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Deniseannette added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsEndoscopy Experiences?Hey Everyone,
So, I'm having an endoscopy done this Thursday. I'm very nervous! I was so nervous that I actually rescheduled my last one! What a whimp, I know! I wanted to know your experiences with it? Did they knock you out completely? Would i be able to go to work the next day? What are the chances of complications? I'm kind of annoyed that they didn't do the blood panel first but, I guess i got to just go with it?
Wish me luck! Hopefully, I don't back out this time...
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Deniseannette added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsVery Ill. Pls Read My Story (Long)Thank you so much for reading my story. I have been suffering for the last 7 months and continue suffer. Let me start at the beginning.
I'm 22 years old, never exactly lead a healthy lifestyle. I've never
been a good cook (last time I cooked I gave myself food poisioning). More often than not I would eat out. Doesn't help that I work at a resturant! Never really exercised as much as I should and I don't have a regular eating schedule.
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 in hindsight. I would also experience severe lower abdominal pain, that would last no more than 30 seconds. I've been experiencing the 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 at Midieval Times. It was late at night and I was preparing to go to bed. All of a sudden I had an anxiety attack. I've never had one in my entire life, up until that point. My heart was racing and I couldn't breathe. 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. I literally sat in the waiting room for 2 hours. I finally asked if I was going to get any help and the man at the desk pointed at the phone. I just left, went home and climbed into my warm bed.
About 2 days later, I woke up to severe pain near my breast bone and
to the left side. I didnt 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..again? 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 apetite. I
barely had enough strength to shower myself. I've had food poisoning
before, like I stated 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 yoghurt, 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 resturant. I had ordered a
16oz steak and mashed potatos. The steak tasted a bit funny and mashed
potatos tasted kinda 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 nausea! 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;
Back pain (in between shoulderblades and to the left)
Lower burning back pain (could barely walk due to that pain)
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 psyciatrist. 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 abdomin. The results of the xray 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 presciption for a
natural laxative. Tried it out but to no effect. About no more than 3
days later I was on route to my family physican, when I started to have pain in my abdominal area so bad, I thought I was going to pass
out. The pain was so bad, I felt like I couldn't breathe. We went to
the nearest hospital. They took blood, urine and xrays. 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-aquianted 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.
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
shoulderblades. The headaches started to come back with a vengenace.
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
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 really 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 xray, 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. That
proved even more to him that I was mentally ill.
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 involuntarially. I
had what felt like 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 xrays
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 shock 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 headache started to get worse and even more frequent then before.
I would count my luck stars when I would just have a mild headache.
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.
Now, we are into 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. 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 religously as I should) 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. This might sound funny ( you can laugh) but when I would take my vitamin b complex and magnesium, my dreams started to become more vivid. I could remember everything from my dreams. Most people would find that to be pretty cool. Unfortunately, most of my dreams were nightmares.
Mid June my dad took me to a doctor that he swears by. He did some
neurological tests with me. He tested my strength and tapped my muscles
to see if they twitched. My right palm 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 direaha again (may have been from the magnesium) my hands would shake uncontrolably. 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 and very disconcerting. I had a reoccuring swollen bump in the middle of my neck that would come and go every other
week. Was told by my primary doctor that it was just tissue. Went to
another doctor and told it may be due to dandruff (never head of that,
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
It's now mid July and my sinus 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 sort of 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 antibotics 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, with a vengence. I tried my best to stay positive. 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. I self diagnosed myself with hayfever. In between, I'd 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 I started to develop what I thought were hives, then they looked more like ance. It was all over my chest and arms and they were so unbareable 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). Results also came back normal. No lesions or any type of damage. I took MS off the table when I got back that result.
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 anda home. You are driving yourself crazy. Live your life. You don't need a referal to see a pshycriatrist." I knew she didn't believe me from day one.
Just last week I was able to see another neurologist that I was
reffered to. 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 is going to have me tested for an autoamunie disorder. I have an endscope scheduled for late next month and and a MRI of my spine scheduled. She also wants me to be checked for Celiacs disease. I had thought that that might have been it. 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 jamacian. My great grandmother was of portuguese descent (on my fathers side) but I dunno if that really stands for anything. Too far down the line? I'm not in contact with my mother's side of the family. My mother passed away when I was nine.
As of the right now, I still experience the same symptoms:
Alternating between wet and hard stool
Not quite diareha
Not digesting food. Could see it in stool (I'm so sorry)
Tingling of extremities. Hands, arms, legs, feet
Ocasional muscle twitching
Ance on chest
Tingling scalp and forehead
Stomach and intestinal twitching
Stab like pain in stomach and buttock
Rumbling on the left side of back near stomach
Thanks for taking the time to read my story. Can anyone give me some insight as to what this might be? I do believe that this might be the story of someone with celiacs disease. Even though it is "rare" for my ethnicity to have it. I want to also state that I haven't really changed my eating habits since April.
Maybe Candida? I spoke to doctor about this and he said straight up "NO". I researched it and the symptoms that I have do match up as well. I have a history of strep throat and ear infections as child, which did require antibotics. Plus those 7 days of meds I took in August?..
Gallbladder? I thought that this might be the culprit. The constant back pain right in the middle, shoulderblades and the aching in that area. My ultrasound in April however, said that my gallbladder looked clear.
Any comments and/or feedback would be so greatly appreciated. I want my suffering to stop and any advice would be wonderful.
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