot of time feeling weak and dehydrated.

A week after we got home I got better for a few days then suddenly came down with flu symptoms. Diarrhea (mostly undigested falling apart stools), nausea, and weakness. When it didn't go away in a week I called my obgyn who involved my regular doc too. The consensus was a flu bug had killed off my intestinal bugs and they couldn't put me on anything but prenatal vitamins, milk free acidophilus, and a BRAT diet with boiled chicken. This made it get somewhat better but I was still weak and slept a lot. Thanks to family help we managed to make it through. I got worse after giving birth, thanks to lack of a BRAT and Lactose free diet at the hospital and probably the stress of giving birth. Once I got home i started feeling a lot better but kept getting dehydrated. This included at least 2 visits tot he hospital where they filled me with fluids and sent me home.

I stopped breastfeeding at 6 months JUST so i could have the treat me with meds and in the hope that the dehydration would end. My regular doc tried me on Lowmotil (has lactose) which made things worse. Imagine that, a stomach med for diarrhea that actually makes the diarrhea worse. It turns out most of the stomach meds for this have lactose as an inactive ingredient. He then sent me to a GI specialist who told me (after testing) that it was stress induced IBS. I needed to spend some time away from the kids doing fun activities with my husband to reduce the stress. He also had me take Citracel (orange tasting fiber drink) and Imodium A-D to slow the bowels down and go back to a regular diet.

It took three years for the next major attack to hit. During this time I had infrequent problems with dehydration and what I call Burning Stomach attacks, basically having your stomach (upper digestive area) knot up painfully with a burning sensation that eventually travels all the way down. Nothing seemed to help, not even GasX or Malox. I just had to wait it out with ibuprofen. One night I had a major burning stomach attack and started throwing up repeatedly. By 3 am when I still had the dry heaves and was feeling very badly dehydrated, I had my husband take me, kids in tow, to the emergency room. ER did some tests and discovered my gall bladder was full of stones. They told me they had to remove it or I'd keep feeling like this. Once my gall bladder was removed I quickly recovered.

I had no obvious problems for 3 more years, just occasional issues when I over did the Lactose and occasional dehydration, loose stools, and weak spells around that time of the month. Then suddenly this April, just after Easter, I got very sick with flu like symptoms, just like when I was pregnant. Again they didn't go away. I started getting dehydrated even while drinking lots of fluids and electrolytes and had weak spells and fatigue that left me only with enough energy to sleep, read, and use the bathroom, frequently. Add to that the low grade temperature and getting the shakes like i was chilled when i wasn't even feeling goose bumpy cold. I got VERY worried.

I talked to my doctor who tested electrolytes and Thyroid, which came back in normal range. I put myself on a BRAT diet and the doctor put me on Lowmotil, which I took for a month before remembering it had Lactose. The problems, of course, didn't go away thanks to a steady intake of whole wheat toast. I got sent to a new GI specialist (the old one had moved away). This one tested for the usual intestinal bugs or worms and then for Chron's, did a full lower endoscopy and everything looked just fine. On the results from the endoscopy he mentioned the next test was for Sprue.

I started looking up info for Sprue because I'd never heard of this before and came up with a list of Celiac symptoms that exactly matched my problems. In horror I realized, every time I went on a BRAT diet I started eating lots of whole wheat toast and graham crackers because they had no Milk in them and were therefore "safe" for me when I was craving iron. I called the specialists office and asked if i could start a gluten free diet before the testing. I got told it was OK. It took 1 week for my energy level to come back up and my symptoms to start going away. I made 1 mistake accidentally tasting some cookie dough i was making for the kids and BOOM back down to the bottom again. Another week to recover.

