I thought this would be an interesting topic.

For me I woke up one morning sick as a dog, with nausea, diarrhea and abdominal pain. It literally hit me overnight

It was a year ago when I finally realized that there was something seriously wrong with me. I couldn't keep anything in my system for about 3 or 4 days. Everything instantly came out. I thought I might be getting dehydrated or something. It was on a weeked so I went to outpatients and got referred to my GI specialist. Four months later I had got diagnosed with celiac.

I used to throw up every night after dinner when I was in first grade. It would build up: I would eat, start to feel sick, throw up, then be fine. It happened nearly every night.

I started getting 12-24 hour bouts with abdominal pains, cramping, and vomiting in fifth grade. I got them consistently throughout fifth and seventh grades, which is when I seriously asked a doctor about this and got diagnosed.

this will be interesting to read the posts in here, but for me--i dont even know where to begin--i was sick for so long that i cant even remember what happened first i did have a very stressful year 23 yrs ago when my sister lost her first baby and i was pregnant with my 4th and feeling guilty---stress can be a very strong trigger for us--i think that may have pushed me over the edge, but i think i had been sick for a long time before that my sister was a celiac that craved dirt as a child--so i am thinking this started when we were kids took the doctors way to long to figure us out--i will be watching for all of your stories-- deb

It was nothing big enough that I realized it in particular. It was a suggestion of someone else and a connection of bloating, hemmhroids and being tired.

My daughter loved to eat sand when she was little....hmmmmmmm........ very interesting.

Also for my 9 year old daughter...... she always complained of tummy aches and would double over in pain everytime after eating.

For me, apparently it was headaches. I'd suffered through chronic headaches for 4 years before any kind of stomach problems began. I had every test imaginable and no one could find a cause for the headaches. I also had vertigo, tingling/numbness in my left arm and leg, everything was on my left side-even the headaches. My symptoms were so bad my doctor was afraid I was heading towards a stroke and I was still a teen when it started.

I have problems with my eyes, my left eye especially (I'm legally blind in my left eye), so we just figured the headaches have something to do with my eye. I still think my eye is involved, at least to a certain degree, especially since I still get the headaches. Though they are not as frequent since I was diagnosed with celiac disease.

Anyway, I began to get stomach aches after I ate. By this past June I was having stomach aches, cramping, bloating, constipation/diarrhea, nausea so bad I didn't want to eat anything. At first I thought it was my lactose intolerance acting up until it didn't stop. I called my doctor in July and he immediately told me to try cutting out gluten and got me tested and he was right.

Samantha

at the very beginning I started getting grey hair at 15, and started losing my hair. Then I started rapidly gaining weight, having very low energy. Then I intentionally started to lose weight, and when I stopped I continually was losing weight even though I started realizing I was losing to much weight and began eating quiet a bit. Then I stopped menstruating, and have had headaches, and joint pain, and continual very low energy and mental fog, and I am only 19! Hopefully being gluten-free will change all these soon.

Rachel

I started getting DH sores on my hands and face when I was 16. Then, my senior year of high school, I started to get really bad tummyaches and was vomitting blood and losing a lot of weight. I stopped getting my period and lost about 40 pounds. Finally, 3 years and 6 doctors later, one finally took one look at my chart (after I had passed out at work from total dehydration and got sent to the ER by our staff nutritionist) and asked if I had ever been tested for Celiac Disease. The rest is history.......

My daughter was about 13 months old when she had the runs for 2 weeks, followed by 2-3 months of smelly unformed stool, lethargy, weight loss, crankiness, bloating. Testing provided no conclusions so no official diagnosis and only going gluten-free made her health improve and her symptoms abate.

I was 16 and went to LA on a mission trip during the summer and came down with Strep Throat. I went undiagnosed and sick for a week. (Becoming dehydrated, splitting headaches, exhaustion, nausea, lack of appetite) I came home and was tested for Mono, Strep, and Scarlet Fever. Wad diagnosed and started to recover. I then went to summer camp as a counselor and couldn't keep anything down for a week. I literally ate nothing and still had major diaherra. MISERABLE I came home and spent two days throwing up. After that I simply couldn't seem to get totally better, always getting stomach aches, and overall never being healthy. I went totally gluten free in January. I'm not sure if I triggered Celiac there or if I had all my childhood when I would have "phantom stomach aches," which were declared physcological and an attempt for attention. It was either when I was nine or 15.

