Your Personal Celiac/gluten Intolerance Story

[emcmaster]

I know various people's stories from reading various posts over the last 8 months, but I think this would be a great place to gather ALL the stories. I am interested to see how others were diagnosed, how long they were sick beforehand, how quickly their symptoms disappeared, how supportive their family was, etc.

I'll start.

No symptoms until after Christmas break my freshman year of college. I started getting painful, wild bloating and really bad stomach cramping. I had C although I hadn't noticed it at the time (what normal person pays attention to their pooping habits? Not me). After going to a buffet of doctors and none having a clue besides that I needed to take fiber & laxatives, I found an ad in a magazine for Zelnorm for IBS with C. I brought it to a doctor and told him that was what I thought I had (as my symptoms matched those listed on the ad), so I got a prescription for Zelnorm, started taking it and loads of fiber and MiraLax and felt better. Over the summer, I went on a crazily restrictive diet and wasn't eating really anything with gluten (although I'm sure I was getting glutened regularly). I felt much better, but by fall I was starting to feel badly (even though in retrospect I was eating a very low-carb diet and therefore getting less gluten than I would have been). I found a website that advocated an "IBS diet" that cut out all fatty foods, dairy, caffeine, basically anything hard-to-digest. I started following it and felt a lot better, but I still had really bad days and over time, the diet stopped working although I could tell I was definitely intolerant to dairy and fat. My symptoms got worse and worse to the point that I didn't have a single good day in over 6 months. I was seeing doctors all the time (and even suggested celiac to one of them who claimed it wasn't even a possibility) and had an endoscopy and colonoscopy that my doctor claims didn't produce any results. The only time I felt good was when I had to go on a liquid diet for 3 days to clean out my system (as I'd become so irreparably C that I was actually full of poop). After 3 days, I felt pretty normal... until I started eating again. Finally I had a dietician friend on a message board tell me that I should try going gluten-free just to rule it out. I decided that it couldn't hurt anything and went gluten-free and within 3 days I felt almost normal again. After a week I felt even better and after 6 months, the days of painful bloating and cramps so bad I was sent to the ER were a bad memory. I started seeing a naturopath that told me that my dramatic success with the gluten-free diet was a confirmation of celiac, as far as he was concerned.

I am a 'thankful' celiac. I tried so many things for years and this is so much easier than all of them - and it works!

So, let's hear your story!

[Audiori J]

My story I posted in another thread, here it is again with a few updates;

Heres my symptoms, in order by when they started;

Childhood;

Bad tooth enamel (cavities)

Aches and Pain in my legs at night

In my Teens add on;

Sinus issues

Insomnia (When I finally get to sleep, I have a hard time waking up)

Anxiety

Allergies

Angioneuroedema (allergy to aspirin causing facial swelling)

Lack of weight gain

TMJ or jaw popping

Migraines

Occassional canker sores

In my Twenties add on;

Always cold

Dry Skin

Dehydration

Periods of Depression

In my Thirties add on;

Fatigue

Back Pain

Alternating Constipation/Diarrhea

Cramps after eating

Then lately add to the list;

Intermittant Lactose Intollerance

And lastly and this is a weird one, I have what I thought was a skin allergy. I would go outside and put my arm through a fence to pet my dog and anywhere my arm touched the wire fence I would get about 5 minutes later red, itchy welp lines. Then it started happening at night if I scratch my arms or back, the welps would form where I scratched. And it would cause more itchiness. I was thinking this may be in association with dermatitis herpetiformis. It even happened on my thumb and finger the other day when I opened a bottle. I can actually slightly run my fingernails across my forearm and sit and watch the welps appear.

*** Turns out this is Dermatographism or dermographism.

I went to an allergist to get tested for specifically food allergies, they did the 135 pin pricks in the arm test; woohoo. But they chose to do all airborne allergies instead of foods, found I had a slight allergy to mold and grass and thats it. (Which I already knew, I wanted tested for foods. pffft doctors.) But while looking into why I had severe sinus issues they found out I had a maxillary sinus cyst that required surgery, I was put under and they did the surgery through my mouth. This caused a dislocated jaw on the side where I have the TMJ. This caused extreme severe joint pain. I was in more pain than the doctors acted like they thought I should be in. It was severe 24/hr a day pain, I couldn't think or sleep. I went to a TMJ specialist and now wear a splint that alleviates that issue.

Long story short, I believe most of my issues are caused by Gluten. I believe my TMJ and dislocated jaw issues were made more severe by just an already present sensitivity to joint pain. The Angioneuroedema may not be related but I didn't always have that issue it came on around the same time as the sinus issues because I used to take aspirin for the sinus headaches.

I was planning on having the blood test done, but because I am pretty convinced Gluten is the issue I have started to change my diet already. I used to crave Pasta, Bread and Cereal.

One last thing with my Migraines, I usually start burping before the Migraine comes on, after it comes on I get nausea which is followed by vomitting bile. The doctor I go to for Migraines says this is normal for Migraines. Which is true, but its not normal for humans. It tells me its digestive related.

I have not been tested for celiac yet....

The first week being Gluten-free I had burning sensation on my skin, small headaches, a lot of fatigue, yawning uncontrollably, and a larger appetite.

[emcmaster]

Audiori J, thanks so much for posting your story! I am so glad that you think you found your "answer" to all of your horrible symptoms over the years - you poor thing! I consider myself really lucky because it was only a few years between the time my symptoms started and when I went gluten-free. I hope that you are doing well on the diet!

[ptkds]

Well, I am not sure of when I really started getting sick. I believe it was shortly afte my 2nd dd was born 6 yrs ago. I went to my OB for my yearly check up and I told him I seemed to have lots of diarrhea. So he referred me to a GI. He ran blood tests and decided to do a colonoscopy. He found pre-cancerous polyps in my colon, but nothing else showed up, and the blood work was normal. So I was just told to live with it. Then I had dd #3 who is now 17.5 m old. When she was about 14-15 m old, she kept having diarrhea and tummy aches, and she has a diaper rash that wouldn't go away with any treatment. I thought that maybe she had a lactose problem, so I took her off of milk, even cooked milk. It didn't work so I did some research and learned a little about Celiac disease. So at her pedi's appt, I asked her about celiac disease. The pedi agreed it would be a good idea, so she ordered the test. It came back positive, so she referred us to a pedi GI. That dr didn't think it was celiac. He called it "toddler diarrhea". So we did as he suggested with no results. We scheduled a endoscope and biopsy for dd, and I went to my dr. and requested to be tested for celiac. Then my results came back positive. I decided not to put dd through the endoscope since 2 positive results was pretty hard to deny! So, here we are. My dd has been gluten-free for a few days, and I haven't been able to get off gluten yet because I am waiting for my food orders to come in!

ptkds

[Adelle]

Ok well I've always been emoootional (DX'd major depression, bipolar, borderline personality disorder). When I was 16 I started feeling reeeeally tired. I cut school so I could sleep, I ended up graduating early and moving in with my girl friend at the time. I was too tired to do anything. I started having HORRIBLE acid reflux. I would puke bile. Was going to doc's the whole time. I went to a GI, he did an upper GI and said I was "fine". I couch hopped, slept in my car, finaly came back home. That's when my mom finally believed me, she saw my joint pain, headaches, extreme fatigue. When I moved in w my not-husband ryan. I went to therapy (my 4th therapist, every doc kept telling me it was all "psychosematic"). My therapist was the first "professional" who believed me. He contacted my current doctor (my 11th in 6 years!) and told him it was NOT psychological. That my stress was caused by my illness, not the other way around. I ended up nearly bedbound. About a year ago I started getting SEVERE pain in my feet. I felt like I was having my feet amputated. The doc said there was nothing he could do. I was so tired. I was diagnosed with sleep apnea, but the CPAP didn't help. I did an internet search after the 10th doc gave up. I finally found a blog about celiac. I went gluten-free that day. My doc said my bloodwork was "borderline positive" and there was plenty to eat w/o gluten.

