What's Your Story?

[jmarie]

Just wondering... It's not a story people often want to hear, but I am interested in how this all came about for folks.

When I was 17, I had a sudden systemic inflammation which landed me in the ER. They kept testing for different diseases that my mom had - lupus, sjogren's syndrome - but all the bloodwork would show was that I had "some sort of active autoimmune disorder". They treated me with NSAIDS until I developed a duodenal ulcer from them. I was on Propulsid until they took it off the market for giving people heart attacks. No one ever said I was a hypochondriac b/c my joints were obviously swollen and misshapen and the vomiting & diarrhea was hard to ignore. Still, it was twelve years before I got a celiac diagnosis.

I had heard a piece of a show on NPR about some disease that people were describing like "I was so tired and sick, I just wanted to die" and "I was wasting away... waiting for my life to end" and I thought, that's me, that's my life. But I didn't hear the part of the program that said it was celiac disease until 2 months later, after my diagnosis. Even then, the dr was ready to write it off as IBS until my husband said "No - that's not what she has. Keep trying." My husband thought I had stomach cancer.

As I was walking out of the dr's office, the gi nurse said, "Hey, are you anemic?" and I told her yes, I'd been anemic for 12 years no matter what I eat. I hadn't gotten my period in 5 years. The endoscopy was scheduled the next week, and it showed that my small intestines had atrophied, the biopsy confirming celiac disease.

6 months later, the second endoscopy has shown only marginal improvement on the gluten-free diet.

[Carriefaith]

I'll try and tell a short version of my story.

Late spring 2003, when I was 22, I started noticing GI problems. Late that summer, I went to my doctor thinking it was lactose intolerance and he sent me to get allergy skin prick testing done. In October 2003, I had the allergy skin prick test done and found out that I was allergic to wheat along with a ton of other things like pollen, a fungus, dust, cats, dogs, yeast, ect So, I tryed a wheat free diet (not gluten free) for about 2 weeks. I never got better, only worse and my doctor told me that I may have IBS. In November 2003, I started getting really sick, I lost 10 pounds in one week, I could barely keep any food in my system and I was starting to loose hair, having joint pain, ect. To make a long story short, I eventually got referred to a GI doctor. Late December 2003, I went to my GI and he did blood tests for wheat allergy, celiac disease, and something else. I also had to do stool tests for parasites, fat absorption, bacterial infections, ect. I eventually learned that my tests came back positve for celiac disease and wheat allergy. Then I was told that I have to wait until April for a biopsy Anyway, I kept pushing to get the biopsy done earlier, so when an opening came on March 3, 2004, I got in! I started the gluten-free diet the day of my biopsy and found out 2 days later that my biopsy was positive.

[elonwy]

Dealt with major health issues for a year, headaches, insomnia, brain fog, gastro upset, D, C, missed work like crazy, felt exhausted all the time, doctors told me it was in my head.

I read the August issue of Fitness, which had an article about Celiac and lied to my doctor to make him test me, I told him I had family history.

The November issue of Fitness printed my thank you letter, thought that was super-cool.

Elonwy

[julie5914]

I had a cyst rupture in 2000 and was then put on iron pills for anemia. The iron pills caused all sorts of digestive distress, landing me in the ER. I had digestive problems with anemia ever since. When I went to doc with abdominal pain (a GYN because I suspected another cyst), he said it was my colon and dx IBS. I just suffered, trying to eat more and more fiber (usually wheat) and iron (also usually wheat). I went back to the doc in 2002, when they said IBS again and also gave me a bag of Zoloft, which just made me mad.

I finally started making regular appearances at another doc in the last two years. I asked for Zelnorm, but because my symptoms were getting worse, I pushed for testing. He wouldn't do it, though - I don't think he knew much about Celiac at all. He only treated my anemia.