Looking back, we could see quite a few signs our dd showed that we had missed. Then she got diarrhea that didn't go away. She lost weight and got incredibly lethargic. She was diagnosed a little over a month from when the constant diarrhea started. She never ate dirt, but she did like to lick paper. I would catch her hiding behind something licking the pages in her books, or even occasionally photos. I got her to stop the photos since there were chemicals on them, but I don't know if she ever stopped the paper until she went gluten-free.

In regards to the children that licked paper, ate dirt or sand, has anyone had an explaination from their doctor ?

My only thought on this is that I know animals will eat things out of the ordinary when their bodies are not getting the proper nutrients. Could something in children be signaling this too?

Just a thought to ponder..

Cravings such as these are known as pica, and indicates a deficiency, if I remember right, of either Zinc or Iron. I used to eat match heads when I was very young.

Makes sense with Celiac causing absorption isuues and deficiencies that some people would experience this.

I knew I had a problem with food but refused to see it for what it was for years. However, looking back, my symptoms actually showed up about 5-7 years before I had serious, unavoidable symptoms. Now, I realize that all the pain and symptoms have been going on MUCH longer than I originally thought--more than 13 years, it just got to the point where I couldn't ingore them any more.

-Kate

I too ate the ends off matches, when I tell people that they think I am crazy!!!!!

I'm not really sure what is connected with celiac and what isn't.

For me it really got going a little over 7 years ago upon coming back from China after adopting our daughter. I got very tired, cold all the time, & went down to 68 pounds. Ultimately, I was diagnosed as Anorexia.

My symptoms progressed in a slow sneaky manor.

Early 20s-Food intolerances that would come and go.
- Driking beer would stuff me up and make my heart race.
- Nothing too bad

25 to 28- Same as above along with constant fatigue and colds/flu every other week.

28-32 –this is when my GI issues started up. Mostly urgency issues and cramping. Year by year getting a little worse . I was getting numbness in my hands. I felt like I was falling apart physically and mentally. Loss of strength at the gym. Until…………….last year when all above symptom came on at once –I lost 35 lbs, everything I ate hurt my stomach, constant/urgent need to go to the Head, felt like I had a flu.

Mine started kind of out of nowhere. Thought I had eaten some bad meat, or had a touch of the stomach flu. Wound up in the bathroom a lot. And 3 months later, I'm still in the bathroom a lot. Lost weight, which is nearly impossible for me to do w/o exercising excessively.

Becoming afraid to eat anything, since it all tends to hurt, or result in an urgent need to find a restroom.

Still awaiting test results, and on the verge of a break down. Gone gluten-free as of yesterday officially, I dont care if I ever am officially diagnosed, just get rid of the pain!

Match heads, I had never heard that one. I had heard about Pica, but I always thought it was wanting to eat dirt or clay. Once Ashlee was diagnosed I made the link to the paper, I think it had to be connected. I figure I will know a bit more about when this all started when she eventually evens out on the growth curve. If she gets back to the 50th percentile like when she was a baby, I know things were affecting her growth even before she was 2. We really noticed the slowed growth when she was 3 though.

I like this topic as well. It seemed to have crept up on me slowly for a period of a few years. I have always had a sensitive tummy, but in my early to mid twenties I began having constant diarrhea. I went to a GI specialist and he diagnosed me with IBS, he said that it wasn't a big deal and that a lot of girls my age had it. He put me on a mild diet and I just thought that this was something I just had to "deal with", not even being aware of the existence of Celiac.

Then, during my late twenties, in fact just this summer, I started to get an itchy rash on my face. I started to monitor my diet and soon came to realize that it was wheat that was triggering the rash. I met a Celiac, we discussed my symptoms are learned of the Gluten Free diet. I went on the diet, my symptoms had improved durastically, until very recently. It seems that I cannot help but to avoid the occasional accidental encounter.

Anyway, I was wondering, is this normal that these symptoms have taken so long to appear? Do many others have increasing symptoms as time goes on? (ie: the sudden appearance of DH?)

Thanks guys,

Jools

Looking back, my first symptom was constipation. Then I would get anemic. I never did get any of the classic symptoms. I found out about celiac when I was researching causes for my mom's death. Her colon had ruptured in three places, and I wanted to know why. Her docs said it was allergies, stress, and smoking. When I looked into intestinal problems, I found celiac. She had about half of the symptoms. Then Woman's Day published that article, and I had many of the atypical symptoms. I tried a glutenfree diet, showed improvement, and my doctor said I was sensitive to gluten. When I had gall bladder problems in September, my doc thought it was ulcers, so he ordered an endoscopy. The GI doc that did the endo found red sections, and did biopsies. celiac disease was found, which surprised the gall bladder doc (but not me), and no ulcers were there. Now that I know that I HAVE to be gluten-free for life, it is easier for me to deal with. My older sister has many of the symptoms that I had, so now she is looking into going glutenfree.

