Your Personal Celiac/gluten Intolerance Story

[xandy]

I am not diagnosed w/celiacs.

On 3/5/05 I awoke ill. Long story short, i got more ill w/progressive symptoms for 3 mos. I saw 6 drs. (4 of which told me I was depressed) until I was diagnosed w/MS.

My sister got sick 9 days after me and was diagnosed w/Lupus.

In reasearching/gathering info over the last year & 1/2, about autoimmune, MS, lupus, etc. I've learned much about food allergy/sensitivities, etc. (THANK GOD!)

When I was ill in 2005 I knew there were adrenal issues, but was told everything tested normal except the adrenal assays my ND did, they said I had very fatigued glands indicitive of long term illness w/current high stressors.

The 1st thing my ND said when I told her I had been diagnosed w/MS was, "wheat elimination!" I did that for several weeks, but my neuro & husband had fits cause I had already lost SO mush weight. So I just "avoided" wheat.

I've had 2 MS flares over the last year each time same symptoms.

A month I ago I was doing the best I had for 1 3/4 year. I got a cold/bronchitis & was 9 days into that & holding my own when I went to visit family for the holidays. 3rd day there I awoke very short of breath. I went to ER and was told I have asthma.

When I returned home I went to my Dr. still needing treatment. Was told that you can develope asthma out of the blue. I'm 46 y.o, never had asthma, know a lot about food allergy, so this did'nt make sense to me. I started thinking & realized that I'd eaten a lot of pasta & bread while visiting relatives. I eliminated (I THOUGHT!) wheat and got better, added wheat got worse, better, worse, okay wheat! I'll stay away from wheat.

By now I'm losing weight, having tingle toes & ataxia (MS) again and realize uh oh! I got on the computer and started researching wheat allergy/intolerance. (I had looked into it previously, but I'm one of the ones who hasn't had gut issues.) As I looked further, what happens when you don't have gut issues, it ALL made sense. All of the symptoms I had that didn't fit w/MS, everything.

Last Fri. (after trying to get my Dr. & seeing my neuro- who is now fired!) I was in adrenal crisis. I went to emergency and told them I wouldn't survive if they sent me away w/o steroids.

My Dr. now gets that I probably don't have MS. This is not MS & it's all the same thing that led me to seek help resulting in MS diagnosis. I was diagnosed by MRI. MS doesn't cause adrenal insufficiency, and hasn't explained many of the symptoms I've had.

Interestingly all the ways MS has presented would be what long term undiagnosed/untreated celiacs would present.

I'm still a very sick puppy from the adrenal crash. I am so sure wheat has been poisoning me that I'm not willing to eat it to do tests. I'm not willing to even biopsy yet if it means drastic cleanout, cause I have to heal from the adrenal crash 1st! I am on a very limited diet; meat, brown rice, fruit/veg, goat milk, olive oil. I'll be working w/ND to slowly, carefully reintroduce foods.

I'm willing to look at/test for whatever they think, but until they can show me something that makes more sense, I know I'm wheat intolerant & it has made me very sick!

[lilaclissa]

I am new to this website but I will try to explain it all.

Childhood: Always sick. Leg Aches that would wake me up screaming in the middle of the night, Stomach Aches, nervous, depressed, tired, etc. I can't count how many doctors my mom took me to. I was diagnosed as "hating school" or even worse needing to eat prunes every morning. That didn't make any sense because sometimes it was "d" others it was "c". Always very very skinny.

Teens: Same as above only worse. I was 5'5" and weighed 95 lbs on a good day. Bones sticking out everywhere. My bones hurt. When I told people that they basically said I was lying "no one can feel their bones"

Twenties: Same as above only worse with add explosive "d" on some very embarresing occasions.

Thirties (now): Having to carry a backpack with a change of clothes just in case. I got really sick and was in a high stress job. When the stress was at it worst I was ok but once the stress was gone I was sicker than anything. I got to the point that I had bloody "d" and could barely handle going to work. I had a few accidents there but fortunatly had my backpack. I have been to countless doctors, GI's and OB/GYN's. One doctor told me he was surprised I wasn't glowing in the dark with all the x-rays, MRI's anc CAT Scans I have had. I had a colonoscopy that showed 5 polyps, several pap smears with abnormal results, countless kidney stones. I stopped counting at 30. I had to tell my boss what was going on because I was missing work. Her and I were talking one day and she said she read a magazine article about wheat allergies and I had a lot of the symptoms. She dared me to go without wheat for a week to see if it helped. I did. I started feeling better and my bones stopped hurting. My brain felt "fuzzy" and someone told me it was the lack of carbs so I went to KFC and got mashed potatoes and gravy. I don't cook at all and didn't know there was flour in gravy. I limped into work the next day, I hurt so bad I could barely make it, I was gray again, and was sweating from the effort of walking about 20 feet. My boss asked what I ate and I told her. It was then I figrued I was allergic to wheat. I went to a store in town that specializes in glutten free products. I was talking to the owner of the store and she told me about the celiac disease. She told me with the symptoms I have she is sure I am not allergic to wheat but have celiac. I went back to the doctor a few weeks later, she was really concerned because of the bloody "d" I had been having for about 6 months off and on. I told her about the glutten free diet and no more blood. She said they could do a test to see if it was celiac but it would mean another scope, this one going down my throat. I didn't see any point in that. I know what it is, yes I don't have a doctors note but I am feeling so much better it isn't funny. I still have a few aches and pains in my bones but nothing like before. I still have a little "d" if I eat meat that is really greasy or some other things. I am just waiting to heal the villi in my intestines and seeing how food and I get along after that. Needless to say I will never eat glutten again on purpose and will read every label to make sure there isn't anything in there I can't have.

[akceliac]

My first post!

My celiac story in a nutshell

[Yenni]

Okay, here is my story.

Didn't want to gain weight as a toddler.

Had constipation often as a child. Sensitive stomach. Skinny. Some food allergies.

Bad appetite as a teenager. It was a struggle to eat some how. Very skinny.

Aches in my knees and thighs off and on.

Late teenager/early twenties I started to get nauseous and get stomach aches when I ate, for longer time periods. Came and went. Doctors told me it was stress and checked gluten and lactose. Came back normal and I was told I had IBS.

I often felt worried and down. Often had canker sores.

When I was 27/28 that nausea came back really bad. I got daily diarrhea (which I have had ever since), foggy thinking, memory problems, irregular heart beat, really bad chronic fatigue, constant bloating, heart burn 24/7 that didn't help with any medication, sores in my throat from the acid reflux I had, ache in my muscles/stomach.. I am sure I have forgotten some of the symptoms. I felt I lost myself some how. My personality changed. I forgot my own phone number, couldn

[darlindeb25]

Isn't it amazing how many symptoms are the same, yet different. Amazing that gluten can do so much harm to a body. I have taken bits from many of your stories to send to my son. He was tested for celiacs, yet told no, he doesn't have it, I believe a false negative. He just turned 30 in Dec., has acid reflux, arthritis in his knees, bursitis in his shoulder, sinus problems, was sick at 2 weeks of age with ear infection and was 6 weeks old before the doctor determined it was his formula and put him on soy formula. Once he was off baby formula, he did drink milk occasionally, yet never was a heavy drinker, he ate cheese and ice cream. Around 5 or 6 yrs of age, he would eat ice cream before bed and within 2 hours, would vomit in his sleep. Little did I know then.

I became much sicker when pregnant with this son, of course was told IBS, nervous stomach, colitus--you name it, they labeled me. Then the panic attacks started in the early 80's and they told me it's all in my head. The worst all started at age 20 and I was 46 when my sister talked me into going gluten free. She had been diagnosed in March with celiacs and by July, she had me convinced. I was divorced by then, very sick, and no insurance, so I couldn't afford to be tested. I went gluten free in July of 2001 and I was feeling much better in just a few weeks. Of course, I am one of those who felt better for a few years, then the other intolerance's popped up, first it was soy, then corn, then nightshades, and then rice. Now I am dealing with the chemical imbalances again along with my periphreal neuropathy, which to the best of my knowledge started over 8 yrs ago. Dr. Green says they really do not know why one celiac heals so well and another doesn't, they have no idea if some of us will ever heal properly. So, we go on, we do the best we can and hope for a medical discovery in the near future. Good luck to us all and a Healthy Happy New Year!

