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Please read my story.

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Old 01-02-2012, 01:30 AM   #1
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Join Date: Apr 2011
Location: Canada
Posts: 47
DeniseA HB UserDeniseA HB User
Please read my story.

I've always dealt with mild digestive issues. Stomach irritation after eating anything dairy and constipation during that lovely time of the month. I also used to have this thing where I would not want to go number TWO in public. I would just hold it until I got home. Soon as I got home, that washroom better be free! Not a smart idea on hindsight. I would also experience severe lower abdominal pain, that would last no more than 30 seconds. I've been experiencing that kind of pain for as long as I can remember. Never went to the doctor for it. I just put it down to all those years of good (not good) living!

I can even remember the date (April 10-11th). I had just got home from my friends birthday party. It was late at night and I was preparing to go to bed when suddenly I had an anxiety attack. I've never had one in my entire life, up until that point. My heart was racing. I called an ambulance, they came and took me to the hospital. They took my blood pressure and asked me questions like; if I was suicidal or hurt myself in the past, of course not. They did absolutely nothing for me.

About 2 days later, I woke up to severe pain near my breast bone and towards the left side. I didnít think anything of it. I thought I was paying the price for being such a late night eater but i couldn't stop shivering. Maybe I had food poisoning? I drank some peto bismol and tried to go back to sleep. I woke up later that afternoon and felt awful. I thought it was the stomach flu. I was shaking, weak, couldn't sleep, had no appetite. I barely had enough strength to shower myself. I've had food poisoning
before, but never like this. I went to two walk in clinics, they wouldn't accept me. So I had to go to the ER. They took my blood and my urine. I was told by the doc that everything looked relatively normal. I was just fighting off a virus and dehydrated. There was nothing they could real do for a stomach virus. I was given
a concoction of medications that made my throat numb. Was told to eat a lot of yogurt, bland food and to get a lot of rest.

**I'm pretty positive that this is related. Within that time frame, I remember getting very ill after eating at a restaurant. I had ordered a
steak and mashed potatoes. The steak tasted a bit funny and mashed potatoes tasted kind of sour but I still ate it ( how dumb am I?) I just can't pin point if it was before or after i had the anxiety attack. Whatever day that was, the following morning I was so nauseas. I literally had to make myself vomit, to feel better. It was anywhere
between April 1st - 13th.**

After returning from the ER, I took some medication and went to bed. The next day I was still sick. I woke up to this tingling sensation going all throughout my body. It was like a body buzz. My legs also seemed to have a mind of it's own. They were very restless. It was like I was playing soccer in bed or something! I also started to have muscle twitching going up and down my legs. That's pretty much what I dealt with for the two weeks that followed;

Stomach aches
Back pain (in between shoulder blades and to the left)
Excruciating headaches
Lower burning back pain (could barely walk due to that pain)
muscle twitching

I had been going one hospital, that was closest to me. I was treated like absolute dirt. I was told at one point that i needed to see a psychiatrist. I decided that I would never to go to that hospital again. I went to another hospital where they took the time to draw blood, take x rays and do an ultrasound of my abdomen. The results of the x-ray were normal. Ultrasound also came back normal. Stomach, liver, kidneys and gallbladder were all clear. The ER doctor stated that the only thing was that I was extremely constipated. He gave me a prescription for a natural laxative. Tried it out but it did not work. About no more than 3 days later I was on route to my family physician, when I started to have pain in my abdominal area so bad, I thought I was going to pass out. I felt like I couldn't breathe. We went to the nearest hospital. They took blood, urine and x-rays. I was told by the doctor (who was heaven sent!) that I was extremely back up and very dehydrated. I must have bought the entire digestive aid aisle that night at the local drug store. I took some of them and got re-acquainted with the toilet. The next day I felt great. Had breakfast for the first time in a long while. I thought that life was back to normal. Jumped the gun I guess. I felt better for about a good 12 hours

That night I couldn't go to sleep. I kept on being jerked out of my sleep. The muscle twitching had made it's way to my arms and shoulder blades. The headaches started to come back with a vengeance. All I could do was cry. I'd wake up most mornings to internal tremors. It felt like my body was shaking but from the inside. It would go away
after a couple minutes. It felt like a vibrator was inside of my body! Every doctor I went to said that it was either the stomach flu, stress or anxiety.