I was sick for years. My Dr went from one thing to another she tested me for everything, Chrons, Ulcers, Cancer, RA , and the list went on , finally she thought it was my gallbladder when that was neg and I started losing 5 pounds a week and couldnt eat anymore because everything made me so sick she ran the blood test for Celiacs. I should say that at this point I was told by another Dr that I had severe IBS with diarrhea and should take some new medication that had life threating side effects That was back in Feb04 the diet has been helpful, almost completely painfree most days but still very tired most days At least I dont feel like I have the flu anymore. Thats what I used to tell people It was like having the flu everyday for months. Now if I could just find a legal energy pill I would be good

I never had bowl problems. I started getting cramps and aches in my feet and lower legs, couldn't sleep at night and I felt so tired. Then, when I walked up a flight of stairs my heart would go bang, bang, bang. Lastly, I could not walk very far without stopping because I could not get a full breath (thought it was asthma). Also, starting eating pretzels morning, noon, and night, was obsessed with them, even carried them in a baggie so I could munch on them in the car.

After many doctors and tests, and an iron fusion, I was diagnosed by a hemo dr in August, 2004. I felt better one week into the gluten-free diet but the doctor said immediate relief was from the iron fusion.

I had an unexplained low hemoglobin for approximately 1-2 years. I went in for a colonoscopy and EGD with duodenal biopsy and was very surprised to learn I had celiac sprue. I did not experience a decrease in energy level as I have taught exercise classes and run long distances (2 marathons) for many years. I have lived with abdominal pain, diarrhea, bloating, constipation and gas for as long as I can remember, but I thought that was just the way everyone functioned. Now, in retrospect, it must have been the celiac disease causing the problems. I was diagnosed in June of 2003 and have not been successful in remaining gluten free for more than a week or so at most so I am continuing to live with the symptoms.

Hey Racheleona,

After reading your post, I really wondered if you have Polycyctic Ovarian Syndrome. Your symptoms really sound like it. You can visit soulcysters.com and they have a great info section and message board.

Melanie

hi melanie,
I asked my doc. about pcos, and he said "oh no, you don't have that", same with my obgyn. I do have every single symptom of it though!

Hey Racheleona!

That is what my Obgyn told me too. If you have any other symptoms of PCOS like excess hair, you might want to get your Obgyn to test you (hair loss can be from celiacs too especially if it is overall loss). Mine did finally test me and did find some blood work abnormalities, but I've since had many tests done and seen two endocrinologists and they agree I have some higher than normal bloodwork, but they don't think I have PCOS. I may have a sub-clinical case if I do have it.

Have you been tested for Celiacs yet? Are you on the diet? Is it helping? It seems to be helping me, but I cheat a lot still.

I can remember when I first noticed something was wrong. I got sick on my way to work probably about 18 years ago. I didn't go to the doctor because I thought it was the flu. I continued to get sick, went to the doctor and he told me I had irritable bowel. Then I was so embarrassed that I didn't go back for several years. I got very ill and lost twenty pounds in a four week period. I had been going to my gynecologist at the time and when I lost the first 10 pounds and told him I had lost ten pounds in a 2 week period he said a lot of his patients wish they had the same problem. When I returned to him two weeks after that I had lost an additional ten pounds and then he was concerned. He sent me to an internist who did some blood testing. The blood test showed something named "celiac" but he said it was so rare he was sure I didn't have it. He told me to eat soup, oatmeal and toast thinking that soft food would ease my stomach pain and symptoms. He also thought I should go to counseling because it was probably "stress-related." I did eventually get better and then two years ago I started getting sick again, lost additional weight and finally went back to the doctor. This time he sent me to a GI and after the blood test was off he did the biopsy and it showed celiac with the villi almost gone.
I suppose if I had it to do all over again I would of insisted the first doctor look further. By the time it was diagnosed my body was very weak and I ended up in the hospital for seven days.
What I have learned from all of this is that we must trust our own body's and when we know something is wrong then we must insist that an answer be found.
Any thoughts about this?

Blood test for IgA and IgG drawn without my knowledge.

Hi Jynix's mom:

So did you have the blood drawn on yourself or your child? What were the results?
Sometimes they do a full panel screening which includes testing for this to see why a person is ill and then it shows celiac disease. Is that what happened? Was a biopsy done yet?
Hope all is well

Hi Sally.