Finally in Spring of 2005 I saw an IBS research study at UNC and I drove up there to participate because there would be extra testing. I was ready to find out what was going on, as it was bothering me almost every day and very painful. They did a celiac panel and mailed me the results (and supposedly my doc too, though they never called me about it). I had my doc refer me to a gastro doc where I showed them the results and they put me on the diet without endoscopy.

[CeliacMe]

I have been suffering for almost my entire life, I am 21 and just dx in July of this year. Let's see...long story short(I know its kind of long, but it is 15 years of my life)...

approx age 5-9 bouts with diarrhea. always had visible bloating "pot belly". Very thin, stick thin. Periodic vomiting every few months. Everything unexplained. Noticed that milk and diarrhea seemed to happen around the same time. Thought I was lactose intolerant, doctor told me he "didn't think so" mom said i was "making excuses because you don't like milk". I also would "daydream" during class.

approx. age 10-12.

continued to be "bothered" by milk, continued with other bouts of diarrhea that were unexplained, periodic unexplained bouts of vomiting were less, but still happened. Mild fatigue and headaches started. Began taking tylenol for headaches, I think that I took too much because it no longer works on me. Fatigue is bad, affects me all day at school.

approx. age 12-17

headaches get worse. hospitalized several times (I got a CAT scan, spinal tap and a myriad of blood tests). fatigue gets worse, and am in constant pain with bodyaches and intestinal pain (i suspect from all my diarrhea). Diarrhea evolves into diarrhea/constipation. I think I have IBS,and ADD they think I am nutso. I was dx'd as having migrains. (In retrospect, went to health food store when I was 16 and had "wheatgrass" became violently ill for 48 hours.)

approx age 17-20

diarrhea gets worse. i start fainting and getting more fatigued, sometimes sleeping for 16 to 24 hours streight. bouts with diarrhea are worse even after i switch to soy milk. finally, i have bloody diarrhea and extreme dehydration and end up in the ER. doctor refers me to GI, I get colonoscopy. He thinks that I have ulcerative colitis, my colon is damaged,but biopsy shows no colitis. I was dx'd as IBS. Throwing up gets worse, always think I am pregnant or its my period or hormones. Vomiting keeps to defy my theroies, I'm not prego and don't have my period for another week. I go to the ER about 5 times during this period and they treat me for dehydration associated with my symptoms and run blood tests saying that I am "fine."

age 21

I give up. I decide to dx myself. "weird throw up disease, with IBS and lactose intolerance" Finally I get what I think is "food poisoning"

I haven't gone for a regular visit in over a year. I am disgusted with doctors, I think its a waste of time and money because nobody can figure out what is wrong with me, mainly because I must be a weird diarrhea, throwing up hypo with migrains. So, I finally go to the doctor, thinking I have food poisoning and wanting medical attention just incase I need antibiotics. I lucked out, I finally got a doctor that would listen to me. Since it was my first visit and I needed a doctor (I moved almost 2 years ago and never got another doctor). She was very thourough, wanted to know about tests done in the past five years, etc. Told her about everything. She just listened. Decided that I needed "routine" bloodwork. She tested me for the Celiac antibodies. Tests came back positive, whites were low (she suspects from autoimmune stress and/or some virus). She told me two weeks later that she believed that I had Celiac Disease and was diagnosing me as such and gave me printouts about a gluten free diet. I no longer have migrains at all, all other symptoms have subsided. I believe that I am glutened when I get symptoms and am able to figure out where or what made me sick.

[Rachel--24]

I started having symptoms suddenly after quitting smoking and having lots of stress. My thyroid was overactive and my meds werent working to relieve symptoms. Doctors told me I needed Radioactive iodine to treat the thyroid...I had always been against this but with worsening symptoms and pain I couldnt wait to have it done. My hair was falling out like crazy and my head was killing me...my stomach was big and I had gained some weight which I thought was strange for someone with overactive thyroid. I went off work for 1 month while they destoyed my thyroid with radiation. I didnt get better and nobody could tell me why. 1 month off work turned into 7 and I was only getting worse with a huge list of symptoms by then. I tried to go back to work for 6 months but hardly ever made it in and could never complete a shift. Had to go off work again. Tons of tests came back negative. No other autoimmune diseases were found. No cancer. No brain tumor. Everything perfect.