[mtdawber]

I wish I found this site years ago. I had no idea what a celiac is until recently. For years I have had symptoms and never put it together... Here's the brief summary

No symptoms that I can recall until my 20's

Twenties:

Eczema on hands, arms and feet

Many headaches

Monthly Migranes that put me in bed for 2 days at at time

Some stomach upset - nothing that you would put as serious

C&D - days of not going and then days of staying close to the bathroom

Thirties:

More Eczema - doctor says here's some cream, have a nice day

Sinus' always full

Get Sick Really Easily

Diahhrea

Diagnosed with IBS after having bad case of food poisoning - 10 days in bed with V&D

(doctor told me to stay off fatty, deep fried foods)

Fatigue

Trouble falling asleep - doctor says take benadryll or here's a prescription...

Trouble staying asleep

Carpal tunnel syndrome, tingling in hands and feet

(I told the doctor that my hand falls asleep when I crochet, he told me to not crochet!)

After diahhrea - starving hungry again

Moody

Cry Easily - Some days just feel crappy!

Bordering on depression some days - thank god for my husband.. he is awesome!

A while ago I had chinese food with my husband (his favorite) - I was up all night V&D till I couldn't get myself up off the bathroom floor. He came and got me out of the bathroom and put me back in bed!

Then in May 2006, I broke out in this rash like I have never seen. Doctor thought it was from the blackflies when I was golfing as it was behind my ears - gave me antibiotics for the infection and cream to make the rash go away. Over the summer it kept on coming - watery blisters that broke and they went from my hair line to my whole head, my stomach, my back, my legs, my feet, my arms and my head.

I went to the doctor 5 times in 3 months. He now thought it may be dishydrotic eczema. I finally demanded a referral to a dermatologist. At the end of November I finally saw the dermatologist and he aksed me "do have any other symptoms? do you have problems digesting wheat?" -

OH MY GOD - I never even thought of that.

In December I had a bioposy on my back and on December 20th it was confirmed DH. I have a referral to a gastroenterologist in April.

My skin is still breaking out but I am not as tired. I guess the healing is slow. Being on this board helps me so much as I am missing my food and learning a new lifestyle. All the information out here and your posts help me so much..... Thanks!

Tanya

[Jerri Ward]

I started with depression when I was 12. The migraines started when I was 15. Along with the migraines came arthritis. I was always tired all of the time which I assumed was because of the depression. I finally was sent to a specialist who told me that I had Chronic Fatigue Symdrome. It was nice to know why I was tired, but there was nothing that could be done about it. I continued to get worse. I was even more tired and all of my joints were in pain. I was referred to a Rheumatologist who diagnosed me with Sjogrens Syndrome. Once he got me on medication that seemed to help some with the overall joint pain, but not the tiredness. Within the past 1 1/2 yrs. the tiredness has gotten to a point that going from one room to another makes me completely out of breath. My family dr. told me that I was 47 and that I was worn out and that I just needed to go home and take a rest. If we had not been in a public place, I would have given him an earful. My rheumatologist just knew that there was something going on that was being missed and he wasn't giving up until he found out what it was. He sent me to an endocronologist who ran alot of tests. I already knew that I was Hypothyroid, and he found out that I was also HypoParathyroid and that I had Hashimoto's Thyroiditis and the big C word. I was not expecting that. It was odd because my brother was just diagnosed the mth. before me and we do not know anyone in our family who has it. He is really healthy, me I can understand because I have several of the autoimmune diseases. I have been gluten free for one year and I can say I don't feel better yet, but I am not giving up on it.

[CMCM]

Hmmm, let's see. My mom nearly died from celiac disease, which was diagnosed when she was about 43 and I was about 13. Doctors thought it was all in her head as her weight plummeted to 80-something lbs. Onset of symptoms probably triggered by a hysterectomy. Diagnosis took 7 or 8 years. By the way, she's 85 now and doing great as long as she doesn't get glutened, which makes her terribly, violently ill for hours.

Now about me. Terrible colic as a baby, lots of digestive issues. My mom couldn't feed me cow's milk, so I had goat's milk. My mom told me about episodes when I was 5 or 6 in which I had lots of loud burping. Since she wasn't diagnosed at that time, there may have been things she missed, obviously. But I don't remember anything in particular up to my mid 20's except that apparently from the earliest age I was always thought to have a "sensitive" digestive system. From an early age dairy seemed to bother me and I mostly avoided it. Dairy became more of an issue in my 20's and 30's, usually causing cramping, bloating and D. Since I could usually predict what would cause a problem, I still avoided it. Also, in my early to mid 20's I had a lot of what were called panic attacks, but were they really that? I had (still had until recently) chest palpitation episodes that scared me. I had sporadic dizzy spells and almost passed out a few times in stores. I was never underweight, but I was slim most of my life. But not wasted or thin like my mom, so no one ever suspected anything to do with celiac or suspected that I could have inherited it from her. However, my mom was always told that her kids (she had 4) had a 1 in 4 chance of having celiac disease. So statistically, one of her kids should have had it. I had my first child at 20, my second at 36. I didn't try to have a child until about 34, but never tried NOT to either and basically for 14 years I never got pregnant again. To have my 2nd child I had to have fertility treatment because nearly 2 years of trying didn't produce a pregnancy.

In my 30's I was plagued by migraines, an incessant cough that doctors could never find a source for (despite tons of testing), asthma that came and went, sinus issues, and worsening digestive problems. My 40's got worse. Joint aches. Dizziness. Worse asthma....now I had an inhaler, although it didn't really help much. Many times a couple of hours after eating I'd be overcome by extreme nausea. Occasionally I'd throw up, but not usually. I'd just feel like I was about to throw up for several hours and I'd have to lay down for several hours. Usually this was evening, so I'd just go to bed and by the next morning I'd feel OK. Sometimes I'd get bad D in the middle of the night, also feeling like I would throw up. I'd sometimes sit on the toilet with the D going on, and be holding a can to throw up in in case it came to that. After the D I'd feel better. Sometimes I'd get cramping almost right after eating, other times it would be hours later. However, although sometimes I'd know what affected me (dairy such as ice cream), other times there seemed to be no particular pattern to it. Certainly sometimes it seemed I did OK after eating breads or cakes, so I was not suspicious of that. I did know that dairy often (although not always) affected me with cramping, nausea and D, and since I often had some sort of dairy in conjunction with gluten, I always figured it was the dairy causing the problem. I was also having problems with attacks of what I guess would be called heartburn...horrible stabbing pain in the upper part of my stomach area. I could barely touch it. This would last hours, it was horribly painful and nothing helped it. And sometimes it returned return the next day too, no matter what I ate. No pattern as to cause here either, it just was really weird. Then I could go months and months with no heartburn type pain at all. Go figure.

By my mid 40's I'd accumulated 20 extra pounds which I could not budge, and I was bloated a lot of the time.

Finally, about a year ago at age 56 I had the worst imaginable vertigo attack with a dizziness that truly frightened me. I was outside, and it just hit suddenly and I stumbled into the house and had to lay down, but even so, I couldn't lay flat because that was even worse and I could feel everything spinning even with my eyes closed. I had to prop myself up at a bit of an angle and keep my eyes closed. This attack lasted quite a few hours, but a light bulb went on in my head as I thought about what I'd eaten the last 2 days: overload of gluten containing grain type things....bread, cereal, cookies, etc. and very little else. Just gluten foods. Could it have been a massive gluten overoad? I really got suspcious suddenly. Things seemed obvious for the first time.