They did blood work for the antibodies that week and it came back positive for Celiac Disease the following week. The doctor insisted he needed to do an upper endoscopy to verify, scheduled for the following week. The week after that I was told my biopsies came back with no signs of damage due to gluten but that he'd send me to a dietitian anyways. Insurance denied his request to do a picture pill endoscopy but at this point I'm SURE it's Celiac Disease. I'm not back to perfect yet but 1 month on the diet has shown great improvements and the few mistakes I've made have shown immediate return of symptoms. Funny thing is, my Aunt, who's hobby is genealogy, say she knew it would pop up again. Apparently my Great Great Grandmother had an undiagnosed problem that sounded a lot like this, she could only eat vegetables, meat, and rice. I'm a heinz 57 white european mix of ancestry. With all my mom's stomach problems, I'm sure she has it too. I'm the first in my family to have Celiac Disease confirmed by blood work though.

[cmom]

I'll try to keep my story short and sweet. According to my mom, I had problems becoming dehydrated as a baby. Next, I remember when I was in first grade having to wait on the bus having to go to the bathroom and not making it a few times. Started experiencing stomach pains, diarrhea, etc in high school. Seemed to happen after consuming dairy. Dr. did a barium enema and checked appendix, all normal. Would skip a few months at a time having a period. I was dating at the time and my mom would panic that I might be pregnant but I assured her that I had not had sex. Continued having problems thru college. Would have episodes of (I'm assuming) low blood sugar after standing for a long period of time and people's voices would sound very far away and I would become dizzy and lose my vision. After marrying, had difficulty getting pregnant, miscarried with labor. Got pregnant 2 yrs after miscarriage and felt great. Had some episodes of diarrhea. Breastfeeding went great. Had second baby 15 1/2 months later. Was so sick, I could not breastfeed. Had dark circles around my eyes, diarrhea, stomach pain, vomiting, severe headaches. Dr. FINALLY sent me to GI specialist who performed biopsy and discovered the damage. It took approx. 13 years to be diagnosed. I now have osteopenia due to the malabsorption of calcium. I am SO much better now, however!!!!

[SpikeMoore]

More food for thought/questions

1. Antigens need not be pathogens. Example, type IV hypersensitivity reactions such as bee stings or poison ivy in which the antigen is bee venom or poison ivy oil and it is the same substance that your body reacts to the second time.

2. How do you then explain seronegative patients with positive biopsies that respond to treatment, ie diet?

I think there is a lot we don't know yet. I would propose terminology such as seronegative celiac and seropositive celiac. If we attach celiac to only seropositive cases, maybe the word should be changed because the diagnosis of celiac was around long before the bloodtest was available.

[heathen]

as far as i can remember, my major symptoms started around the same time i began having migraine headaches (approximately age 10) and was allergy tested (with no food allergies). the allergy doc put me on a "headache diet" that basically took out everything BUT gluten foods, and i failed my first math paper and had a lot of emotional breakdowns--then my mom started feeding me again, and i was fine. after that, i had full-blown migraines till approximately age 15 and after that the big D almost every morning. things improved in college until a couple of years before i was diagnosed--the villus atrophy really kicked in.

the only major infections i had in early childhood were chronic ear infections and chicken pox that put me in the ICU when i was four.

[heathen]

but the viral/bacterial angle is interesting...

[Guest Doll]

More food for thought/questions

1. Antigens need not be pathogens. Example, type IV hypersensitivity reactions such as bee stings or poison ivy in which the antigen is bee venom or poison ivy oil and it is the same substance that your body reacts to the second time.

2. How do you then explain seronegative patients with positive biopsies that respond to treatment, ie diet?

I think there is a lot we don't know yet. I would propose terminology such as seronegative celiac and seropositive celiac. If we attach celiac to only seropositive cases, maybe the word should be changed because the diagnosis of celiac was around long before the bloodtest was available.

Good questions!