I tried working again only made it 2 months...decided I wouldnt come back till I figured out what was wrong. Went to a dentist who said I had toxins in my body and possibly candida overgrowth. Said I wouldnt get better till I changed my diet completely. I started to change my diet and noticed more severe reactions. Instead of everyday being bad it was now either good or extremely bad. My boyfriend told me about Celiac...I immediately tried gluten-free diet but didnt know enough to be successful although I did feel better. By now I am hypothyroid and on meds but losing alot of weight. Hypothyroid people dont generally lose weight so I am confused by my symptoms. I ask doc to test me for Celiac...I'm negative. Frusterated by weight loss I stop messing with my diet and go back to eating lots of gluteny foods...trying to gain weight.

Everything gradually worsens till I cant get out of bed at all, become severely depressed wishing I could die, losing more and more weight and brain is not working enough to even drive safely to the doctors. I feel 100 years old. Tests still show nothing wrong except low iron. I decide if I dont do something I will die so I commit myself to very strict candida diet. First week is bad...like withdrawl. Second week is like a miracle. I get out of bed early and start taking care of things I've neglected for too long. I spend my summer like this but continue to have ups and downs. I buy a new lotion (contains wheat germ oil). I start getting extremely ill again and losing even more weight...cant figure it out. Finally after looking at ingred. something clicks. I get Enterolab tests and come back positive even after being on strict diet for 4 months. I start getting rid of ALL the gluten and gain 10 lbs. After 4 weeks gluten-free I go back to work. Today makes 5 completed 40 hour weeks...no sick days...no half-shifts. Its still early days but I'm clearly getting better.

The whole ordeal lasted 3 years and I was off work a total of 21 months.

[Ursa Major]

Okay, this is going to be long (I've been sick for all of my 52 1/2 years).

My mother always complained about my mood swings, even as a baby. One moment happy, the next one sad, or angry, for no apparent reason.

Got tonsillitis at the age of 3, which prompted them to remove my tonsils and adenoids (then they still thought that the tonsils and adenoids had no function and were dispensable). I've had asthma ever since.

By the time I was four I had terrible aches in my legs, so bad I couldn't walk or sleep (the doctors declared I had 'growing pains'). I remember one night clearly, when it was so bad that I couldn't tolerate the weight of my blanket on my legs, and my mother put a children's chair over my legs and draped the blanket over that.

I don't know when the backaches started, or the diarrhea/constipation pattern. Severe depression started around seven, debilitating backaches around the same time. I was sent to do special back exercises, which didn't help, so they gave up on my back and ignored it (trying to get attention?).

Always headaches, and as skinny as a beanstalk. My legs looked like sticks in pictures. Mom trying to fatten me up with porridge and milk soups, with lots of flour in them , which achieved the opposite. But she didn't give up and forced those, in her opinion, fattening things into me.

Body aches getting worse, I can't remember ever having any energy. I thought everybody felt like that, and tried my best to keep up with my siblings. Because if they could do all those things (going swimming, biking, delivering newspapers), so could I. Always severe brainfog, having a hard time concentrating in school, sometimes I felt like everything was unreal, I lived in a bad dream. Started having psoriasis. Always itchy all over. I kept getting unexplained earaches (my ear-nose-throat specialist declared I had neuralgies and nothing could be done but cover my ears when it was windy). Frequent sore throats, again, unexplained.

Appendix removed at the age of 18 (didn't change a thing), depression worsening (severe emotional abuse from my mother not helpful). Having less and less energy.

Met my husband in Montreal in 1978 at the age of 25, when going there for a year, and got married the following year. Our marriage has been a nightmare, because he didn't believe I was feeling ill and had no energy, claiming I was a hypochondriac, and I wasn't cleaning and doing things for him enough because I didn't love him (that went on for 26 years).

