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My Story


ameslaw84

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ameslaw84 Newbie

I haven't been diagnosed yet, but am in the process and will be going gluten free no matter what the results say. This will be long, but I wanted to share it.

This started about 2009. I was a roughly normal girl in my 20s, I do have a rare bone disorder that limits me to a wheelchair, but I was able to take care of my self all day while my husband worked. In about May of 2009 I started falling asleep in my chair everyday around 1 or 2 pm. This was extremely unlike me as I was always the one to get up at 5am and be awake till midnight. I also started not being able to do as much for myself, my body was tight and I just wasn't able to move good.

Later that year I came down with panic attacks. They got so severe that I could not leave the house. I started on medicine to try and get better, and it did help. During this time I also took naps everyday because my husband was home (he got laid off) and was able to help me into bed. I attributed it to the panic attacks tiring me out.

About the time I started the medicine I also started having bad gastro issues. I would be fine all day, then have diarrhea for a few hours. I would take something for it, but my stomach would stop working basically and I would have severe pain and throwing up. I eventually went to the doctor about the anxiety still being there, and was diagnosed with severe Vit D deficiency.

Fast forward to last year. We moved to a new state. I was still having gastro issues and sleep problems, but a new problem started, a severe itchy rash that no one could figure out. The first doctor thought it was staph, so I was on antibiotics for a while. I also was tested for a lot of auto immune and was eventually diagnosed with hypoglycemia. I had a 6 hour glucose test and my glucose went from about 70 to 156 in 30 minutes, then at the end of it dropped suddenly again. I was put on a low card diet (which I only did for a few weeks). During the low carb diet I felt great. I was able to stay away all day and was sleeping great.

My rash went away, and now came back. I am again always tired. I can wake up at 11:00am and want to be back in bed by 12. It is horrible. I also am constantly getting sick, either throwing up or having diarrhea. I went to the doctor, he has no idea what the rash is and has referred me to a gastro.

I found this site and posted on the DH board, because when I saw the rashes there it was exactly like mine. I have since called my doctor and asked if he can do the celiac panel himself so I don't have to wait. I am ready to go off gluten.

Anyway, I wanted to give my story and say hi to everyone.

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Hello...and welcome! Your symptoms sure seem to fit? I hope testing gives you answers. I want you to be aware though, that 20-30% of us test normal in our bloodwork. So..if you are tested and get a negative for Celiac..it would be good for you to go strictly gluten-free for at least 3 months to see if you note improvement.

There are many posts here about how to eat strictly gluten-free and avoid cross contamination.

Good luck! I hope you get the answers that help you sort all of this out. It's no good feeling so miserable.

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