I'm healing slowly, having setbacks to overcome, but I'll NEVER eat gluten (on purpose) again!!

Well that's my story I'm loading up on vitamins, trying to get outside as much as I can, de-stressing, etc. I'm trying to save $ to see an acupuncturist....

Oh man, sorry it was so long!

[SchnauzerMom]

I always had a problem with constipation when I was a child and if I remember correctly I had a sensitive stomach, got upset easily. In the last 15 years or so my major symptoms started. I kept getting cramps and alternate diarrhea/constipation. I would also get depressed and moody. I was tired all the time. The last couple of years I started having acid reflux. I was beginning to wonder if I had stomach cancer. I had a general feeling of just feeling bad. Hard to explain, I just felt like crud. The doctor said I had IBS. Also had a lot of problems with gas. I started reading about celiac and the gluten free diet and decided to try it because when I read a list of symptoms I had so many of them. Since I have been on the gluten free diet my acid reflux is gone, the gas is pretty much gone, the alternating d and c has eased up. I don't get depressed as easily, don't feel tired all the time and I don't have that general sense of feeling bad. Eating gluten is not worth it. I can live without it.

[nanafur]

All of my life I had digestive symptoms, lactose intollerance also irritability and anxiety. In my early twenties stomach trouble turned downright painful with horrible gas and cramping. Diagnosed with Irritable Bowel. Devleloped worsening allergy symptoms and multiple food allergies. Mid twenties muscle cramping and nerve pains began. I was a mess.

My doctor told me repeatedly that it was all in my head and that it was just part of getting old. Said I had arthritis like it's normal for a 25 year old to have bad arthritis. Advised me to take 4 ibuprofen every 4 hours as needed for pain. I got used to it. Slept proped up with pillows so I wouldn't move and wake up in horrible pain.

Late twenties body pain and fatigue got out of control. My tummy troubles went from bad to worse. I was scared, I had 3 panic attacks. My doctor asked me to see a therapist for somatization disorder. I was terrified that I was losing my mind. I was worried that I would lose my job if I didn't get better. My friends were angry with me for always being sick, said that I was a hypochondriac. Started getting acid reflux bad, noticed that it was worst after eating bread and went to the doctor. Doctor told me that it had to be coffee that bread cant do that. It got worse, I knew it was bread. Talked to my allergist and she advised me to quit wheat immediately.

I quit eating all gluten in February 2006. Felt really sick at first like a drug addict. On the third or fourth day gluten free I woke up and couldn't feel my arms and legs. Swore I had finaly lost my mind. Then I realized that I could feel them, they just werent in pain. Turns out I had such bad bone and muscle pain that I thought I went numb when they stopped. I started feeling really good, everyone said I looked better than ever. Lost a whole bunch of water swelling right away, turns out my baby face was from food intollerance.

Started sneaking gluten around my birthday and was ok. Snuck more for my wedding and then a little more while moving. My feet started aching and my muscles got tighter, but I kept sneaking. Then the pain returned in full and the tummy issues came back. Immediately went gluten free again and haven't gone back, I wil never forget the pain. Much worse now that I haven't had it for a while.

Blood tested for celiac about a month after going gluten free the first time and was negative. Entrolab tested 2nd time and had two copies of same gluten intollerance gene but no celiac genes. My mother had lots of teh same problems as me. Was miserable and depressed her whole life. Developed cancer in her 30s and again in her 50s. It was too much for her and she took her own life.

Im so happy everyday to have a special diet and know that I will never end up like my mom. Just wish I could have figured it all out 7 years ago, it may not have been too late.

[dragonmom]

In February of 2004 I felt so bad that I called my daughter at work to have her take me to the doctor. I was doubled over in pain, was sent to emergency room. I had a very bad case of kidneystones, they put a stent in to clear the blockage and I went septic..6 pints of blood and 4 days in the intensive care unit I found out that I was going to have a hystorectomy (?) in March. I went back to work in June and was sooo tired , thought I was just getting over all that other stuff. I have been heavy my entire life- I was loosing about 5 pounds a week, I was hungry and would eat but was full really fast. Had diarea , but that wasn't unusual for me have had it for years, also asthma, bronchitis , sinus problems. I went back to my Dr. for my 6 month check up , could hardly stand up straight and had lost around 60 pounds. She sent me to have a bone scan and lucky lucky I have osteoperosis. She also ordered a bunch more tests and had me go see my GI DR . Teitlebaum. Well, I thnk she was the only one who even looked at my pile of tests and notes. She said my blood tests were positive for Spru back in Feb. This is now August. I have all the tests and biopsy and low and behold I have Celiac Disease. The sinus es are better, ashtma better,basically pretty good except for the osteo and celiac disease. That's my story and I'm sticking with it. ( I have also gained every ounce of weight back) darn.

[LYNN21]

In February of 2004 I felt so bad that I called my daughter at work to have her take me to the doctor. I was doubled over in pain, was sent to emergency room. I had a very bad case of kidneystones, they put a stent in to clear the blockage and I went septic..6 pints of blood and 4 days in the intensive care unit I found out that I was going to have a hystorectomy (?) in March. I went back to work in June and was sooo tired , thought I was just getting over all that other stuff. I have been heavy my entire life- I was loosing about 5 pounds a week, I was hungry and would eat but was full really fast. Had diarea , but that wasn't unusual for me have had it for years, also asthma, bronchitis , sinus problems. I went back to my Dr. for my 6 month check up , could hardly stand up straight and had lost around 60 pounds. She sent me to have a bone scan and lucky lucky I have osteoperosis. She also ordered a bunch more tests and had me go see my GI DR . Teitlebaum. Well, I thnk she was the only one who even looked at my pile of tests and notes. She said my blood tests were positive for Spru back in Feb. This is now August. I have all the tests and biopsy and low and behold I have Celiac Disease. The sinus es are better, ashtma better,basically pretty good except for the osteo and celiac disease. That's my story and I'm sticking with it. ( I have also gained every ounce of weight back) darn.

[debmidge]

on behalf of Husband

1) Ill at age 27 - constant diarrhea gas bloating; massive weight loss

2) At age 27 started seeing various gastro drs. - all diagnosed IBS/colitis/ileitius

3) At age 27 Veteran's Administration Dr. accused him of using drugs and that's why he was sickly and thin

4) At age 28 saw private doctor - see item #2 above. Told him to "eat more" to gain weight. Weight went from about 180 (see photo on left) to 128. You'da thunk the doctor was alarmed over this sudden and serious weight drop.

5) from 28 to age 53 saw various gastros and GP's - see #2 above; however a new gastro introduced the idea that he has "psychological" problems with food. Body was eating fat and muscle mass due to malnutrition that all doctors were missing.

6) Gained about 15 lbs. but still had constant and non stop celiac disease symptoms from age 28 to 53

7) in 2003 he took turn for worse and went back down to 128 with non stop diarrhea again

8) 2003 celiac disease diagnosis

9) body is damaged, irrevocably from the effects of misdiagnosed celiac; took terrible toll on him physically and mentally. Gained many celiac disease related diseases which affect his quality of life.

As for me I'd like to sue see #5 above but it's not up to me; my husband is too weak to care.