I started researching and found this site, and subsequently I got the full panel of tests at Enterolab. I had had a gluten blood test maybe a year prior, and it showed nothing. Perhaps because for the most part, I really didn't eat a lot of bread things, I was pretty restrained with grains, and also, I'd been deliberately eating mostly veggies, meats, fruits, stuff like that. So reasonably a blood test would show nothing. Yet, I'd had that overload of gluten recently.....

Enterolab seemed promising because it could reveal reactions even after a year of avoidance of gluten. The test results showed positive reactions, a celiac gene, a 2nd gluten sensitivity gene, and sensitivity to casein (no big surprise there). I'd always thought I was simply lactose intolerant, but observed that lactaid didn't totally help things, or help at all. Perhaps I am both lactose intolerant AND of course also casein sensitive. Enterolab said I should never eat either gluten OR casein (hence, no dairy at all).

I went off gluten and dairy last February and felt amazingly better. For the first time I had normal bowels. My sinus issues got better. Headaches are a thing of the past. Joint pain gone. Nausea, dizziness gone. Fast forward to October....went to Hawaii, gluten and dairy crept back into my diet....just small amounts at first, then more and more. No real reactions at first, which was great, then very slowly, bit by bit, my digestive system got more and more stirred up. I think I did OK until an "overload" point got reached and KABLOOEY, my system just rebelled again and stayed messed up all the time.

So for the most part, for me, it's not always predictible. Sometimes I can get away with eating stuff, but it seems to stack up and then I get really messed up and there is no remedy except total avoidance again. I know I need to stick with this, but particularly the dairy avoidance is hard. Denial is always lurking in the background because of the fact that sometimes reactions are unpredictible and vague.

[Susanwisely]

Hi there Guys,

Here's my story - sorry if I bore you, I will try and make it short!

In October 05, I was taken into Hosp with serious cramps and pains in Abdomen, they perfromed a Laparoscopy and took my appendix out whilst there, yep still no answer to my probem! I went home to recover and started deteriorating badly. Bloating, abdominal pains, weight loss, sore muscles, not sleeping and the list goes on.

I was weighing 6.5 stone before hospital. I now weight just above 5.5 stone. Sometimes it varies. This is well below my BMI and a scary weight right now for my age 23. I cannot have nights out with friends because I am questioned I am so thin, stared at or I cannot go out because clothes hang from me. Its awful, it also has made me obsessive with eating, I stay in and eat and stuff my face, I never go out, lost half my friends and paranoid about even going shopping.

My specialist saw me 5 months ago (after an 8 month wait on the NHS waiting list for Endoscopy). It was then confirmed I had celiac disease and was at a very bad state where my villi is barely there and burnt out.

I have been on a gluten free diet since, symptoms a lot better but weight loss is my main worry. I am still losing weight. I understand the villi takes a while to grow, nobody is listening to me on my worries.

I now have no belief I will recover or gain weight, am losing interest in the gluten-free diet now and feel like giving up. My Specialist said he will see me again, I hope to perform another Endoscopy so they can see if there is any improvement.

Please, if anyone has the same symptoms or story, please contact me. I dont know anyone else with celiac disease to talk to apart from online. If someone else is in the same boat as me - I might have a little amount of belief!

Thanks. S

[Yenni]

Hi there Guys,

Here's my story - sorry if I bore you, I will try and make it short!

In October 05, I was taken into Hosp with serious cramps and pains in Abdomen, they perfromed a Laparoscopy and took my appendix out whilst there, yep still no answer to my probem! I went home to recover and started deteriorating badly. Bloating, abdominal pains, weight loss, sore muscles, not sleeping and the list goes on.

I was weighing 6.5 stone before hospital. I now weight just above 5.5 stone. Sometimes it varies. This is well below my BMI and a scary weight right now for my age 23. I cannot have nights out with friends because I am questioned I am so thin, stared at or I cannot go out because clothes hang from me. Its awful, it also has made me obsessive with eating, I stay in and eat and stuff my face, I never go out, lost half my friends and paranoid about even going shopping.

My specialist saw me 5 months ago (after an 8 month wait on the NHS waiting list for Endoscopy). It was then confirmed I had celiac disease and was at a very bad state where my villi is barely there and burnt out.

I have been on a gluten free diet since, symptoms a lot better but weight loss is my main worry. I am still losing weight. I understand the villi takes a while to grow, nobody is listening to me on my worries.

I now have no belief I will recover or gain weight, am losing interest in the gluten-free diet now and feel like giving up. My Specialist said he will see me again, I hope to perform another Endoscopy so they can see if there is any improvement.

Please, if anyone has the same symptoms or story, please contact me. I dont know anyone else with celiac disease to talk to apart from online. If someone else is in the same boat as me - I might have a little amount of belief!

Thanks. S

Can you possibly have other intolerances? I haven't started to feel good until I figured out I can't handle any Legumes at all.

Maybe you can do some Elisa tests or send in stool samples to EnteroLab to see if you have other intolerances.

[Aerin328]

I am moved by the bravery so many people have demonstrating in surviving such terrible ordeals with positive attitudes. Celiac disease is a terrible thing, but for those of us who survive and conquer, our perspectives benefit beyond that which other people may understand.

My own brief story:

I experienced a childhood of lasting fatigue, allergies, migraine headaches, breathing problems (accompanied by weakness and tingling extremities), and stomach issues on and off. But despite the many symptoms, I "sucked it up" and lived as normal as I could. In fact I was in the best shape of my life, running 2 miles three times a week, when finally at age 26, the camel's back broke.

It began with what I thought (mistakenly) was food poisoning on 4/13/06. I was travelling to my alma mater when after eating some Wendy's I was suddenly hit with extremely nausea and diarrhea like a freight train. I was overcome with weakness so severe I felt I couldn't even lift my arms. I kept thinking, "it will get better." But after three weeks of being completely bedridden, it did not get better. Of course, doctors said nothing was wrong with me. I was amnesiatic, depressed, had horrific brain fog : was completely afflicted. Eventually I mustered enough strength to work part time (thank god my company was understanding) but I could tell my health was failing.

In June my family doctor did a blood test for celiac's, yet though my antibody counts were elevated he said "if you have celiac's they have to be 'off the charts', and yours are only 'pretty bad.'" A fool, I believed him. Until 7/6/06 I went to an Integrated medicine doctor my fiance's family recommended - he took one look at the number and said, "accompanying your symptoms and background - you are Celiac. No need for biopsy." Thank God for him.

Unlike many celiacs I read on this forum, I did not recover immediately. But I definitely gained strength going gluten-free. Then on 9/24/06, suddenly my left lung collapsed from spontaneous internal bleeding and I spent 8 days in the hospital with a chest tube and lost 1/3rd of my blood volume. Truly, I felt that I almost passed - but the spirit overcomes, especially the spirit of a tenacious celiac.

Now, I am worlds better. I am still healing and my stamina is still low, but I am a multitude of times better than I was. On some days I feel better than I ever have! It's like I have a *real* amount of energy! (I relate it to having a bag of sugar worth of energy vs a sugar packet each day lol) The cycle continues to come and go, but patiently, I am reaching a new horizon. (They say that the antigliadin anti-bodies stay in your system for 1-2 years - so patience, patience).

Life is changed. I thank the mysterious Maker for the new future before me, and the perseverence to put those days behind me.

To any who are reading this and are suffering - please, do not give up hope. God, as unidentifiable as He is now, IS Good, and our trials strengthen us. It is so difficult to remember that ultimately we have Nothing to worry about- for the invisible Truth of it all is that our spirits will endure and surpass all suffering.

Enough of the mushy rant - thanks for reading, and good luck in your own path!

Christian

[srokie]

So here's my story.

I had a perfectly normal childhood with no medical issues. Looking back, I remember diluted forms of my symptoms as far back as 8th and 9th grade. I never noticed any "bad" symptoms until after a horrible HORRIBLE break up my senior year of high school. From then on, my symptoms were increasingly intolerable. They were as follows:

* Fatigue that, at its worst, was intolerable and preventing me from doing almost all activities

* Tachycardia

* ADD symptoms

* Occasional upset stomach

When I told my doctor about the fatigue, she said I was going to bed too late. Haha, thanks.