For the next few days, I would wake up to sweating around my neck, a tight chest and very bad muscle cramps/twitching. I thought what I
may have might be neurological. By this time it's now late April- early may. I went to the local walk in clinic and explained to the doctor what was going on. He couldn't care less. He basically said that i was make myself sick. "Your mind is sick." he said that I needed to lose some weight (I don't deny that). He didn't even bother to look at my file. He did some blood work for vitamin deficiencies, chest x-ray, breathing test and gave me a prescription for Ativan. I went back that following Wednesday. Everything was in normal range. My b12 and thyroid were fine. Also tested negative for Lyme disease. My iron was a bit low, that was about it. I had mentioned MS or possibly even ALS. That was a huge mistake. He thought I was nuts.

The internal tremors, muscle twitching, aching and back pain continued. I then began to have problems with my sinuses. I felt a lot of pressure in my head. My legs started to jerk involuntarily. I feel an electrical zap sensations in my head, that once woke me right out my sleep. It felt like the right side of my head was splitting from my left. Mid May I went back to the same walk in clinic and had x-rays taken of my entire spine. I got a call the next day to come in for the results. I found out that I had C3-C5 forminal stenosis. I also had early signs of L5 S1 disc degeneration. That was a bit disconcerting. My sinuses were surprisingly fine. They told me that fixing my posture and losing weight would take the pressure off my spine. Now the electric shocks made it's way to my right leg. It felt like a lighting bolt went right through it. That leg had also started to pulsate. My right calf was starting to feel stiff.

My birthday (May 15th) came and went. Spent most of that day in bed. The headaches were starting to get worse and even more frequent then before. Sometimes I felt like a liquid sensation was inside my forehead (sounds strange, I know). I thought it was my sinus but that was clear. Breathing started to feel a bit difficult. I actually had to think about breathing in and out. It was like it was no longer second nature. Breathing felt difficult especially when I would lay down on my back or side. I was also extremely sleep deprived. I was lucky to get more than 3 hours of sleep a day. I would fall asleep and jerk back out of my sleep. The slightest sound would startle the hell out of me. Especially at night. Even the sound of my voice would make my heart skip a beat. I thought that maybe i was losing my mind. I had a CT scan done of my brain (no contrast). That came back normal. That was a relief. No brain tumor or bleed, but I was still sick as a dog.

Early June, headaches, aching muscles, fatigue and twitching (now more widespread) continued. My face was now tingling and I was off balanced and dizzy. I made an appointment with an orthopedic doctor. He did nothing for me. He seemed like he was in a rush. Told me that what I had was paresthesia of the face. He told me to do some light exercises to relieve the stress on my back. I felt like I had wasted my time. A couple days later I decided to see another walk in doctor and see about adding some vitamins to my diet. She suggested magnesium and vitamin d for twitching. Also a vitamin B complex. I took them for a couple of weeks (not as religiously as I should
have) and had no results. I had looked up magnesium deficiency symptoms and felt like it all fit me to a tee. Magnesium deficiency can cause a wide arrange of problems including anything from muscle twitching and aching to noise sensitivity and even an electrical shock feeling. I went to my local health food store and bought a better brand of magnesium. I took it for about a week and felt no difference.

Mid June my dad took me to his doctor. He did some neurological tests with me. He tested my strength and tapped my muscles to see if they twitched. He diagnosed me with myclonus. He told me not to worry. I suggested having an emg done. He caved and booked me in for one. It was quite painful but worth it. It came back negative. Which meant that ALS was off the table (thank god) but I was still suffering. I was in the clear for ALS but the twitching was now everywhere. My legs, shoulders, temples. Even my butt, chin and nostrils were not exempt from the twitching. I barely had an appetite and started to have bouts of diarrhea gain (may have been from the magnesium) my hands would shake uncontrollably. Doing simple things like showering would make me so fatigued. Parts of my arm would tingling off and on. My dizziness and facial paresthesia were debilitating. I had a reoccurring swollen bump in the middle of my neck that would come and go every other week.

I took a blood test at the same clinic and was told that my red blood cells had shrunk. I spoke to the neurologist and asked if some of my neurological symptoms were due to an iron deficiency. He said yes. It seemed to me that he just wanted to get me out of his office. The insomnia continued and when I did go to sleep, I'd wake up every 30 mins to a hour. There was one point where I'd wake up every 10-15 minutes.