[Marlene]

This thread is very interesting. I can't believe how many of us were diagnosed with "IBS"! Anyway, here goes:

Childhood:

Occasional problems with constipation and diahhrea

very nervous and anxious

unco-ordinated in most sports

around age 8 developed a mild speech impediment (stuttering -- I am convinced this is gluten related)

night terrors

Late teens/ twenties:

Increasing problems with constipation and diahhrea

Upset stomach

increasing night terrors

Thirties:

diagnosed with IBS due to increasing gastro symptoms

develop lactose intolerance

depression

night terrors and anxiety

Forties:

Carpal tunnel syndrome, tingling in hands and feet

Suffered from bouts of diahhrea lasting weeks at a time (told by doctor that I had a nervous tummy and should take the afternoon off from work, also told "a lot of people live with diahhrea everyday and THEY manage")

Many other gastro issues intensify such as gas, bloating, gross floating stools

Continued to see gastro enterologist for 4 years, did numerous tests and he finally suggested counseling.

Gall bladder removed due to malfunction (did not have gall stones)

Became much worse after gall bladder removal, lost more weight, became malnourished

Began investigating gluten intolerance at the suggestion of my boss

Continuing anxiety and panic attacks

This past September:

Diagnosed gluten/casein intolerant through Enterolab.

Have been on the diet since July and doing sooooo much better, still really struggle with anxiety and cannot handle any stress (as I type this I am basically bent over my desk at work due to pain brought on by stressful situation here.)

I'm upset that it took so long to figure out what I have and that I had no help whatsoever from the medical community. However, I am thankful to finally know what is wrong and begin the path to healing!! Finally!!

Marlene

[Sophiekins]

I was what my Mom calls a leaky baby - burped, pooped, spat, vomited, etc. at every possible opportunity (I know all babies burp, poop, spit, etc, but I did it to the point where my mother couldn't touch me after she'd gotten dressed for work, or she'd have to change. . .again). Was reasonably sturdy and healthy through childhood, and around age eight began to regularly crap my pants. . .embarassing to say the least. Dr recommended counselling and regular bathroom visits. . .thus starting a 17 million-a-day poop habit. . .

Around age twelve began to display a symmetrical, blistery rash on forearms and fronts of calves, several Drs, including two dermatologists diagnosed "neurodermatitis". . .in other words "all-in-your-head-itis" and prescribed steriod creams to "soothe the itch". What itch? (It happened so gradually that I never noticed I was itchy until I went gluten-free!) That summer had Micoplasma - a "gateway" viral infection. . .it basically flattens your immune system allowing you to get other illnesses - followed by pneumonia, whooping cough, scarlet fever, more pneumonia, chicken pox, more pneumonia and the flu. I was sick an entire year. Then I started to vomit, without warning. Drs attributed it to a malformed valve in my esophagus which I've had since I was a baby, chalked it up to "stress" and recommended I scale back my extracurricular activities and that my parents attend classes to learn how to motivate their children without causing stress (my parents were never stress-inducing! Ever!). Over the next five years, the vomiting and skin rash grew worse (the rash spread up my arms and legs, across my stomach and breasts, and progressed to the point where there was less skin on my limbs than lesions), and I began to get incredibly painful stomach cramps - but just for a few minutes a day, was bloated (though I just thought I was fat), needed upwards of 14 hours of sleep a day and was still dragging myself around. I'd always been moody with obsessive-compulsive tendencies, but these got worse, as did my temper; likewise, I'd always been completely uncoordinated (I have the dubious distinction of being the only one of my phys. ed teacher's 1200 students to have had six years of her class and not once hit or caught a ball) but started getting dizzy and short of breath - I'd jump up and down a couple of times and nearly pass out. Went to the dr. . .can anyone guess what they said? All together now, "It's all in your head!"

Now sixteen and with senior prom approaching rapidly, my mom finally saw exactly what my body looked like when we went shopping for my prom dress. She freaked and declared war on my doctors. It was really quite impressive to watch (if, that is, I had had the energy to actually pay attention to what she was doing). Finally (six weeks AFTER senior prom) my mom got me in to see an allergist, who tested me for every allergen he could think of, from trees and grasses to beans and grains, fruits, vegetables, etc. After a consultation with a nurse, and some snickering from Dr and nurse about my inability to blow hard enough to provide them with a lung function sample, the Dr came back into the room and said "Congratulations. You're not allergic to anything." You could practically hear my mother boiling. "But," said the Dr "To stop you going to the acupuncturist and the naturopath and the faith healer, I'd like to run some blood work." So we headed off to hospital, had the blood work done and settled in to wait a week for the results. In the meantime, I had my wisdom teeth surgically removed and went on a liquid diet. . .mmmm mom's homemade milkshakes. . .

The week finished and we got a call from the allergist's office. The test results had come back. They seemed inaccurate and the Dr would like to repeat them. Could we go back in and have the tests run again? We did, and the next day we went in to see the allergist at his office again. My how different the experience was! He came in, quite subdued, and sat down. "I am so very sorry," he said. "I don't understand how I could have missed this. You have Celiac Disease." My mom got this cat-cream look on her face as he ate humble pie at great length, and explained that my blood work had come back (twice!) with the highest numbers they'd ever seen at the hospital. I was, he said, about a week away from being hospitalised. They started me on a gluten-free diet immediately, and I've never looked back. A dermatologist biopsied my skin and determined that yes, I do have DH, although it is the strangest-looking DH anyone has ever seen. They decided against a gut biopsy on the feeling that the required gluten challenge would be dangerous.

Six years on, I still have a few slow-healing skin lesions (I've never taken any drugs for my DH) and a whole bunch of scars (outside and in, physical and psychological). I have permanent intestinal damage, perpetually purple toe- and finger-nails, sinus problems, and an intermittent stutter, not to mention debilitating migraines, projectile vomiting, and epileptic episodes when I accidentally eat gluten. But I'm no longer dizzy, I've lost about forty pounds, I'm happy to get six or seven hours of sleep a night, and I have more energy than I've ever had in my life. So what if I dream about bagels. . .life is good.

[ana]

This thread is very interesting. I can't believe how many of us were diagnosed with "IBS"! Anyway, here goes:"

I find this so interesting, we've pretty much all had the same experiences. My mom just told me I was had a diagnosis of failure to thrive as a baby, a home nurse would come and visit mom on a weekly basis to check on what she was feeding me, mom was offended, she felt they were accusing her of not feeding me. I cried a lot and never gained weight until puberty. I'd always had the runs most of my life, i'd fix it by eliminating things.. mom always thought i had a nervous stomach, it was due to nerves. in my teens and early 20's i'd have constipation and runs alternatively. It waas just the way my life was, i thought. didn't everyone have that issue??

I was diagnosed with IBS in my 20s, but that was after losing hair, had dermitis all over my face, neck, arms and legs. I think that skin disorder was the most miserable part of the whole thing. it's a badge of there being something wrong, at least with the stomach issues you can not talk about it to people, you learn to hide it. .. pretend that pizza doesn't bother you and eat it when your friends all go out for it and live with the pain later.

I was able to be clear of symptoms at times because i was diligent about keeping my diet low fat, free of milk, free of what ever i suspected as being my problem. I ended up in the ER twice due to something i can't really identify as causing the anaphalaxis episodes.. i'd eat pizza and had an asprin, they decided it was the asprin that caused it.

i'd go on cleansing diets and be ok for a while. this last bout i've had, i think was stress related and it was the worst case of the runs i'd had since i was 18. my nephew was officially diag. with celiac, and i'd never heard of it in my life. so i looked it up and what do you know, i had half of the symptoms. talked to a new doctor about all this and he said yep, you have it, i see this blood panel and even without the biopsy he's sure it's clear cut in his mind. I am scheduled for a biopsy on Dec. 8th and think it will be more to see what my gut is looking like.