1.) Celiac is not an allergy or IgE mediated, so the response is very different from actual allergies. That is why I said I am not including gluten allergies with Celiac Disease. All evidence thus far appears to point towards viruses as one of the triggers for autoimmunity. As far as I know, the immune response triggered due to bee stings is quite different from the response to a virus. However, there is no conclusive proof yet to say exactly WHAT the trigger is in any case. Trust me, whoever figures the complete pathology of autoimmunity will be getting a Nobel Prize. Hey, if you've got some spare time on your hands.... ;p

2.) For some reason, a subgroup of people have negative antibodies and a positive biopsy. 2 reasons: The "old" Celiac tests were not so great at detecting all cases. New EMA and TtG blood antibody testing usually correlates very well with the amount of intestinal damage a person has. There are still some people that have an antibody deficiency (usually IgA), and those will test negative on some tests because of that deficiency. The comprehensive new tests are usually still positive in most people even with this deficiency, and the enzymes that are elevated when the inestines are damaged by gluten will still be detected in the blood. That means, with rare exceptions, anyone with actual clinical Celiac Disease should have at least some detectable abnormal antibodies and enzymes in their blood with the new methods.

People with a "seronegative" version could simply have an antibody deficiency, or you may be right in that there are subclasses of the disease.

People with Celiac generally always (presumably) had antibodies in their blood, we just didn't know to test them for these before. Presumably most cases did have antibodies, though. The disease itself has not changed.

[SpikeMoore]

Have you looked at the Apr 2004 study in Digestive Diseases and Sciences? Their study suggests the blood work is not as sensitive as initially thought.

[Crystalkd]

My case is really intersting and I have no clue how long I actually suffered from celiac disease but I think the begining of the major symtoms started about a year and a half agg and then 5 months ago things got to a critical point. I have mild spastic Cerebral Palsy.(Right side) I am mobile have always been very active. About 12 years ago my tremors started getting worse as did my pain and spasms. I was told it was the CP and how active I was. Then about 4 years ago I got pneumonia that almost put me in the hospital. It took me about 6 weeks to recover. After that I started having more D but didn't think anything of it. I had three surgries in three years. The frist one was to fuse my big toe on my right foot. Everything seemed to heal fine but didn't feel right. 3 months after that I broke my left foot in a dirt bike tip over. (I was going maybe 3mph and wearing riding boots.) The fall broke my viviclar bone in two. That was chalked up to lack of muscle tone from the cp. Then my right toe started to hurt more and sure enough the fusion fell apart!!! They went in and fixed it. I was supposed to be 8 weeks down total. At 12 weeks I finally told the doc he had to put me in a walking cast. After 5 months of that I was finally able to walk around with out anything. About 6 months ago I noticed that my tremors and jerks were getting worse and starting to interfere with daily activity. I had called the neuro and was going in the next morning. Shortly after that phone call I started having problems talking and was quickly getting weaker. The next morning I had NO energy and my upper body would shake when I tried to talk. I was forgetting words and losing train of thought. The first though was stroke or brain bleed so I spent all day in the Dr.s office. All test were normal. They wanted to put me on Zanax which I refused. In the weeks leading up to this I was feeling better than I had in a long time. The last thing I wanted them to do was drug me up agian. I then went to a stroke dr for a 2nd opion and was sent to the ER where they did another CT and a failed LP. I went to a homeopath who said stroke, the speech therapist said stroke but the neouro weren't saying stroke. They then said it was stress and I told them they were crazy. I was out of work for a month because I was so weak. My main neuro sent me to a shrink and even the shirk said something was wrong with me. At first I was eating fine and my weight was normal. Then I started having D everytime I turned around and lost 16 lbs in 4 weeks. I started at 132lbs. My neuro finally admitted something was wrong and then sent me to a internist but during all this I had begun to research docs that knew more about CP so I had made a few changes there. My new GP sent me to a GI that INSTANTLY thought about celiac disease. He ran a panel twice and they came back in a gray area as did my biopsy. I don't produce enough of the antibody. I've improved and my weight has stablized on the diet. I feel better now than I have in a long time.

(sorry it's so long.)