Got pregnant two weeks after getting married. Was terribly ill with 24-hour-all-night-and-day-sickness (can't call it morning sickness ) for all nine months. Also, three threatened miscarriages (might have miscarried a twin, twins run in my family, huge clots coming out, severe bleeding), no idea how my daughter hung on, but she did. Birth of a healthy, even though small child (6 lb 13 oz, despite having gained 45 lb, no idea then why I gained so much, people accused me of eating too much).

Got pregnant with Karen when Sarah was 6 months old. Same thing happened, very ill, several threatened miscarriages. Karen was larger, 8lb 3oz, but was born by cesarean because she was breach. I gained nearly 40 lb with her. Each time I kept some of that weight on, couldn't get rid of it no matter what. After this first cesarean is also when my bladder problems started. I had my first bladder infection right after Karen was born, and had many more since. I've also had stress incontinence ever since.

John (8 lb 3 oz) was born when Karen was 22 months old. Same problems in pregnancy. That doctor (who 'graciously' allowed me to have him 'naturally', cutting into my hemorrhiods when doing the unnecessary episiotomy, causing me six months of severe pain) had me crying all the way home after every visit, for having gained too much weight (in his opinion a small baby would be best if trying for a natural birth after a cesarean, and I was 'making' this baby to be 'too big', what an idiot). And my husband was agreeing with that jerk and upsetting me further. I gained just over 30 lb with him.

Had my first obvious miscarriage a year after having John.

Janet was born by cesarean (weighing 8 lb, 15 1/2 oz) 28 months after John (she was transverse, now we know that I had an almost split uterus, so only babies that were head down pretty much from the beginning could be born normally). Same problems in pregnancy as with the others. After her I weighed about 200 lb, couldn't lose weight. Constant pressure from my husband to eat less, and he didn't believe me that I wasn't eating much. In desperation I went on a juice fast for two weeks once (all I had was juice and fruits), and lost 20 lbs. Of course, that went right back on when I went back to eating normally.

After Janet I had three more miscarriages before I got pregnant with Susie. She should have been a twin, I lost one at three months. Stayed in bed for two months, or would have lost her, too. Every time I got up I started bleeding. She was safe at five months. She was also transverse, born by cesarean (weighing 8 1/2 lb.).

Susie is six years younger than Janet, and so I wanted a playmate for her. After three more miscarriages, the last one on her third birthday, I gave up. I had no support, either, when I miscarried. Ken (my husband) would just say each time, "Oh well, another one in heaven, no big deal", and that would be the end of it for him. That losing eight babies is a VERY big deal wouldn't register with him.

Getting sicker and sicker, and fatter and fatter. Getting more depressed, too. Backaches getting debilitating. Counselling for depression in 1999 helped that, by then I weighed 230 lb. Finally diagnosed with fibromyalgia, family still didn't believe I was making my illness up. So little energy and so much pain that I was an invalid.

For a while I felt a little better and my weight went down to 220 lb, when I thought I was carbohydrate intolerant (pretty close), and ate more meat and veggies and less bread and other flour products, and less potatoes.

Was put on codeine 24 hours a day four years ago, when the pain stopped me from doing anything, even sleeping. My low carbohydrate diet was considered a stupid idea by the rest of the family, and totally unsupported, so I didn't really keep it up.

Was diagnosed as severely anemic in 2000 (iron count was down to 4, normal is 40 t0 300). Started on the most potent iron pills available (had them sent from Ottawa), but they didn't really make a difference, until I took eight a day, which finally gave me such bad stomach cramps that I was literally doubled over for two weeks. After that going to the doctor's office for iron shots twice a week (with weekly ferretin testing, looked like a druggy, my veins were so bruised). Those just barely kept me at an almost acceptable level (ferretin count of 20). Eventually had a hysterectomy in March 2001, because of menstruating so heavily that it was almost like hemmorrhaging each time, and I had my period every three weeks, which lasted ten days each time. My iron counts finally climbed to being good, so the doctors thought I was fine (they didn't wonder WHY my periods were like that, apparently). That also fixed the problem with the prolapsed uterus I had for 15 years.