[cmom]

My mom says I became dehydrated as a baby. In first grade, I would have to walk to the bus stop and invariably have to go to the bathroom. Mom would get aggravated about this. Once I didn't make it back to the apartment in time and she had to take me to school. Things got better until high school when I began having problems again. My senior year, I kept one of those huge bottles of Pepto Bismol in my locker. I would take a big swig between classes. I felt bad alot so the dr ordered a barium enema!!! YEE HAW!!! It showed nothing. Had some problems in college. Went to another specialist who did a Pap smear, barium enema and sigmoidoscopy. Nothing again. I learned not to eat if I was going out so I wouldn't have to go to the bathroom. Was finally sent to a psychiatrist. He felt it was stress related. When I told him I couldn't afford him, he sent me to his assistant who said it was stress and told me that she relieved hers by not shaving her armpits or legs! She sent me to a chiropractor/witch doctor who told me I had a kidney about to fail and she put me on papaya enzymes. Didn't get any better. Got married. Had a miscarriage. Took 2 years to get pregnant again. Had 2 sons within 2 years. Got so ill I could not breastfeed the youngest one or leave the house without having an accident. I would go in my pants when I sneezed or picked up my sons. Went to doctor. Another barium enema and sigmoid. Nothing. FINALLY, got sent to a GI in another city who diagnosed me with a biopsy. OH HAPPY DAY!!!! I know I have left out some drs and tests but this is the gist of things.

[RiceAddict]

A lot of my story probably does not directly relate to Celiac, but who knows? Still it is MY story, so here it goes:

I was always the kid that never got sick at all. I was a very overweight boy. At age 13 I suddenly lost 30lbs and was diagnosed with type I diabetes. I slimmed up and have been slim the rest of my life. No more problems really until 15 years later.

I was in graduate school in Calif and was tired all the time. I figured that since I was sitting on my butt all the time studying and not getting regular exercise and having a poor diet (few fresh fruits, veggies and meats) that explained it all in my mind.

I got a job overseas in New Zealand where I lived with local families. They basically eat a British/European diet with full breakfast, morning tea (snack), light lunch, and full supper always with a desert. The first 24 hrs in NZ I ate about 6000 calories and got sick as a dog. I gradually convinced those around me to stop feeding me so much and that I was not trying to be rude. No matter how much walking I did it just seemed to make me worse.

I came back to the US last December and got a job here in Iowa. Had a severe low blood sugar attack in Feb (first one of my life) and went to the ER. My BP was through the roof. Lots of tests, sent to the Mayo Clinic in Rochester, MN. Found out my kidneys were totally shot and was put on the kidney/pancreas transplant waiting list. Went on a very strict renal diet. During all this I had 12 weeks of neutropenia where my white blood count went down to 400 (down from 6000+) Still never figured out what that was all about but in 1 week went back to normal. Head scratcher.

I have continued to have severe low blood sugar attacks that were unexplained. One Dr thought delayed gastric emptying was the culprit so sent me to GI. They did an endoscopy and blood work. (sidebar, that night I fell and broke my wrist) Next day he said gastric emptying was not that bad but found Celiac by accident. That was the first I had ever heard of the disease.

That was the Friday before Thanksgiving so still trying to figure everything out. Since then I have had 2 low blood sugar attacks, both requiring an ambulance one resulting in hospitalization. Arm is in a cast and go in for a bone density scan next week. As far as Celiac symptoms go, I felt really bad, mostly in the mornings. Tried sleeping pills and had no effect. No appetite, sometimes eating once in 48hrs. Weight loss. Anemic (but could be due to kidney disease??) some diarrhea but not much, dry heaves especially in the AM, mild stomach pains and a big increase in gut noises.

So now I am on a diabetic, renal, gluten-free diet. AKA-Rice Addict!

[SanteeBay]

I know various people's stories from reading various posts over the last 8 months, but I think this would be a great place to gather ALL the stories. I am interested to see how others were diagnosed, how long they were sick beforehand, how quickly their symptoms disappeared, how supportive their family was, etc.

I'll start.

No symptoms until after Christmas break my freshman year of college. I started getting painful, wild bloating and really bad stomach cramping. I had C although I hadn't noticed it at the time (what normal person pays attention to their pooping habits? Not me). After going to a buffet of doctors and none having a clue besides that I needed to take fiber & laxatives, I found an ad in a magazine for Zelnorm for IBS with C. I brought it to a doctor and told him that was what I thought I had (as my symptoms matched those listed on the ad), so I got a prescription for Zelnorm, started taking it and loads of fiber and MiraLax and felt better. Over the summer, I went on a crazily restrictive diet and wasn't eating really anything with gluten (although I'm sure I was getting glutened regularly). I felt much better, but by fall I was starting to feel badly (even though in retrospect I was eating a very low-carb diet and therefore getting less gluten than I would have been). I found a website that advocated an "IBS diet" that cut out all fatty foods, dairy, caffeine, basically anything hard-to-digest. I started following it and felt a lot better, but I still had really bad days and over time, the diet stopped working although I could tell I was definitely intolerant to dairy and fat. My symptoms got worse and worse to the point that I didn't have a single good day in over 6 months. I was seeing doctors all the time (and even suggested celiac to one of them who claimed it wasn't even a possibility) and had an endoscopy and colonoscopy that my doctor claims didn't produce any results. The only time I felt good was when I had to go on a liquid diet for 3 days to clean out my system (as I'd become so irreparably C that I was actually full of poop). After 3 days, I felt pretty normal... until I started eating again. Finally I had a dietician friend on a message board tell me that I should try going gluten-free just to rule it out. I decided that it couldn't hurt anything and went gluten-free and within 3 days I felt almost normal again. After a week I felt even better and after 6 months, the days of painful bloating and cramps so bad I was sent to the ER were a bad memory. I started seeing a naturopath that told me that my dramatic success with the gluten-free diet was a confirmation of celiac, as far as he was concerned.

I am a 'thankful' celiac. I tried so many things for years and this is so much easier than all of them - and it works!

So, let's hear your story!

[SanteeBay]

I am new to all this and love to read others story's, so here goes mine.

As I remember back to my childhood the only thing I can recall is having major leg pains that my Mom said were growing pains. I assume she was right since I grew to be 5'11". As I got into my teens I had loads of ear infections that needed tubes to be put in my ears. I also started having pain in my right sacroiliac joint on a nonstop basis. I have had 6 children so the infertility thing didn't happen to me. I started being anemic about 6 years ago and was told to take my iron 3 times a day and guess what? My iron level didn't go up. Finally about 3 months ago I was terribly fatigued and went to my primary doctor who sent me to a hematologist to figure out the anemic thing. He assumed I was bleeding somewhere inside and ordered Cat scans of my insides but they were all normal. I had a PICC line put in to receive intravenous iron and then he sent me to a gastroenterologist to get a colonoscopy. Well instead of a colonoscopy first, he did an endoscopy to see if I had bleeding ulcers. I did have multiple erosions in my stomach from all the years of taking NSAIDS for all my pain. But he also said my intestines looked like I had Celiac. He did a biopsy and the blood work and both came back positve. I was like what?! Now we know why I haven't been able to absorb iron, why I have lost about 25 pounds in the last several months, and why I have pretty much felt terrible my whole life. I certainly didn't want to stop eating the things that make us Celiac's sick, but I must say it is worth it. I have had such a positive diet response, I couldn't go back to eating gluten. It can't be all bad if I can still eat See's candy!