I went to France this past summer and suffered so badly that I barely made it through every day. (I ate bread at every meal.) I was constantly napping and barely had the energy to stand up. I asked my mom to make appointments with my primary care doctor and this nutritionist that someone recommended randomly one day.

I went from a hyper, joyful 7th grader to a tired high school student to a social misfit who stayed in her bed all day in college. It caused problems with my mother and boyfriend, because I wouldn't respond to them and was always irritable ("You try talking when you don't have the energy to breathe!," I thought). Everyone blamed it on my dad dying and thought I'd be fine because I was seeing a counselor. I had to constantly drink water to survive, couldn't concentrate on schoolwork, and was basically missing my life.

It has been 6 months since my diagnosis and I am finally seeing significant improvement. I take a cocktail of vitamins everyday to make up for the damage that all the wheat did to me, and I look forward to getting off all of those as well as the 5 prescriptions I was on (ADD medicine, anti-depressant, beta blocker, etc). I can't wait to see how well I learn my senior year of college. I'm thankful I have one year left to straighten out my grades.

Enterolab results 8-9-06:

Fecal Antigliadin IgA 124 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 51 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score 95 Units (Normal Range <300 Units)

Fecal anti-casein (cow

[Betty in Texas]

Hi everyone,

I'm new to the forem. I would like to share with you all my story.

I was diagnosed 3 years ago. I guess Iwas one of the lucky ones; being I am 55 years old. I got sick with what I thought was the flu and stayed sick for a month. I went in to the GI dr and he ran the endoscopey and blood work. My doctor thought I had hepatitis. He ran the panel as well. He called me to come in to his office which then he told me that I had a sever case of Celic Diease. My blood work as well as the biopsy came back positive. I have had hives and lots of stomach problems all of my life. I had my apendix removed at age 16. I know now that all of the problems I have encountered in my past were contributed to the disease. My dr told me that I probably have had this all of my life and never knew. I was very scared but I am learning more and more everyday.

Here are the results of my blood work:

Peticulin IgA Autoantibodies: Result 1:10 titer (abnormal) Normal range <1:10 titer

Endomysial IgA Autoantibodies: Result >= 1:160 titer (Abnormal) Normal range<1:10 titer

Gliadian IgG Antibodies: Result 80 EIA Units (High) Normal Range <20 EIA Units

Gliadin IgA Antibodies: Result 111 EIA Units (High) Normal Range < EIA Units

Small Bowel, NOS Proximal Biopse, endoscopic: Consistent with Celiac Disease

Gastric mucosa Biopsy, endoscopic: Moderate Chronic Gastritis, NOS

Gastric fundus Biopsy, endoscopic: Moderate to Severe - Chronic Gastritis, NOS

Esophagus, NOS Distal Biopsy, endoscopic Mild Esophagitis, NOS

I thank each and everyone who contributes to these types of forems. This is where I learn what I know. I do not have medical insurance so going to the doctor is few and far between.

[Acer]

Hi, if you don't show any intestinal damage or symptoms of gut damage such as anaemia then technically you are not a celiac. What you are is gluten intolerant- like me!

I never had any problem with vitamin deficiencies but suffered stomach cramps and diarrhoea after eating reasonable amounts of gluten e.g slice of bread. When i look back i must have had trouble digesting gluten for years but sometimes it was worse than others. I always had gut issues after drinking beer.

I suppose i just don't produce enough of the enzyme needed to break the gluten down. My mum is the same.

[Harri Real]

Hello, First time seeing this forum.

I thought this would be a good place to start.

Quick intro: I'm Harri, 20 years old, Male, Born and living in the U.k.

I was born with Coeliac Disease, but was not diagnosed with Coeliac Disease until I was 1 years old. It was rather touch and go in the first year as I wouldn't gain any weight...

I was finally diagnosed via a Stomach Biopsy (I hear it's diagnosed with a blood test now.... lucky for some) which was not very pleasant. The Doctors did a second biopsy at the age of 4 or 5 ish to make sure it wasn't just a phase. I still remember that today.. The tears where flowing that day!

But since then you wouldn't believe the changes I've seen. I'm now almost 20 years old, perfectly healthy and having Coeliac Disease doesn't bother me at all!

Me and my mum used to have to stomp round the supermarket's reading the labels on the back of every single food product.. such a pain Now it's easy, I know pretty much everything I can and can't eat in english supermarkets.

The only time I've ever struggled with this is the occasional School trip, meal at resturant or staying round friends houses. I don't know any resturant that wont cater for me now, there's even a Gluten free pub near my house. All my friends are really thoughful as to what I can and can't eat.

The only downside I can see to Coeliac Disease is... Developing Coeliac Disease. I can see how hard it must be to go from being able to eat everything, to being able to eat virtualy nothing, which is what it must feel like??? I don't know..

Anyway, that's my story, there's loads more to tell but I don't want to waffle on any more.

If anyone has any questions feel free to ask me. Asking someone who actually has Coeliac Disease and has lived with it for 20 years is occasionaly better than asking a doctor... no offense anyone.

Thanks for reading,

Harri.

[MDRB]

Well, here is mine:

I guess I have had symptoms of celiac disease since I was a kid. I was constantly sick with various things, it seemed that I would catch anything that was going around. I also had bad teeth, was very slow to grow (I'm still only 5ft 2" and 110 pounds having gained 10 pounds since going gluten-free, However my three older brothers are all over 6ft)

When I was 16 I had glandular fever, once I recovered I started to have extreme fatigue and stomach symptoms. Doctor after doctor told me that I had chronic fatigue as a result of the glandular fever and all reduced the stomach symptoms to poor diet. Fast forward a few years. I am now 23 and the explanations from doctors have changed from chronic fatigue to depression, I refused to go on anti depressants because I felt that I was not depressed but that there was something more to my symptoms. About this time my grandma's sister died from bowel cancer which had been treated repeatedly with chemo and most of her bowel had been removed however, it kept resurfacing time and time again and finally it spread though to all her major organs. At the funeral I met my grandma's other sister whom I had never met before, she had celiac disease. This got me thinking, I asked my mother about our family history and spent a night looking up celiac disease on the internet. I went to my doctor and demanded blood tests and the name of a good gastroenteroligist. The biopsy was positive for celiac disease and I have been gluten free for about 2 months. I'm still do not have normal energy levels but I feel that I am recovering and I'm looking forward to feeling 100%.

Phew... it felt good to get that out

[GoogleFan14]

This thread is a great idea! I am looking for stories for my wife who has Celiac Disease. She had a very tough time accepting the disease, and it was very hard for me to understand exactly what she was feeling. I like to look around the web to see if other significant others had the same helpless feeling as I did. I also found another site, Lame Advertisement.com, where my wife posted her story about <a href"Open Original Shared Link Advertisement.com/template.php?go=mysearch&keyword=celiac%20disease">accepting Celiac Disease</a>: Open Original Shared Link. I have found both GlutenFreeForum and Lame Advertisement to be very helpful.

[Guest LayneJ]

Hmm, I have never once sat down and wrote down this entire story, I am afraid it will be so long that no one would want to read it

I was sickly right from the start. At 2 weeks old I was in the hospital with pneumonia caused by an allergy to baby formula. Was put on soy based formula and did ok. During my childhood I was always anemic, I remember my mom feeding me rare steaks and little cups full of geritol (I don't know if any of you have ever had this stuff, but it was a liquid vitamin supplement with iron that was normally given to elderly people). Despite this, I remained anemic for most of my childhood. I was small and very thin...always sick with something, tonsilitis/strep throat more times than I could count. Always constipated as a child...and as an adult.