Mid July, my sinuses were getting worse and I was finding it hard to breathe because of it. My dreams started to become more vivid and more disturbing. I woke up one day with a terrible nose bleed and shortness of breath. I decided to go up to the walk in clinic ( for the millionth time) and try to get some advice. The doctor I spoke to was very nice and listened. She revealed to me that i tested positive for Hpylori (a resistant stomach bacteria) back in April. In a way I was happy. I finally knew what was wrong with me.

I took the 7 day course of antibiotics early August. It was a heavy dose of meds, but I made it through. The only day I felt good was the second day. Once I got through the course of meds, some of my symptoms went away. The muscle twitching/aching, headaches and tingling went a way for a little while but came back shortly. I kept telling myself that the meds needed a little bit more time to take a full effect. I had to wait a month to be re tested. In that time symptoms started to re appear. My sinuses were clogged and painful. I'd have low grade fevers and I was sneezing constantly. Iíd have some good days but for the most part I'd would have rather stayed in bed. A month came and went. I took the urea breath test. I had to blow air into a cup. Drink this lemonade-like substance. Wait 30 minutes then blow into another cup. I had to wait a week for the results. While I waited for the results, I started to develop what I thought were hives and then they looked more like acne. It was all over my chest and arms and they were so unbearable itchy. I still have the scars all over my chest and arms from scratching them In August I also had a MRI done (without contrast) of my brain.
Results also came back normal. No lesions or any type of damage. I took MS off the table.

I actually had to wait two weeks to get my H pylori test results. I ended up testing negative for the bacteria. I was a little disappointed. I had taken this brutal amount of meds, waited a whole month to get re tested and I still feel as sick as a dog, but it's negative. I just felt like it was back to the drawing board. My family doctor told me that I needed to start taking iron supplements. She also gave me a lecture. "You have a dad that loves you, friends and a home. You are driving yourself crazy. Live your life. You don't need a referral to see a psychiatrist."

In September I was referred to a GI doctor, who insisted that I have an endoscopy to see if I have any ulcers. HPylori can cause ulcers. He also stated that none of the my non digestive symptoms were related to my stomach problems. The internet and other people's stories I have read, state otherwise. But he is a doctor. Right?

Mid October I was able to see another neurologist that I was referred too. She was absolutely wonderful. She wrote down all my symptoms and didn't look at me like I was insane. She also wanted to know my family history. I was never asked that before, by any doctor. She suggested that I be tested for an autoimmune disease (ANA blood test) and an MRI of my spine. She also suggested that I should be checked for Celiac disease. I thought that celiac might be the cause of my problems before. However, I was told that it was more of a Caucasian disease (not my words lol). I am black. My father is Guyanese and my mother was Jamaican. My great grandmother was of Portuguese descent (on my fathers side). I can't find out the history. I'm not in close contact with my family. My mother passed when I was nine years old.

I had the MRI of my spine done Mid Nov. It's now January and I'm still waiting for the results. I will not be able to see that neurologist until the 26th of January. I had the endoscopy done on December 15th. I was put to sleep for about five minutes, while they performed the procedure. It was best five minutes of sleep I have ever had! He told me that I had no ulcers and that I should continue to take acid suppressants. I asked him if he checked for celiac. He stated that I didnít fit the description of a person with the disease. "People with celiac tend to lose weight and have frequent diarrhea". ( Like I said before, I've had stomach issues all my life and despite being overweight, I have lost about 25 pounds since April. I cant go to work without being told that I look smaller.) I assumed that he didn't even bother. Biopsies would have had to be taken.

At this point, I'm not really sure what to do. I'm just waiting for January 26th to come. In the meantime, I am thinking of going back to my walk in clinic and insisting on having the celiac blood test taken. Maybe it's just bad luck but the walk in clinics I go to seems so apprehensive about doing things. Like it is there money that is being spent. It's funny because they sent me for 2 MRI tests (which I heard are very expensive) but won't do a simple blood test for me. I dread going to bed because, that's when it seems like my symptoms get worse.

As of right now I experience:

- Tingling, dripping sensation in my head, temples and scalp
- Twitching (facial, hands, legs, tongue, abdomen)
- Vibration in legs
- Nausea ( at least once a day)
- Vertigo
- Abdominal discomfort
- Anxiety
- Fluctuating between diarrhea and constipation
- Dizziness (especially after using the washroom)
- Fatigue
- Back pain
- Muscle and joint pain
- Shaky hands
- Chest pain.
- Ear drums popping and vibrating
- Cracking of joints.
- Bad breath (metallic like)
- Flatulence
- Shortness of breath (especially in the morning and sometimes after I eat)

** Thanks so much for taking the time out of your life to read my story. It's just insane, that i am suffering like this and still do not have answer. This can't all be in my head. I wish I had someone who could help me get to the bottom of this. its been 9 agonizing months. I can't take this suffering anymore. Having some advice or feedback would be greatly appreciated. I'm so scared and lonely. I only 22 years old and I don't know what other steps to take. Please help me.