Melanie

[Rebecca47]

I was born 7 weeks premature and weighed a whole 5 pounds and was 17 inches long. I was born with a lazy rt eye and had pneumonia at 9 months. I was anemic on and off all of my life. When I was about 3 yrs I was really sick and they never could figure out what it was, I was always the littlest in the class skinny little thing as my mom would say. I went to doctors for really bad pains doubling over at 4 yrs and they told my mom it was nerves. eye surgery at 10 yrs. then when i was a teenager i was having pains again and my GI told my mom it was gastro problems.So eat eggs and light things for a few days and I would get better. Nothing major for years, except for anemia. Migraines for about 20 years,after the birth of my son. He is 25 now. then a few years back i went camping and thought I had caught a parasite and went to my doctor we couldn't find anything. So I have had Chronic "D" on and off for a while for hte last few years., then in July of this year I had the big D for two weeks straight and my doctor did stool test and she called and said I needed more test right away and that she would fax the order to the lab. Well with in a week She called and told me to come into the office. So I did Aug 2,2006 and she said good news and bad news. My heart droped and she said No cancer and that was great then she said but, you do have a diease called Celiac sprue. Well then I told her about the bloating and gassy and other symptoms and it all makes since now. my numbers were off the chart and that I would have to be wheat and gluten free the rest of my life. Well since then I have been gluten fre my numbers are great and all is better. I thank goodness my doctor new what to look for I have had this doctor for about 15 years and I wouldn't trade her for anything. Oh I haven't had a migraine since I went gluten-free, or any cold sores on my lips or face. Yahoo. I so relieved I know what it is now. Well that s my story well what all I can remember. i did grown to be 5 ft 6 in, but now I am 5 ft 4 inches Doctor says I shrunk from Osteoporois I was dx in oct. I was wondering why I felt shorter and shorter.

[lonewolf]

When I was growing up my mom took us to a "church" that didn't believe in doctors. I never had vaccinations, never missed a day of school for illness and went to the doctor once when I was 12 for an x-ray and the second time for a physical for my college basketball team at age 18. I did get sick occasionally, but since it was "against my religion" it was ignored for the most part. I had a sensitive stomach, but nothing horrible and had so many cavities I couldn't possibly count (12 at one checkup) even though I brushed my teeth and wasn't allowed to eat candy very often. I was always on the chubby side, always hungry and was extremely active in sports, but couldn't lose weight.

When I was 10 I remember getting really dark circles under my eyes that I still have (to a much lesser degree) today. At 18 I got a tetanus shot and had Tylenol for the first time and had a horrible reaction - fever of 104 and a rash all over. No one was sure if it was the tetanus shot or the Tylenol, so I haven't had either one again. At 21 I got Mono, was horribly sick for 6 weeks and took months to get back to anything considered normal. Started getting a rash that was eventually diagnosed as psoriasis at about the same time. Also started getting alternating diarrhea and constipation, and ate Tums like candy because my sensitive stomach was so bad it hurt all the time. Was diagnosed with "colitis" (by some type of scope that was very uncomfortable) and then told it was IBS. My senior year in college the school nurse suggested that I avoid dairy to see if it would help. I thought she was nuts and ignored her. I did start taking lactaid pills. The diet that I was supposed to be on for IBS made it worse, so I tried to forget the whole thing.

Through my 20's my stomach got worse and worse - still D and C, bloating, constant stomach cramps. Psoriasis got way worse. Still managed to teach PE and keep fit. Had a hard time getting pregnant the first time, but had my 1st at age 28 and then two more in the next 3-1/2 years. Got sicker and sicker until my health broke down completely at age 32. Was almost crippled (literally) by arthritis (psoriatic - just like rheumatoid), totally fatigued and unable to care for my children without help. The psoriasis covered 80% of my body and I really just wanted to hide under my covers all the time. Forgot to mention depression and brain fog.

Out of desperation I went to see a naturopath after the arthritis diagnosis because I didn't want to take the medications the Rheumatologist prescribed (Methotrexate and Plaquinil). He did an ELISA panel and discovered I was allergic to wheat/gluten, barley, rye, dairy, eggs, soy and several other minor things. (He told me that I would get over the allergies if I avoided those foods for long enough. He also told me that I could eat barley and rye and not to worry too much about gluten because "the protein they use for the test is so concentrated that lots of people test positive".) I reacted to almost everything I ate and was scared to eat almost anything. Five days after eliminating all these foods (I did avoid EVERYTHING) I was feeling so much better that I rode my bike in our neighborhood July 4th parade.

For a year I literally ate only rice, fish, most vegetables, some fruits and sunflower seeds. I completely recovered from the arthritis, the psoriasis went away about 99% and I lost 40 pounds. After a year I started adding in things like beans, nuts, bananas, citrus, tomatoes, potatoes, oats, corn and other things that were on the low end of reactions on my tests. I still felt great, but the psoriasis started to come back, although not nearly as bad as before. I wasn't careful about gluten though, because I didn't understand about it. I still avoided wheat, eggs, soy and dairy diligently. The arthritis didn't come back, but my joints would ache a bit if I accidentally got some wheat, dairy or soy. I was also diagnosed with hypothyroid somewhere in this time.

After several years I tried to add spelt, since it wasn't wheat, and for a while thought I was okay with it once in a while. My stomach aches started coming back and I started to make the connection between spelt, oats and stomach pain. But I "knew" I didn't have Celiac, so I didn't worry too much and just thought my sensitive stomach was back. I started getting fatigued and bloated again and was diagnosed with an autoimmune kidney disease about 3-1/2 years ago. On my own I figured out that gluten was making my kidneys worse, so decided to go strictly gluten-free to see what would happen. My disease went into remission and I was able to get off the large dose of prednisone I'd been on for 9 months. The nephrologist was very patronizing when I tried to explain it to him, but who cares. I've been in remission for over 2-1/2 years now and was told that "it would be a miracle" if I could stay in remission for a year.

Last year, right before Thanksgiving, I was looking for gluten-free recipes online and came across Celiac.com. I was shocked to see how my symptoms lined up with Celiac Disease. I learned more about hidden glutens (I thought I'd been doing so well) and went fanatically gluten-free right then. My sensitive stomach immediately cleared up again and I've been extremely careful ever since. I had gene testing done and found out that I don't have the Celiac genes, but I'll never knowingly eat gluten again. I've seen in several threads that some people think that those who are "only" gluten intolerant can tolerate some gluten. For me, that's not true. Even CC will make me sick - D for 3 days plus brain fog and anxiety.

Sorry this is so long - it felt good to get it off my chest. And I realized I left out several symptoms!

Edit - forgot to mention that I had chronic tonsillitis also, after having mono. Finally had them removed right before my 24th birthday.

[hannahsue01]

Around Age 5 I was diagnosed as malnurished but I am told that I had a hearty appatite. Around this age they also said I was alergic to tomatoes. Throughout elmentary school I was constapated and found I could not drink milk without and upset stomach. I had pnemonia in 5th, 8th, and 12th grade being hospitalized the last time. I have always had terrible teeth and way to many cavities but have always had good oral hygene. In 8th grade I missed an entire semester of school....mostly from bad head aches and throwing up......I was mostly accused of not wanting to go to school but I had friends and was on honor roll. I was diagnosed with allergies, asthma, migrianes, and IBS by Mayo Clinic. In 11th I got mono. I had some rare kind of strep throat. I was always sick from 8th grade on. At this time I also was diagnosed with tonsilitis and had to have sinus surgery to clear a year long sinus infection. It seemed I was always coming down with somthing. Since that time period I have always had issues with being to cold when everyone else was comfortable. I started seeing a pyscologist at age 5. I had severe menstral problems that caused heavy bleeding, severe cramping, and throwing up. I have had some wierd heart tremor thing since then as well. I have had depression since early child hood. Here is a list of my current symptoms at age 24.