When I was around 8 or 9 I started having strange skin rashes, and then started getting hives. I would get hives from head to foot, every inch of my skin just covered with huge red itching welts. My eyes would swell shut and my lips would swell up huge. It was horrible. Dr's never did figure out what caused them, and eventually the hives stopped when I was about 14.

Around 13-14 I started having horrible problems with acne. I would not break out with tons of blemishes, but I would break out with a few that were very large and painful, almost always had at least one festering somewhere. Then the stomach aches started. They would be so bad that I was just doubled over in pain. Sent to the hospital at 13 with horrible stomach pains, they thought maybe it was appendicitis, kept me in over night for observation and did some x-rays and stuff and said I was fine. They decided maybe it was just pain from ovulation and that maybe I was going to start my period. I did start that at 13, but not till late that year. The stomach aches continued, no reason that anyone could figure out. Went to a parade of doctors, the only time I felt really well was when my stepmother put me on a macrobiotic diet and my chiropractor (yeah, i had problems with joint pain and stuff even then, which was horrible as I was really involved in ballet - more on that later) - put me on a regimen of about 20 supplements a day. When I went back to stay with my mother and my stepfather, all that ended and I was back on a "regular" diet and no more supplements. Still sickly, had pneumonia 4 times as a teenager, and strep a few more times.

At 17 started having bad problems with my feet and knees. At that point I was involved in ballet and had danced in several professional companies, had scholarships to the Pennsylvania ballet and the Central Pennsylvania Youth Ballet...and horrible pains in my feet. Started physical therapy and had to quit dance, they said that I was having some kind of arthitis from a previous foot injury and needed to take time off to heal it up. Got horribly depressed.

Got married and had a baby when I was 18, and that is when the real problems started...haha, hard to believe the previous were all just "minor". Went through the first pregnancy ok...started having problems near the end with low blood sugar and ketoacidosis, would regularly get so dizzy, vision would blur. Husband and I were living at my mothers at the time, she did take good care of me, but no one could figure out why I had such problems. Constantly had stomach problems, gas, constipation, nothing new, same as always. After a while you learn to live with it and start to think that maybe everyone has these kinds of problems. Baby was born a month early, but otherwise pretty healty. Considering all the issues I had as a kid, I breastfed, so my son did fine for the time being. After that I continually had strange problems with tingling and numbness in my hands and feet, they would just be freezing too - odd numbness in my back between shoulder blades I attributed to having the large baby feeding breasts and just caused by carrying around that extra weight. With my second pregnancy I started having horrible cramps in my legs that would wake me up at night, dr told me to drink milk before bed because I was low on calcium/vit D and that would help, which it did for the most part - but all this time I am still suffering from the same issues I have always had all my life, but now terrible heartburn due to pregnancy too. After my daughter was born I got very very sick. I started losing weight like crazy, terrible GI problems, heartburn, acid reflux, alternating D/C, doc said maybe GERD, maybe IBS, gave me pepcid which did nothing. Kept losing weight, I told the dr that every thing I ate was making me sick, and that I felt like I was starving all the time, and could not go to the bathroom, and he said "you have to eat to go" and I try to tell him again, I was eating...but everything made me sick. Oh well. After I got sent to hospital in an ambulance after having dr prescribe me asthma meds for shortness of breath and feeling like I was choking (told him it felt like someone had a hand around my throat and was squeezing), but also that my heart was pounding and making me shake - he said that "well, you will feel your heart pounding like that because you are so thin". Horrible reaction to the asthma meds, since I was not having asthma - was actually suffering from multiple deficiencies and becoming horribly sick. I was about 97 lbs at the time, and at 5'4" that does not look good, Every single joint in my body ached, I was a mess. I started having petechiae pop up (little bleeding broken cappilaries under the skin). Asked the dr what that wa and he said "oh broken cappliaries, and I say why? and he says " I don't know" and that was that....The dr finally put me on Buspar saying that I was having anxiety attacks and it was all in my head. I took the buspar for about 3 days and then flushed it down the toilet, just tried to find foods I could eat (yay for macrobiotics) that did not make me ill, and slowly got a little better and gained back some weight. Never was really well again... started getting horrible migraines weekly, were incapacitating, made me nauseous and dizzy - would drop things and walk into stuff.

Have been through the gamut since then, same problems over and over, same kind of responses from dr's. 3 years ago tried again to get one to listen to me and help me figure out what was wrong, she was a very nice lady, but in the end when I told her that everything hurt, that I could not walk up a flight of stairs without getting out of breath ( I was pretty normal weight, about 140lbs at the time, and not really terribly out of shape), that my stomach just would explode with gas whenever I ate and that it felt like there was something swelling under my rib cage, when I sat down It felt like my right bottom rib was sitting on top of something it should not be - she told me that I was fine, my bloodwork was fine, no liver problems, no thyroid problems, etc and gave me wellbutrin, told me I was depressed and to get more exercise. Gave me a prescription med for migraines.

So I went on feeling like total crap for 3 more years....Things came to a head this last year finally - I had moved to colorado 2 years ago, and started having more problems with the migraines, just stopped complaining about the stomach issues since they just said eat more fiber - got progressively sicker, my periods which had been getting heavier for years, were just out of control, I would bleed so much I had to stay home from work/classes ( I am a senior in college at 38). Dr tried birth control for me for that but the migraines got worse, I thought I was going to die, and they were worried i would have a stroke so they stopped the BC. Finally they checked my hematocrit, found I was anemic, put me on a multi with iron. Being anemic over 5000 feet is not pleasant at all, and I just kept getting sicker. Finally - I got a new dr at the university health center- actually a nurse practioner - talked with me, started me on some supplements, and i felt slightly better, but was unable to go to the gym for my normal workouts, just would tire too fast. Was so frustrated that I started once again trying to figure out for myself why I was having so many problems. I just thought to myself that NO ONE could have so many different things wrong with them at my age and that there was something causing it all...finally found some literature about anemia, heavy menstrual periods and celiac (I love you google!), and did more reading, suspected I was suffereing from celiac and multiple vitamin deficiencies from being sick and undiagnosed for so long. Talked to my dr about it and she said to try the gluten-free diet and see if my GI symptoms improved, which they did. For the first time in my life my stomach felt calm. She said that that, along with all my other symptoms was enough for her to diagnose the problem, and to spend the 300$ it would cost for blood tests that arent always accurate on a huge list of supplements and gluten-free goodies instead. The positive dietary response was good enough for her, and she did not want me to have to make myself sick again for the bloodwork.

After 2 months gluten free, I am starting to feel a tiny bit better. I am on iron (ferrous gluconate), vitamin D/K, calcium/magnesium/zinc, CoQ10, fish oil, a multi vitamin, B- complex, and glucosamine/chondroitin/MSM to help with the chronic pain and grinding in my knees, ankles, hips and shoulders. My youngest son who has had many of the same problems as me and dr's told me over and over to "give him more fiber" is now on the gluten-free diet with me and starting to put on weight for the first time in his life.

I don't expect a quick recovery. I will be happy just to feel a little better. If I keep feeling a little bit better every week maybe someday I will feel "well". I go to see the dietician today to tweak my diet/supplement routine as I am still having neurological problems and muscle twitches that go on for days in my feet and face, so hopefully she will be able to help with that.

Wow, that is really long, I would be surprised if anyone actually read the whole thing!

Feels good to let it out though, I cannot express how angry and upset and relieved and grateful I was all at the same time when the doctor finally said "yes, you have celiac" after 38 years of misery.

[ShayFL]

Hi Layne,

I read your story. I work from home as an artist. I can come in here while paint dries.

Bravo!! For taking your health into your hands. Researching and finding what was causing your problems. I feel kinship reading your life story. And I am sure many of us feel the same. I am sorry you went through all of that, but know that you are also a VERY STRONG person to have survived. And now you are healing. A journey that can give you hope.

Thank you for sharing.