Diagnosed with nightshade intolerance three years ago, gastro symptoms not quite as bad since cutting those out, migraines also diminished (eating tomatoes would 'feed' my migraines to be lasting up to three weeks at a time in the summer). Cut out most dairy, which also helped.

May 2005 (this year) I tried a bowel/parasite cleanse, because I wanted to do a kidney and liver cleanse, thinking I was toxic, but you have to start with the bowels. Within five days the terrible, watery diarrhea started, as well as vomiting, headaches and feeling very ill. That's also when I went to the hospital, thinking I had a heart attack. After five hours they declared it was 'just' terrible bowel/stomach cramps, and that I was 'fine', and sent me home. I abandoned the cleanse, but the diarrhea lasted three weeks. It was like water. I didn't eat anything at all for a week during that time, and ALL my body pain stopped, and I stopped taking the codeine!

When my homeopath finally figured out to stop the diarrhea, I started eating normally again, and the pain returned, back onto the codeine.

A month later the diarrhea returned with a vengeance, and lasted for five weeks, and after that it was one day diarrhea, one day 'just' lose stools. Then I had another one of those awful attacks, but didn't bother with the hospital. I was lying on the couch for two hours, thinking I was dying. After that I had a constant, awful stomach ache. I saw my doctor that week, who poked me where my stomach is, which really hurt, and told me that my stomach was inflamed. She advised me to take more fiber, and to take metamucil. I went and checked it out, and it contains aspartame, so I didn't use it. I took sepia, a homeopathic remedy, which slowly helped the stomach ache.

A week into that, when my stomach wasn't so bad, I ate a piece of rye bread, and within a few minutes was in agony again with my stomach, as well as rushing to the bathroom with D within an hour, as well as running half the night. And I finally clued in. I went to the computer and looked up Celiac disease, and wouldn't you know it, found ALL the symptoms I have had all my life (and if I'd list them all here, it would be too long). Went on a gluten-free diet immediately.

The next day the diarrhea stopped and hasn't come back. The following day my backaches starting being significanly better. Within two weeks I stopped taking the codeine, because the pain wasn't bad enough any more to justify taking something as potent as codeine.

Yesterday (Oct. 28th) saw my doctor, letting her know that it's celiac that made me so ill. She said that she realized I had all the symptoms, but because I wasn't losing weight, she thought it wasn't possible. So she tested me for everything else instead (and of course it all came back negative). Gave her a little information session. She listened with interest, taking notes, and admits she was wrong (no apology however).

I told her I had no interest in further testing, the obvious improvement on the diet was the only evidence I needed, and she actually agreed with me. And so does my homeopath.

Putting the whole family on a gluten-free diet on Monday (need to buy a breadmaker, so the kids won't feel deprived, even though I won't be able to eat the bread), as well as some of that tinkyada pasta first. I feel that possibly all five children are gluten intolerant as well. My oldest daughter has already put her whole family (herself, husband and four kids, aged 5, two 3-year-olds, and 1) on the diet and is seeing improvement in the twins).

[Jean-Luc]

Had stomach cramps one day after going out for lunch. Quite severe, called DR. He had me come in check my abs, told me he thought I might have an ulcer. Sent me to a GI, he scoped me. No ulcer but biopsy results revealed celiac disease.

[penguin]

Dear God, Ursula! You've had it so hard! I'm glad you finally figured out what was wrong with you and I hope you're getting the support you need!

[munchkinette]

Wow, this thread is fascinating so far...

I've only suspected that I have a wheat problem for a little over a month, but after doing a lot of research it's obviously a good fit.