Constipation

Passed out a few times from passing poop along with severe sweating, extremely hot, very dizzy and nauseous

Diarrhea (especially after eating pizza, pasta, cereal and ice cream with wheat flour in it)

Fatty stools (foamy, floating, floating fat)

Almost always nauseous

Upset stomach (often severe)

Dizzy allot

Bouts of heart burn (occasionally and always when I drink malt alcohol coolers)

Stomach cramps (sometimes severe)

Stomach is often more upset after having a bowel movement

Always hungry (even after a decent meal….grave carbs)

Gas (sometimes severe)

Bloating

Bouts of chest pain

Chest tremors

Often very cold when no one else is (hands feet and nose cold to touch…..often to the point of shivering)

Night sweats

Boils on armpits (recurrent with treatment)

Arms have weird ache and numb and swell up and is very warm to the touch….(nurse told me to take aspirin and it seems to help)

Panic attacks (breath taken away and heart seems to skip beats lasts about 30-60sec and comes on with no warning)

Shortness of breath even while doing nothing sometimes severe (comes and goes)

Weight gain (120 to 205)

Can’t lose weight with diet and exercise (only time I have lost weight is when I didn’t really eat at all for 4 months)

Light headed quite a bit

Periods of clumsiness in arms and hands

Things said come out wrong (words come out switched around allot)

Tingling in face (pins and needles)

Weird vision (things look bigger than they are and sort distorted….really weird)

Occasionally find that I have been staring and can’t remember what had happened for awhile

Bad teeth (lots of cavities but have good dental hygiene)

Bone pain

Joint pain and stiffness

Wrists have shooting pain off and on (left is worse)

Elbows get tennis elbow symptoms (comes and goes)

Muscle aches and stiffness (always feel like I have the flu)

Muscle weakness (weaker now than I was even a year ago)

Charley horses in feet and lower legs every day and night

Restless legs (feels weird and feel like I need to move them)

Really stiff after rest and sleep

Really sore after any amount of activity

Limbs often feel heavy (usually at the same time as being dizzy feeling like I need to eat)

Always tired

No sex drive

Trouble going to sleep

Trouble staying asleep

Wake up during night with severe lower back pain

Wake up to pee 2 or 3 times a night

Dry mouth and throat at night

Frequent urge to pee (often only pee just a little bit)

Irregular long heavy periods (used to make me throw up and curl up in a ball in pain)

Irritable and moody

Irritable and very agitated for no reason with feeling of restlessness (drives me nuts)

Sores on inside of mouth and on tongue

Low iron (not high enough to donate blood/dips in finger nails)

Extremely itchy bumps under chin with clear liquid in them (comes and goes)

White specks in nails (sometimes)

Abnormal skin sensations (feels raw when touched with no explanation…..usually on arms, back, or rib cage)

Headaches everyday (sometimes severe)

Migraines

Boils (antibiotics don't clear it)

Tingling and numbness in hands and feet

Throat often sore and swollen

Burning in throat after eating (not always)

Lower back ache for 6 months

Itchy skin

Hair loss (last 6 months or so)

Trouble concentrating

Fogginess (have to ask people what they said or can’t remember what they just said)

Get floaters about 3 or 4 times a month

Eyes get foggy (comes and goes)

Lactose intolerant (maybe)

Had premature birth at 29 weeks

Failed to produce more than 2 oz (usually less than 1/2oz) each pumping of breast milk for 4 mo period pumping 40 mins every 1 1/2 hrs

Almost every time I have a blood test it comes back with a really high white blood cell count

I have been on the diet for a few weeks now and am already feeling a little better. The most noticible thing seems to be that I don't constantly feel like throwing up.

My 5 year old daughter has always had issues with wieght gain and has always had a very large apitite. She has been constapated for over a year. Her attitude was really bad (thought maybe she had ADD). Turns out she is severly farsighted. Has had a rash a number of times resembling small blisters that itch really bad. Head aches and belly aches. Has issues with milk. Seemed she was getting less energetic all last summer. Now that she is on the diet all of that has started to get better.

[grannynanny]

Okay, here goes! I hope I can write this in a way that is both cathartic for me and doesn't bore the hell out of the reader.

My MAJOR symptoms (and stay tuned, I'll talk about my minor symptoms later) began to occur about eight years ago, following two fairly major surgeries (which involved some bone transplants). After eating out one night (and it was a yummy shrimp pasta dish), I spent the next 20 hours on the bathroom floor -- and I really had to make some fast decisions about which end to place over the toilet first! (Sometimes it was the right decision, and sometimes it wasn't, if you get my drift ). And, to top all, I was a guest in my son's and daughter-in-law's home ! Crawling downstairs in the early afternoon, my d-i-l ran me over to the local hospital ER. After rehydrating me, the doctor and I decided it had probably been the shrimp I ate the night before.

Bouts of V&D started to occur more and more frequently over the next year or so (I'd now begun to rule out bad food) and my doctor sent me to a Gastroenterologist for some diagnostic work. I was scoped here, there and everywhere, drank barium for swallows and enemas, ate nuclear scrambled egg sandwiches (the gastric emptying studies), and still learned nothing. I was switched from Zantac to Prilosec and, eventually, to Nexium.

Now, a move to a new city, so I had to start from scratch with all new doctors And now my symptoms are starting to escalate from occasional bouts of V&D to almost daily bouts of nausea, cramping and bloating. Nausea would sweep over me for no apparent reason several times each day -- sometimes it lasted for only minutes. I ate Tums by the carload and made my visits to the ER on a regular basis for IV fluids and suppositories (when I had barfed to the point that my stomach lining was all I had left -- and it was seriously trying to come up!!).

And NOW I'm convinced that I have a) stomach cancer, some rare disease that no one's ever heard of or c) WORMS (or some sort of parasite I brought back from one of our overseas trips)! I couldn't decide which I had, and went back and forth, giving each equal weight. Or, maybe I had them ALL!!!!!!!! A food allergy? No way, I was MUCH too sick

And then came D-Day (that's D for diagnosis, self, mind you). It started a little differently than the others. I woke early in the morning with stomach cramping and bloating. By mid-morning, the cramping had become so bad and the bloating so severe that I looked like I was 9 months pregnant -- WITH TWINS!!!!! I went by ambulance to the hospital (and BTW, they really pay attention to you in the ER if you arrive by ambulance!) where I was given a morphine drip for the pain and testing began. A gastroenterologist and surgeon were called in and they started preparations for surgery, thinking I had an intestinal blockage. But well, no, I didn't. So some more tests were done, and I swallowed even more barium and then, guess what? The pain subsided. After 5 or so hours, and 2 or 3 barium milkshakes, I felt fine. Nonetheless, they admitted me (they didn't believe me that I was fine ) for 24 hours at which point I basically released myself from the hospital (my roommate was driving me c-r-a-z-y and I had to go home to get ready for company!).

Dr. P. (the Gastroenterologist) wanted to see me NEXT WEEK for some additional follow-up, but you know how that goes. His scheduling secretary said he couldn't possibly see me next week, or the week after, and since I would be gone the week after that, it would have to be next month. Soooooo, the next week, when I woke with the beginning of the same symptoms, I did what everyone in his right mind does these days, and ran to the computer to Google "stomach disorders." It wasn't long before I found Celiac, and after spending the day reading information from numerous websites, knew I had found out what was wrong with me!!!!!!!! Hoorayyyyyyyyyyyyy!!!! I immediately went gluten free (although I had a lot to learn, and still do ) and began feeling better within 24 hours. In the 2 1/2 (or is it 3? -- time flies when you're having fun) years since being gluten-free, I have had no more bouts of V&D, no more nausea (yea!), occasional cramping and/or bloating (especially if I get glutened), and I'm like a new person.