Shay

[Aleshia]

I don't remember much of my symptoms as a child but my mom tells me that I had pitted teeth and constantly had very large stools that were like wet sand (my son gets the same when he is on gluten) when I was 3 I got a very high fever an then ended up with geographic tongue which the doctor just looked at and said I was ok it was just something that some people get. I got a really bad diaper rash as a baby that wouldn't go away, the pharmacist gave my mom a special powder to put on it and it finally got rid of it. when I was a kid I was very whiny and moody. constatly had a runny nose until I was like 10 years old. moodiness got worse as a teen and if I had even a 1/4 can of pop (usually sunkist orange which we didn't realise had caffiene) I would get very very hyper and talk louder and faster... then within 1/2 an hour I would have such a bad low I'd be yelling and screaming and think everyone was against me and then just start bawling. (my grandma actually tried to cast a demon out of me cause she thought it was so bad!) anyway, I always used to get really bad joint pain in my hips and knees and ankles and elbows, especially my knees after even a short car ride. we were on DSHS so my mom ended up taking me to the ER because of it cause it had gotten so bad and because there was only a walkin clinic that took DSHS and they were closed. The doctor there said that it was all in my head I was faking it because I wanted attention etc etc. a couple of months after that he came to my grandparents house where we were living at the time and saw me there and realized who I was (he respected my grandpa alot) and then started trying to come up with a new diagnosis. said that it was "growing pains." I went to boarding school at 15 years old and did ok for the first few weeks... then I started having trouble getting up in the mornings (it wasn't from late nights cause "lights out" was at 10pm and we weren't allowed to be up after that) I had to drop my first class cause I was so consistently late for it (it was art which I loved but I just couldn't do it!) I would sleep right through my alarm and had to have my roommate wake me up in the mornings before she left for her first class. my temp was consistently low (96.6) and I was having severe cramping with my periods (had to take anaprox for the pain) they give you 5 sick days at that school so I would force myself to go to class but then after a few days I was so exhausted I'd have to take a day off. nobody told me that a sick day was considered to be however many consistent days in a row that you miss class... (basically 5 sick TIMES in a year) so by forcing myself to go to class in between days off I used all my sick days up. I went to the school nurse she took my temp, saw that it was low, and told me "you're just depressed, you need to see the school counselor" I went to the counselor but it didn't make me feel any better! I dropped out of school after the first semester and went back home. my mom got a home school couse but they said I wasn't going to get credit for doing the work because I wasn't from whatever denomination they were, which ended up making me not graduate with my class. my grandma took me to her naturopath (same one I go to now) she was so nice! she said that I had a virus like mono (epstein bar??) and that my intestines were full of yeast, so she put me on nystatin. she said that I had hypothyroid and put me on thyroid meds but I stopped taking them after a few months cause I still felt like crap and I was a teen... I went to an alternative school the next year where they help you more 1 on 1 and you don't have to go from class to class to class and I did better there. the year after that I did running start at the college and also the year after that. I had so many credits to make up for since I didn't get credit for anything other than typing in 9th grade and then didn't get credits for 1/2 of what I did in 10th grade so I was about 3 credits short of graduating with my class.. I ended up getting my GED which is fine with me. I got married at 21 to a wonderful guy from new zealand. he didn't care that I was overweight (I went up a size pretty much every year from the time I was 13... and was in a size 18/20 by the time he met me) I was still having bad mood swings and cramps etc. at that time, plus the joint pain and fatigue. I had very low self esteem also and he helped me through all that just by being there and loving me. we moved to New Zealand for a short time and then back again for a few months then back to NZ because of immigration issues. and stayed there for 5 years. Had first child (after 3 years of trying!!) in 2003 and then got pregnant again 7 months later. after about 12 weeks in I couldn't walk. my pelvis was "grinding/clicking" whenever I would roll over to get out of bed. I was sooooo stiff! my husband bought a recliner so that I could sleep and then walk in the mornings to take care of our first baby. I started going to an osteopath who said that I was the most flexible person she'd ever seen (at 8 months preg. I could bend over and touch my toes etc) she said that the combo of breastfeeding and pregnancy hormones was making my ligaments too loose. I started to be able to walk more and sleep in a normal bed again after my 2nd baby was a couple months old. I started losing height around this time but wasn't really aware of it... I just had a harder time reaching things. I've been constipated constantly since this time (which the GI doc said could be pelvic floor disfunction) although its not as severe when I am gluten-free. I started getting brain fog (in NZ they call it preggy brain cause you have bad memory when you're pregnant and its supposed to last up to 2 years after baby is born!) I started weight watchers because by this time I was in a size 24 and I just couldn't handle the thought of going up another size in the next year! we moved back to the US in 2005 and I was almost down to my goal weight (4 lb off!) when I got pregnant in Jan. 2006 with baby #3 I notice my temperature has been more towards normal since having my children. by the time I had child #3 I had lost 2 inches of height, my brain fog became loss of concentration and I lost friends over it because I couldn't focus on what they were saying (I think they thought I was being indifferent to them or insensitive or something) I was forgetting appointments and names of people and places and not remembering what I was saying midsentence. I have had "rib attacks" since I was 20 and no doctors could figure out what they were, I finally found a doctor who found gallstones, but I'm not convinced that that is what is causing the pain because I get it after eating random things that aren't even fatty... like applesauce... it feels more like I must be swallowing air or something... my husband's friend who is a doc in germany suggested celiac disease so I started trying to find a doctor who would look into it. I took my 4 page list of symptoms and was told "you can't have celiac disease because you are overweight and constipated" went to another doc and was told "you don't have ANY celiac symptoms, you've got classic depression and fibromyalgia which both are treated with antidepressents, I'll give you a script and you should start them immediately!" had my blood tested for celiac disease and came back negative 2 times (2 different docs) was tested for autoimmune disorders and RA and both came back normal but the inflamation levels (can't remember what they were called) Were raised. got an appt. with a GI a few weeks ago he had me go back on gluten for a week and I started getting bad tummy aches, like my stomach was on fire not like acid... just burning hot.. I've never gotten any gastro symptoms before. he did an upper endoscopy last week and said afterward he saw eosinophilic esophagitis and possible signs of celiac disease. just got the results of the biopsies back and now he says that my esophagus biopsy came back normal, no eosinophilic esophagitis. and that my duodenum shows "mild nonspecific increase in inflamatory cells w/out obvious evidence of celiac sprue"... now I don't know what to think! weird things I have are things like I get tipsy on like a tiny sip of champagne or other alcohol (love the taste of peach schnapps but if I have 1/4 of a glass I fall asleep) my brother in law had like 3 glasses of wine and I had a teaspoon of brandy sauce with christmas pudding and we were acting pretty much the same! anyway... here are some of my other symptoms (I won't put all 4 pages!!)

itchy EVERYWHERE all the time! worse around my chin and neck after a bath. (this went away after being gluten-free but came back when I was challenged for a week and now it hasn't gone away again yet)

unable to concentrate/poor memory/brain fog (this also went away gluten-free and comes back after having Gluten but is starting to go away again!)

Clumsiness (was dropping knives and boiling pans of water in the kitchen also bumping into door ways) much better when I am gluten-free hardly drop things at all!

Loss of balance (just standing still I would fall over for no reason and have to catch myself) also gone with gluten-free diet!

Anxiety in places like banks and Post office (don't go in these places enough to judge if it is better or not but thinking about it doesn't make me as nervous)

Numb hands feet legs arms and my arms go to sleep easy (got WAY worse first week gluten-free but has only happened one or 2 times since!)

Migraine headaches with sensitivity to light and nausea (haven't noticed much difference in frequency but they seem to not last as long and are slightly milder I don't have to lie in a dark room as often!)

Loss of height (DEXA scan showed bone loss in hips: osteopenia) not much a gluten-free diet can do about gaining height back

Constipation (not as severe on gluten-free diet)

Pain in spine (was way worse and constant for first 3 days gluten-free but no pain at all now!)