I've been on antidepressants for about 8 years. I'm not sure if it's related or not, but I started them because of hormonal problems. I was pretty fat until around this time as well. I was never regular either. I also had some weird bleeding sometimes and had to get a pelvic ultrasound maybe 5 years ago... test was normal, and they had no idea what the deal was. I also had a random seizure at age 14, and they don't know what that was since my tests were normal. I lost all my extra weight and was in fabulous shape in my early 20s.

I've been anemic off and on for about 3 years. I was really really tired all the time. I thought maybe it was related to depression but then suspected it wasn't. They checked my B vitamins and thyroid, and the only thing weird was the iron. Iron supplements helped. I was still depressed though, even though I was running about 6 miles at a time.

I needed to take ritalin because I discovered that I couldn't concentrate. It was a real problem in grad school, and the ritalin was a miracle.... for a while. A few months ago I finished grad school. I was really stressed because of that and my grandmother's death. At this point I was telling my shrink that the ritalin just wasn't working. He wasn't sure what to do about my meds because he was pretty sure that there was some physical stuff going on. He recommended looking into testing for things like Epstein-Barr. My allergies were getting worse too. I was getting tired again so I started taking iron supplements religiously even though they always made me constipated.

After finishing grad school and getting through Xmas I decided I needed to see the doctor. At this point I was taking: antidepressants, ritalin, birth control, 2 types of allergy pills, flonase, various vitamins, iron, colase (to balance the iron), and using my inhaler for the first time in 2-3 years. My acne exploded and I had to see the dermatologist for various drugs. I realized that something was wrong if I needed this many drugs. I was always tired, and at this point it wasn't just from decompressing after grad school. I got tested for anemia, b vitamins, thyroid, etc again, and I had next to no ferritin even though I'd been taking iron again for two months. The other tests were normal.

I started digging through my current and past results online (luckily you can do this at my hospital) and noticed that some of my white blood cell levels were screwy a couple years ago when I was first anemic. I also noticed a link about celiac disease in the description of some of my tests. The more I read about celiac disease the more things seemed to fit with all my problems. Even more amazing was that everything fit with my grandmother's health problems, and some of my mom's.

I tried the gluten-free diet for two weeks and felt fantastic. I told my doctor and she ordered blood tests. I had to eat gluten again for 1 week, and I felt like crap. I couldn't wait to stop eating gluten again. That was last week, and I'm still waiting for the tests, but based on family history and how I feel, I don't want to eat gluten again. I convinced my mom to try going gluten-free for two weeks.

[megsylvan2]

Well, another newbie here, beginning the journey of research & investigation. I have been reading the stories of others and, like most I guess, feel compelled to just share and have others to talk to because, quite frankly, no one else would really want to know all the details of symptoms, tests, and issues. I guess that is why support groups form, and thanks for being there to those who contribute and keep the forums going.

This is nothing but a litany of my problems and symptoms, and is probably boring beyond belief, to those that hear it all again and again here, and to mostly anybody else but me. So don’t feel that you have to read every boring word…

Towards the end of this summer I started having stomach problems. I thought my medications and vitamins were irritating my stomach. I tried taking them in the middle of meals with plenty of food and water, but pretty rapidly discovered that didn't help. Everything burned so much. I thought maybe I had ulcers. But soon I could add bloating, tenderness, inflammation, and I could no longer ignore the pain. It reminded me of the h. pylori infection I’d had a year or so ago, so I went to see the gastroenterologist. -- Endoscopy and meds.

Meds seemed to help somewhat. Endoscopy turned out ok. No h. pylori, no ulcers, no cancer, no nothing. But as soon as I went back to eating normally, I was in agony. Went to holistic doctor, who said leaky gut syndrome and recommended detox program with Metagenics powdered formula, which included a very helpful food elimination diet. I only ate meat, fish, fruits and vegetables and started to feel better. But the powdered formula (rice food, no less) quickly bothered me and made me feel awful. It reminded me of the feeling I got when I had hepatitis a long time ago.

