Getting An Endoscopy Tomorrow..

[dreemilyn]

Hi everyone,

I just wanted to try and (as briefly as I can) explain what's been going on with me. I have an endoscopy tomorrow to get tested for Celiac Disease and my sister just got it done and hers was positive (that's how I even thought to get tested myself.) and I guess I just want your input as well....I'm sorry if this ends up being long.

I've been very sick for the past 2 years but when I look back on my life, I can see that I was gradually becoming more and more tired and weaker. As a kid, I had terrible ezcema and medicine never seemed to help it. I still have it on the backs of my knees at times. I was an irritable kid although my mom doesn't remember me having stomach problems (but she had five kids so maybe thats why! lol). I can remember being about 9 and having constipation a lot as well as diarrhea at times. I would also get stomach pain that was so bad once in a blue moon that I'd be doubled over in pain with it. I went through puberty very young but I never had a menstrual cycle ever. I was diagnosed with premature ovarian failure at 16. I was told to take hormone replacement (estrogen) and I've been off and on it for years because I have terrible side effects from it - dizziness, more fatigue, and nightmares. I've been told that due to a lack of estrogen, I now have osteopenia. I am also hypo thyroid which was diagnosed around the same time.

I went to high school normally. In fact I probably felt my best those years but I always had a very hard time waking up in the morning and my whole life I was never able to run or participate in gym class without becoming really short of breath and getting dizzy. When I look back I can remember feeling dizzy in school a handful of times. I also had terrible sinus problems growing up.

At 18 I worked in a pharmacy where I was standing all the time and this is when my real problems started. I began to feel lightheaded and exhausted and I was sleeping a lot. My legs were cramping up and while I had pain in them growing up (the doctor called "growing pains") this was excrutiating to the point where I couldnt sleep because of it.

At 19 I went on a trip to Oklahoma with my niece and I didn't eat or drink much and I became severely dehydrated. That was the first time I passed out but not the last. The hospital said I was dehydrated and gave me IV fluids and said I'd get better but I didn't. Even just getting on the plane was a nightmare because I could barely walk. For that summer I was bedridden and nobody knew why. I was in and out of the hospital. Finally in September I went online and researched my symptoms. I realized my blood pressure was way too low and my heart rate was too high. Thats when I found a website that described me pretty well and got a hold of a cardiologist in Virginia who officially diagnosed me with Postural Orthostatic Tachycardia Syndrome, a form of Dysautonomia where your blood pressure drops and your heart tries to compensate for it by going up. My doctor once told me though...if we could find out the cause of it, I could fix it because right now we're only treating symptoms and so I've been searching for the cause ever since.

Since then it's been 2 years and I'm on medicines to raise my blood pressure. They keep it stable and I don't pass out anymore but the thing is I still feel horrible. I have no energy. I'm weak and dizzy. That trip I took to Oklahoma was to see outdoor concerts and now I can barely listen to loud music because sounds and lights bother me greatly. I ache constantly. I have diarrhea every single day. My appetite differs greatly going back between severely hungry to no appetite at all. I also urinate very frequently.

I guess my question to you is...does any of this sound familiar? I'm afraid I'm going down the wrong route with all of this and as ridiculous as it seems to want to have an illness, I just want a diagnosis so that I can start to feel better....any input is greatly, greatly appreciated.

Thank you so much, Hope you're all doing great.

-Dreem

[dreemilyn]

Was my story way too long and boring, lol? Or do these symptoms not sound like Celiac at all? I got my endoscopy yesterday and was told I have duodenitis but I'm waiting for the biopsy results now. Too much waiting!

[dlp252]

No, not too long or boring, lol...I think just a lot of people on vacation probably.

Anyway, I had a lot of the things you described as a child...constipation, gastric upset, eczema as a child which was caused by wheat (see they KNEW what caused it even then), etc., etc. I didn't have the ovarian thing, but did have menstrual issues and later in life fibroids, etc.

I don't think you're far off, especially if your sister has been diagnosed! You may not have it YET but with a genetic link, you COULD have it someday.

I'm glad your scope went well.