The Following 2 Users Say Thank You to DeniseA For This Useful Post:
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Old 03-22-2012, 08:47 PM   #2
Junior Member
Join Date: Apr 2011
Location: Colorado
Posts: 19
jzspin HB User
Re: Please read my story.

I see that this was posted a couple months ago and no one ever responded. Hopefully you'll get to read this. I did take the time to read your entire story and thank you for sharing it because I think it might help me--made me reconsider the possibility of Celiac Disease as the cause of my probs anyway. I've suspected CD for a while in myself and many of my symptoms (some of which I've had for my entire life) are very similar to yours.

You say you're waiting on test results and all, but have you considered trying an entirely gluten free diet for at least 3 months or more? (I've read it can take up to 6 months maybe more before people with Celiac really start to recover). This is what I'm considering doing because I don't have health insurance right now as it is, and so I can't see a doctor.

The one thing that stuck out in your post was the vitamins you've tried and you say you did not feel any better from them after a week or so and so you gave up. I've also read that if you are vitamin deficient, whether it's Vitamin D or B12 or Magnesium or Iron, or will take months before your levels get back up and you see or feel an improvement, so maybe you should consider starting some of the vitamins again and just keep taking them each day for at least a few months.

Anyways, here is a list (rather long) of my symptoms beginning with the first ones I ever had which began during early childhood (6 or 7 years old). Many of them have actually gone away, such as the hives, or have changed and the ones towards the bottom of the list are the newest/most recent symptoms:

-severe stomach cramps and bloating from gas buildup diarrhea, sharp stabbing pains, burning pains in stomach. These symptoms are not near as severe as they were when I was much younger, but I remember being doubled over and crying in the hallways at school from the severe pain.
-stabbing pain in throat, sensation of swallowing a knife.
-Frequent outbreaks of hives. I'd usually get these in the evening or at night time. Often on my back or stomach, neck or hands. I was tested for allergies when they first started appearing. Tests were negative. I have not gotten hives in a few years. This one seems to have completely gone away.
-Severe anxiety, panic attacks (on a daily basis beginning at age 8) and depression. Also some hallucinations and other symptoms of psychosis.
-frequent headaches, occasional migraines, hot-flashes, lightheaded, dizzy (vertigo).
-Electrical shock type pains throughout head and other areas of body. These generally last a few seconds and go away but it is a paralyzing feeling of pain when they come. These have gotten worse over the years.
-TMJ symptoms/issues. Jaw pain, popping, clicking, feels like my jaw dislocates at times, clenching and grinding teeth at night. This seems to cause lots of headaches and pain during the day.
-Sinus issues. These seemed to get much worse after recovering from a severe sinus infection about 3 years ago. I now have constant thick mucus drainage from the right side of my throat each day, swelling in right nostril (cannot breathe normally out of that nostril. Constant sinus pressure, pain in face and head. Popping in ears. My left ear literally pops a couple times every single minute of every single day. It feels like there is fluid inside.
Reoccurring UTI/bladder infections, trouble urinating and emptying my bladder (even when I don't have an infection). Frequent need to urinate. Very strange smelling urine for a few years. Seems to have improved.
-tingling and burning sensations in legs. Especially when exercising.
-knotting up muscles, stiff joints. Back pain. Have been treated by a chiropractor/sports med doctor. She was actually the first to suggest gluten intolerance/celiac based on this and my numerous other symptoms.
Disturbed sleep-difficulty falling to sleep, am a very light sleeper and didn't use to be. I now wake up at the drop of a pin, very vivid, long lasting dreams. Not always bad but when they are they are completely hell-like. And this is strange and fairly new--Often when first drifting off to sleep I become very sensitive to the slightest noise or movement. Any little noise will jolt me back awake and give me a feeling of heart attack or severe panic and a sudden jolting electric shock throughout my entire body. Will sometimes hear voices (audio hallucinations) at the same time.
-Rise in body temp when resting or sleeping. Sometimes will wake up with a severe, pounding headache and feel very hot all over. For some reason this happens the most when I take a nap and not as much when I go to bed for the night. Because of this, I rarely take naps anymore because they only make me feel ill. My bf also comments on how hot I get at night.
-Most recent and most irritating--sudden vision disturbance. Severe sensitivity to light, trouble focusing, trouble following moving objects, feels as though I'm becoming cross-eyed or like my peripheral vision is overly aware. I am constantly seeing my nose in my field of vision. I can see the tops of my cheeks when I look down just a little and see my eyebrows when I look up slightly. This one is really affecting my ability to function and it's making it difficult in social situations as I cannot see people properly.