I thought maybe fats were the problem and that it might be gall bladder. -- Ultrasound was normal. Still in agony. Thanksgiving was awful. I had such burning from center of chest around to right side and center of back. I also had such pain in my stomach. It felt like a small animal had sunk its teeth into my stomach, twisted it in a circle, and wouldn’t let go. It was constant and awful. I was sleeping sitting up because my intestines were so inflamed and swollen, I couldn’t put any pressure on my stomach.

Another call to gastro. -- CT scan - normal and limped through Christmas holidays. Now what? I went back to the elimination diet and started realizing that different foods were my problem, although food allergy testing was negative. Through elimination diet, I’ve been trying to isolate the offenders. Then I would finally recover, and feel normal again, only to repeat the cycle because either I ate the wrong food, or would re-try some food just to see if I was mistaken, as I just couldn’t believe that these foods that I had been able to eat all my life and up until a few weeks or months ago.

So far I have found that I cannot eat wheat, gluten, eggs, or honey. Even dairy, too, has become a problem, as I can no longer ignore my previously mild lactose intolerance symptoms. I am down to eating meat, fish, potatoes, rice, fruits and veggies, and, though I try to get variety in the actual foods, I long for the goodies I used to eat, and my diet is getting very boring. I’m starting to feel normal again, and am getting ready to retest the gluten theory, thinking perhaps it was just the eggs that were bothering my (although I really doubt it). Even Lipitor is bothering me.

I have another appt with the gastro in a couple of weeks, and will see what she recommends. I have a family member who suggested looking into Celiacs. I told him I had looked at it, but didn’t think it likely for a couple of reasons. For one thing, I have no lower intestinal tract issues – no diarrhea (unless I eat dairy). For another, I didn’t see how something as serious and severe as Celiacs could develop in such a (seemingly) short time. But after reading this forum, I guess it’s entirely possible for anyone with wheat/gluten intolerances (which have likely been lurking around unseen for awhile), and I will be looking to see if she mentions testing for Celiacs.

I keep hoping this will go away eventually, if I stay off these foods for awhile. But from what I’m reading, that seems unlikely. This is certainly no fun! I wonder how long it will take to move from denial to acceptance as I still wonder - will this truly be a lifelong condition?

[CMCM]

Well, I'm 56 and just definitively figured this all out a month ago, so it took 56 years...really!

As a newborn, I had terrible colic. My mom couldn't breast feed me and I couldn't drink cow's milk. Finally I seemed able to tolerate goat's milk. Things settled down, but my entire life I've had trouble with any and all dairy products, so I actually avoided most of them....never liked milk, not much of an ice cream eater, not much cheese. I made an early, direct link to digestive distress and eating most any dairy.

I had some strange near-fainting spells in my late teens. Early 20's I had some weird anxiety/panic type attacks, but oddly, I didn't feel consciously anxious about anything. I've had unexplained high blood pressure since the age of 20. I was fairly slim, but not thin, my entire life until about 36, when I had my son. I had a daughter at age 20, then my son at 36, and for him, I had to do about a year of on and off fertility treatments. I gained too much weight with him and after he was born, ended up about 25 lbs. heavier than I had ever been previously. I lost some, but not all of the excess weight.

All in my 30's I was having migraines and asthma like symptoms. I underwent extensive asthma testing, but doctors didn't think that was it. But NO ONE could ever explain my wheezing and chronic cough, and my feeling like someone was sitting on my chest. In my 30's I really started to notice a lot of digestive problems, but I just thought I was sensitive to dairy and had a "sensitive" digestive sytem.