Sharp pain near ovaries that feels like broken glass being digested (haven't had this since going gluten-free)

Feels like my fingers are breaking just from turning on the car or picking somthing up. (only had one time since gluten-free and I think that was during my challenge)

severe dental problems (spent $5000 so far and still need 2 crowns and possibly another root canal... gingivitis bordering on periodontitis)

bruise easier and don't know where my bruises come from sometimes (iron levels slightly low but not anemic)

more irritable/moody (much better when gluten-free)

Shakiness (also better gluten-free)

Headaches from smells (garlic, diesel, perfumes, candles, gasoline, cigarettes and other strong smells) gluten-free the only smell that still bothers me is diesel and gasoline but I don't get a severe headache anymore

Difficulty losing weight (I lost 5 lb in the first week gluten-free and it is still difficult to lose more now but I am not gaining, I'm kindof staying right where I'm at now)

Achy joints (much better gluten-free but not completely gone)

Tender hips & ribs (one rib felt broken but it doesnt feel so bad when I am gluten-free. I hardly notice it anymore)

Hard time getting to sleep (mostly better gluten-free)

Night sweats / overheated in my sleep (no more nightsweats gluten-free!! yay!)

get cold easily (this was better until my challenge but now I am constatly cold again)

rotten egg burps/gasiness (GONE!!)

Dizzyness/blackouts (GONE!)

anyway that is some of my symptoms... the gluten-free diet seems to agree with me... I can actually run now (and I actually want to sometimes!) when we go for walks. I don't get out of breath anymore.. my stomach used to just feel yucky and heavy when I would walk and I would feel like lying down on the sidewalk and sleeping. now I have way more energy and I think I could walk a few miles with no problems! getting my 3 kids tested soon and trying to convince my husband (he has diarhea and tummy aches and insomnia etc etc and his great aunt had coeliacs maybe the kids get it from him?) and my family to get tested or at least try gluten-free (my sis has ITP and false borderline personality disorder and is quite obese. my dad is severely obese and has all kinds of health issues and my mom gets bloated constantly after eating to where she looks 9 mo. preg. my oldest niece has aspergers, 2nd niece is violet and moody and gets severe migraines and she's very picky about what she eats (she's cut out most glutiny foods and tomatoes on her own she still eats toast, some cereals, and raman noodles though), 3rd niece is also moody and irritable.)

anyway sorry this is so long and I'm sure I left stuff out but I didn't want to make it any longer

[ShayFL]

Here is my story:

I was born a "blue baby" unable to breath. They were able to revive me, but I was placed in an oxygen tent and remained there for the first 6 months of my life. My Mom did not breast feed as it was just too much hassle for her to do so. I was often sick. Strep throat was my biggest nemesis, next to "stomach flu" which I seemed to have an awful lot of. I was on antibiotics throughout childhood. My teeth were rotten. Every tooth had a filling. Glasses. No stamina for sports or outdoor activities, so I became a bookworm.

Puberty hit me hard. Horrible periods with excruciating pain and very heavy bleeding. They would last 10 - 14 days. They left me completely wiped out. Finally when I was 15 my Mom took me to a gyn. He prescribed BC. And they did reduce my periods to only 2 - 3 days, light bleeding and very little cramping. I was grateful.

Appendix ruptured and I nearly died. Developed peritonitis which eventually led to a lot of scar tissue in my abdominal cavity. I lived my teen years in a complete state of exhaustion. I slept all of the time. I slept in school whenever I could. I slept on lunch hour. I slept in homeroom. Study Hall. P.E. when I could get away with it. I took a nap when I got home. I ate, bathed, and went back to bed. Weekends found me in bed till well past noon. I just slept through it all.

Lots of allergies and chemical sensitivities. Mom had to find new detergents, shampoos, etc. all of the time as I would react to them.

I developed bulemia in my teens as well. I ate (lots of gluten filled foods like pizza, donuts and bread). I purged by exercising. I still slept a lot into my 20's and would get this strange "coma" after eating. Literally would ave to nap or I would pass out. So I would eat my lunch at work and then sleep in my car for 45 minutes. A timer would wake me to go back to work. Then I felt like I was in a total fog all of the time. I would drive home sometimes and have to pull over with the "coma" feeling and nap for awhile.

Hypoglycemia.

Overweight.

Exhausted.

I got married and got pregnant soon after. My pregnancy was beautiful! The best I have ever felt in my entire life. I thought that God had finally healed me. But it was short lived. 2 weeks after giving birth, I woke with severe vertigo. It never completely went away. Therapy has helped me deal and now I only spin a little. A few times in the past 12 years I have had extreme again.

While trying to take care of my newborn, I started having anxiety. I was sweating like crazy. And I started losing a pound a day. I ate like a horse and the weight just fell off. I couldnt sleep. My husband accused me of anorexia. I was hearing voices. Yes. And they were telling me to kill myself.

I went to the doctor who said I just need a shrink and some prozac. I was desperate and went to the shrink, but refused the drugs. This craziness went on for about 6 weeks. Several times I thought I was having a heart attack. Still my doctor said I was normal. Just stress from having a baby.

Then things changed. I started to sleep again. And sleep a lot. I gained weight. I had zero energy. I became profoundly depressed. I didnt have the energy to do anything but feed the baby. Husband had to do EVERYTHING else. Still had the vertigo feelings. But I was too tired to care. I just slept. One day my sister says, "Have you had your thyroid checked?" I didnt even know what a thyroid was. But had the doctor check it right away. It came back hypo. And I learned that what had happened to me for those 6 weeks was hyper as my thyroid dumped ALL of it's stored hormones. Post-pardum thyroiditis.

I just got sicker and sicker. Migraines. Neuropathy. Constant gas, bloating and d.

And there was no Google back then. So I enrolled in Clayton College for a degree in Holistic Nutrition. I have a Phd. I tried every diet I studied and nothing helped. I even went "wheat free" with no luck. None of my books talked about Celiac except in passing as a rare genetic disease.

I tried it all. Acupuncture. Cranio-sacral. Rolfing. All sorts of diets. All sorts of supplements. Bio-feedback. Hypnosis. Psychotherapy. Reiki. Faith Healing. I hit an all time low when I called a 24 hour prayer line and got a recording. I almost gave up on myself, god and life. Almost.......But something has kept me going. I am a fighter.

My research on neurological disease with unknown etiology led me to Celiac. And here I am 2 months gluten-free. And my migraines are gone!! No more bloating, gas or d. I only go 2 or 3 times a day instead of 5 or 6. My skin looks better and my eyebrows are growing back in. This is the most hopeful I have ever been that I have found the answer. I will never knowingly eat gluten again. Never!!

[bakinghomesteader]

Well, here's my story.

As a child I always had problems "going" My belly stuck out and I was stick thin. My mom just said it was because I was so skinny that my intestines were bulging out. Don't ask me.

That is how it was until I had my son. After I had him, my neurological system went haywire. I was diagnosed with Myasthenia Gravis soon after. I still had so many GI problems, but trying to take care of MG is very exhausting so I chalked it up to that.

One year ago...I had read online about my GI symptoms and it really seemed like that was what was wrong. So I went gluten free for 2 weeks and became "regular" for the first time in my life. I wanted some proof other than dietary so I had a stool test for TTG from enterolab which came back positive. I was gluten free for about 9 months and felt good. I just knew that this is what was wrong, gluten.

Then my husband wanted to know for sure for sure and I did too a little I guess, so I ate gluten for 6 weeks and got bloodwork done and got really sick. I had new symptoms come up and the weekend before my doctors appt for results and I told my husband regardless of what it says, I can't eat this anymore. It is killing my stomach, etc.

I got the results back and I have Celiac. I had some damage because the vitamin tests came back insufficient levels and it is harder to recover now. BUT, I am and I am feeling better. I am just tired more right now and my "time" is horrible again. (that wasn't so bad when I was gluten free for 9 mos)

Now that my husband is aware of how serious it was and that is wasn't just a gluten sensitivity that it is another autoimmune disease, he is much more understanding and he doesn't have me make him gluten filled desserts anymore. My appliances are gluten free. Yay!