Like I say, I don't have health insurance and the last time I saw a doctor was two years ago. I went to the ER late one night because I felt as though I was dying. The only thing which came back abnormal was my thyroid level. The doctor came and told me I had hypothyroidism and to take a couple weeks off from work. That was about it and I was sent home. About six weeks later, I went in for a full physical. This time everything was normal, even my thyroid level.

My family members and bf began suggesting it was all in my head, that I was a hypochondriac or that it was all stress related. I decided to give up on doctors and give up on sharing any of this sort of information with anyone. I didn't like people suggesting it was all in my head because I know it isn't, but still I don't talk to anyone about it anymore. Just keep it to myself. I even try to believe/convince myself that it IS all in my head and tell myself to get over it.

Since I would prefer not to see a doctor even if I did have health insurance, I am going to try a completely gluten free diet for at least 4 months and see how I feel after that. If I feel even slightly better, I'll push it to 6 months.

Hope you've found some answers since having posted this. Hope you're doing well and feeling better

Old 07-17-2012, 03:29 PM   #3
Join Date: Jul 2012
Location: Austin, TX, USA
Posts: 2
Kit1957 HB User
Re: Please read my story.

All of my life I also suffered from nearly all of the symptoms both of you listed. Since being confirmed as having Celiac and going gluten-free, I've had had nearly all of these issues resolve. I still have pain/weakness in my upper left arm (which could be a non-related torn rotator cuff but ins won't approve an MRI). I recently gave in to cravings and ate foods with gluten. Within two days I had fatigue, body pain, severe scalp pain, headaches, difficulty thinking clearly...sound familiar?

Hope you have resolved your issue, but if not, ask for the Celiac blood test. They can test for presence of the antibodies and taking that information and either endoscopy and colonoscopy (or a review of previous tests), you can get the confirmation if that is the problem.

Last edited by Administrator; 10-24-2012 at 04:45 PM.

Old 07-19-2012, 01:28 AM   #4
Bets G
Join Date: Jul 2012
Location: Arizona
Posts: 2
Bets G HB User
Reply to DeniseA

E]You have all the symptoms of celiac. I have been suffering with most of your symptoms for about 10 years. The last 3 years is when they became unbearable. The doctors will do nothing for you. The head noise and metallic taste in the mouth were alarming. I got to the point where the fatigue was do bad that I could not function anymore, I would sleep for days. I was dropping weight every month and I was eating like a pig but I was still hungry. My thyroid began to not function properly and my throat became very dry. That is a symptom of the thyroid. I have been Gluten Free for 7 months now and I have no symptoms anymore. I might take awhile for your body to began to feel normal but most of the symptoms go away in a short amount of time. As long as I DON'T eat anything with gluten, carrageenan (with is a thickener made form red seaweed, or irish moss), modified food starch, artificial colors and flavors, and medications (most have these things). If I eat any of these things I will know right away! Celiac I very dangerous if you do not follow a Gluten Free lifestyle. You can develop Type 1 diabetes later in life. If you haven't got the results of your test for celiac yet I would still try a Gluten Free diet, it wont hurt, it will be better for you anyway. Hope you feel better and this was helpful.

Old 08-30-2012, 06:33 AM   #5
Join Date: Aug 2012
Location: Hartford City
Posts: 1
doug6666 HB User
Re: Please read my story.

Did you get an answer? i have everything you described and understand how you feel, not having answers.

Old 08-30-2012, 07:05 AM   #6
Senior Veteran
Join Date: Feb 2007
Location: Chester, VA
Posts: 2,210
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Re: Please read my story.

hi I've been on a GF diet for about 3 weeks now still waiting on some results.

Hope you feel better soon ((((HUGS))) cj

Last edited by Administrator; 09-28-2012 at 12:27 AM.

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