In my 40's the symptoms got worse. And I could not lose that extra 25 lbs. no matter what I did....and I really didn't eat all that much. At 49 I had a period that got so out of control over 2 weeks that I became so anemic I couldn't do anything, could barely walk, and I was white as a ghost. I ended up in the hospital for a D&C to hopefully fix the situation and stop the bleeding, which it did. The doctor wanted to give me a blood transfusion because my blood count was so incredibly low, but I was afraid of that and refused. It took several weeks and lots of iron pills but I recovered and not long after I was basically in menopause, which actually went quite uneventfully with no problems at all. That part was great! But in retrospect, I think what I now know to be celiac and dairy symptoms really accelerated after this D&C surgery.

In my early 50's symptoms increased. Many times almost as soon as I'd finish eating I'd get intense bouts of D and nausea. Other times this would happen a few hours later and I'd feel so sick I'd have to lay down and go to sleep to get over it. Sometimes I'd wake up in the middle of the night with intense nausea and D, and occasionally I'd throw up too (but not usually). Headaches continued but not as bad as before. I had period of time where I thought there wasn't a thing on earth I could eat.

In November 05 I was hit with the worst dizziness I'd ever had...just out of nowhere a real vertigo that lasted for about 4 or 5 hours...and I realized that over the last 12 hours and 3 meals I'd been stuffing myself with grain type foods and not much else. So I started researching and found myself here, with the true wealth of information to help me zero in on my problem. I thought of celiac on my own because my mother was diagnosed with celiac (she is extremely sensitive to it), but I never thought I had it because I was never underweight like she was...in fact...no matter what I did I could not lose a pound! Anyhow, I'd had a celiac blood panel (although not a complete one, it turns out) 5 years ago which was supposedly negative....although I now know it just wasn't the right set of tests. On my own I ordered the Enterolab complete panel and learned I had the antibodies and autoimmune activity going on, that I had both a gene for celiac and a gene for gluten sensitivity, and that I was casein sensitive. This pretty much explained everything.

So I learned in very short order that if I don't eat gluten or dairy, my asthma symptoms of 25 years just disappear. I don't have migraines. Most of my digestive problems calm down very quickly. I sleep better. Lots more positive things are going on, even while I'm struggling to get my diet in order without messing up.

Last comment: If I'd depended purely on doctors to figure this out....well....it wouldn't be figured out yet. By the way, before my mom was diagnosed in 1969, she spent about 7 years wasting away while doctors told her it was "all in her head", like it was an emotional thing. When she was finally dx by a smart doctor who knew to suspect celiac disease, she weighed 80 lbs, her intestines were smooth as a billiard ball (her villi were destroyed), and she was really not far from dying. The good news is that she went gluten free and recovered very quickly, and she just celebrated her 85th birthday in very good health.

[kevsmom]

During the past 5 years or so, I had 3 episodes of severe D that would last for about 3 months. When I went to the GI, I filled out the history form, which included the fact that my father had an iliostomy (due to supposed ulcerative colitis) 30 some years ago, and that my brother has had Celiac for many years. Each time I had a colonoscopy that showed nothing. After about 3 months the D went away and I was fine. My brother suggested that I be tested for Celiac, but I didn't push the fact because I didn't want to have it. Last April, I went back to the GI because I had D for 3 months and had lost 30 pounds (which I really needed to lose anyway ), but I was so tired all of the time, and was having "brain fog" and other symptoms.

During this time, I was also seeing a Hematologist because I was very anemic and my platelet level was really bad. He couldn't figure out what was going on. He said that the only thing that he could think of is that I was eating rat poison. After one blood test, I had his partner (who I didn't know) call me and tell me to get off of the Coumidin (a blood thinner) IMMEDIATELY), I told him that I was not on Coumidin.

I ended up in the hospital because I had a nose bleed (gusher) that lasted several hours. They gave me several units of blood and plasma.

Of course, the Celiac blood panal came back positive. The GI and the Hematologist decided that both problems "could" be related, but they weren't convinced.

I found an article on the Web in the Israeli Journal of Medicine, about a case that presented with the blood symptoms that I had, and the patient was diagnosed with Celiac. I sent a copy of the article to my Hematologist, and he called to thank me.

Cindy