Now, back to my followup with Dr. P. I saw him nearly a month later and laid out my case for Celiac. He, of course, was skeptical, but was willing to do the blood work to rule it out. Hmmmm, do you see where this is going? "But, Dr. P.," I said, "I've been eating a gluten-free diet for 3 weeks now and, from what I read, it could skew the results." "If you have Celiac," he said, "you've had it all your life and 3 weeks of not eating gluten won't make any difference." When I called for the results of the blood test, his nurse told me that one reading "was a little elevated," but nothing I should be concerned about. I guess I should try to find out what the reading was, but I've kinda sworn off going back to mis-informed Dr. P. and his mis-informed nurse.

Now that you've waited so patiently, I'll reveal the MINOR symptoms that I associate with Celiac (remember my earlier promise?

1. celiac disease is an auto-immune disease, right? My dental enamel was so badly damaged in childhood that a couple of my teeth grew in blackened with decay (at age 7, thank you very much!). Thus began my lifelong history of dental problems (an understatement) including a partial denture in second grade, and progressing to the loss of every tooth in my head by age 50. I now have a complete mouthful of implants, including bone that had to be taken from my hip (see paragraph #1).

2. I had (until I went gluten-free) DH on my scalp and, on very rare occasions, a very sore red rash all over my abdomen (DH?).

3. I became infertile before trying to conceive my third child (mid-thirties) and had completely finished with menopause by about 38. (No explanations given.)

4. I've hated milk all of my life.

5. Bone and joint pain (especially my right hip -- almost completely resolved since going gluten-free.

5. And, oh yeh, I'm overweight (30 - 40 lbs. and have gained now that I'm not throwing up all the time!

And now, for my final encore, I'll tell you what I suspect has been (unknown) Celiac Disease in relatives. My father had a lifetime of "stomach problems" ranging from GERD to intestinal bleeding to "severe and dangerous" anemia at one point in his mid-seventies. Doctors couldn't find the source of the bleeding and eventually he recovered (although he continued to be anemic until his death a couple of years ago). His sister, my aunt, began vomiting blood during a trip abroad (in her fifties). Doctors in Belgium removed 75% of her stomach, which had ulcerated, in order to save her life. So she was one of the early gastic bypass patients (involuntarily), dropping from a normal weight to about 75 pounds, where she stayed until she died a few years ago. Hmmmmmm . . .

And now, for the final chapter of my story (although I retain the right to add other little tidbits as I think of them

I feel no pressure to have my Celiac diagnosed by medical tests. Certainly my 3-year stint of gluten-free eating has been proof positive enough for me. HOWEVER, . . .

MY KIDS AREN'T PAYING ATTENTION WHEN I TELL THEM NOT TO EAT GLUTEN

!! So, I have made an appointment to see Dr. Fassano in Baltimore later this week. I'm anxious to know whether he thinks I need scientific verification of my status and (now that my kids are starting to have kids of their own), what I should tell my family. So do stay tuned, I may have another follow-on by this time next week.

P.S. I've loved this Board, and all the good information its members have given me.

[skore]

Ok, I haven't done this in a while because I got so tired of reading through my list to doctors,etc. But, I think maybe I need a little reminder about why I am here...So here goes:

I have been depressed since I can remember - litterally having the conscious knowledge that I WAS depressed when I was around 5. Throughout childhood I would often miss school because I felt bad and my stomach hurt. I was always getting rashes. And yeast infections - can you imagine having a yeast infection when you are 5! I had migranes. I have always had essential tremor. I would get "mysterious illnesses" that the doctors could never diagnose, and I would get things like chicken pox and scarlett fever that presented with only a tiny rash on my arms. I would have chronic bouts of strep throat and bronchitis - one time it became pneumonia but all i had was a cough.

My first year of college I got this thing where every time I ate, as soon as I ate I the stomach and intestinal problems would start. After every meal I would end up on the floor of my very public dorm bathroom sick to my stomach with D and cramping to the point that I would be curled in a ball shaking uncontrolably. After every damn meal!!!! When I went to the dr's about it their response was "We see this a lot in young women. It will go away eventually" I kid you not, and I got that response for subsequent visits for other things as well. Aaarrr - it makes me angry just to think about it.

That summer I stayed in Isla Vista - at UCSB, a notorious party college - and proceeded to do just that - 5-6 nights a week, what can I say - I come from good russian stock. Oh, I was also vegetarian and eating mostly wheat and soy at this point, along with the beer and hard alcohol....well, you can guess the pain I caused myself, I just thought that soy made you that gassy That October I was diagnosed with Mono - severe- immediately I knew who I got it from, I guy I had been dating in june/july. I had mono for 4 months before it presented enough symptoms for me to know something was actually wrong - i thought I was tired from all the partying!!! 4 months!!! Ugh. The Mono continued full force for another 2, resulting in 6 months of active mono, and 2 years worth of chronic tonsilitis and throat infections and the consant doses of antibiotics that they treated me with that subsequently stripped my intestines of any good bacteria. (I still have my tonsils because I refused to let the doctors remove them - they couldn't figure out what was wrong with me, and at the time my tonsils were the only thing that was telling me something was not right. Somewhere in my mind I didn't want to erase that gauge of health.) Anyhow, THAT right there was my BIG trigger.

But it gets grosser, IV is a beach town, and beach means wet and often moldy. The apt. I lived in the next year had a toxic mold infestation. My little beaten up immune system did not have the defenses to keep the mold at bay and it infected my body, as did the yeast I was already sensitive to and could no longer fend off either. Over the next two years it went like this: chronic cold and flu like state, the chronic fatigue, recurrent throat infections, horrible stomach/intestinal problems that went from baaaad gas to me popping 4 pepto pills with every meal just so my meals would stay in my body for a couple of extra hours.

I became more depressed, developed ADD, 'brain fog', reading disabilities, horrible anxiety issues, OCD, panic attacks that lasted for hours, agoraphobia, asthma, horrible painful itchiness that moved from area to area on my body, random constant rashes. I NEVER had allergies my whole life and suddenly I became allergic to everything, and what was worse was that my allergies rotated, one week it was this, next week it was something else. Except the Eucalyptus trees, which I became permanently allergic too, and which blanket UCSB's campus. Grr... Oh, let's not forget the still chronic 'yeast' infections which in hindsight I now know were actually MOLD infections - my gyno at the time even said "I don't understand, I see some sort of spore, it must be a very rare resistant tropical strain of yeast", No not yeast - mold! in my nibly bits!!!

I developed this random bursitis on my ankle for NO reason, which I had to have wrapped and which caused excruciating pain. That magically disappeared one day after a year or so - thank God. But then I began to get the achy joints, which progressed into full on arthritis - it was so bad I would collapse int bed after work or school and pass out till the next morning. Then I developed these "12 hr. bugs" that I would get every few weeks. First I would get a headache, then my body would get very tender (especially over my kidneys...) then the shakes would start, uncontrollable. Then the D/V. Then suddenly I would loose my vision, my muscles would go limp, and I would collapse. The worst of those happened on a street corner near my house in the ghetto in the middle of the night. I was clinging to a lamp post praying to God I wouldn't lose consciousness because if I did I knew for sure I wouldn't be in the same spot when I came to. Luckily I didn't and I managed to crawl back to my house. I was so lucky.

I don't want to forget the horrible problems I had with my period. I had HORRIBLE pain and PMS. At 14/15 I was on prescription pain medication for the cramping which lasted for a week (my period was generally 9-12 days). Eventually my periods stopped and i went through an "early menopause" (though I did reverse that), which was saddly a welcome respite from the pain. When they returned I was popping 8-12 aleve a day for a week just to CUT the pain (have you read what aleve can do to your body- no good). It eventually got so bad my body would literally go into shock with uncontrollable shaking, C/D/V, nausea. It would just flatten me. I felt like I was carrying a watermelon in my belly, it actually hurt to walk or sit. One day i had sex and it hurt so much my body went inot schock and I was sick for two days. Needless to say my sex life and sex drive dried up - no fun if it causes excruciating pain.