The blood draw is on me. They were just fishing around, supposedly because of my vit B deficiency, but I've had that for about 4 years and this was the first time anybody ck'd. I came up as weak/moderate positive, but neg on the TtG and EMA (I think?). Have a mild case of DH that dissapears right before dermatology appts. No biopsies on skin or intestines as of yet. I'm just not happy they ran this test without telling me what they were doing. They also told me not to worry about it unless I developed symptoms. Hah!

Oh well, I'm not giving up, but I am getting tired!
Heather

Just thought I'd add my son's list of symptoms for others to reference. They may not all have been from Celiac but I kept track of everything in case the doc needed it:


• Husband’s sister has it
• I read that a parent with an autoimmune disease is more likely to have a child with Celiac–I have Grave’s Disease
• B was 4 weeks early
• B had chronic diaper rash/diarrhea for the first 3 ½ months of life ( I was nursing him)
• B’s diaper rash/bowel problems went away when I quit nursing and started feeding him formula
• his diaper rash/bowel problems returned after we started branching out on solid foods
• He would periodically get bowel movements that looked as if he had been eating sand and give him a terrible rash. The only information I could find about it was on a celiac forum where all the parents mentioned the same problem when their kids had gluten. I read that the “sand” was from intestinal damage
• B only gained two pounds between 12 and 17 months. I read that people with celiac have trouble absorbing food properly.
• Bt would eat and eat as if he was starving to death all the time.
• He would have bowel movements 2-4 times a day and they were always soft or runny and the diapers were really full
• B was really skinny but had a large belly for a long time. He looked like one of those starving Ethiopian kids. I read that celiac can cause that because the intestines swell up.
• The worst incident of diaper rash/sandy diapers happened after eating whole wheat pizza (the only real change in diet in the past few days)
• The worst incident was also after he got a bad flue when his immune system was probably more active and could have had more of an effect on his intestines (I had a similar problem with Grave’s disease after having the flue).(I wasn’t entirely sure it was the flue, he had diarrhea and stomach cramps for four days, then he started throwing up and acting flue-like the last few days.).
• His bowel movements solidified when we put him on a gluten-free diet
• He got colds easily which makes me think his immune system was weakened
• He has oftentimes had a hard time sleeping (my sister-in-law said that she had that trouble too, but I don’t know how it relates)
• B spit up a lot long after most kids quit spitting up (13 months, maybe?). He would still spit up occasionally after that.
• Thin hair
• Weak toe and fingernails, and the skin around it
• sensitive skin (dry on ankles and back of legs)

Oh, wow. This is amusing in a way. I've been looking over my past and seeing the symptoms over my life. It's a bit overwhelming.
6 yrs of age I was a day dreamer in class. This is the same year my headaches started.
7-10 yrs. Severe headaches and leg pains. I didn't stand properly. I remember getting brain scans, full body x-rays and fitted for leg braces before they said it was "growing pains" and "stress".
The headaches continued.
17 I had a gallbadder attack and kidney, bladder infection so bad that I ended up in the hospital for days.
I had my parents sign me out because one kook dr thought I needed my galbladder out and the other kook dr said it was fine. I was in severe pain. But it eased up.
That same year I lost half my hair. "stress"
I've always had issues with my stomach. I thought it was normal for me.
When I was 18 I started getting severe yeast infections that I dealt with until I cut wheat out of my diet.
That was two years ago. I would still get a nasty infection if I ate too much rice bread or anything with yeast in it.
Three months ago. I cut out all forms of proccessed foods for a week.
When I went back to eating the way that I was...I got ill. Severe D, fatigue and malabsorption.
I had my secreter status tested throught Dr. D'Adamo's site and found that I'm non secreter.
That explains some of it. According to him, non secreters are 200% more likely to have celiac than others.
The non secreter diet, which kicked most gluten out...did not help.
That's when I started researching my issues. I found this site.
It's been LOADS of help!
I'm currently waiting for my enterolab results.
I've been full on gluten free for a bit over a month now. I'm taking liquid vitamins and following many suggestions from people on this site and I'm feeling MUCH MUCH better.

I'm sure you've no idea how much you help people that come here and just read and learn!

I was diagnosed after having diarrhea for about a month, and bruising and bleeding problems. My brother also has Celiac. When I asked him what his symptoms were he said he "Had NASTY gas". I replied, "Don't all guys have nasty gas?"

DD woke up one morning and threw up 3 times and it went on for 3 more days. Bought her to the doctor and he said maybe the cough she had with croup was making that happen. We got the cough under control and she was still throwing up in the mornings.