At the end of the line.

[Beth2027]

HI,
I'm sorry that this will be a long entry, but I need to make sure I am thorough so that maybe someone can spot something.
In 2009 I had my gallbladder removed. In 2011 I started getting a very upset stomach, dizziness, confusion, and heartburn. A colonoscopy then found diverticulitis, IBS, and the endoscopy that had taken the biopsy said that it looked like I might have celiac disease. I had a blood test done a few days later and it came back negative. At that point when I asked what the result of the biopsy meant the GI doctor said nothing. I began a gluten free diet to see if it would help and it did quite a bit. i felt almost normal again. In January 2013 I had symptoms return with force. I was very dizzy and lightheaded, very hard to concentrate, shaking, and constant nausea with lack of appetite. I was so sick I could barely move. I have on again off again symptoms and sometimes there is a pressure in my ears and a pressure in my chest, like I can barely breath. The GI doctor said that I could have GERD and I went on omeprazole for 5 weeks and I didn't really feel any better. I had another colonoscopy and EGD and the GERD was all they could find. In about March, I started chiropractic and acupuncture care since all the blood tests were normal and I was out of options. Some of the tests I have had that were normal were:Echo on heart, test for diabetes, ultrasound of abdomen, testing for inner ear problems (I just laid over the table and they looked to see if my eyes twitched), MRI, Allergy testing from allergist, thyroid test including T3 and T4, and general blood tests. I had a tilt table test done and they thought I might have orthostatic hypotension. They weren't 100% on it though. I also had a test done to see how fast food goes through my system and they said I have rapid gastric emptying or dumping syndrome. I also had slightly high red blood cell count and hemoglobin, but that I see can be due to dehydration, which I have been monitoring. I have been following the dumping syndrome diet for several months and I still get the same symptoms. I took out gluten, dairy, processed foods, and anything that seems to make me feel worse. I looked into leaky gut syndrome and have been taking probiotics and vitamins, but that doesn't seem to be helping either. Symptoms sometimes happen right after eating something and sometimes an hour or so later. I have to eat every two hours or I start to shake and get very dizzy. Again, my pancreas was tested and it was fine. I even have a blood testing machine and during those episodes it's never below 80. I am really at a loss here. I do feel I'm under stress from work, home, and even traffic in between, but I've never had any anxiety disorders and I find that I have small episodes where I feel very anxious and irritable, but that goes away by the end of the day. Some days I feel better than others. Many days this year my fatigue is almost maxed out and I feel I could fall asleep any time even though I had enough sleep. I'm not sure what else to say. I seriously considered moving back in with my parents because it is extremely hard for me to go to work. I know I can't get disability because I still have a job. Any ideas or thoughts would be helpful. I would love to feel like myself again. I am a 28 year old female.

[CalGal]

Beth, the vestibular test is a decent 'guess' and should be done. It can be surprising at how screwy the brain and body will act if the eyes and the ears don't function properly.

I assume you've seen a rheumatologist and autoimmune issues have been ruled out?

With the migraine, do you have pain in the head that is either forehead related, or at the back of the head (bottom of the occiput) and have a line that's tender and/or hot at the  top of the head, kind of ear-to-ear or thereabouts?

Are you taking ANY medications? Do you get rashes or blotches?

[Beth2027]

I did have a cross reactive test through cyrex (array 4) and I had twice the normal levels for all milk derived products. I hadn't really been drinking or eating dairy much anyway, but now I know to avoid it all together. I also reacted to eggs and amarath, which is in a lot of GF foods, including my bread that I eat a lot. I have taken all of these out of my diet and the symptoms persist. I went to a followup for the MRI today and the doctor wanted me to try vestibular therapy and that will help them decide if i possibly have a chronic migraine. i guess that doesn't have to have an actual migraine to cause symptoms.

[Sheanybird69]

I feel for you. It's so frustrating. A whole mess of symptoms and no real answer. Just bits and pieces here and there. I was diagnosed with neurocardiogenic scope from the tilt test after they shot me with adrenaline . Thought it was going to kill me. I take nadalol for that and it helps with the overly sensitive autonomic nerve response. I was also diagnosed with gastroparesis after the stomach emptying test showed only 10% emptying after an hour. They put me on reglan but it didn't make a difference and made my head jerk like i had parkinsons. Then, I had my gallbladder out  after a test showed it wasn't functioning and it had a mysterious black velvety substance. That was the best the genius pathologist could come up with.  Then....I had my 2nd neurologist trip and this one saw what the other one missed. I have MS. It's not supposed to have any effect on the autonomic  nerves, but these issues are very common in ms patients.  I have had all toxic metal removed from my mouth. I steer clear of any artificial sweeteners. The celiac test i had years back was negative but i get a lot of gas in my stomach after eating wheat stuff and that gas causes dizziness, confusion, anxiety, shortness of breath, rhythm changes and adrenal surges when I'm trying to drift off. I have also been fighting with my complexion being bumpy and my pee smelling strong for over a year now. So frustrating to have so many issues and not know why or what started it or what you can do to fix it. I am on Facebook if you want to talk. I rarely get on the internet but was looking up those symptoms and found this board. Sheanean Sharp Harman

[CalGal]

Beth, are you still GF? Completely GF? And have you been checked for other food intolerance issues? Something like 50% of those with gluten issues cross-react to casein, the protein in dairy.

[Beth2027]

I should also mention that I have had dizziness non stop for 8 months. Some days are better than others. I had been keeping a food journal, but when I would eat teh same food, one day i'd be ok, the next not. I've also had constant pressure in my sinuses, but CT on them was ok, no infection. I did have a massive sinus infection when I was three that spread to my eyes and brain. i was on antibiotics for 6 months and it seems like my ears and sinuses are connected because I can use the neti pot on one side and get sharp pain in my ears.