I don't want to forget this because several times I asked if it could be endometriosis that was causing so much pain, and every time I was told no "you just have an imature uterus, it will resolve itself". Finally I found a wonderful gyno who said, "why don't we take a look?" and did a sonogram right there. Lo and behold, i had two huge endometrial cysts on my ovaries. I just had surgery in sept. to remove them. It was such a relief to know I wasn't crazy, and that there was a reason for so much pain. This is important because there is a HUGE link between endometriosis (which falls under the auto-immune category) and WHEAT allergies and things like leaky gut. I have noticed that several people have mentioned symptoms like this on this board, and really want people to know they should get it checked out.

But I digress. When I went home after college things got worse. I gained weight. My chronic fatigue became debilitating. I had uncontrollable rage problems, memory and vocabulary problems, my depression worsened to the point that I no longer wanted to live, I checked out. I knew my body was giving out, and I was just waiting for it to finally happen. I was 22. It still makes me cry to think of it.

By divine intervention, that week my Mom begged me to see one last person, a chiropracter with specialties in nutrition and neuro-something or other. That man saved my life.

Sadly, after 6 mos of great recovery, I went through some big life changes, and while eating grain lite, never really stuck to my grain free diet. Just recently I recalled coming across something called celiac years ago and decided to look into it. I'm 28 now and kicking myself now for not looking into this 5 years ago, but at least I am here now. This board has been a godsend and a trove of information. Thank you all for all your knowledge and compassion. I know I don't have it nearly so bad as some people, and for that I am very grateful, but this was a good exercise in why it is time to make myself healthy. Thanks! (Whew! That was really long!)

[tiffjake]

This is from my Website, so it is a little old...and says some things that you guys already know, but it is faster than typing out the whole thing! I have been gluten-free for a year now!!! Thank you Guys for all of your help!~TiffJake

I (Tiffany) was diagnosed with Celiac disease in December 2005. This is a genetic autoimmune disease that affects the small intestine and your bodie's nutrition. The treatment is a gluten free diet. I am going to list several links that were useful to me, and may be useful to you if you feel that you may have Celiac Disease (pronounced silly-yak, also known as Celiac sprue, non-tropical sprue, sprue, coeliac-the european term, and celiac disease).

I was having severe GERD and wanted to stop eating the foods that caused the reflux, instead of just taking all of the meds I was prescribed (Reglan, Aciphex, and Nexium). I knew there had to be a food connection. I read about the Lame Advertisement test in Figure Magazine and went to see an allergy specalist about it. He told me that I should try the elimination diet (and that the blood tests were not worth the money.) The elemination diet takes MONTHS and is often subjective, because it is up to you to monitor ALL POSSIBLE SYMPTOMS and keep track of what make you feel sick. I decided to get the Lame Advertisement test anyway, and I am SO glad that I did!

My Lame Advertisement results showed gluten, gliadin, sweet potato, almonds, whey, casien, and several other foods. The instructions were to cut out all of those foods for a month, and then reintroduce them on a rotation basis. When I reintroduced gluten (had pasta for lunch one day) my intestines shut down and I passed out in the mall and was taken to the ER! The doc said there were no bowel sounds, and that everything had shut down, and I had a gluten intolerance, and needed to quit eating gluten (based on the fact that I had been gluten free for a month, and this was my reaction to eating a bowl of pasta!)

I went home and researched gluten intolerance. I found Celiac.com. Iread about Celiac Disease and the symptoms. I had most of the symptoms, except the "thin and malnourished" one! I wasn't sure if I wanted to talk to my doc about it because I was afraid he would laugh in my face! I read about EnteroLab in Dallas, TX and their gluten intolerance tests. I ordered on of those, and the genetic testing. When I got the positives back from that (including 2 Celiac genes!) I took them to my doc. Turns out there was a Celiac Blood Panel that he could run! Who Knew?

After everything was done and tested I found out that my paternal grand-mother was diagnosed with Non-Tropical Sprue before the passed away. She died very young, just 40 years old, from stomach cancer, with holes in her intestines.

I still struggle with the idea that I can't have my favorite foods. But as soon as I have something with gluten in it, I get so sick, I realize quickly that it is not worth it, and that this is not all in my head! I hate feeling different, and having to request special food and special treatment. I want to be just like everyone else, but when I do, I get sick, and I learn (again) that I can't do that to myself.

[LisaJ]

Hi Everyone!

I see this started a while ago, but I am new here! I love reading everyone's stories and I love this site - makes me feel less lonely in a gluten-filled world So here's my story: I was diagnosed with Celiac when I was about 2 years old. I was a "classic" celiac case - very malnourished, skinny everywhere but huge belly, every time my mom fed me, it would either come out one end or the other, etc. The doctors had no idea what was wrong with me for about a year, and then my cousin who was having the same problems was diagnosed with Celiac. So they did a biopsy, but me on a (pretty much) gluten free diet, and I got better right away. So I was gluten free until I was 18 and moved away to college. I was having alot of stomach issues - probably due to homesickness, stress, and nerves. Anyway, I went to see a doctor about it. He wanted to do an endoscopy because he thought maybe I had an ulcer. He knew about my Celiac, so he did a biopsy to "see what was going on with that". Well, the biopsy was normal, so he said, "You do NOT have Celiac. Go eat whatever you want! You probably just have IBS." So since I figured he knew what he was talking about and this was also before lots of access to info from the internet, I started trying all the things I could never have before - pizza, sandwiches, cookies, etc. I did get sick occasionally, but attributed it to "my IBS". I really didn't eat alot of gluten though, since that was not the kind of food I grew up eating, and liked my chicken and rice better. Well, about a year and 1/2 ago, I got married and my husband LOVES bread, pasta, pizza, etc. So I started eating that stuff more often, and getting sick more and more and just feeling worse and worse. Finally, I realized that this was not just IBS and started writing down what I was eating when I would get sick - then the lightbulb finally went on. I started doing some research, and talked to a GI pathologist at work (I am a Lab Tech in a large hospital) - and right away he said, "oh my god! I can't believe he told you that you were ok! Your biopsy should have been normal if you were on a gluten free diet!!" So I had my tTg IgA run and it was high, of course. So now I am back to my gluten free living and under the care of a good doctor that knows what Celiac is all about. It is so much more complicated now than when I was a kid though! Yikes. When I was initially diagnosed, the doctor told my mom, "don't feed her wheat, rye, barley, oats, or malt flavoring, and she'll be fine" - now there is the huge list of things I can't eat and all this new information I am learning - I am a little overwhelmed! But it has been about 6 weeks now, and I am feeling MUCH better. All my symptoms are gone except for the diarrhea, but I'm sure that'll improve with time too. I just wish I would've figured this all out sooner Anyway, that's my story. It is great to have a place like this to exchange recipies, stories, and advice! Thank you all!

Lisa

[dennymel]

AGE 24-Came down with flu like symptoms-massive fatigue, dizziness-out of work for 2 weeks

Never recovered from Fatigue-Aches

Diagnosed in 1997 with CFIDS/Fibromyalgia

diagnosed with IBS several times

severe Jaw/TMG aching

Headaches-sensitivity to light/especially fluorescent lights

Always bloated, intolerant to certain dairy.

Sent to Shrinks everywhere, They tried to convince me it was depression.

12 years later-had to go 2 days without food, from elevation sickness. Felt AWESOME.

did some research, had Enterolab test, diagnosed with Gluten Sensitivity etc..

It took 12 years, and the whole time it was only food? egad....dr's are clueless