My advice is listen to your body. It knows things. lol. If you have a husband who doesn't get it, let him read this and just stop eating gluten. But, some people still want to know for sure and I understand that.

[trhutton]

On May 6, 2008 I went in for a mega-physical at the Cooper Clinic in Plano,Texas.

When I filled out the pre-physical paper work I requested some help with leg cramps. I had been having leg cramps at night for about ten years. I would be up five or six times a night. Each year with my physical at my other doctors, the cramps were discussed and dismissed as something that some people have. Never was there an answer for why they were happening. My fault for not asking more.

Once the physical started everything seemed normal. At Cooper, they take your blood sample as soon as you get there. In about an hour they have those results ready for you. That's when the physical took a strange turn. My doctor took me in to his office and started to go over the results with me. He could barely look me in the eyes. He started explaining how many of the items on my blood panel were screwed up. My Iron level was really low. My liver enzymes were elevated(my other doctors had been telling me that for ten years and didn't seem concerned) and my PLT was off the chart. Worst of all, TSH (thyroid) was elevated. As I sat there thinking about how I was in the best shape and health of anyone I knew, he told me that was the good news. The bad news was that the MDCT scan (body scan) showed my Gallbladder was enlarged, my Thyroid had two lumps on it and they suspected that I was bleeding in the Gut and didn't know it. I couldn't believe it. I thought I would kick my wife's butt with the results from my physical. She went the week before to Cooper for same mega-physical.

We worked out a plan to get me in to see GI doctor at Cooper Clinic the next week. I was going to have a Colonoscopy and Endoscopy to find out why my Iron level was so low. After the procedures were finished, the doctor informed me that the Colonoscopy went well with no issues. The Endoscopy however uncovered the reason for the low iron levels. The doctor told me I had Celiac Disease. He said he took biopsies to confirm his diagnosis (which they did). He explained what Celiac was and what I needed to do. He suggested I see a Dietitian ASAP. Which I did. The next day.

So here we are. Sure I had some other symptoms. I didn't know they were symptoms.

Doesn't everyone have 5-6 bowel movemnets a day. Guess not. We don't sit around and compare that kind of stuff.

Doesn't everyone get sick after eating pizza and pasta. Thought it was garlic and tomato sauce. Everyone thought I was a party pooper when I needed to go home because I didn't feel well.

Had the cramps. Everyone said to drink more water.

I was eating 3500 calories a day and not gaining any weight (5-10 and 140 lbs 46 years old). Why worry about that. We should all have that problem they said.

Migraines and joint pain and the list goes on and on. Hind sight is 20-20.

Well that's my story. Guess I have had active Celiac Disease for at least 13-15 years without knowing it. I will get better. I've some issues with the liver,gallbladder and thyroid to get worked out. But that is something we can handle now that we know what is going on. The leg cramps stopped a week after going gluten free. No more upset stomach. Still have the Migraines, but now I do think it is because of the weather.

I can't say enough good things about the people at the Cooper Clinic. They have people there who understand Celiac Disease. There a dietitian who specializes in Celiac/Gluten free diets. Her father had/has Celiac.

Thanks for taking the time to read my post. Tim

[Lockheed]

I remember complaining most of my childhood that my stomach always hurt and I had an itchy mouth. Constantly. It just never stopped. When I was 12 I fell down some stairs and my back started hurting pretty badly. Despite repeated visits to the doctor, no one ever did an x-ray. I was a pill popping junkie by 14. Skelaxin, Lexapro, Bextra, Daypro, vicadin.. you name it. I had probably taken it by the time I was 14. I had my first severe depression episode at 14. I told the doctor that despite doing everything like everyone else I felt like crap all the time. I constantly felt like I had the flu. The doctor and my dad both agreed that it was just "growing pains" and that's why my joints hurt so much. So add the onslaught of anti-depressant drugs into my slew of pain killers and anti-inflammatory meds. I was a walking pharmacy by 15. I'm not even sure how I was sober enough to qualify for a driver's license later that year. My mom finally got fed up of me complaining about my back so she took me to a sports med doctor and he did the first ever x-ray, 3 years later. There was a stress fracture in my L5 vertibra. They said it was a birth defect - spondylothesis. I would need back surgery. I refused the surgery. I was 15. I didn't want surgery on my back. I told them when I was older maybe I would do it, but I didn't want the recovery time or the risk of infection. I had braces put on later that year and they caught multiple old healed over fractures in my jaw. They even asked me if I had ever broken my jaw and I said not that I was aware of. I had some issues with TMJ but everyone told me it was growing pains. Finally, I got to college and I was riding my bike across campus with my backpack on and I hopped a curb and I still remember the pop sound clear as day and my shoulder started to hurt. I have a hard time conveying pain now after all those years with the messed up back and being on drugs, but really that hurt! My doctor passed it off as a sprained shoulder. I finally went to another doctor two weeks later because it was hurting worse and not getting better (and mind you the whole time I'm still participating in my martial arts class and doing push ups and what not). The second doctor does an x-ray even though he doesn't think there is anything wrong either. One break and two fractures in my collar bone clear as day. They lined right up with my backpack strap. I started looking for answers. I went back to my first doctor and he told me it was because I drank soda and was on the depo shot. I told him I wasn't coming back anymore. I found an osteopath that decided I should have my bone density checked based on my history with my back and now the colar bone. At 20 I had osteoporosis in both hips. She immediately did a food sensitivity test which showed positive for rye oat barley hops wheat and a number of other things like black pepper (the constant sneezing - I should own stock in Kleenex now with how much I've bought over the years) and lecithin (the itchy mouth and constant sinus infections). I saw a GI specialist who's results all came back ambigious for celiac. I went on an elimination diet immediately and even though I was starving I felt fantastic! no sneezing, no pain, no sinus infection and I could go to the bathroom like a normal human being! So two and a half years on bone density medications and miralax and a gluten free diet later, I was able to stop taking all my medications. I seriously believe though that I was six months from dying before I was diagnosed. I had even started having seizures and all sorts of other issues. And now I feel great. I still have my bad days (today is one actually) once in a while, but it's not very often. My depression has been in check for about three years now. I just feel normal. Oh and that stress fracture that's a birth defect.. it's gone. No back surgery necessary.

[Welda Johnson]

Hi, my name is Welda and I have had Celiac symptoms since age 8. Now, at age 65, I am totally gluten-free, milk & dairy free, and always stay away from egg whites, casein, whey, msg, yeast, and maltodextrin & modified food starch from anything but corn. Meats, fruits, and vegetables have made me healthier and continue to keep me strong.

Weighed less than 5 pounds at birth, and spent the first week in an incubator. Got asthma at age 8, when the only remedy was a vaporizer at night. Many bronchial infections followed. At age 19 doctors said I must have allergy testing or I would be "bedridden" by age 25 (I already had 2 babies at age 19 so even though it was a financial hardship, I took their advice). 3 years of allergy shots yielded no improvement. Many respiratory "specialists" and times of being out of commission with severe asthma & bronchial infections followed. Asthma, an ulcer, and spastic colon landed me in the hospital at age 32 after a divorce, and I had to leave my public school teaching job, though I spent 7 years as I raised my 3 children, to earn my degree. Four more hospitalizations in the next couple of years, often with no health insurance.

Finally, I began to eliminate foods--all grains, then milk & dairy. Felt so much better, then went right back to eating them again. Did this many times, until in 2000 I went for a colonoscopy (my dad died of colon cancer). The nurse read my medical history, and when she saw my list of foods to avoid, she said, "Oh, that's Celiac Disease."

I came to this site, began to STRICTLY avoid all the foods that I knew bothered me, and now am usually pretty healthy. I'm breathing so much better, taking medication daily & using a breathing machine a couple of times each day.

What do I eat? Meat, fruits & vegetables, and sometimes I eat only fruits & vegetables. It works!

Best wishes to you all! Welda